The handbook of child life : a guide for pediatric psychosocial care [Second ed.] 9780398092122, 0398092125

Table of contents :
THE HANDBOOK OF CHILD LIFE
INTRODUCTION
CONTENTS
Chapter 1 THE STORY OF CHILD LIFE
INTRODUCTION
A Brief History of Childhood
The Health and Welfare of Children in the Modern Era
THE GROUND WE STAND ON
Pediatrics: Developmental Medicine
“Hospitalism”
An Early Play Program
Developmental Psychology
THE CHILD LIFE MOVEMENT
Emma Plank: Child Life Speaks Out
THE ASSOCIATION FOR THE CARE OF CHILDREN’S HEALTH
Child Life and the Founding of ACCH
ACCH as Identity and Context for Child Life
Parents and Families
CHILD LIFE COMES OF AGE
The Child Life Position Statement, 1979
The Child Life Council
Independence
Publications
Academic Programs
Professional Validation
A Place at the Table
CHILD LIFE IN THE LONG RUN
The Developing Role of Child Life in Healthcare
Vision to Action
REFERENCES
Chapter 2 THEORETICAL FOUNDATIONSOF CHILD LIFE PRACTICE
INTRODUCTION
Play as a Conceptual Framework
Cognitive Theories
Social Cultural Theory
Attachment Theory
Psychosocial Development
Temperament Theory
Social Learning Theory
Stress and Coping Theories
Systems Theories
SUMMARY
REFERENCES
Chapter 3 RESEARCH IN CHILD LIFE
INTRODUCTION
EVIDENCE-BASED PRACTICE ANDITS RELATIONSHIP TO RESEARCH
RESEARCH SPECIFIC TO CHILD LIFE
Professional Issues
Research on Efficacy of Child LifePrograms and Their Components
CHILDREN’S RESPONSES TO HOSPITALIZATIONAND HEALTHCARE ENCOUNTERS
Effects of Hospitalization on Children’s Behavior
Stress-Coping Responses
EFFECTIVENESS OF INTERVENTIONS USED BY CHILD LIFE
Play
Preparation
PARENT PRESENCE AND PARTICIPATIONIN THE CARE OF THEIR CHILDREN
SUMMARY AND RECOMMENDATIONS
Methodological Problems
Recommendations
REFERENCES
Chapter 4 THERAPEUTIC RELATIONSHIPSIN CHILD LIFE
HISTORY OF THERAPEUTIC RELATIONSHIPS
CONCEPTS IN THERAPEUTIC RELATIONSHIPS
Types of Relationships
Phases of Therapeutic Relationships
Theoretical Foundations
Trust
Communication Skills
Boundaries
Transference and Countertransference
TYPOLOGY OF CHILD LIFE
THE INTERFACE BETWEEN TYPOLOGY AND RELATIONSHIP
DEVELOPING RELATIONSHIP SKILLS
SUMMARY
REFERENCES
Chapter 5 COMMUNICATION AND CHILD LIFE
INTRODUCTION
LITERATURE: HEALTH COMMUNICATION AND CHILD LIFE
THE COMPLEXITY OF HUMAN COMMUNICATION
Process
Transaction
Context
Symbolic
VERBAL COMMUNICATION IN CHILD LIFE:PROBLEMS AND SOLUTIONS
Fact Inference Confusion
Allness Errors
Word-Thing Confusion
Jargon
NONVERBAL COMMUNICATION:CONSIDERATIONS FOR CHILD LIFE SPECIALISTS
Physical Appearance
Clothing
Facial Expression
Gaze
Gesture
Touch
Voice
Space
LISTENING
Listening Misconceptions
CONCLUSION
REFERENCES
Chapter 6 PATIENT- AND FAMILY-CENTERED CAREAND THE IMPLICATIONS FORCHILD LIFE PRACTICE
OVERVIEW
DEFINITION OF PATIENT- AND FAMILY-CENTERED CARE
HISTORY OF PATIENT- AND FAMILY-CENTERED CARE
BENEFITS OF PATIENT- AND FAMILY-CENTERED CARE
From the Patients’ and Families’ Perspectives
From Healthcare Providers’ Perspective
From the Institution’s Perspective
From the Healthcare Systems’ Perspective
THE ROLE OF THE CHILD LIFE SPECIALIST
BEST SERVICE/BEST PRACTICE:THE FOUR ELEMENTS OF PATIENT- ANDFAMILY-CENTERED CARE IN ACTION
Element 1. Dignity and Respect
Element 2. Information Sharing
Element 3. Participation
Element 4. Collaboration
ASSESSING CHILD LIFE PROGRAMS FOR CONSISTENCYWITH PATIENT- AND FAMILY-CENTERED PRINCIPLES
CHILD LIFE PROGRAMMING:PROVIDING CULTURALLY COMPETENT CARE
Incorporating Cultural Competence in Child Life Practice
Spirituality of Parents and Family Members
Implications for Clinical Practice
SUMMARY
REFERENCES
Chapter 7 ASSESSMENT AND DOCUMENTATIONIN CHILD LIFE
OVERVIEW
Information from the Healthcare Team
Information from the Family
Information from the Child
MODELS FOR ASSESSMENT
The Stress Potential Assessment Process
Psychosocial Risk Assessment in Pediatrics
Child Life Assessment Intervention Plan
Formal Developmental Assessment Tools
Benefits of Child Life Assessment for Other Disciplines
DOCUMENTATION
Benefits of Documentation for the Child and Family
Benefits of Documentation for the Healthcare Team
Benefits of Documentation for the Child Life Specialist
Benefits of Documentation from thePerspective of the Child Life Profession
Hospital Documentation Standards
Child Life Departmental Standards
The Child Life Consult
Workload Measurement
CONCLUSION
REFERENCES
Appendix A CHILD LIFE CONSULT/INTERVENTION RECORD
Appendix B-1 IWK CHILD LIFE SERVICES
Appendix B-2 IWK CHILD LIFE SERVICES
Appendix C COPING PLAN
Appendix D CHILD AND FAMILY ASSESSMENT STANDARD OF CARE
Appendix E SAMPLE CHILD LIFE REFERRAL INDICATORS
Chapter 8 PARADIGMS OF PLAY
FOUNDATIONS
Play as Enjoyment
Play as Learning
Play as Therapy
EXPANDED PARADIGMS OF PLAY
Play as Flow
Play as Comfort
Play as Hope
CONCLUSION
REFERENCES
Chapter 9 PSYCHOLOGICAL PREPARATIONAND COPING
INTRODUCTION AND OVERVIEW
OVERVIEW OF THE STRESS-COPINGFRAMEWORK AND RELEVANT LITERATURE
The Stress-Coping Framework
Components of the Preparation Process
An Additional Perspective on Stress and Coping:Overwhelming Stress and its Impact on the Brain
APPLYING THEORY TO PRACTICE:THE PROCESS OF INITIATING PREPARATION
Involving Team Members
Gathering Information
Assessing the Demands of the Situation
Assessing Individual Child and Family Variables
Using Assessment of Needs to Determine the Focus of Care
PROVIDING PREPARATION WITH PLANNED COPING
Providing Information and Influencing Appraisal
Attention to Language
Tools that Facilitate Preparation
PLANNING AND FACILITATING COPING
Recognizing Naturally Occurring Coping Styles
Selecting and Rehearsing Coping Strategies
Post-Procedural Evaluation
REFERENCES
Chapter 10 PROGRAM ADMINISTRATIONAND LEADERSHIP
Organizational Structure
MANAGEMENT FUNDAMENTALS
Mission, Vision, and Values
Operational Guidelines
Staffing Models
RECRUITMENT AND HIRING
Professional Identity
Clinical Advancement
ORIENTATION AND TRAINING FOR STAFF AND OTHERS
Orientation for Child Life Staff
Training and Development for Child Life Staff
Orientation and Training for Child Life Interns
Orientation and Training for Volunteers
Supervision
PROGRAM GROWTH AND DEVELOPMENT
Institutional Standards
FINANCE AND BUDGET
Sources of Funding
Allocation of Budget
PROGRAM DEVELOPMENT
Special Events
Internal Programming
External Programming
Patient Experience and Engagement
CONCLUSION
REFERENCES
Chapter 11 ONE-PERSON CHILD LIFE PROGRAMS
BEFORE YOU START
WHERE TO START?
GROWING YOUR OWN PROGRAM
CONCLUSION
REFERENCES
Chapter 12 CHILD LIFE INTERVENTIONS IN CRITICALCARE AND AT THE END OF LIFE
PARENTAL STRESSORS WITHIN THE ENVIRONMENT
STRESSORS FOR THE PEDIATRIC PATIENT
SIBLING STRESSORS
THE DYING CHILD
SUPPORTING THE DYING CHILD
SUPPORTING THE DYING ADOLESCENT
SUPPORTING THE PARENTS OF A DYING CHILD OR TEEN
PATIENT INVOLVEMENT ANDEND-OF-LIFE DECISION MAKING
SUPPORTING SIBLINGS OF A DYING CHILD
PALLIATIVE CARE
CULTURALLY SENSITIVE CARE AT THE TIME OF DEATH
SUMMARY
REFERENCES
Chapter 13 WORKING WITH GRIEVINGCHILDREN AND FAMILIES
GRIEF AS A FAMILY PROCESS
PARENTAL GRIEF
SIBLING GRIEF
TASKS OF GRIEVING
CULTURAL AND RELIGIOUS INFLUENCES
CHILD LIFE SPECIALIST COMPETENCY DEVELOPMENT
Play Facilitation Skills
Communication and Therapeutic Response Skills
Group Facilitation Skills
Advocacy and Collaboration Skills
Self-Reflection Skills
Implications for Training and Competency Development
BEREAVEMENT SUPPORT SYSTEMS
Family Support Systems
Staff Support Systems
FACILITATING PEER GRIEF IN THE HOSPITAL SETTING
BEREAVEMENT SUPPORT GROUPS
SUMMARY
REFERENCES
Chapter 14 CHRONIC ILLNESS AND REHABILITATION
INTRODUCTION
LITERATURE REVIEW
ADJUSTMENT TO CHRONIC CONDITIONS
STATE OF THE ART PRACTICE
Promoting Developmental Tasks
Facilitating Adaptation
Support Systems
Normalcy and Redefinition of Self
Adjustment over Time
Interdisciplinary Collaboration
Professional Considerations
CONCLUSION
REFERENCES
Chapter 15 THE EMERGENCY DEPARTMENTAND AMBULATORY CARE
INTRODUCTION
THE SCOPE OF CHILD LIFE OUTPATIENT SERVICE
Type of Services
Staffing Plans and Service Hours
Other Service Tasks and Assignments
EMERGENCY DEPARTMENT SPECIFIC ISSUES,PATIENT ASSESSMENT AND PRIORITIZATION
AMBULATORY CARE SETTING SPECIFIC ISSUES
TOOLS AND TECHNIQUES
DOCUMENTATION
PROFESSIONAL ISSUES
CONCLUSION
REFERENCES
Chapter 16 CHILD LIFE AND EDUCATION ISSUES:THE CHILD WITH A CHRONIC ILLNESSOR SPECIAL HEALTHCARE NEEDS
INTRODUCTION
CHILDREN WITH SPECIAL HEALTHCARE NEEDS
Gaps in Educational Services
UNDERSTANDING THE EDUCATION LAW
INDIVIDUALIZED EDUCATION PLAN (IEP)
THE ROLE OF CHILD LIFE
SOCIALIZATION AND SCHOOL
CASE STUDIES
Randy
Joey
Max
CONCLUSION
Tips for Child Life Specialists
REFERENCES
Chapter 17 CHILD LIFE IN THE COMMUNITY ANDIN OTHER NON-TRADITIONAL ROLES
INTRODUCTION
THE APPLICATION OF CHILD LIFE PROFESSIONALFUNDAMENTALS IN NON-TRADITIONAL ROLES
Child Life Competencies
Standards of Clinical Practice
Code of Ethical Responsibility
THE EDUCATION AND TRAINING OF CHILD LIFESPECIALISTS IN NON-TRADITIONAL ROLES
GATEWAY TO COMMUNITY-BASEDOR NON-TRADITIONAL ROLES
THE BENEFITS AND CHALLENGES OF MOVINGBEYOND TRADITIONAL CHILD LIFE ROLES
CONCLUSION
REFERENCES
Chapter 18 CHILD LIFE: A GLOBAL PERSPECTIVE
INTRODUCTION
PART I: CHILDREN OF THE WORLD
The Current Health Status of Children around the World
A Definition of Health and Factors That Contribute to Health
The Universal Rights of Children
The Evolution of Children’s Rights in Healthcare
PART II: THE UNIVERSAL NATURE OF SUPPORTIVEPSYCHOSOCIAL SERVICES IN HEALTHCARE
PART III: INTERNATIONAL EFFORTS TO PROMOTEPSYCHOSOCIAL CARE IN HEALTH
Taking Stock: Pediatric PsychosocialService Models around the World
PART IV: CHILD LIFE INVOLVEMENT
The Opportunities and Challenges forChild Life Practice Internationally
Preparing for International Work
CONCLUSION
REFERENCES
INDEX

Citation preview

THE HANDBOOK OF CHILD LIFE

Second Edition

THE HANDBOOK OF CHILD LIFE A Guide for Pediatric Psychosocial Care Edited by

RICHARD H. THOMPSON, PHD Professor Emeritus The College of New Rochelle New Rochelle, New York

Published and Distributed Throughout the World by CHARLES C THOMAS • PUBLISHER, LTD. 2600 South First Street Springfield, Illinois 62704

This book is protected by copyright. No part of it may be reproduced in any manner without written permission from the publisher. All rights reserved.

© 2018 by CHARLES C THOMAS • PUBLISHER, LTD. ISBN 978-0-398-09212-2 (paper) ISBN 978-0-398-09213-9 (ebook) First Edition, 2009 Second Edition, 2018

With THOMAS BOOKS careful attention is given to all details of manufacturing and design. It is the Publisher’s desire to present books that are satisfactory as to their physical qualities and artistic possibilities and appropriate for their particular use. THOMAS BOOKS will be true to those laws of quality that assure a good name and good will.

Printed in the United States of America MM-S-2

Library of Congress Cataloging-in-Publication Data Names: Thompson, Richard H., editor. Title: The handbook of child life : a guide for pediatric psychosocial care / edited by Richard H. Thompson, PH.D., Professor Emeritus, The College of New Rochelle, New Rochelle, New York. Description: Second Edition. | Springfield, Illinois : Charles C Thomas, Publisher, Ltd., [2018] | Revised edition of The handbook of child life, c2009. | Includes bibliographic references and index. Identifiers: LCCN 2017061269 (print) | LCCN 2018004336 (ebook) | ISBN 9780398092139 (ebook) | ISBN 9780398092122 (paper) Subjects: LCSH: Clinical child psychology—Handbooks, manuals, etc. | Child development—Handbooks, manuals, etc. | Child health services—Handbooks, manuals, etc. Classification: LCC RJ503.3 (ebook) | LCC RJ503.3 .H358 2018 (print) | DDC 618.92/89—dc23 LC record available at https://lccn.loc.gov/2017061269

To my family Lynn, Brenna, and Haley

CONTRIBUTING AUTHORS Kim Eury Allen, MS, CCLS, is the Manager of Child and Adolescent Life Services at the Children’s Hospital of Georgia. She has worked as a clinical Child Life Specialist for 30 years, served on the board of Child Life Council and is Adjunct Faculty at Augusta University School of Allied Health Sciences. Jacqueline Bell, BS CCLS, prior to retiring in 2014, served as the Child Life Manager at Baystate Children’s Hospital in Springfield, MA where she worked for 20 years. She started her career in 1979 at the University of Nebraska Medical Center as Child Life Manager and spent one year as Director of Child Life at the UMass Medical Center in Worcester, MA. Katherine L. Bennett, MEd, CCLS, works as the educator for the Child Life & Volunteer Services department at Monroe Carell, Jr. Children’s Hospital at Vanderbilt in Nashville, TN. She has worked in clinical child life practice, as an adjunct instructor, and has served as an Associate and Executive Editor of ACLP Bulletin/Focus. Christina D. Brown, MS, CCLS, has developed child life, creative arts, and bereavement programs at several children’s hospitals across the country, currently as the Director of Therapeutic Recreation, Child Life & Creative Arts Therapies at NYU Langone Health. Chris has assumed multiple Board and committee leadership roles within the Association of Child Life Professionals and is a recipient of the organization’s Distinguished Service Award. Eileen M. Clark, MSM, CCLS, is the Family Services Manager at Children’s Hospital of Wisconsin. Eileen has been a contributor to the Child Life field since 1989 and has assumed roles in palliative care, bereavement services, and leadership. Her volunteer efforts within the Association of Child Life Professionals include President term 2017–2018, Board of Director member term 2013–2015, Chair of Leadership Development Committee, as

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well as committee membership on the Governance Committee. Eileen also serves as a Program Reviewer for ACLP. Janet Nelms Cross, MEd, CCLS, CPXP, is the Administrative Director for Patient- and Family-Centered Care at Monroe Carell Jr. Children’s Hospital at Vanderbilt. She is a Past President of the Child Life Council. Janet is currently on the Board of Directors of the Association of Child Life Professionals (ACLP) and an ACLP Program Review Consultant. Toni Crowell-Petrungaro, MS, CCLS, is currently the Manager of Child Life Services at Sidra Medicine in Doha, Qatar. She was formerly the Academic & Clinical Specialist/Manager for Child Life at the Hospital for Sick Children in Toronto, Canada. She has over 20 years’ experience in child life in a variety of administrative, clinical, and academic roles in North America and abroad. Kathryn “Kat” Davitt, MOT, CCLS, OTR, is a clinical child life specialist at Cook Children’s Medical Center. She currently works with patients living with chronic neurological challenges and worked greater than 10 years in a rehabilitative setting. She is active in the Association of Child Life Professionals and is a past board member. Priti P. Desai, PhD, MPH, CCLS, is an Associate Professor in the Human Development and Family Science Department at East Carolina University. She formerly worked at Children’s Healthcare of Atlanta, Kennedy Krieger Institute and Johns Hopkins Children’s Center as a child life specialist and is a past executive board member of the Association of Child Life Professionals (formerly the Child Life Council). LeeAnn Derbyshire Fenn, MSc, CCLS, was an Associate Clinical Professor, Department of Pediatrics, McMaster University, Hamilton Ontario, Canada, as well as a former Director in the Child Life Studies Diploma Programme in the Faculty of Health Sciences at McMaster University. Laura L. Gaynard, PhD, CCLS, has been an Adjunct Associate Professor, Department of Family and Consumer Studies, University of Utah since 1989. She was formerly the director of child life departments in several major teaching hospitals and served on the Child Life Council Board and the Child Life Certifying Committee.

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Joy Goldberger, MS, was formerly the education coordinator at the Johns Hopkins Children’s Center in Baltimore, MD. Her career has included a variety of clinical and leadership roles, most significantly initial work with infants and toddlers, collaboration in a range of contexts with colleagues within the Child Life Council and the former ACCH, and as coordinator of the internship and other training programs at Hopkins. Melissa Hicks, MS, CCLS, LPC, RPT-S, is a Counselor/Child Life Specialist at a charter school in North Carolina. She co-founded Wonders & Worries, formerly worked at the Johns Hopkins Children’s Center, Children’s Healthcare of Atlanta and Camp Sunshine and has served as President, Director and Certification Chairperson of the Association of Child Life Professionals. Maggie Hoffman is a founder of the New York Self-Determination Coalition (NYSELFD.org). NYSELFD promotes self-determined lives for people with developmental disabilities. Maggie was the Director of Project DOCC—Delivery of Chronic Care. Ellen C. Hollon, MS, CCLS, is a Lecturer in the Child Life Specialist Program for The University of Akron. She was former director of the child life programs at Children’s Medical Center Dallas, Rainbow Babies & Children’s Hospital in Cleveland, and at Rush Medical Center in Chicago. She is a past President of the Child Life Council (now ACLP) and has served the organization in multiple capacities over her 40-year career. Peggy O. Jessee, PhD, CCLS, is Professor Emeritus at The University of Alabama where she previously served as Director of the Child Development Center and Chair of the Child Life Program. She is Adjunct Faculty at Western Governors University, past Chair of the Child Life Council’s Certification Committee, and recipient of the Child Life Council’s Distinguish Service Award. Beverley H. Johnson is President and CEO of the Institute for Patient- and Family-Centered Care, a non-profit organization founded 25 years ago. Since then, Bev has provided leadership, technical assistance, and consultation for advancing the practice of patient- and family-centered care to over 300 hospitals, primary care clinics, health systems, federal, state, provincial agencies, military treatment facilities, and community organizations in both the United States and Canada.

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Dene G. Klinzing, PhD, CCLS, is Professor Emeritus and was Professor of Individual and Family Studies and former Dean of the College of Human Resources at the University of Delaware. She served as Co-editor of Children’s Health Care with Dennis R. Klinzing and was a board member of ACCH. Dennis R. Klinzing, PhD, is Professor Emeritus and was Professor and Chair of the Department of Communication Studies at West Chester University. He served as Co-editor of Children’s Health Care with Dene G. Klinzing and was a former board member of ACCH. Chantal K. LeBlanc, MHS, CCLS, is a Professional Practice Leader and Coordinator at the IWK Health Centre, and a Lecturer in the Child Life and Pediatric Psychosocial Care Program for McMaster University. In her 25 years in the child life profession, she has taken on many different clinical, teaching, volunteer, research and leadership roles, including several positions on the Canadian Association of Child Life Leaders and Association of Child Life Professionals’ Boards. Kathleen McCue, MA, LSW, CCLS, is now retired after a 43-year career in child life. She most recently was director of the Children and Family Program at The Gathering Place, a community-based non-profit organization providing support, empowerment and education to individuals and families touched by cancer. She has directed two hospital-based child life programs and served as president and secretary of the Association of Child Life Professionals. Sharon M. McLeod, MS, CCLS, CTRS, is retired Senior Clinical Director of the Division of Child Life and Integrative Care at Cincinnati Children’s Hospital Medical Center following twenty-four years of service. She formerly led child life programs at Vanderbilt Children’s Hospital in Nashville, TN and Swedish American Children’s Hospital in Rockford, IL and is a Past President of the Association of Child Life Professionals, formerly the Child Life Council. Toni F. Millar, MS, CCLS, is the Vice President of Patient Centered Care at NewYork-Presbyterian Hospital where she previously served as the Director of Child Life and Patient- and Family-Centered Care Services. She formerly worked as a child life specialist, and became the Director of Child Life Family Services at Rainbow Babies and Children’s Hospital of University Hospitals of Cleveland. She is a Past President of the Association of Child Life Professionals.

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Anne Luebering Mohl, PhD, CCLS, serves as Managing Editor of the ACLP Bulletin and Focus, and also coordinates webinars for the Association of Child Life Professionals. She worked clinically in child life at Johns Hopkins Children’s Center in Baltimore, MD. Melodee Moltman, MS Ed, CCLS, is Professor Emeritus of PsychologyChild Life at Utica College in Utica, New York. Melodee was a student in the Wheelock summer program in London and later served several times as the program’s coordinator. She has presented papers and presentations on international issues in child life in China and Saudi Arabia. She consulted and taught child life in Kuwait. Sheila L. Palm, MA, CCLS, has been the Manager/Director of the Child Life Department at Children’s Hospitals and Clinics of Minnesota for over 40 years. She has served as the President and Treasurer of the Association of Child Life Professionals and is a member of the Child Life Program Development and Review Team. Lois J. Pearson, MEd, CCLS, has been a child life specialist for 38 years, primarily in the pediatric intensive care unit of Children’s Hospital of Wisconsin, and most recently started a program for children of adult patients at Froedtert Hospital in Milwaukee. She is also on the faculty of Edgewood College in Madison, WI, School of Education, Child Life Program and serves on the ACLP Archives Management Group. Cynthia Scherr Rosen, BA, BS, AE-C, is the Coalition Program Manager for the Asthma Coalitions of Queens and Long Island at the American Lung Association. Prior to that she worked for 18 years in the North Shore-LIJ Health System educating and advocating for children with special healthcare needs and their families to bridge the gap between the hospital, home and school. Teresa A. P. Schoell, MA, CCLS, launched the Child Life Services Program at Rochester General Hospital, in Rochester, NY in 2009 as a one-person child life program, growing it to a two-specialist team in 2015. She also serves in a variety of volunteer roles within the Association of Child Life Professionals. Linda Skinner, BEd, is the former Director of Child Life (Retired) at the IWK Health Centre in Halifax, Nova Scotia. Linda has served as a Board Member of the Association of Child Life Professionals and the Canadian Association of Child Life Leaders.

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Charles W. Snow, PhD, is Professor Emeritus at East Carolina University (ECU) where he taught in the Department of Child Development and Family Relations. He developed and directed the BS and MS Child Life degree programs at ECU. Vickie L. Squires, MMEd, CCLS, is the Director of Child Life and Child Development Services at The Children’s Hospital of San Antonio in San Antonio, TX. She has worked as a clinical Child Life Specialist for more than 35 years in two hospitals and has served on the Executive Board of Child Life Council (now ACLP). She has been the Child Life Instructor on Faculty at Texas State University, Department of Family and Child Development in San Marcos, TX since 2004. Richard H. Thompson, PhD, is Professor Emeritus at The College of New Rochelle where he served as Dean of the School of Arts & Sciences for 11 years. He was formerly a faculty member in Child Life and Dean of Child and Family Studies at Wheelock College in Boston and is a Past President of the Child Life Council. Joan C. Turner, PhD, CCLS, is an Associate Professor of Child & Youth Study at Mount Saint Vincent University, Halifax Canada. Active in child life research, writing and ACLP committees, her most recent publications include The Pips of Child Life: Early Play Programs in Hospitals (2014) and The Pips of Child Life: The Middle Years of Play Programs in Hospitals (2016) both co-edited with Civita Brown of Utica College. Joan completed her clinical work at Winnipeg Children’s Hospital Child Life Department (1987–1998). Patricia Weiner, MS, is a consultant to the Parent Advisory Council of the Association of Child Life Professionals and is an Educational Consultant to the Making Headway Foundation. She is a NICU, Child Life, Special Education and Healthcare Consultant to professionals and parents. After 25 years of child life, special education and administrative work at the North Shore-Long Island Jewish Health System on Long Island, NY, she became the founding Director of the Child Life Program at Bank Street College of Education. Claire M. White, MS, CCLS, is an Assistant Professor and Co-Chair of the Child Life and Family Studies Department at Wheelock College, Boston, MA, where she has been a faculty member since 1994. She formerly served as a child life specialist at Massachusetts General Hospital for Children and Boston Children’s Hospital.

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Jerriann Myers Wilson, MEd, CCLS, retired after 43 years of child life work with 34 years as Child Life Director at The Johns Hopkins Hospital. She is Associate Professor Emerita, Pediatrics, at the Johns Hopkins University School of Medicine, is a Past President of the Association for the Care of Children’s Health, and was the first President of the Child Life Council. Susan Wojtasik, MA, is the former director of the Child Life Departments at Bellevue Hospital Center in New York City and Schneider Children’s Hospital of Long Island Jewish Medical Center. She collaborated in the development and teaching of the first introductory courses in Child Life at Bank Street College of Education and later held an adjunct faculty position in the Child Life Master of Science program at that institution.

INTRODUCTION t has been said that the moral test of a society is how it treats its most vulnerable citizens. Those who enter the field of child life daily encounter those in our society who are among the most vulnerable . . . vulnerable because of their age and their ways of interpreting the world, vulnerable because of their physical circumstances, vulnerable because of the unfamiliar they encounter, vulnerable at times because of additional barriers such as language, poverty or prejudice. Yet, the child life specialist understands that each individual, despite the vulnerabilities he or she may bring to an encounter, also brings strength and resiliency. The task of the child life specialist is to build upon those strengths to minimize individual vulnerability and maximize the growth of the individual. The goal of this text is to assist in this process, drawing upon the expertise of leading figures in the field to help provide child life specialists, and other allied health professionals, with the knowledge and skills they will need to accomplish this important task. I wrote the preceding paragraph of this introduction a decade ago for the First Edition of The Handbook of Child Life. Much has changed over that period of years, yet much remains the same. Children and families in healthcare settings and beyond continue to face challenges through their daily encounters. As the research covered in Chapter 3 indicates, despite our best efforts to provide quality, sensitive psychosocial care to children and their families, they remain vulnerable (though not inevitably so!) to lingering aftereffects. This may be due, in part, to continuing changes in the delivery of healthcare services, administered at a rapid pace, assisted by remarkable technological advancements. As a result, children and families may pass through healthcare environments quickly and return to the home and community where follow-up care continues. While the reduction of time spent away from home is a goal of sensitive care, it must be accompanied by necessary information and supports to foster optimal levels of wellness—physically and emotionally. There have been changes in technology, changes in the funding of healthcare for our children (with far too many still denied access to afford-

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able care), and changes in the responses healthcare organizations and providers have made to adjust to this new medical landscape. Part of what has remained constant over time is the willingness and capacity of child life specialists to adapt, to grow and to accept the challenge of providing excellent psychosocial care in the face of changing circumstances. But, child life has also changed over the past decade in many very important ways, enhancing its educational requirements, branching out into new areas, incorporating technology into clinical work, accessing information to make deliberate, informed decisions about practice following an evidence-based model. As the profession of child life has changed, so has its leading professional organization. When work began on this revision, we had the Child Life Council (CLC). With an eye to the increased professionalism of the field, and a wish to communicate directly to others the nature of the organization, CLC became the Association of Child Life Professionals (ACLP). This change has been incorporated into the text, with references to CLC made in historic contexts and as the publisher of key works cited in reference lists, and to ACLP as we move into the future. The goal of this revised edition is to help prepare child life specialists to deliver the highest level of care to children and families in the context of these changing realities. The challenge to authors of the text has been to review their original work and provide updates reflecting new knowledge and practice. I am grateful to each of the authors who accepted this challenge with dedication and perseverance. Each chapter has been substantially revised, based not only on updated information and adaptations in practice, but also based on the helpful feedback we received in response to the original work. Authors of several chapters invited additional colleagues, new to this project, to join their work. We are pleased to welcome Katherine Bennett, Eileen Clark, Toni Crowell-Petrungaro, Chantal LeBlanc, Toni Millar, and Sheila Palm to our team. Particular thanks go to Janet Cross, who agreed to join the team preparing Chapter 6, “Patient- and Family-Centered Care,” taking the lead role on revision of this chapter, as well as on Chapter 10, “Program Administration and Leadership.” To further reflect the changing circumstances of child life today, especially growth into newer areas requiring entrepreneurial skills, two additional chapters have been incorporated: Chapter 11, “One-Person Child Life Programs” by Teresa Schoell, and Chapter 17, “Child Life in the Community and in Other Non-Traditional Roles” by Missi Hicks and Kathleen McCue. As I am grateful to each of the authors for the work they have done preparing this manuscript, they in turn would like to acknowledge individuals who contributed their insights, knowledge and critiques in the preparation of the text. This includes Elizabeth Anderson, Benjamin Broxterman,

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Carol Goetz Buck, Lisa A. Ciarrocca, Kelli Ferguson, Carol Fisher, Julie Albright Gottfried, Dena Henson, Joanne Hochu, Meghan Kelly, Amber Lafferty, Allie Leidy, Ivana Man, Susan Marchant, Emily Murray, Kelly Pulford, Anita Pumphrey, Laila Ramji, Kelly Raymond, Rose Resler, Matthew C. Schoell, Kate Shamszad, Hailey Simpson, Maryl Sommer, Kathy Suzuki, Emily Synnott, Gina Fortunato Tampio, Belinda Thayn, Shani Thornton, Elizabeth Welch, Leslie Marnett Welch, and Cora Welsh. Finally, each of the authors of the text recognizes that child life is, and always has been, a community—one through which we share, collaborate, learn from and inspire each other. As we prepared this text, we were aware of the legacy we have been given by those who preceded us in the field, but are sadly no longer with us. I, for example, am ever grateful to my mentor, colleague and friend, Gene Stanford, who helped me to appreciate the power of reaching out to others through writing. The authors of this text were, as a group, saddened by the loss of our dear co-author and colleague, LeeAnn Derbyshire Fenn, who died during the preparation of this book. The authors, therefore, would like to acknowledge and celebrate the influence of the individuals noted below who have inspired our lives in child life! RICHARD H. THOMPSON IN MEMORIAM

• • • • • • • • • • •

Kris Angoff Mary Barkey Peg Belson Rosemary Bolig T. Berry Brazelton Mary McLeod Brooks Joan Chan LeeAnn Derbyshire Fenn Myra Fox Carol Hardgrove Muriel Hirt

• • • • • • • • • • •

Liz Kampe Joan Kingson Kathie Moffatt Evelyn Oremland Myrtha Perez Madeline Petrillo Emma Plank BJ Seabury Anne Smith Ruth Snider Gene Stanford

CONTENTS Page Contributing Authors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv Chapter 1. The Story of Child Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Susan Pond Wojtasik and Claire M. White 2. Theoretical Foundations of Child Life Practice . . . . . . . . . . . . . . . . 34 Joan C. Turner 3. Research in Child Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Richard H. Thompson, Katherine L. Bennett, and Charles W. Snow 4. Therapeutic Relationships in Child Life . . . . . . . . . . . . . . . . . . . . . 104 Kathleen McCue 5. Communication and Child Life . . . . . . . . . . . . . . . . . . . . . . . . . . . 136 Dene G. Klinzing and Dennis R. Klinzing 6. Patient- and Family-Centered Care and the Implications for Child Life Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161 Janet Nelms Cross, Priti P. Desai, Sheila Palm, Jacqueline L. Bell, Beverley H. Johnson, and Sharon M. McLeod 7. Assessment and Documentation in Child Life . . . . . . . . . . . . . . . . 195 Ellen Hollon, Eileen Clark, Chantal LeBlanc, and Linda Skinner 8. Paradigms of Play . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 230 Peggy O. Jessee and Laura Gaynard xix

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9. Psychological Preparation and Coping . . . . . . . . . . . . . . . . . . . . . 268 Joy Goldberger, Richard H. Thompson, and Anne Luebering Mohl 10. Program Administration and Leadership . . . . . . . . . . . . . . . . . . . . 317 Janet Nelms Cross, Toni F. Millar, and Jerriann Myers Wilson 11. One-Person Child Life Programs . . . . . . . . . . . . . . . . . . . . . . . . . . 346 Teresa A. P. Schoell 12. Child Life Interventions in Critical Care and at the End of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 392 Lois J. Pearson 13. Working with Grieving Children and Families . . . . . . . . . . . . . . . 420 Chris Brown 14. Chronic Illness and Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . 446 Melissa Hicks and Kathryn Davitt 15. The Emergency Department and Ambulatory Care . . . . . . . . . . . 492 Vickie L. Squires and Kim Eury Allen 16. Child Life and Education Issues: The Child with a Chronic Illness or Special Healthcare Needs . . . . . . . . . . . . . . . . . . . . . . 527 Patricia L. Weiner, Maggie Hoffman, and Cynthia Scherr Rosen 17. Child Life in the Community and in Other Non-Traditional Roles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 550 Melissa Hicks and Kathleen McCue 18. Child Life: A Global Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . 572 Priti P. Desai, Toni Crowell-Petrungaro, Melodee Moltman, and LeeAnn Derbyshire Fenn Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 611

THE HANDBOOK OF CHILD LIFE

Chapter 1 THE STORY OF CHILD LIFE S USAN P OND WOJTASIK AND CLAIRE M. WHITE INTRODUCTION

A Brief History of Childhood onsideration of the lives of children and the meaning of childhood were incidental or absent in the history of Western civilization until Phillipe Aries, a French medievalist, published Centuries of Childhood: A Social History of Family Life, in 1962. Perhaps a cause of this disinterest was the ephemeral nature of children, their vulnerabilities, their fragile lives before the modern era. Childbirth and infancy were perilous in the human story until modern times, and Aries’s rendering of the nursery lives of children is harrowing. Complications at birth, family poverty leading to neglect or abandonment, inadequate or inappropriate food, accidents and poor hygiene were common factors in infant mortality. A myriad of infectious diseases that afflicted all ages and had no cure were especially devastating in the early months and years of life. Available records indicate that one in every three babies did not survive the first year of life, and thereafter one in six died before the age of five (Lancy, 2015). Aries wrote his book with a purpose. He argued that medieval children who survived the nursery period were simply incorporated into the ribaldry, games and work of the adult world. It seemed to Aries that an important part of childhood was missing: those years that Freud would call “latency,” between the end of life in the nursery and the beginning of what we would now call adolescence. These are the years that the seventeenth century intelligentsia saw as time for filling the blank slates of youthful minds with experiences that would make them free and reasonable men. Girls, it should be

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noted, might benefit incidentally from this philosophy, but service to the needs of men continued to be the role of women in society at that time. In this era of enlightenment, childhood began to enjoy a status in the human story that would increase in the late eighteenth and early nineteenth centuries when children were thought to possess a primal innocence that could be instructive to adults and needed to be protected and cherished. Despite serious flaws in his work, Aries remains a foundational figure in historical studies of childhood. His Centuries of Childhood provoked an awakening of interest that has ushered in a stream of scholarship that both challenges and elaborates on his work (Colon, 1999; Heywood, 2001; Cunningham, 2005; Lancy, 2015). In contemporary western culture, according to the anthropologist David Lancy, attention has shifted from focus on the needs of societies’ oldest members to those of the child. Yet despite this apparent shift, we still do not serve children well, with nearly half the children under eighteen in the United States living in families in or near poverty (National Center for Children in Poverty, Columbia University: 2014) Child life is a profession that draws on the insights of history, sociology, anthropology and psychology to serve children and families in many critical stress points in their lives, but especially when they are ill, injured or disabled and encounter the hosts of caregivers and institutions that collaborate to make them well. Children and their families can become overwhelmed by the task of understanding and navigating the healthcare environment. It is the job of child life professionals to provide care and guidance in these negotiations, to serve as culture brokers, interpreters of the healthcare apparatus to family and child and the child to medical professionals.

The Health and Welfare of Children in the Modern Era Although theories of the contribution of microbes to the spread of disease and studies leading to improved infant nutrition occurred in the eighteenth century, a specific focus on children’s health in the United States did not take hold until the mid-nineteenth century when the first children’s hospital began caring for patients in Philadelphia in 1855 (Brodie, 1986). At about the same time scientific interest in the causes and cure of diseases in children, as well as interest in their general welfare, led to the academic institution of pediatric medicine. Nursing schools and social welfare agencies also have their roots in the middle to late nineteenth century and were agents of change in promoting the well-being of children (Dancis, 1972; Brodie, 1986; Colon, 1999). The Industrial Revolution, which caused the migration of thousands of families from rural areas in this country and thousands more from abroad,

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caused a crisis in the cities. Men, women and children were paid small wages for long hours of work. Families lived in hovels without access to clean food or water and often without even a semblance of sanitation. Disease epidemics were common, and large numbers of babies succumbed to the lethal “summer diarrhea” every year (Colon, 1999). In the midst of this misery, philanthropists, health professionals and politicians responded with investigations and programs to ameliorate the damages poverty causes to the developing child. But it was not until 1938 that the Fair Standards Act set limits on the age at which children could be employed (14) and the number of hours per day they could work (10). There were limits to this law. Children of any age could be required to work without restrictions if employed by their parents or parent substitutes. The United Nations Declaration of Human Rights in 1948 encouraged laws that considered the best interests of the child in custody proceedings and other legal procedures. As a deeper understanding of the nature of childhood was probed by professionals interested in the development of intelligence, emotional response, and social relationships, considerations of children’s welfare included these elements. These aspects of child development have engaged the energies of child life specialists since the early decades of the twentieth century. “THEY PLAY WITH YOU HERE” Play is a truly universal trait of childhood. David F. Lancy The story of child life begins in the early twentieth century when large numbers of children began to be hospitalized. Children were understandably terrified at being in an unfamiliar place where many children cried and where everyone was a stranger. The children were there, of course, for their own good, for the treatment of illness or accident that would restore them to health. There was, however, no way for the children to comprehend this. They often faced empty days in which there was nothing to do but wait for the next dreaded examination or treatment. The children were so obviously miserable that in some instances recommendations were made to institute a program of activities to engage the children’s interest when they were admitted and while they waited in their cribs for what would happen next. Critics of non-medical activities for children argued that a child sick enough to be in the hospital was too sick to play. Surely the hospital, the place where grave illnesses and impending death were the very reasons for

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being there, was no place for frivolity, for games, for laughter. But children need play like they need air to breathe, no matter what their circumstances. Play is fundamental to the very structure and meaning of childhood. This is true even in the most onerous of circumstances, perhaps especially in times of great distress. Frank McCourt (1996), in his memoir Angela’s Ashes, describes his childhood as miserable, immersed in poverty, neglect, the death of siblings, drunkenness, living conditions of almost unimaginable squalor. He was furious at it. Yet when he and his brothers played at romps and adventures he could say with unbridled enthusiasm, “We had a grand time!” Ultimately in the hospital setting the preponderance of opinion about play was on the side of the child, and programs of play and education were introduced into pediatric hospital care as early as the 1920s (Rutkowski, 1986). Play leaders taught volunteers and nursing students how to communicate with children primarily through play, helped children understand the strange ways of the hospital and the people who work there, and prepared children for what was going to happen to them in their own hospital stay. These play leaders, with their volunteers and students, helped normalize the hospital experience. There was a sense of urgency in this work based on an understanding that childhood is a time of such rapid development that not a day should go by without attention to the basic imperative to grow. As was noted in an article appearing in 1937: Children come to us at a formative period. They are developing rapidly, and each day brings vast changes in them. We can do dreadful things to a child during even a twenty-four-hour stay, and we can change his entire outlook on life for better or worse during an eight-months’ stay in a hospital. Any program of patient’s care naturally begins with excellent medical and nursing care. In addition to that we must safeguard him in every way, physically and mentally. His day should approach the day of a normal child as nearly as is possible under the circumstances. (Smith, 1937, p. 1)

By 1950, ten hospitals in the United States and Canada had implemented play programs on their children’s wards (Rutkowski, 1986). The stage was set to address systematically the multiple emotional insults experienced by children when they are hospitalized. New scientific discoveries and methods of treatment continually change the face of pediatric medicine, and child life practice has developed to meet the changing needs of sick children. Preparation for medical encounters, supporting family-centered care, pain management, coping with grief and loss are as fundamental to child life practice today as is play. Nevertheless, play continues as a central experience in the hospital lives of children. It is a means of coping, a means of healing.

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Play liberates laughter. It blows up and deflates, builds up and knocks down. It takes bits of this and that and makes a new thing. It imitates life and elaborates on it. It can be quite earnest and intense when a child is laboring to come to grips with something important, or it can be as flippant and irreverent as a thumb of the nose. We value play in the hospital not just because it makes children happy; it makes children well. It is a child’s fundamental tool for mastering challenging experiences, providing opportunities to “play out” emotionally-laden hospital experiences and come to terms with them. This playing out is analogous to the work we adults do when we think through a problem, play with an idea, imagine a series of scenarios before taking action. It is with this kind of play that we create who we are and who we will become. THE GROUND WE STAND ON Humanizing healthcare for children was passionately embraced by child life practitioners, but the success of such a revolutionary undertaking depended on validation of its presuppositions by others. Without the scientific enquiries and the advocacy for children’s health and well-being by the relatively new division of medicine called “pediatrics,” a stable context for child life programs could not exist. The development of interest in the behavioral aspects of pediatrics opened the way for making hospitalization a more childfriendly experience (Bakwin, 1941; Spitz, 1945). The insights of early to midtwentieth century child development specialists and child psychologists provided a firm theoretical rationale for child life practice (Erikson, 1963; Winnicott, 1964; Piaget & Inhelder, 1969; Bowlby, 1982), and the structure of the multidisciplinary organization that came to be known as the Association for the Care of Children’s Health added the impact of many voices from nursing, social work, pediatric medicine and psychiatry to help sustain and focus the ongoing work of child life specialists (Brooks, 1975).

Pediatrics: Developmental Medicine In the late nineteenth century, a sufficient body of knowledge existed about the health maintenance and the diseases of children for a new division of medical practice devoted exclusively to the care of infants and children to be established. Pediatrics in the United States has a very short history indeed, its academic status beginning with the appointment in 1860 of Abraham Jacobi as professor of infantile pathology and therapeutics at New York Medical College. Although Jacobi remained a general practitioner all his life,

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he had an unusual interest in and knowledge about the diseases of children and was a great advocate in the field of children’s health and welfare. His interests were not limited to the diagnosis and treatment of disease but were wide-ranging, taking on issues of proper nutrition, preventive care, and the social aspects of illness. He began a tradition of concern for children’s health that has had a profound and enduring effect on the well-being of children (Abt, 1965; Dancis, 1972; Colon, 1999). In the first half of the twentieth century, city hospitals were filled with children sick from the poverty and filth that corrupted their food and drink just as certainly as they were sick from rheumatic fever, tuberculosis, diphtheria, polio, meningitis and other diseases (Dancis, 1972; Colón, 1999). The advent of pediatrics brought scientific methods to the study of childhood illnesses, but there was still little in the formulary to overcome them. The germ theory was embraced enthusiastically leading to improved standards of cleanliness and methods of infection control (Brenneman, 1931; Bakwin, 1941; Dancis, 1972). However, most immunizations and all antibiotics were unavailable to civilian populations in the United States until the end of World War II in 1945. When children became sick from infectious processes, the medical response was an intensification of infection control measures: strict isolation or quarantine, and, in the case of babies, infrequent handling and meticulously aseptic surroundings (Brenneman, 1931). Medical approaches had, however, been dramatically unsuccessful in the care of infants in hospitals and foundling homes. These babies frequently failed to gain weight or to reach normal developmental milestones. They were unusually susceptible to infections. Death rates were high. In a report given before the American Pediatric Society in 1915, H. D. Chapin, a prominent pediatrician and social activist, presented his findings that infant mortality rates in ten urban institutions ranged from thirty-one to seventy-five percent (Spitz, 1945).

“Hospitalism” René Spitz popularized the term “hospitalism,” as a description of this condition of severe physical and developmental decline (1945). Something in the environment was lethal, to be sure, but he didn’t think it was primarily pathogens. His solution was the antithesis of the accepted hospital practice of scrupulous asepsis, and this interface of medical and psychological approaches to health and illness fostered the opening of pediatrics to the idea that social and environmental factors, as well as medical management, influence a child’s response to treatment. Spitz made careful observational studies of infants in a foundling home in order to test his hypothesis that it was precisely the absence of mothering

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and environmental stimulation that led to this alarming susceptibility to disease, physical wasting, and emotional withdrawal. Spitz’s studies of the developmental decline in infants raised in even the most well-meaning and hygienic foundling home, as compared with those raised in families or in an institution where their prisoner mothers could be with their babies every day, have been meticulously recorded on film (Spitz, 1947). Pictures of infants in the foundling home must surely be some of the most haunting film footage in the entire library of child studies. The babies raised in the foundling hospital were emaciated, listless, unsmiling, scarcely able to move. Pictures like these are seen these days only where there is social devastation. Spitz’s studies were carried out on babies institutionalized for conditions “other than sickness” (Spitz, 1945). Harry Bakwin, a pediatrician in hospital practice working with sick children, shared Spitz’s bias toward humanizing care and was to initiate unlimited parental visits to infants. He also encouraged house staff to develop friendly relationships with the children they treated. The term “T.L.C.” (tender loving care) was coined to characterize this relationship (Dancis, 1972). According to Bakwin (1941), hospitalism was “looked on as a result of repeated infections” (p. 30). Strict infection control policies were instituted which isolated infants from human contact and sensory stimulation. To lessen the danger of cross infections, the large open ward of the past has been replaced by small, cubicle rooms in which masked, hooded and scrubbed nurses and physicians move about cautiously so as not to stir up bacteria. Visiting parents are strictly excluded, and the infants receive a minimum of handling by the staff. Within recent years attempts at isolation have been intensified, and a short time ago there was devised a box equipped with inlet and outlet valves and sleeve arrangements for the attendants. The infant is placed in this box and can be taken care of almost untouched by human hands. (p. 31)

Bakwin questioned whether these precautions might not be harmful to the child. Infants confined in hospitals present a fairly well defined clinical picture. A striking feature is their failure to gain properly, despite the ingestion of diets which in the home are entirely adequate for growth. Infants in hospitals sleep less than infants who are at home, and they rarely smile or babble spontaneously. They are listless, apathetic and look unhappy. The appetite is indifferent, and food is accepted without enthusiasm. Infections of the respiratory tract which last only a day or two in a home often persist for months in a hospital. Return home results in defervescence within a few days and a prompt and striking gain in weight. (p. 31)

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A satisfactory medical solution never was found for the foundling hospitals. Most were ultimately shut down, and homeless infants were raised in the community by foster families, a solution initially suggested by Chapin (Dancis, 1972). During the struggle to resolve the issues of infant deaths in institutions, however, a great deal was discovered about the needs of infants and, by inference, of all young children for special attention to environmental factors both personal and spatial, in their psychosocial development. With the exception of infant wards like Bakwin’s at Bellevue Hospital which permitted mothers to tend to their children, early twentieth-century hospitals were more receptive to the inclusion of volunteers and “play ladies” who could function as “substitute mommies and daddies” than they were to the inclusion of real parents. There were, of course, reasons other than hospital rules that precluded or limited parental visiting, but by many accounts hospitals found parents a nuisance: disruptive of routines and upsetting to children, as well as sources of disease. Even D. W. Winnicott (1964), the champion of mothering on every other count, drew the line at the hospital door. He saw visits as compromising medical care by the practice of parents giving children foods “completely upsetting the investigation on which future treatment is to be based” (p. 222). He was concerned that visiting would “undermine the selfless giving of the sister (nurse) who gives all her care and attention to the child only to be usurped by the parent during visiting hour. And there is always a lot of crying when parents come and sad leave-taking when they go.” Winnicott further notes that: It would not be so bad if the mothers were contented to go in and see their children for a few minutes and then go out again; but mothers do not feel like this, naturally. As will be expected, they go into the ward and use the whole time that is allowed. Some seem to be almost ‘making love’ to their child; they bring presents of all kinds, and especially food, and they demand affectionate response; and then they take quite a long time going, standing waving at the door till the child is absolutely exhausted by the effort of saying good-bye. And the mothers are quite liable to go to the Sister on the way out and say something about the child’s not being warmly enough clad or not having enough to eat for dinner or something like that.” (p. 223)

Hospitals would look elsewhere, to something less threatening to the hospital system than parents, for help in easing the distress of children.

An Early Play Program Like a stranger in a foreign land who suddenly hears his own language, the child reaches out to play as an assurance of friendliness in a bewildering situation.

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At about the same time that Spitz was carrying out his studies and Bakwin was describing the psychosocial shortcomings of pediatric wards, the first hospital play programs were inaugurated. Although archival material on the origins and early history of child life programs has only recently been accumulated and is still being collected, we have a report on the first years, 1932–1937, of the development of a play program at Children’s Memorial Hospital in Chicago written by Anne Smith, its director (Turner & Brown, 2014; Grissim, 2014). This was a remarkably vigorous program in which play leaders were asked to respond to the distress of children admitted in large groups for tonsillectomies and to individual children undergoing major surgeries; to provide daily activities for children on the wards, many of them long-term patients; to help with parent visiting by setting up toy displays to educate parents on what is suitable to bring to their children; and to set up a program for outpatients receiving bronchoscopies (Smith, 1937). In addition to their work with patients and parents, the director and play leaders taught play techniques to nurses and student nurses on the Children’s Memorial staff. University students and volunteers often joined these classes about play in the hospital and benefited from the clinical supervision of their work with children. To further the normalization of the hospital environment, the play director facilitated the development of a school program for kindergarten and early elementary grades; built and staffed a library; and invited special volunteers to visit with nature projects, handicraft projects and entertainments. The program was put together by the play director on the basis of clearly identified needs, starting with the most obvious: pandemonium on the days when groups of about fifteen children ages two to twelve were admitted for tonsillectomies. Smith described this scene, noting that, “Often their crying and screaming could be heard all down the halls. In their terror, some bit and kicked” (p. 3). The play director engaged these children in simple games, stories and songs immediately after they were admitted and again the next day as they waited to be taken to the operating room, one by one. Because children were said to go easily under anesthesia and to wake up smoothly, the play program was considered a success. As part of their training in play, nurses ran these groups once their efficacy was established. Group play was highly valued by the play leaders. They saw that children were reassured by the company of each other. Play without equipment was also highly valued, possibly because toys were hard to come by and, in certain of these situations, encumbering. Play was not dependent on toys. Nurses were taught to use play while doing their usual routines and treatments with children. Again, simple finger games, songs, guessing games and stories were planned to engage the child all day long.

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Emphasis was placed on the program’s teaching efforts. The entire nursing staff, students and volunteers were all made comfortable with using play as a primary means of communicating good will. The importance of play in the child’s daily life was strongly endorsed by Smith, who wrote, “Like a stranger in a foreign land who suddenly hears his own language, the child reaches out to play as an assurance of friendliness in a bewildering situation” (p. 2). There were no set protocols for this work. Group play was the choice for children newly admitted for surgery and during the waiting time before surgery. Individual projects worked well for some long-term patients. From an eclectic repertoire of activities play leaders could experiment until they found the ones best suited to the task at hand. According to Smith, children were offered opportunities to play in order to prevent their being returned home “marked and scarred psychologically, retarded mentally, or rendered social misfits because of the neglect of stimulating interests and happy cooperation with other children” (p. 9). This sentiment echoes that of the psychoanalytically-oriented pediatricians describing the fate of infants who survived long periods of institutional care. As Spitz (1945) states in the opening comments of his article on hospitalism, “physicians and administrators ... discovered that institutionalized children practically without exception developed subsequent psychiatric disturbances and became asocial, delinquent, feeble-minded, psychotic, or problem children” (p. 54).

Developmental Psychology Piaget and Erikson Mid-twentieth century concern for the psychological responses of children’s exposure to war, separation from parents, bodily illness, and confinement in hospital, led to investigations and theoretical constructs about the emotional life of children (Bowlby, 1952; Freud, A., 1952; Prugh, Staub, Sands, Kirschbaum, & Lenihan, 1953). These theories of relationships, perceptions of reality, behaviors, and feelings and how these change over a child’s lifetime are of fundamental importance to child life studies. Observations of his own children’s infant activities led to Jean Piaget’s elegant theory of the development of intelligence (Piaget & Inhelder, 1969). Piaget’s work, together with Erik Erikson’s interpretations of psychosocial development, has given us a picture of what and how infants, children and adolescents think and feel. The role of the senses in first learning, the limits of cognition at various ages, the importance of play as an interpretive and problem-solving activity have illuminated and made accessible to students of

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development the physical, mental and emotional lives of children that could only be guessed at in earlier times. The major themes have been laid down for us by Erikson and Piaget. Erikson (1963) took the ancient “ages of man” model to construct an epigenetic theory of psychosocial development from birth to death. Far from the disinterest of the ancients in the first seven years of life, this period was the most interesting to those clinicians and scholars who were drawn to psychoanalytic interpretations of childhood. Infants and toddlers were especially interesting. The root meaning of the word infant is voiceless, speechless. For much of Western history the child was considered virtually speechless until the age of seven. The following is from a medieval manuscript describing the ages of man. The first age is childhood when the teeth are planted, and this age begins when the child is born and lasts until seven, and in this age that which is born is called an infant, which is as good as saying not talking, because in this age it cannot talk well or form its words perfectly, for its teeth are not yet well arranged or firmly implanted. . . . After infancy comes the second age . . . and this age lasts until fourteen. (Aries, 1965, p. 21)

We might say that the imperfect speech described here is a metaphor for the persistence of imaginative thought in the speech of young children which to this day confounds adults whose mode of thinking is fully rational. It is at points of dissonance like this that child life becomes the interpreter of the medical system to the child and of the child to his medical caregivers. Piaget has taught us to listen to children in a new way, to observe their language in play and to tease out the internal logic of their imaginative constructs. We can then see with utmost seriousness and sympathy how children gradually develop the capacity to separate fantasy from reality, to see something from the point of view of another, to manipulate symbols instead of real objects, to distinguish between proximity and causality, to learn that something hidden may not be gone forever.

John Bowlby, James and Joyce Robertson John Bowlby began his work on attachment and separation in the early 1950s. Bowlby was interested in the theoretical aspects of the observed reactions of young children to brief separations from their mothers or mother surrogates. These observations provided some of the first clinical evidence for the considerable emotional complexity of infants and toddlers. His work, drawing upon ethological studies as well as clinical research in human bonds,

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led to his conclusion that human attachment, most commonly seen in mother-infant bonds, but also prevalent throughout the life span, constituted a primary and singular component of human life independent of other needs or gratifications. This is a fundamental part of the human condition and, as we have seen in the foundling hospital stories, is necessary for life. This need for social intimacy has been extraordinarily important to the understanding of human nature. Interruptions in love relationships, particularly the early ones, pose significant challenges to healthy psychological development (Bowlby, 1982). A close associate of Bowlby’s in his early years of research was James Robertson. Robertson and his wife, Joyce, filmed children’s responses to brief separations from parents under a variety of circumstances. Of special interest to child life studies is the film, A Two-Year-Old Goes to the Hospital (1953). A child is hospitalized for several days for a hernia operation. Her parents can make only a few visits, and she expresses the full range of feelings and behaviors associated with separation and the fear of abandonment: protest, despair, detachment. We do not see in this child the misery of the foundlings, but traces of their distress flicker across the face of this otherwise vivacious toddler. To add the stresses of separation to the stresses inherent in hospitalization is to place a great emotional burden on a very small child. These studies led to the suggestion that elective hospitalizations be postponed until after the age of three years. THE CHILD LIFE MOVEMENT

Emma Plank: Child Life Speaks Out In 1962, Emma Plank’s publication, Working with Children in Hospitals, described the work of the Child Life and Education Department at Cleveland Metropolitan Hospital. She called her staff “child-care workers” and vividly describes the substance of their clinical tasks in the hospital. There is resistance to generalization in this text. Plank depends on the anecdote to show what the child-care worker can do. One child with no family ties needs an especially close and trusting relationship; a gang of small boys, far from needing the permissive atmosphere usually desired on the ward, is gotten firmly in hand; a child’s misunderstanding is untangled; a four-yearold is prepared for amputation of her leg. She is careful to note the individual differences of children’s responses to illness and hospitalization and to stress initial and ongoing assessments of these responses. It is through knowing the child and developing a carefully

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thought out and continually reviewed plan of care that child-care work will succeed. There are some general principles here that need to be applied in an individual manner. For very young children, the fear of abandonment is more alarming than the illness itself or its treatment. Plank applauds hospitals that provide rooming in for mothers with small children. She also applauds lengthening visiting hours and notes the comforting attention staff members give to children who cry when the time is up. The maintenance of trust in relationships is reinforced by truth-telling no matter how difficult that may be. Parents need to tell their child if they are leaving even though this will be upsetting. Child life has techniques for reassuring children that their parents will come back. In preparing a child for a procedure, it is important to introduce coping strategies to deal with pain rather than telling the child it won’t hurt. The child’s day should be as normal as possible with opportunities for play and schooling away from medical interventions. Having a structure and plan for the day reassures children that they are in a reasonable world even when the day’s plan includes going to x-ray or surgery. To illustrate the importance of these arrangements to a child’s well-being, Plank (1962) says the following: It is nice to have entertainments during holidays or at regular intervals, such as a weekly movie or puppet plays, given by a volunteer service. But a healthy child’s day is not built around entertainment, and a sick child’s should be even less. Children do not need diversion to get well, but rather opportunities to participate with all available emotional and intellectual energy in daily living. (p. 73)

Plank continues by stating the goals of a child life and education program: 1. To provide a setting for children of all ages where they can find play and activities that interest and absorb them, counteract their loneliness and anxiety, and help to turn the passivity of the patient into the activity of the growing child. 2. To give children a chance to interact with others away from their cubicle, to form relationships to adults as well as to other children, to help them work through the basic fears inherent in illness and hospitalization, to reassure them about or prepare them for procedures and surgery. 3. To help school-age children to continue with some of their schoolwork while hospitalized. 4. To arrange specific opportunities for play under direction of a skilled worker where fantasies or traumatic experience in relation to hospitalization can be played out and worked through.

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The Handbook of Child Life 5. To provide an area where parents can visit and play with their child as part of an ongoing program. At the time when parents have to leave, the child finds himself with others and can be more easily reassured. 6. To help children at mealtimes to accept hospital food or limiting diets, by providing food groupings at mealtimes with a chance for conversation and informality. (p. 73)

Plank speaks of the common experiences and special problems that need to be assessed and planned for in each hospital admission by the “staff.” She does not mean by this the child life and education staff alone but the whole of pediatrics. She is convinced that the child’s needs will be served only when there is a coordinated effort and ease of communication among all professionals working with children. The work of the person on the child-care side of the interface between normalization and medical treatment must be included in the total care of the child.

What’s in a Name? We will speak throughout this document of “child life” as the designated name of the professional service and its practitioners whose goals are to help children engage and subdue fears, misconceptions, anger and profound sadness that hospital experiences provoke, to protect and enhance their developmental integrity, and, whenever possible, use the experiences of illness and hospitalization to build strengths rather than compromise them. But as Rubin (1992) pointed out, the eclectic nature of the staff and programs, made it hard to find a name inclusive enough to take into account all that child life does. Recreation therapy was too narrow and misleading, so was teacher, so was play lady, although that’s what the children often call the women among us to this day. What the programs and the people who staffed them were called both reflected and determined what people thought of them. For the child, the program and its people would always be play providers, sources of pleasure and safety. This is no mean thing. D.W. Winnicott (1964), pediatrician and child analyst, was to go so far as to say, “Play is the continuous evidence of creativity, which means aliveness” (p. 144). The child analysts and psychologists understood play to be both the child’s language and means of learning about and interpreting the world. Cut off from play, the young child is lost in an unintelligible environment. But the word “play” is a two-edged sword, appealing to children and people knowledgeable about the intellectual and psychological development of children, but easily denigrated by administrators on tight budgets and medical staff on tight schedules.

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Environments When Doctor F. C. Robbins hired Emma Plank to organize the Child Life and Education Department at Cleveland Metropolitan Hospital, one of his goals was to change the drab, stark spaces in which the children stayed. The huge wards with only utilitarian furnishings provided an efficient environment, but hardly an appealing one. Entrusted with improving the hospital environment for children, Plank carved playrooms out of the available space where children could engage in meaningful activities away from medical care. Here the task of living was fully engaged. In its 1960 report and recommendations for the care of hospitalized children, the American Academy of Pediatrics stated that “all pediatric units should have a playroom stocked with appropriate supplies of toys, games, books. The playroom should be placed near the nurses’ station for ease of supervision or, if that wasn’t feasible, there should be an effort made to recruit volunteers to supervise the playroom.” We have seen that in the early play program at Children’s Memorial Hospital, 1932–1937, play without equipment and play in any setting where the children could be gathered seemed to be the norm. There is no mention of a special room for play. The Academy’s recommendation for space and supplies indicates an acknowledgement of the importance of play in the daily lives of children in the hospital. It takes not only space and equipment but also a staff whose attention can be invested in using the playroom to help children cope effectively with the hospital experience. The state of playrooms that have not been managed by child life has often been a sorry story. Volunteers could seldom take on the full-time responsibility of supervising a playroom. Without supervision, toys were often inappropriate, broken or lost. Children felt neither safe nor fulfilled in what could often be a state of chaos, without boundaries or rules. As child life matured it assumed responsibility for playrooms and equipment, and the Academy, in its 1985 chapter on child life, acknowledged playroom management as one of the tasks of child life. A well-stocked and wellmanaged playroom is far more than a place to play. It also offers sanctuary, a safe place away from hospital routines and treatments. It’s a safe place to just hang out and fool around or talk it over or play it out. In the 1980s great emphasis was placed on making the entire pediatric unit feel like a safe and friendly place. Walls were brightened, pictures were hung, the stark, white uniform was no longer required of nurses, treatment rooms were hung with mobiles and instruments were made less conspicuous. In some institutions, quite elaborate efforts were made to bring the huge scale of the hospital down to human size, to child size. Many of these envi-

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ronments were well designed to make children feel both comfortable and pleasurably stimulated. But adults often mistakenly assume that they know what children like and will, for instance, apply liberal doses of cartoon characters to corridor walls and the windows of nurses’ stations. Anita Olds (1986), designer of children’s hospital environments, warns that primary colors can become strident if overused in the assumption that “that’s what children like.” THE ASSOCIATION FOR THE CARE OF CHILDREN’S HEALTH

Child Life and the Founding of ACCH Child life was formative in the creation of the multidisciplinary organization ultimately known as the Association for the Care of Children’s Health (ACCH) whose members were dedicated to promoting and providing developmentally-based psychosocial care to children in hospitals. ACCH throughout its history fostered a veritable explosion of services for children and families in healthcare settings. Principle among these are support for child life programs and the development of family-centered care programs. In 1965 a group of 40 professionals working in play and education programs in 23 hospitals scattered throughout the United States and Canada gathered in Boston to discuss “Patient Recreation in Pediatric Settings” (Brooks, 1975). Although this title would suggest a modest agenda, these participants were in fact inaugurating a revolution in pediatric healthcare. Emma Plank (1962), speaking of her own program at Cleveland Metropolitan General hospital stated, “We asked ourselves how we can best serve the child who is about to enter the hospital; what we can do for him when he is there; and how to help him to return to normal living” (p. 2). This would serve well as the definition of the work we still strive to do. By the end of this first conference there was agreement about the need to create an organization that would provide a forum for discussion of issues in their own program areas and would advocate for attention to the developmental needs of hospitalized children. Representatives from six participating hospitals were chosen as founders, and an interim committee was chosen to study the establishment of a permanent organization and to plan a conference for the following year (Brooks, 1975). Because their numbers were small and because, although essential to the well-being of children, their work was not central to the mission of medical care, the founders were persuaded that their hope of achieving their goals could best be served by inviting the participation of other pediatric professionals.

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At the second conference in 1966 representatives from pediatrics, surgery, nursing and social work joined in the discussions of psychosocial issues and formed, with the original group of recreation, play and education specialists, an association briefly named The Association for the Well-Being of Hospitalized Children and Their Families. Although this first name has the virtue of being an almost perfect description of the organization’s purpose, it was a mouthful. After two other failed attempts at naming, the organization became the Association for the Care of Children in Hospitals (ACCH)—until its mission expanded and it became the Association for the Care of Children’s Health (also ACCH). By the time of the third conference, in Philadelphia, more potential participants applied than could be accommodated. The hard work of the founders and their multidisciplinary colleagues had provided the groundwork for a functional organization, and 1967 saw officers and a board of directors elected, by-laws accepted, and standing committees formed. The first board meeting was held at the home of T. Berry Brazeleton, M.D., an early champion of the goals of the organization. “After a long debate on whether to include pediatricians, Brazeleton was especially pleased at the eventual decision to include them.” (Turner & Brown, p. 91). ACCH membership increased dramatically, and conference sites moved across the continent from their east coast origins to the Midwest and on to record-breaking attendance in San Francisco in 1970. In 1972, the meetings were held in Canada for the first bilingual conference (Brooks, 1975). In 1975, ACCH drew members from forty-five states and the District of Columbia, all ten Canadian provinces, and several foreign countries. Membership had grown from 40 in 1965 to 1,200 in 1975. The number of child life programs also saw a substantial increase from10 in 1950 to 170 in 1975 (ACCH, 1984).

ACCH as Identity and Context for Child Life The richly multidisciplinary environment of ACCH, which included nurses, psychologists, social workers, physicians, and, in 1978, parents, was an excellent medium for the work of self-definition for child life. Child life specialists always formed a large percentage of the ACCH membership and consistently held leadership positions in the organization. Rapid growth of ACCH in the sixties and seventies reflected a corresponding growth in child life programs. Because child life practice was the clearest embodiment of the goals of ACCH at this time, its quarterly journal Children’s Health Care, annual conference presentations, and local membership chapters were filled with contributions from the ranks of child life pro-

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fessionals. ACCH provided a forum and a publishing house for child life initiatives, and child life benefited from the organization’s linkages to the Society of Pediatric Psychology, the Academy of Child Psychiatry (now the American Academy of Child and Adolescent Psychiatry, AACAP), and the American Academy of Pediatrics (AAP). Child life leaders represented ACCH on the Academy of Pediatrics’ Hospital Care Committee.

Parents and Families The inclusion of parents in the hospital care of their children has been incremental and hard won, with pockets of resistance all along the way. Even when parents were allowed to visit on a fairly open basis, they often felt as dislocated as their children, not knowing what was permitted and what was not. But gradually parents began to take ownership of their rights to be with their children and to be a primary decision maker in their children’s care. Indeed, the term “visitor” has become obsolete when discussing the presence of parents in the hospital. In 1978 ACCH opened its membership to parents of sick children. By the 1990s parents had assumed leadership roles in ACCH and joined as full partners in efforts to change healthcare policies and practices to include consideration of how life is really lived by families with a child with multiple healthcare requirements. Child life has always made common cause with parents, advocating for extended visiting and overnight sleeping accommodations in the early days, and working with parents and siblings whose daughter or brother will live their lives in the context of extended healthcare. Parents as members of advisory boards and as teachers of medical personnel have raised the consciousness of the medical community to the complex dimensions of raising a chronically ill child at home and at school, as well as in the hospital. In 1992 ACCH published a set of comprehensive guidelines for the hospital care of children and their families ( Johnson, Jeppson, & Redburn, 1992). It undertook to articulate the hospitals’ responsibilities in providing psychosocial care for both children and families and is a landmark in the development of family-centered care. Initiatives in family-centered care continue unabated to enable families to be full participants in their sick child’s care and to enable the healthcare system to understand and respond to needs for change in the delivery of that care.

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CHILD LIFE COMES OF AGE

The Child Life Position Statement, 1979 During the 1970s child life began in earnest to develop the philosophical, theoretical and ethical ground of its work, to define the necessary skills and knowledge of its practitioners and to determine educational requirements for practice. In 1979, The Child Life Position Statement was drafted and ratified by ACCH. This had been preceded by more than a decade of discussion and debate resulting in the consolidation of the many aspects of child life work into a single statement and the many tasks of child life workers into a manyfaceted but single job description. This position statement was a hard-won consensus that rested securely on child life’s past and became the cornerstone of all future conceptual developments. It contained a rationale for child life interventions based on the observed emotional damage to children caused by stress factors, interruptions of development, regression and the loss of self-esteem. Essential components of child life programs were listed as abundant play opportunities for self-expression, mastery and understanding of medical experiences; familiarization with the hospital milieu; maintaining family relationships and providing empathic support to parents; the provision of essential life experiences; and providing opportunities to retain self-esteem and appropriate independence. It was believed that, with appropriate support, a child’s hospital experience might even be a positive one, providing an opportunity for enhanced development. The Position Statement also included staffing standards and job descriptions for child life personnel. To be a child life specialist required a bachelor’s degree; supervised experience in a healthcare setting; knowledge of medical terminology; supervisory skills and competencies in growth and development, family dynamics, play and activities, interpersonal communication, developmental observation and assessment, the learning process, group process, behavior management and the reactions of children to hospitalization and illness (ACCH, 1979). The child life program needs to be autonomous, have a budget for staff and supplies, be given adequate space for activities and storage, and assume responsibility for training and supervising volunteers in its service. Child life staff should be on an equal footing with other clinical team members.

The Child Life Council During the sixties and seventies, child life members met as a study section at ACCH annual meetings to talk among themselves about their mis-

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sion, identity, policies, and practices. Times allotted for these discussions were short and sometimes in conflict with other study sections that members were interested in attending. Frustration ran high. There was just too much to do at the one time in the year when everyone could get together. As in the first years of ACCH, child life brought together an interdisciplinary task force to consider the feasibility of establishing a Child Life Council under the auspices of ACCH. Child life felt the need to return to one of its original goals in calling its first meeting in 1965: to provide a forum for the discussion of experiences and problems in their own program areas. In 1980, Gene Stanford, a leader in the field, challenged the fledgling organization to enter adulthood by achieving three things: a clearly defined role, clearly defined qualifications, and control of who can enter the profession. The Child Life Council was established in 1982 to take on these and other professional issues. At its first meeting the Council elected officers, approved by-laws and held two days of meetings prior to the ACCH annual conference. In order to be eligible for Council membership, child life professionals were required to maintain their membership in ACCH. As an early and highly symbolic act of independence, the Child Life Council revised and reissued the Child Life Position Statement under its own imprimatur in 1983. Child life continued to benefit from the rich mix of professionals and parents that comprised ACCH, and it was ACCH that secured and administered the grant that made child life’s major research project possible. ACCH served as both a repository and publishing house for the voluminous literature coming out of the Council and from various clinical programs. A collection of articles entitled, Child Life: An Overview, published by ACCH in 1986 was both a recapitulation of accomplishments in the second decade of child life’s existence and a spur to consolidate and move on. Guidelines for the Development of Child Life Programs, which articulated the fundamentals of establishing programs, was published in 1984, revised in 2006. Thompson and Stanford’s Child Life in Hospitals, published by Charles C Thomas, Springfield in 1981, put flesh on the bones of policies and procedures by providing vivid pictures of best practice in the living, breathing corridors of real hospitals.

Independence Over time, as Council membership increased and the demands of professionalization intensified, the focus on child life issues began to overshadow interdisciplinary issues. In 1992 the Child Life Council (CLC) became incorporated as a free-standing organization. Membership in ACCH was now an option rather than a requirement for Council members.

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CLC continued work begun in the seventies on formulating a theoretical and philosophic base; articulating a code of ethics; defining professional competence; describing a method of program evaluation and dealing with issues of membership, by-laws, and meeting the standards of regulatory bodies. Much of the material in the Official Documents of the Child Life Council published in 1994 and updated in 2011 was developed in the eighties. These documents (Standards for Academic and Clinical Preparation Programs in Child Life, Standards for Clinical Practice, Child Life Competencies, Code of Ethical Responsibilities, and Child Life Philosophic Base) were published by CLC and stand as the self-proclaimed authority for holding child life accountable for its actions. The annual child life conference agenda expanded to make room for presentations on program development; clinical practice; and administrative issues such as documentation in the medical record and data collection; staff/patient ratios; program reviews; how to pursue certification; and how to continue to welcome people from diverse but similar academic and professional backgrounds into the ranks of child life professionals.

Publications Since the profession established its independence, publications have continued to foster its growth. Today the Association of Child Life Professionals (ACLP), the most recent incarnation of the Child Life Council, publishes a quarterly newsletter, Bulletin/Focus, which highlights professional and clinical issues and is distributed to nearly five thousand child life members and affiliates. A web-based Forum list serve is a networking tool that enables peer-topeer discussions via e-mail of professional and clinical issues. The ACLP web site is a compendium of information about child life and includes sections on education, certification, membership and child life publications. Council members have on-line access to archival materials and blogs. Kathleen McCue’s How to Help Children Through a Parent’s Serious Illness (published in 1994, revised and updated in 2011) grounded child life specialists in a new aspect of professional practice in family-centered care. Her companion book for very young children, Someone I Love is Sick, was published in 2009. Melissa Hicks edited a collection of essays, Child Life Beyond the Hospital, in 2008, and in 2014 Joan Turner and Civita Brown published a series of essays on the origins of hospital play programs: The Pips of Child Life, an invaluable resource for a deeper understanding of our roots.

Academic Programs Educational programs to train child life practitioners began early in the profession’s history. Course offerings related to working with hospitalized

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children are found in Wheelock College Catalogs of the 1960s. Specific programs of study (or majors) in child life were formally established in the 1970s. Among the first colleges and universities to offer child life programs are the following: Wheelock College, Boston, MA, 1972; Mills College, Oakland, CA, 1977; and Utica College of Syracuse University, NY, 1978. Several other academic settings offering formalized training programs were established throughout the 1970s and 1980s. Many of the educators in these first academic programs began their work as colleagues of the early hospital-based child life pioneers. They themselves then became pioneers in developing formal child life education programs. Among these early educators were Muriel Hirt, Evelyn Oremland, Gene Stanford, Evelyn Hausslein and Richard Thompson. The strengths-based curriculum, teaching strategies and pedagogy developed in their programs were key elements in shaping the profession’s academic and clinical practice core. In 1992 the Child Life Council approved The Standards for Academic & Clinical Preparation Programs in Child Life. The standards were revised in 2001to reflect the growth of the profession and expansion of practitioner responsibilities and to serve as a guide for anyone wishing to pursue academic or clinical training in child life. In 2003 the CLC listed 32 programs that offered courses in child life studies. Educator and internship supervisors met together each year at the annual child life conference, but it was difficult to schedule enough time for indepth discussions of critical issues at these fully programmed events. Wheelock College organized and hosted an Academic Summit following the national conference in Boston in 2009. The goals of the summit were “to identify best practices in the education of child life students; promote excellence in child life education; build partnerships between CLC leadership, clinical sites and academic institutions that support child life education, training and professional development; and set an agenda to encourage critical thinking, research and the publication of scholarship in the field of child life” (Thayer, 2009). Workshops at the summit resulted in recommendations in the following areas: Education: assure that academic programs are of the highest quality, are comprehensive (core curriculum) and facilitate professional skill development and assessment. Training: move towards a standardized curriculum that teaches child life skills essential in all clinical settings; increase training possibilities for field supervisors.

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Scholarship: strengthen the evidence-based research and scholarship skills of child life specialists and foster professional dialogue about evidence-based practice. (p. 7)

In 2010, CLC approved recommendations for undergraduate and graduate curriculum content and key elements for internship training. Among these were recommendations regarding the qualifications of instructors teaching courses in child life which included that they have 1) a minimum of a master’s degree or post-baccalaureate advanced training in child life, child development or closely related field and 2) the credential as a Certified Child Life Specialist (CCLS) (CLC, n.d.). In 2015, through self-identification prior to the implementation of these standards, there were 7 academic programs offering a master’s in child life, 13 programs offering a master’s degree with a concentration or emphasis on child life, 39 offering undergraduate majors in child life or a concentration, certification or diploma, and 72 programs offering one or more classes in child life (M. Roloff, personal communication, June 17, 2015).

Professional Validation Gene Stanford’s challenge to the profession in 1980, to establish a clearly defined role in healthcare, define qualifications for performing that role and establish control over who can enter the profession, heralded a movement toward the development of tools to demonstrate child life’s validity as a valued, indeed indispensable, contributor to the well-being of children in stressful healthcare situations, especially in hospitals. In addition to ensuring competence in practitioners, the profession also develops tools to measure the content and quality of programs and engages in peer reviews. To test the efficacy of child life interventions, research was undertaken, most notably a research study sponsored by ACCH in 1983.

Credentialing Certification of child life specialists was a high priority on the Council agenda beginning in the 1980s. The lack of appropriate education and experience could compromise the work of even the most well-meaning practitioner. The establishment of competencies, requirements for completion of a basic curriculum in child studies, and development of properly supervised internships were all geared to assuring that children and families would be well served by the profession. In 1986 a credentialing tool was approved, and the Child Life Certifying Commission was established to examine the credentials of aspirants to the

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profession. This was a cumbersome, time-consuming and somewhat subjective process. In 1998 the credentialing process changed to certification by examination. Successful candidates certified by either method could use the initials, CCLS (certified child life specialist), in addition to their academic degree as part of their professional designation. By 2004 everyone was required to be certified by examination. In 2011 the CLC approved a change in the eligibility requirements to sit for the child life certification exam. Beginning in 2013 one of the 10 required courses must be a child life course taught by a certified child life specialist. The Child Life Certifying Committee (CLCC) developed a number of policy and procedural materials that made clear the content areas to be covered in this course: child life documents; scope of practice; family-centered care; impact of illness, injury and healthcare on patients and families; therapeutic play; and patient preparation for healthcare examinations and treatments. In 2013 the Council announced changes to requirements in both academic and internship programs, mandating 600 internship hours beginning in 2019. Accreditation processes for both academic and internship programs were launched in 2015, assuring that programs meet minimum standards and competencies.

Program Review Guidelines: Self-study and Peer Review The CLC piloted a set of questions in outline form called the Program Review Guidelines in the U.S and Canada in 1985 and published the document in 1987. The process of self-study and peer review which it inaugurated was an important stepping stone toward reaching program standardization. The Guidelines were inclusive of a broad spectrum of program elements and helped participants in the self-study determine which of these possible elements were included in their programs and which they would hope to include as their programs developed. In addition to this self-study, ACLP (the revised name for CLC) offers hospitals the opportunity to have their child life programs reviewed by experienced child life professionals who offer an informed opinion on programmatic strengths and opportunities for growth. This review provides an occasion for child life to show the hospital leadership what they are doing and what could still be done for children and families.

Research: The Phoenix Project The credibility of any organization depends on its demonstrated efficacy. Although there have been innumerable accolades of the good child life does for children and families, to survive in the scientific marketplace of ideas

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requires more than anecdotal acclaim. Richard Thompson’s twenty-year review of the research literature on hospitalized children has both bolstered the idea that psychosocial services were necessary to children in hospitals and shown up the paucity of well-designed studies in this area (Thompson, 1985). A research project under the auspices of ACCH with John Wolfer, a psychologist, as Principal Investigator was initiated in 1983 to examine the efficacy of child life interventions in reducing stress and accelerating healing. This project was carried out at the newly-opened Phoenix Children’s Hospital in Arizona. Control data were collected from children and families before the child life team began its work. Subsequently, children were provided with a range of child life services and compared with children hospitalized during the control period. The research focused on “helping children understand and master potentially upsetting healthcare experiences” (Wolfer, Gaynard, Goldberger, Laidley, & Thompson, 1988). On most measures, the children receiving child life interventions responded more favorably than did children who did not have access to child life. The continuing importance of research to child life practice was demonstrated through the Council’s Position Paper on Evidence-Based Practice written and approved in 2010. It affirms that “child life professionals recognize that in child life practice it is essential to integrate research evidence-based practice statements with professional expertise and patient preferences when making clinical decisions” (CLC, n.d.). Several evidence-based practice statements have been published by CLC including statements on preparation, therapeutic play and child life assessment, each of which is available at the ACLP website.

A Place at the Table Child life has made contributions to and received affirmation from several important outside organizations. The Canadian Pediatrics Society passed a resolution in 1978 recommending that “all hospitals that have pediatric units have organized facilities for play available under the direction of a child life worker for both inpatient and outpatient facilities.” In the 1980s, the Joint Commission on the Accreditation of Healthcare Organizations invited the Council to send a child life representative to contribute to its deliberations on the development of standards for the psychosocial care of pediatric patients in hospitals. A child life professional has served as a liaison member of the American Academy of Pediatrics Committee on Hospital Care since 1985. This committee’s 1985 recommendations include an entire chapter on child life and describe it as an essential component in the comprehensive care of sick children in pediatric units. In

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the same year the academy commented in its journal Pediatrics, that child life is “one of the most progressive, useful and humane programs to be initiated in recent years” (p. 467). CHILD LIFE IN THE LONG RUN

The Developing Role of Child Life in Healthcare In hospital practice of late, the length of a patient’s stay has been shortened, inpatient admissions present more complex and severe medical problems, more beds are filled by chronically ill children hospitalized for episodic treatments, and more surgeries and procedures involving increasingly advanced technologies such as organ transplantation are done in specialized inpatient areas. The kinds of health issues confronting pediatrics today— chronic diseases, congenital and neonatal anomalies, multiple trauma, mental and developmental problems—comprise what is called the new morbidity. Success in treating many of the children suffering from these morbidities depends on complex technology and frequent medical interventions. Family life becomes medicalized. The lives of children whose afflictions are not amenable to cure need support and palliation to sustain them through their everyday lives. The challenges to families living with the new morbidly are challenges to child life professionals as well. Child life specialists increasingly staff outpatient areas, emergency rooms, and day surgery programs. In large institutions where there are neonatal and pediatric intensive care units, transplant units and special treatment units such as dialysis and burn centers, child life is present. Outreach efforts are addressed to children on home care protocols, in hospice programs, in community-based healthcare centers, in programs addressing school re-entry, and in private practice.

Vision to Action Thirty years ago, a group of child life administrators, clinicians and educators elected from the Council membership met to grapple with issues of what the future might hold for child life specialists. This process was called Vision to Action, and the proceedings were shared with the general membership at the Child Life Council Conference when it next convened. Conference members were invited to continue the discussion at this meeting. Given the continuing crisis in healthcare costs and the shortened length of in-hospital stays, what was the conventionally trained child life specialist to do?

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In the spring of 1997, Mission, Vision and Values statements were published in the Child Life newsletter (Fenn,1997). The Values Statement basically reaffirms the values child life has endorsed from its inception: an understanding of and respect for infants, children, youth and families, their individuality and complexity, their diversity and commonality; an understanding of the need for play as an essential part of childhood, as a healing modality in itself and as a method of child life practice; an understanding of the importance of therapeutic relationships; an understanding of communication as a task of interpretation of the child and family to the hospital and the hospital to the child and family; an appreciation for the theoretical foundations of practice, for professional collaboration, for professional standards of practice and research. The Mission Statement affirms the profession’s intent to provide meaningful interventions in traumatic situations involving children and their families which will mitigate the impact of the trauma and preserve basic developmental pathways and family support systems. The Vision Statement reinforces and expands the Mission Statement, noting that, “The philosophy and practice of child life will be applicable to any healthcare setting and transferable to other environments or situations in which the potential for infants, children and youth to cope, learn and master is placed at risk” (p. 1). At its annual meeting in 2016, the Council announced its vision of the future to “reflect the evolution of the profession in order to better meet the needs of the diverse population served and to reflect professional value and integrity in the healthcare community” (CLC, n.d.). In 2017 the Child Life Council celebrated its 35th anniversary by announcing its new identity and name: The Association of Child Life Professionals (C. Maguire, personal communication, June 1, 2016). As child life professionals, we aim to increase community awareness of our professional capabilities to make certain that every child and family in the healthcare system knows about and has access to child life services. Instead of facing diminished opportunities to give service as the number of inpatient pediatric beds has declined over time, the child life profession undertakes the challenge to serve the growing number of children and families in other settings who need support and empowerment. Because of child life’s demonstrated adaptability within healthcare, it seems reasonable to expect that the education, experience and training of child life specialists enables them to mitigate the distress of children in a number of situations beyond healthcare. Their training and experience could benefit homeless families in shelters, children in family court and abuse proceedings, children traumatized by terrorist activity or its threat, children living in the midst of domestic and community violence (see Chapter 17).

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In the summer of 2016, after a series of killings in which children were both victims and witnesses, AAP President Benard Dreyer, M.D., announced a new initiative “to confront the twin epidemics of violence and intolerance in the lives of children, adolescents, and their families.” Attending to the grief and anger these and other serious social justice issues cause our children may be part of our expanded calling. Wherever child life is practiced, its essential core of service remains the same: to provide opportunities for play, to protect developmental pathways, to form therapeutic relationships with children and their families and to advocate for advances in the welfare of children. Child life, formed as the nucleus of ACCH in 1965 by 40 intrepid women, has grown by 2016 to 4,900 child life specialists in over 450 programs. In our demonstrated capacity to maintain traditional programs and establish new ones, in our resilience and creativity in overcoming obstacles, in our ability to establish and meet goals, it is clear that child life has evolved into a mature and fruitful profession over its fifty-year history. REFERENCES Abt, I. (1965). History of pediatrics. Philadelphia: W. B. Saunders. American Academy of Pediatrics. (1960). Committee on hospital care: Care of children in hospitals. Evanston: Author. American Academy of Pediatrics. (1985). Committee on hospital care: Child life programs for hospitalized children. Pediatrics, 76, 467–470. American Academy of Pediatrics. (1993). Committee on hospital care: Child life programs. Pediatrics, 91, 671–673. American Academy of Pediatrics. (2000). Committee on hospital care: Child life services. Pediatrics, 106, 1156–1159. American Academy of Pediatrics. (2014). Committee on hospital care and Child Life Council: Child life services. Pediatrics, 133, 1471–1478. American Academy of Pediatrics. Announcing initiative to confront violence in children’s lives. Retrieved from http://www?.aapublications.org/news/2016/07/08 /Violence070816 Aries, P. (1965). Centuries of childhood. New York: Vintage Books. Association for the Care of Children’s Health. (1984). Guidelines for the development of child life programs. Washington, DC: Author. Association for the Care of Children’s Health. (1986). Child life: An overview. Washington, DC: Author. Association for the Care of Children’s Health. (1979). Child life position paper. Washington, DC: Author. Balmes, T. (2010). Babies. (film). Studio Canal: Focus Features. Bakwin, H. (1941). Loneliness in infants. American Journal of the Diseases of Children, 63, 30–40.

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Bowlby, J. (1982). Attachment and loss: Retrospect and prospect. American Journal of Orthopsychiatry, 52, 664–678. Bowlby, J. (1952). Maternal care and mental health. Geneva: World Health Organization. Brennemann, J. (1931). The infant ward. American Journal of the Diseases of Children, 43, 577–584. Brodie, B. (1986). Yesterday, today and tomorrow’s pediatric world. Children’s Health Care, 14, 168–173. Brooks, M. (1975). The growth and development of ACCH. Journal of the Association for the Care of Children in Hospitals, 4, 1–7. Canadian Pediatric Society. (1978). Resolution passed on the child in hospital. Ottawa, Ontario: Author. Child Life Council. (1983). Child life position paper. Rockville, MD: Author. Child Life Council. (1987). Program review guidelines. Rockville, MD: Author. Child Life Council. (1994). Official documents of the child life council. Rockville, MD: Author. Child Life Council. (1997). Operating principles: Mission, vision and values. Rockville, MD: Author. Child Life Council. (2001). Child life position paper. Rockville, MD: Author. Child Life Council. (2001). Directory of child life programs. Rockville, MD: Author. Child Life Council. (2001). Standards for academic and clinical practice programs in child life. Rockville, MD: Author. Child Life Council. CLC Position Statement. EPB. Retrieved from http://www .childlife.org/ files/CLCPositionStatementEPB.pdf Child Life Council. Eligibility Requirements. Retrieved from http://www .childlife.org/Certification/CertificationEligibility/cfm Child Life Council. Faculty Credentials. Retrieved from http://childlife .org/StudentsInternsEducators/AcademicProfessionals/Faculty Credentials/cfm Child Life Council. Rebranding. Retrieved from http://childlife.org/About /Rebranding.cfm Child Life Council. Strategic Plans. Retrieved from http//childlife.org/About /Strategic/Plan.cfm Colon, A. R. (1999). Nurturing children. Westport, CT: Greenwood Press. Cunningham, H. (2005). Children and childhood in Western Society since 1500. Harlow, UK: Pearson Education Limited. Dancis, J. (1972). History of a pediatrics department. New York: New York University School of Medicine, Department of Pediatrics, Bellevue Medical Center. Erikson, E. (1963). Childhood and society. New York: Norton Press. Fenn, L. (1997). Mission, vision and values statements for the child life profession. Child Life Council: Bulletin, 14, 1–2. Freud, A. (1952). The role of bodily illness in the mental life of children. In The psychoanalytic study of the child. New York: International Universities Press. Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R. H., Redburn, L., & Laidley, L. (1990). Psychosocial care of children in hospitals: A clinical practice manual. Bethesda, MD: ACCH.

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Heywood, C. (2001). A history of childhood. Cambridge, UK: Polity Press Hicks, M. (2008). Child life beyond the hospital. Rockville, MD: Child Life Council. Johnson, B., Jeppson, E., & Redburn, L. (1992). Caring for children and families: Guidelines for hospitals. Bethesda, MD: ACCH. Lancy, D. (2015). The anthropology of childhood. Cambridge, UK: Cambridge University Press McCue, K. (2009). Someone I love is sick: Helping very young children cope with cancer in the family. The Gathering Place. McCue, K. (2011). How to help children through a parent’s serious illness. New York: St. Martin’s Press McCue, K. and Hicks, M. (2007). From Vision to Reality: The expansion of the child life role. Child Life Council Focus, 25(4), 1–8. McCourt, F. (1996). Angela’s ashes. New York: Simon and Schuster. National Center for Children in Poverty. (2016). http://www.nccp.org/topics/child poverty.html Olds, A. (1986). Psychological considerations in humanizing the physical environment of pediatric outpatient and hospital settings. In Child life: An overview. Washington, DC: ACCH. Piaget, J., & Inhelder, B. (1969). The psychology of the child. New York: Basic Books. Plank, E. (1962). Working with children in hospitals. Cleveland: Western Reserve Press. Prugh, D., Staub, E., Sands, H., Kirschbaum, R., & Lenihan, E. (1953). A study of the emotional reactions of children and families to hospitalization and illness. American Journal of Orthopsychiatry, 23, 70–106. Robertson, J. (1958). A two-year-old goes to the hospital: A scientific film record (film). Nacton, UK: Concord Film Council. Robertson, J. (1958). Young children in hospitals. New York: Basic Books. Rubin, S. (1992). What’s in a name? Child life and the play lady legacy. Children’s Health Care, 21, 4–13. Rubin, S. (2014). Emma Nushi Plank (1905–1990): A pioneer’s journey and her moral compass. In J. Turner & C. Brown (Eds.), The pips of child life (pp. 65–76). Dubuque, IA: Kendall Hunt. Rutkowski, J. (1986). A survey of child life programs. In Child life: An overview. Washington, DC: ACCH. Smith, A. (1937). They play with you here, The Modern Hospital, Report on the development of play at the Children’s Memorial Hospital, Chicago, IL. Unpublished paper. Stanford, G. (1980). Now is the time: The professionalization of child life workers. Children’s Health Care, 8, 55–59. Spitz, R. (1945). Hospitalism: An inquiry into the genesis of psychiatric conditions in early childhood. Psychoanalytic Study of the Child, 1, 53–74. Spitz, R. (1947). Grief: A peril in infancy (film). New York: New York University Film Library. Thayer, P. (2009). Child life academic summit update. Child Life Council: Bulletin, 27(4), 4–7.

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Thompson, R. (1985). Psychosocial research on pediatric hospitalization and health care. Springfield, IL: Charles C Thomas. Thompson, R. H., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas. Turner, J. (2014). A new attitude in using play. In J. Turner & C. Brown (Eds.), The pips of child life. Dubuque, IA: Kendall Hunt. Turner, J., & Brown, C. (2014). Boston is where it all started: the roots of the child life study group. In J. Turner & C. Brown (Eds.), The pips of child life (p. 90). Dubuque, IA: Kendall Hunt. Turner, J., & Grissim, L. (2014). Care and conditions of children in hospitals circa 1930. In J. Turner & C. Brown (Eds.), The pips of child life (p. 17). Dubuque, IA: Kendall Hunt. Winnicott, D. W. (1964). The child, the family and the outside world. London: Penguin Books. Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L., & Thompson, R. (1988). An experimental evaluation of a model child life program. Children’s Health Care, 16, 244–254.

Chapter 2 THEORETICAL FOUNDATIONS OF CHILD LIFE PRACTICE JOAN C. TURNER INTRODUCTION s human beings, we each have our own informal theories of human nature, development and helping. These theories are typically derived from a combination of our life and educational experiences. Whereas informal theories are important in our daily lives, as child life practitioners we draw from a collective source of formal theories to shape and drive our contemporary practice. Theories are our way of making sense of the world around us; theories guide us in our interactions with others, help us to analyze our observations and experiences and offer us solutions to many of the choices that we face caring for children and families. Theories are important to the work that we do—without theory it would be difficult to determine and articulate why and how things happen the way they do. The following chapter presents an overview of the foundational theories used to build present-day, exemplary child life practice. Child life specialists do not always describe theory explicitly; nevertheless, examples of child life programs, interventions and research drawn from the recent literature illustrate ways in which foundational theories guide present day practices.

A

Play as a Conceptual Framework The perspective of play as a conceptual framework for assessment, planning, intervention, relationship building, and advocacy is a foundation of child life practice. Play is described as a healing modality through which child life practitioners promote growth and development of infants, children 34

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and youth (Child Life Council, 2002). Therapeutic properties of play, such as creative thinking, catharsis, fantasy and mastery, are utilized by child life specialists as a means to allow children to become active participants in the environment, express thoughts and feelings and practice emotional control over difficult issues. As a review of paradigms of play is offered in Chapter 8, the focus here is intended to present a general impression of play as a framework for the work of child life specialists aimed at enhancing child healthcare experiences. There are many possible ways of describing play. Common characteristics include the notion of play as a pleasurable activity, as child directed rather than goal oriented, requiring active engagement and promoting social, emotional, language, cognitive and physical development as the child explores and experiences his or her world. Dramatic, construction, cooperative and collaborative play can be seen across programs oriented to infanttoddler, preschool, school-aged and youth populations with the intention of supporting and promoting growth and development for ill and hospitalized children. Whereas early play programs identified with child-directed play in group playroom settings supervised by play leaders, starting in the late 1980s the role of the child life specialist advanced beyond the playroom to include child developmental, educational and therapeutic program and intervention models shared across the healthcare community (Grissim, 2016). For example, authentic pretend play opportunities can be observed when the time, space and opportunities for solitary and social free-form activity are available in play areas for young children. But, current child life practice most often combines these forms of play with directed educational and therapeutic activities. Consider the game-based information tool, iCare Adventure. This tablet application uses game-play to shift patient’s attention away from the stressors of the emergency waiting room (Taylor, Wilcox, Morrison, Hiltz, MacPhee, Wentzell &Gujar, 2015, p. 333). Investigated as an educational and therapeutic intervention for improved patient care, iCare Adventure encourages cooperative and parallel play among children and families in the emergency waiting room in combination with therapeutic videos about medical procedures and processes, as well as individual educational messaging around pain management and oral rehydration. Although Taylor et al. demonstrate the use of a play-based tool integrated with therapeutic and educational components to appropriately engage children and supportive adults during stressful healthcare encounters, the mere presence of play does not make it therapeutic. Using play as a healing modality in child life requires an understanding of the elements of play and the intentional integration of these elements to support the achievement of educational or therapeutic goals. In this

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sense, the reasoning underlying play-based interventions often aligns with concepts from foundational theories. In the iCare example, the use of a travel metaphor provides opportunity for non-competitive, explorative and distractive game-play with choice, social interaction and positive communication. Today, child life specialists require a broad view of play reflecting both traditional perspectives on play and the interests of the broader child and youth care and education communities beyond the hospital. Tremendous change in the use of technology in healthcare, education and recreation has resulted in the extension of computers, video games, tablet applications and social media into the realm of therapeutic and educational modalities for children and youth during interactions with healthcare environments. In response to this challenge, a network of professional volunteers is active in promoting the application of technology in child life practice to enhance patient care (http://www.childlifetechnology.org). The use of technology such as tablets allows children and youth who are restricted in mobility and activity due to fatigue, protective isolation or being tethered medical equipment to engage in exploratory, expressive and creative activities, game play and social communication. Remarkable as these innovative opportunities are to extend child life play, therapeutic and education practice in healthcare settings, the explosion of the use of technology in the greater community also affords child life opportunities to address the needs of children and youth who may be negatively impacted by increased engagement with technology. One downside of the increase in technology used for play identified in the broader community of children and families, however, is a dramatic increase in sedentary behavior. Consequences of decreased physical activity, combined with additional lifestyle factors, include increasing rates of childhood obesity, heart disease, diabetes and other chronic diseases (Temple & Robinson, 2014). Therefore, the push for interventions focused on increasing physical activity is gaining momentum, and healthcare professionals now view active play as a valid approach to promoting child health and wellness (e.g., Temple & Robinson). Interventions often require physical changes to the play environment (playground markings such as hopscotch grids, big body play equipment, and loose parts for open-ended play) and cognitive/ behavioral innovations (play-based curriculum, structured physical activity) or a combination of both. Outdoor play spaces, gardens and the addition of playground equipment and loose parts into hospital community spaces introduce opportunities for physical activity to children and families. “Taking a break” was the primary reason for attending a playgarden described in one survey of parents and staff, but opportunities for active play, individual and group play were also recognized as children enjoyed swings, climber, slides, a play hut, deck, and

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basketball areas located in the playgarden (Turner, Fralic, Newman-Bennett & Skinner, 2009). An expressed appreciation for the atmosphere and benefits of fresh air, relaxation, happiness, enjoyment, and physical activity was noted in the study. Vilas (2014) reported that 38 percent of respondents to a North American hospital play survey indicated outdoor spaces were available to children, families and guests. Only a small percentage of outdoor spaces were staffed. This fact points to a potential opportunity for child life specialists to expand their scope of practice to advance healthcare programs by applying active play strategies to improve the physical health of children both in the healthcare setting and surrounding community. Whether hospital or community based, play-based interventions are fundamental to child life practice. Observations of play allow child life specialists to consider the social patterns of interaction and activity level that are informative of a child’s prior experiences with play, social skill development, peer relationships, cognitive and physical strengths and limitations, as well as competence with social or healthcare-related situations. Based on their observations, child life specialists can develop individualized and group-based activities, interventions and programs grounded in theory-based rationales explaining expected outcomes. For example, self-determination theory and motivation theory have been applied to explain the use and benefits of video games (e.g., Przybylski, Rigby & Ryan, 2010). Interactions during video game play may inform the child life specialist of the strengths and interests of a youth and serve as a motivational intervention refocusing attention away from proximate healthcare concerns. However, in order to make sense of the observations and to follow-up with appropriate interventions, child life specialists must employ their knowledge of many theories to explore the how and why interventions may or may not be effective in a given situation.

Cognitive Theories Cognitive theories contributing to our understanding of children’s thinking include Piaget’s theory of cognitive development and “information processing” theory. Piagetian theory remains a highly visible influence in academic and professional publications in pediatric practice for his delineation of stages of development. Often the stages of Piaget’s theory of cognitive development and characterization of the ways children think are applied as a framework for the planning of age-appropriate play-based activities and interventions (see Table 1). Perhaps less visible in the child life literature, information processing theory has also been influential for the description of a number of mechanisms involved in the way children think. In fact, the classic model for child life practice, as articulated by Gaynard, Wolfer, Gold-

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berger, Thompson, Redburn and Laidley (1990), is grounded in information processing theory in combination with developmental and stress-coping theories. Through publication of the evaluation of the experimental child life program at Phoenix Children’s Hospital, Gaynard et al. generated a clear theoretical emphasis supporting future clinical practice. Accordingly, Gaynard et al. developed an integrative model of information processing under stress whereby child life specialists are depicted as actively promoting the processing of information rather than merely serving as transmitters of information. Cognitive theories advance our knowledge through perspectives on how changes in thinking occur relative to the role of the child life specialist as an agent of change facilitating the continued growth and development of children. Piaget’s characterization of the ways children think reflects a maturational process of development (Ginsburg & Opper, 1979). Piaget depicts the development of cognitive skills in relation to the interaction of maturational processes and experience over a predictable sequence of stages, from the sensorimotor period (birth to about two years) through the formal operational stage initiated in early adolescence. Focusing on the individual child as an active agent experiencing the world, Piaget described learning as taking place as children encounter new experiences, for example, during play. Assimilation is described as the process whereby children exposed to new information transform it to fit into their existing way of thinking. When a context of disequilibria between children’s current thinking and the new information occurs, accommodation is said to take place whereby the information is adapted or organized in a new way. The resulting state of equilibrium is described as resulting from the challenge to children’s existing understanding and allows for the potential of growth or learning to take place. In contrast to Piaget, information processing theory was developed using the analogy of a computer system, with concepts such as encoding, generalization, automatization and strategy construction key to the process of learning for children and adults (Siegler, 1998). Information processing theorists assert that children’s thinking is greater than we generally assume relative to adult thinking. The processes are the same as abilities develop with maturation and experience, with variation reflecting differences in degree rather than kind. For example, as thinking develops children are able to integrate and sort greater amounts of information with greater speed and memory. The influence of the social world on children’s thinking coincides with increasing knowledge and the development of functional structures (e.g., brain development). Like Piaget, information processing theory considers children to be active agents, striving to develop strategies for problem solving by processing information and learning ways to reach goals based on suc-

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Table 1 DEVELOPMENTALLY APPROPRIATE PLAY OPPORTUNITIES Age

Piaget: stages of play

Developmentally Appropriate opportunities Facilitated by Child Life Staff

Birth–1 year

Sensorimotor

1–3 years

Symbolic representational

4–5 years

Preoperational

Increased opportunities for both independent activities and associative play in groups. For example, playrooms set up to allow for choice of activity, tone of activity (passive—quiet, active—physical) and individual or group play

6–12 years

Games with rules

Exposure to familiar, novel and ‘safe’ activities, ideas and friends can be facilitated through structured opportunities for appropriate interactions with materials and peers, e.g. bingo, tic tac toe, board and card games; emerging development of language and understanding of new concepts is encouraged through the introduction of stimulating interactive programs such as health-related games or experiments and music or magic tricks

Tactile, visual, auditory, and kinetic stimulation such as positive touch, face-to-face contact, singing and talking, and rocking or swinging; walks in a stroller, tummy time and positioning for exploratory play through grasping, reaching, sitting, crawling, standing and walking; opportunities to experience cause-effect relationships; introduce colorful toys, books and changes in the environment: light, sound, textures Imitation facilitated through opportunities for parallel play, use of props for symbolic play and exploration of sensory materials such as paint, play dough, sand, water, big blocks; increased exposure to language through talking, books, music, pictures and peer play

cessful strategies. In contrast to Piaget, information processing focuses on the small, precise steps involved in problem solving. For example, relative to the sorting of relevant and irrelevant information, knowledge is encoded and organized for future use. As new strategies for problem solving become more familiar, they may take on an automatic style. That is, the children do not have to stop and think about something because it becomes a part of their processing.

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Careful consideration of the relationship between developmental, cognitive characteristics and learning processes is important in the selection of play and interventions that meet individual requirements of children (Gaynard et al., 1990). Informed by theory, child life specialists offer multiple hands-on and sensory experiences for children of all ages, for example medical play. Although many child life specialists apply an understanding of concepts of cognitive theory in the delivery of medical play, the benefits described as resulting from the activity (increased coping, compliance, satisfaction are examples) require consideration of additional theoretical perspectives. While the cognitive theories just discussed focus on individuals in isolation, we know that children operate in the context of family and social environments that cannot be overlooked. One study explored the provision of medical play to potentially enhance the overall experience of parents and children, including parent satisfaction, parental anxiety, decreased child distress (Moore, Bennett, Dietrich & Wells, 2015). The intervention included hands-on and sensory materials to sequence a directed medical play session (e.g., through use of a blood pressure cuff, thermometer, scissors, tweezers, washcloths, play camera, ointment/cream, commonly used dressings and a standardized script) supported by the presence of a child life specialist and informed by cognitive theory. Although children’s distress during pediatric burn dressing changes was reduced for the intervention group, the results were not statistically significant; nor were significant changes observed in measures of parent anxiety and satisfaction. In asking why the results were not stronger, one only has to look to theories for possible explanations as to the how and why interventions may or may not be effective in a given situation. Therefore, a closer examination of additional theory may not only help explain the results but also inform future practice, in effect, to consider not only the cognitive processes but also the context in which the intervention occurs. Theories are applied as frameworks directing the attention of the child life practitioner to extend beyond children in isolation and focus on children in the context of family relations and the social environment. Social contextual influences can introduce stress or emotional responses that may interfere with the ability of the individual to assimilate new information, apply previously successful skills or strategies to novel situations; basically to learn. Therefore, attention to additional demands in the environment influencing children’s ability to process information during medical play should be recognized for the potential to interact in ways that inhibit or enhance the efficacy of the intervention. Rather than outcomes, perhaps parent anxiety and satisfaction represent demands on children’s ability to process information. Perspectives from theories (described below) offer additional ways to articu-

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late the complexities associated with supporting children and families in healthcare settings.

Social Cultural Theory The work of Vygotsky is included in this review of theory to highlight the relevance of considering a sociocultural perspective in current child life practice. According to this perspective, children’s thinking is said to reflect a combination of maturation and learning that takes place within the social and cultural context (Vygotsky, 1976). In particular, the social and cultural context is seen as influencing what children learn and how they learn it. Vygotsky was a Russian contemporary of young Piaget whose work did not emerge as an influence on contemporary developmental theory in the West until the 1970s. Social-cultural theory acknowledges the influence of context on children’s developing knowledge of the world. Within the context of learning, children’s thinking is described as reflecting the integration of where children are cognitively with the demands of the given context (immediate or cultural, for example, adult expectations for child behavior). A number of terms are associated with this perspective. The “zone of proximal development” (ZPD) describes the difference between a child’s actual developmental level when acting independently and the potential level a child may reach under effective guidance. “Scaffolding” refers to the use of appropriate guidance techniques that allow for the presentation of enough challenge to advance the child to the next level, as well as recognize and adapt characteristics of the environment to promote learning or information processing. A skilled professional, such as a child life specialist, is able to assess children, consider the context of healthcare settings and related demands placed on children, and present interventions that assist children in their ability to learn and cope. For example, independently or supported by peers, a child may demonstrate the capacity to stay still for a pretend procedure over a lengthy time period in a play scenario free from the proximate demands of the healthcare setting. Bodrova and Leong (2015) emphasize play is not as “a reflection of past experience but as an activity essential for the development of the ‘future child’” (p. 376). Therefore, the effective child life specialist can recognize the potential of children, and present appropriate challenges and supports to children as they reach new potentials under unique conditions. Emerging studies examining play and preparation as supporting sedation-free MRI procedures for children align with this viewpoint (Barnea-Goraly et al., 2014; The Child Life Research Team, 2014). Indeed, children are respected for their ability to adjust in complex environments when provided with appropriate opportunities for growth and learning.

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Attachment Theory Attachment theory provides a perspective to child life specialists from which to clarify the central role of the parent-child relationship to the wellbeing of the developing child. Due to the physical, cognitive and social limitations of infancy, the adult influences the organization of the attachment relationship as it develops over time and across situations (Bowlby, 1973). The notion of attachment reflects the relationship between the quality of care provided by a caregiver (parent or surrogate) as it affects the child’s confidence in the availability of the caregiver (Ainsworth, Blehar, Waters & Wall, 1978). The development of a secure relationship promotes exploration of the social and physical environment as the child experiences the caregiver’s ability to be sensitive to and respond to his/her needs in a contingent manner. Insecure attachment relationships reflect the child’s experience of a pattern of inconsistent or dismissive responses to his/her bouts for attention during times of discomfort, distress or pain. As the child develops, shifts in the relationships are apparent. Eventually, the child emerges as a partner in the ongoing relationship and is more able to anticipate or forecast not only the care provided by the parent, but also potentially threatening events that may occur. For young infants, early threats to a sense of security are loss of support, loud noises, and sudden movement. Restricted in both discriminating perception and physical movement, the response of young infants is limited to crying, muscle tension, and diffuse movements. These attachment behaviors or “signals” elicit a protective response in the caregiver whose role is to identify and respond to the threat and return the infant to a state of comfort. As children grow and develop, they become able to influence the organization of the relationship. The expanded repertoire now includes active contact behaviors (e.g., clinging, following) and the ability to communicate through language. By the time children are three or four years of age, they are able to use this cognitive capacity to predict, plan, influence, communicate, and negotiate with the caregiver. With these changes, children are able to perceive a need for proximity maintenance (protection) and respond through eliciting attachment behaviors. The organization of expectancies and patterns, referred to as “working models,” is facilitated through cognitive advances. That is, the dyadic relationship itself becomes represented internally through the child’s capacity to believe in the existence of the caregiver without the physical presence of that caregiver (Bowlby, 1969/1982). Conditions of consistency, comfort and predictability are provided in pediatric healthcare settings in part through promotion of child life services designed to sustain relationships between the parent and child. Turner (2005) illustrated scenarios that draw distinctions among secure, avoidant and resis-

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tant relationships. She advocated for the inclusion of attachment-informed assessment as a way to strengthen the selection of interventions to meet the needs of individual parent-child dyads. The influence of the quality of parent-child relationships on the healthcare experience of both the child and the parent can be informed through an understanding of attachment relationships. Observations by Koller, Nicholas, Goldie, Gearing, and Selkirk (2006) provide a well-defined example of the significant effects of isolating hospitalized children where serious infectious diseases can lead to separation of family members.

Psychosocial Development Erik Erikson considered the social and cultural environment of the developing individual as the influential factor in the development of personality across the lifespan (Erikson, 1963). Erikson viewed development as a dynamic and continuous process whereby the individual strives to adjust to issues that arise at key interaction points. Typically, the social conflicts identified within the stages of Erikson’s theory of psychosocial development are applied as a framework from which caregivers approach age-appropriate activities and instruction across the lifespan. Emma Plank, considered the mother of child life in North America, was a contemporary of Erikson in Vienna, and their relationship continued following immigration to the United States following World War II (Rubin, 2014). Evidence of Erikson’s influence on the early conceptualization of child life is seen in examples of child life interventions that are aligned in concordance with the psychosocial stages and issues of development (see Table 2). Additional ways in which children can be supported during healthcare experiences can be found in the child life and related healthcare literature. Stephens, Barkey and Hall (1999) present a model of working with children and parents, referred to as positioning for comfort. Consistent with the notions of protection, security and proximity maintenance as explained in the previously-discussed attachment theory, the positioning of children supported by their caregiver during invasive procedures also addresses psychosocial issues around trust and autonomy during the early years. Positions of comfort have become as indicator of quality in healthcare practices to encourage the active engagement of parents and children during stressful events. Similarly, child life interventions offering appropriate play materials and instruction to caregivers on ways to play with their child post-surgery allow play to be used as a resource that provides distraction, improves mood and supports the parentchild relationship during a demanding important phase of recovery (Ullán, Belver, Fernández, Lorente, Badía & Fernández, 2014).

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The Handbook of Child Life Table 2 APPLICATION OF ERIKSON’S PSYCHOSOCIAL THEORY TO CHILD LIFE PRACTICE Age

Psychosocial Stage

Birth–1 year Trust vs. Mistrust

Issues

Child Life Interventions

Separation from caregivers Unfamiliar environment, routines, and people

Prompt consistent care; encourage parent involvement to meet both physical and emotional needs

Reduced autonomy Lack of opportunities for self-control Separation anxiety

Encourage normalization through play and exploration of environment and materials

1–3 years

Autonomy vs. Doubt

4–5 years

Initiative vs. Guilt

Limitations on sense of control and independence Magical thinking and egocentric thought resulting in misunderstanding, fear

Increase opportunities for control; maintain routines; assess understanding and provide age-appropriate explanations

6–12 years

Industry vs. Inferiority

Separation from normal activities associated with home, school and peers Concrete literal thought resulting in misunderstanding, reduced selfesteem

Promote opportunities for peer interaction, parental support; Structure and provide activities that allow for success; support connections to home and school

13–17 years

Identity vs. Role Confusion

Limitations related to privacy, peer relationships, independent activity and decision making Concern with perspective of others, body image

Provide opportunities for choice, control, selfexpression and relationship building Allow for privacy but also promote peer interactions

Temperament Theory Child life professionals can apply temperament theory as an organizing framework to describe individual characteristics of the child observed in relation to specific characteristics of the environment (McLeod & McClowry, 1990). Considered to be genetic in origin, temperament qualities such as

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adaptability, irritability, activity level, emotionality and fearfulness may account for some individual differences in behavior. Environmental factors, however, are considered to influence the expression of these traits (Chess & Thomas, 1984). Referred to as goodness of fit, the challenge for child life professionals involves providing a supportive environment that matches the needs of the child with the demands of the healthcare setting, Thus, maladaptive behaviors observed in the child are believed to result from a lack of sensitivity to the child and an increase in stress. McLeod and McClowry (1990) present an effective demonstration of the application of temperament theory and research in an explanatory model supporting child life practice. Three commonly referred to temperament types—“easy,” “difficult,” and “slow-to-warm-up”—are illustrated in case scenarios with a caution against the oversimplification of generalities when working with individuals. An “easy” child, characterized by adaptability and positive mood, may show anxious behavior at times that can be addressed by interventions such as planning and expressive activities. The “slow-towarm” child may need extra time and attention in order to adjust to new situations. The comfort level of a “difficult” child, perhaps described as manipulative, demanding, highly active and/or loud, can be facilitated through interventions related to increased choices and control, positive feedback and activities designed to increase the child’s self-esteem. Results of LeBlanc, Naugler, Morrison, Parker and Chambers (2014) show children assigned a difficult composite score on a measure of temperament were more likely to receive healthcare play interventions to help them express feelings, develop coping skills and address misunderstandings.

Social Learning Theory Social learning theory also describes the child as an active participant in learning within the environment and larger systems. One central concept of the theory, observational learning, explains the transmission of information resulting in a change in behavior as a consequence of experience or modeling (Bandura, 1977). Four main processes of learning: attention, retention, imitation and reinforcement involve the interaction of behavioral and cognitive components. From the perspective of a child life specialist, attention to these processes is key to the manner in which environments and interventions are planned to provide opportunities for children and families to observe competent models. Modeling interventions are typically developed using delivery modes that capture the attention of the target audience; for example, hands-on materials, dolls, picture books and videos. The presentation of information is

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designed to facilitate its retention through entertainment, repetition and opportunities for imitation. Positive reinforcement may take the form of observing successful outcomes, making new friends, gaining new information and coping strategies, or expressing feelings under comfortable and safe conditions. Feelings of increased self-esteem and mastery are often the stated goals of related interventions. An example of the application of social learning in research is found in Grissom, Boles, Bailey, Cantrell, Kennedy, Sykes and Mandrell (2015). The authors provide a thorough description of play-based procedural preparation provided for children undergoing cranial radiation. The child’s development, learning style and ability to cope with the procedure are assessed by child life specialists and contribute to care plans individualized for children who are subsequently assigned to sedation or non-sedation protocols. Preparation, planning, rehearsal and practice are incorporated in the play-based preparation and support and allow those children in the non-sedation protocol to successfully cope with the procedure. Consistent with the processes of learning, children have opportunities to practice coping strategies, gain confidence and to demonstrate mastery by maintaining the “treatment position” while in a non-threatening environment. Additional coping interventions used by Grissom et al. for children in the non-sedation cranial radiation treatment schedule are described in the following section.

Stress and Coping Theories The theory of Lazarus and Folkman (1984) is frequently described in child life and related literature as a framework for explaining children’s coping. Coping is defined as “constantly changing cognitive and behavioral efforts to manage specific external and or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141). The role of the child life specialist is to determine what type of information and coping strategies are most effective in decreasing a child’s experience of stress. This theory focuses on the individual viewpoint or appraisal of a stressful situation recognizing that individuals use different coping responses in different situations. Approaches to assessing coping strategies require an understanding of two types of strategies: emotion-based and problem-based. Emotion-based strategies are characterized by behavior aimed to regulate the emotion responses to a problem such as reappraisal of the situation and tension release; problem-based strategies are characterized by efforts to change the situation or solve the problem, for example through information seeking. The child’s thought processes and level of understanding influence

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the evaluation of the meaning of a given situation and in turn influence the child’s behavior. Advancements in technology and social media, are also reflected in approaches to helping children cope with chronic illness and repeated invasive procedures. In fact, many child life related interventions have evolved over the past decade. For example, Grissom et al. (2015) provided options in their intervention plans for children undergoing radiology treatments that included the use of personalized music playlists, audio books, and listening to guided imagery or relaxation scripts. Play-based child life preparation and support were effective in decreasing the need for sedation and associated healthcare costs among these children. Play-based approaches, such as guided imagery, are used to actively engage a child’s imagination during extended radiological examinations. This coping method harnesses a child’s cooperation by capturing the child’s attention throughout the lengthy procedure (Dobson & Byrne, 2014). After training in the use of guided imagery, participants report significant increases in self-efficacy, as well as reductions in pain intensity and the use of analgesics. Drake, Johnson, Stoneck, Martinez and Massey (2012) evaluated nurse’s perceptions of the usefulness of coping kits for distraction with children on the autism spectrum. Communication cards, a social script book, and distraction toys were viewed favorably by a small sample of nurses to decrease patient anxiety, calm children’s behavior and increase cooperation. Coping is frequently stated as the desired outcome of many child life interventions. Through a combination of play-based and technology-based innovations, children and families are exposed to a myriad of interventions designed to engage and educate children and families during their healthcare journey. Organizations such as Child Life Technology support the engagement of child life professionals with innovation and technology for developmental, educational and therapeutic interventions. As a goal of the organization states, “The end objectives are to alleviate anxiety, provide distraction from pain, and enable a platform of education, entertainment, escape, and companionship through communications, to as many children in need as possible” (http://www.childlifetechnology.org).

Systems Theories An understanding of the interaction among the child, the family, and the environment is central to the work of child life specialists. Two theoretical frameworks direct the attention of child life practitioners to look beyond the child in isolation and focus on the child in the context of family relations and the social environment. First, family systems theory informs child life prac-

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tice by providing a perspective on the socialization of the child and drawing attention to many aspects of the context of family as a socializing agent. Additionally, the ecological theory of Bronfenbrenner (1979) contributes to the study of families through the examination of development in the context of both immediate and distal systems. While both theories acknowledge the influence of the wider social systems, ecological theory explains the interdependence of the systems. To be consistent with both theories, child life specialists must be particularly attuned to the nature of the hospital or healthcare system as a social institution that serves as an immediate context influencing the hospitalized child and his or her family. To run efficiently, the healthcare system is formally organized by rules, schedules, codes of practice, regulations and social norms. As a result, families are placed in a unique culture or psychological environment as they interact with the social organization, patterns of relationships and style of management particular to each healthcare setting. Similar to the notion of goodness of fit described in temperament theory, systems theories offer opportunities for further examination of the family’s response, adjustment and adaptation to change within the family and/or the wider social system within which it is embedded. The role of the child life specialist reflects a need to both assess family responses and support families in the process of navigating the system in order to meet the needs of the child.

Family Systems Theory Family systems theory promotes the examination of the family as a whole in terms of individual family members, their relations within the family, and the relations among members as the family strives to maintain balance in the face of development and change (Friedman, 1998). Each family is considered to represent more than a simple tabulation of family members. Each member is viewed from the perspective of complex relations with other family members in terms of dyads, triads and so on, with each of these relations among family members viewed as an integral subsystem. The notion of complexity arises from the interdependency of subsystems and the circularity of influence that each subsystem has on other subsystems, as well as on the system as a whole. That is, when change occurs the whole system is affected and reacts in a manner that serves to sustain balance. As families are imbedded in wider social systems, each is influenced by outside events to varying degrees. Additionally, families are faced with change that occurs naturally as a consequence of typical growth and development. Regardless of the source, the consequence is that the challenge of

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coping with change is ongoing in the course of family life. Family systems theory demonstrates how characteristics of families, such as openness, permeability, and flexibility, vary in degree and influence the family’s capacity to adjust to change. Therefore, child life specialists are educated to recognize and understand that events, such as the diagnosis of illness or the traumatic injury of a child, impact the whole family. To this end, assessment and interventions are carried out with consideration of the impact on all family members, as well as related systems. Family systems theory provides a framework for child life professionals to observe the transactional nature of family responses to situational events and plan interventions to meet the unique needs of individual families. As such, child life specialists strive to develop relationships, not only with the child, but parents, siblings and other primary figures in the life of the child. Smith, Desai, Sira and Engelke (2014) report child life specialists in the neonatal intensive care unit (NICU) not only provide developmental support for infants, but also palliative care/support and family education. Support for siblings in the form of play interventions was noted as the role that is distinct for the child life specialist in the NICU setting. Nicholas, Fellner, Koller, Chow and Brister (2011) evaluated videophone communication for families of hospitalized children with limited access due to geographical location. Understanding the stress of separation on the child and the family, videophone communication was provided and alleviated feelings of isolation and anxiety and increased a sense of connection. Many of these interventions focus not only on supporting the family’s ability to cope within the healthcare system, but to also transition smoothly back into life outside the protective walls of the healthcare environment.

Ecological Theory Bronfenbrenner (1979) offered a new theoretical perspective emphasizing the interdependence of persons and the environment. He illustrated the process of human development using an analogy of Russian nesting dolls, with the individual contained within his/her immediate setting, surrounded by interconnected levels representing the relations between settings, events occurring in external settings, and the different subcultures or cultures of the greater environment. Currently, an illustration with a series of overlapping circles is more often used to represent relations and transitions among the microsystem, mesosystem, exosystem and macrosystem. This model encourages one to look beyond the immediate context of the developing child, observing the child within the larger context of society, drawing attention to environmental interconnections and their impact on growth and development.

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According to ecological theory, it is the perceptions of, and transactions with, the environment that influence development. Microsystems refer to the immediate settings within which the child develops. The home is typically the first setting that comes to mind. Additionally, child care and schools, or for chronically ill children the hospital or rehabilitation setting, are microsystems where children spend a good deal of time as they develop and begin to experience relations away from home. Within each setting, the child experiences many relationships with others, from primary caregivers to incidental persons in the environment. As well, experiences extend to the mesosystem. The mesosystem represents the links between two or more microsystems and the relations between or among these settings, for example, the interactions between school and home, hospital and home, or among all three. Bronfenbrenner further extends the notion of the ecology of human development to illustrate the exosystem and macrosystem. The exosystem represents those systems separate from the individual but which have an effect on the microsystems containing the developing child, for example, the parent’s workplace, financial institution, or the local pharmacy. The macrosystem refers to the greater social system of culture and subcultures and the reality of consistencies or inconsistencies in belief systems or ideologies between cultures. The healthcare system consists of a body of beliefs and practices that may or may not be supportive of, or consistent with, the beliefs or needs of a family with an ill or injured child. From the child life literature, Gaynard et al. (1990) apply a systems framework for the assessment of the child’s vulnerability to stress relative to the context of the healthcare system, called the stress potential assessment process. An illustration of the relationship between systems includes a series of overlapping circles, each representing a system of potential influences on the child’s ability to adjust and adapt to change, be it physical, psychological or environmental change. This model draws the attention of the child life practitioner towards the interaction of child variables, family variables and healthcare variables during the dynamic and ongoing process of assessment. The skill of the child life specialist in building relationships and observing the systems that influence the child affects the type and level of interventions designed to promote positive development and coping of the child and family. According to Bronfenbrenner (1979), a balance between the individual and systems in the environment serves to support positive developmental outcomes. As Bronfenbrenner’s theory encourages us to view the individual within a set of interacting ecosystems, so too should child life practice include attention to these systems that ultimately influence the growth and development of the child. Current child life practice supports the participation of

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practitioners in the policy and procedures activities of the larger healthcare system as advocates for the unique needs of children and families, for example through development of family-friendly policy and procedures. Current trends also demonstrate the role of the child life specialist liaising with systems beyond the walls of the hospital by providing and coordinating services in subsystems such as homes, schools and the greater community. SUMMARY The ability of child life professionals to articulate and justify to others the meaning and underlying functions of clinical interventions and programs supports the ongoing development of the profession. Smith et al. (2014) found that team integration was in need of improvement: less than half of the respondents felt integrated or visible to the interdisciplinary team members in the NICU. As the role of child professionals goes much beyond simply providing play, this finding underscores the need for educational strategies to encourage better understanding of the function and goals of specific child life activities. Theories are helpful tools in the explanation of why we support and promote specific interventions and policies. To this end, one can imagine theories as representing a common language between professions. As child life specialists strive to maintain their professional status and recognition, attention must be paid to practice standards firmly supported by current theory and research. The synthesis of theory and practice is a skill that is initiated within the curriculum of our educational foundations and put into practice as we move through practicum, internship and professional experiences. Association of Child Life Professionals curriculum recommendations include theoretical foundations in, for example, human development, play, attachment, stress and coping, social learning and family systems (CLC, 2002). In practice, the responsibility of child life supervisors should include an emphasis on core clinical skills through ongoing clarification of connections between theory and practice. Child life competencies grounded in theoretical perspectives can equip practitioners with explanatory frameworks that allow for connections between theory and practice to be advanced—or in times of economic struggles, for the status quo to be maintained. To revisit theory allows for a level of detachment from our personal response and current practice milieu to ground us in the conceptual framework of our profession. This review of the theoretical foundations of child life practice serves as a reflection process where we can step back and evaluate (or reevaluate) our own reactions, rationales and practice through a different lens.

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REFERENCES Ainsworth, M., Blehar, M., Waters, E., & Wall, S. (1978). Patterns of attachment: A psychological study of the strange situation. Hillsdale, NJ: Erlbaum. Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice-Hall. Barnea-Goraly, N., Weinzimer, S. A., Ruedy, K. J., Mauras, N., Beck, R. W., Marzelli, M. J., & Reiss, A. L. (2014). High success rates of sedation-free brain MRI scanning in young children using simple subject preparation protocols with and without a commercial mock scanner—the Diabetes Research in Children Network (DirecNet) experience. Pediatric Radiology, 44(2), 181–186. Bodrova, E., & Leong, D. J. (2015). Vygotskian and Post-Vygotskian views on children’s play. American Journal of Play, 7(3), 371–388. Bowlby, J. (1973). Attachment and loss volume 2: Separation, anxiety and anger. London, UK: Penguin Books. Bowlby, J. (1969/1982). Attachment and loss volume I: Attachment. London, UK: Hogarth Press. Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard Buratti, V. C., Angelino, F., Sansoni, J., Fabriani, L., Mauro, L., & Latina, R. (2015). Distraction as a technique to control pain in pediatric patients during venipuncture. A narrative review of literature. Professioni Infermieristiche, 68(1), 52–62. Chess, S., & Thomas, A. (1984). Origins and evolution of behavior disorders. New York: The Guilford Press. Child Life Council. (2002). Official documents of the Child Life Council. Rockville, MD: Author. Child Life Technology, http://www.childlifetechnology.org Dobson, C. E., & Byrne, M. W. (2014). Original research using guided imagery to manage pain in young children with sickle cell disease. The American Journal of Nursing, 114(4), 26. Drake, J., Johnson, N., Stoneck, A. V., Martinez, D. V., & Massey, M. (2012). Evaluation of a coping kit for children with challenging behaviors in a pediatric hospital. Pediatric Nursing, 38(4), 215–221. Erikson, E. (1963). Children and society. New York: Norton. Friedman, M. M. (1998). Family nursing: Research, theory, and practice (4th ed.). Stamford, CT: Appleton & Lange. Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R., Redburn, L., & Laidley, L. (1990). Psychosocial care of children in hospitals: A clinical practice manual for the ACCH child life research project. Bethesda, MD: Association for the Care of Children’s Health. Ginsburg, H., & Opper, S. (1979). Piaget’s theory of intellectual development. Englewood Cliffs, N.J: Prentice-Hall. Grissim, L. (2016). Play: It’s not the icing on the cake, it’s the cake. In J. Turner & C. Brown (Eds.), Pips of child life: The middle years of play programs in hospitals. Dubuque, IA: Kendall Hunt.

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Grissom, S., Boles, J., Bailey, K., Cantrell, K., Kennedy, A., Sykes, A., & Mandrell, B. N. (2015). Play-based procedural preparation and support intervention for cranial radiation. Support Care Cancer. doi: 10.1007/s00520-015-3040-y. Koller, D. F., Nicholas, D. B., Goldie, R. S., Gearing, R., & Selkirk, E. K. (2006). Bowlby and Robertson revisited: The impact of isolation on hospitalized children during SARS. Journal Developmental and Behavioral Pediatrics: JDBP, 27(2), 134–140. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer. LeBlanc, C. K., Naugler, K., Morrison, K., Parker, J. A., & Chambers, C. T. (2014). Parent perceptions and satisfaction with inpatient child life specialist interventions and the role of child temperament. Children’s Health Care, 43, 3. McLeod, S. M., & McClowry, S. G. (1990). Using temperament theory to individualize the psychosocial care of hospitalized children. Children’s Health Care, 19, 79–85. Moore, E. R., Bennett, K. L., Dietrich, M. S., & Wells, N. (2015). The effect of directed medical play on young children’s pain and distress during burn wound care. Journal of Pediatric Health Care: Official Publication of National Association of Pediatric Nurse Associates & Practitioners, 29(3), 265–273. Nicholas, D. B., Fellner, K. D., Koller, D., Chow, K. F., & Brister, L. (2011) Evaluation of videophone communication for families of hospitalized children, Social Work in Health Care, 50(3), 215–229. Piaget, J. (1962). Play, dreams and imitation in childhood. New York: W.W. Norton. Przybylski, A. K., Rigby, C. S., & Ryan, R. M. (2010). A motivational model for video game play on the context of normal development. Review of General Psychology, 14(2), 154–166. Rubin, S. (2014) Emma Nuschi Plank (1905-1990): A pioneer’s journey. In J. Turner & C. Brown (Eds.), Pips of child life: The early years of play programs in hospitals. Dubuque, IA: Kendall Hunt. Siegler, R. S. (1998). Children’s thinking. Englewood Cliffs, NJ: Prentice-Hall. Stephens, B. K., Barkey, M. E., & Hall, H. R. (1999). Techniques to comfort children during stressful procedures. Advances in Mind-Body Medicine, 15, 49–60. Smith, J. G., Desai, P. P., Sira, N., & Engelke, S. C. (2014). Family-centered developmentally supportive care in the neonatal intensive care unit: Exploring the role and training of child life specialists. Children’s Health Care, 43(4), 345–368. Taylor, B.W., Wilcox, A., Morrison, K., Hiltz, M. A., Campbell, M., MacPhee, E., Wentzell, M., & Gujar, S. (2015). Implementation of a game-based information system and e-therapeutic platform in a pediatric emergency department waiting room: Preliminary evidence of benefit. Procedia Computer Science, 63, 332–339. Temple, M., & Robinson, J. C. (2014). A systematic review of interventions to promote physical activity in the preschool setting. Pediatric Nursing, 19, 274–284. The Child Life Research Team (2014). Technical Research Report to the Child Life Council. Children’s National Health System. Retrieved from https://www. childlife.org/files/MR%20Nonsedate%20Tech%20Report%2May%202014.pdf

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Turner, J. (2005). A place for attachment theory in child life programming: The potential to assess the quality of parent-child relationships. Child and Youth Care Forum, 34(3), 195–207. Turner, J., Fralic, J., Newman-Bennett, K., & Skinner, L. (2009). Everybody needs a break: Responses to a playgarden survey. Pediatric Nursing, 35(1), 27–34. Ullán, A. M., Belver, M. H., Fernández, E., Lorente, F., Badía, M., & Fernández, B. (2014). The effect of a program to promote play to reduce children’s post-surgical pain: With plush toys, it hurts less. Pain Management Nursing: Official Journal of the American Society of Pain Management Nurses, 15(1), 273–282. doi: 10.1016/j.pmn.2012.10.004 Vilas, D. (2014). Report on Findings of Play Practices and Innovations Survey: The State of Play in North American Hospitals. Arlington, VA: Child Life Council. Vygotsky, L. (1976). Mind in society. Cambridge, MA: Harvard University Press.

Chapter 3 RESEARCH IN CHILD LIFE RICHARD H. THOMPSON, KATHERINE L. B ENNETT, AND CHARLES W. S NOW INTRODUCTION hild life professionals practice predominantly in medical environments, although this practice is increasingly shifting to settings outside of the hospital walls. Regardless of the specific environment where child life specialists work, decisions about practice made by members of the clinical team in those settings are based largely on supportive research findings. We noted in our 2009 edition of this chapter that the relationship between the practice of child life specialists and available research findings was not always direct or clear. For example, O’Byrne, Peterson, and Saldana (1997) reported that child life specialists were second only to nursing among members of the medical team in terms of responsibility for the preparation of children for medical events. Yet, the researchers found that regardless of who was responsible for preparation, the programs implemented were not necessarily based on the lessons that could be derived from the existing research literature. Research published since that time does little to directly address the extent to which child life specialists apply research in their practice. Nevertheless, there is indirect evidence of increasing involvement in and awareness of research by child life professionals. For example, a number of studies on the effectiveness of clinical interventions have included child life specialists among the members of the team involved in implementation of the approach. The participation of child life specialists has been noted in studies examining pain management strategies (Brooke & Janselewitz, 2012; Corwin, Kessler, Auerbach, Liang, & Kristinsson, 2012; Cregin, Rappaport, Montagnino, Sabogal, Moreau, & Abularrage, 2008), support during the insertion of central catheters (Pitts, 2013), and the use of a protocol for exam-

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ining the psychological risk among oncology patients (Kazak et al., 2011). Child life specialists have also participated in research projects as raters or observers of patient behaviors (Farion, Splinter, Newhook & Gaboury, 2008) and as respondents in interdisciplinary studies of the perceptions of clinical work (Dix, Gulati, Robinson, Syed & Klassen, 2012; Darsie, 2009). Child life specialists now have greater access to the results of research on clinical practice, particularly through publications and newsletters developed by the Association of Child Life Professionals (ACLP), formerly known as the Child Life Council (CLC). Moreover, they have formal, professional need to locate and apply research findings in conjunction with the heightened awareness and inclusion of evidence-based practice (EBP) to be discussed more fully in subsequent sections. Although the total number of studies directly addressing the profession and practice of child life continues to be limited relative to other professions, there is an appreciable volume of research conducted by members of the healthcare team, including pediatric psychology and nursing, research that is relevant to and provides guidance for the profession of child life. The relative lack of child life research is not surprising, given the more recent introduction of child life to the healthcare team, the lesser numbers of child life specialists in comparison to other professions, and the limited amount of academic supports, such as doctoral programs in child life that would formally encourage research. These factors, coupled with the inherent difficulties of conducting research within the medical environment, complicate the production of additional work and make the work that has been published all the more commendable. Despite these barriers, an encouraging number of studies have appeared over the past decade directly examining child life. These studies fall into two basic categories. One set includes what we have termed “professional issues.” These studies address the educational training, prevalence, practice and perceptions of child life, as well as the stressors child life specialists may encounter in their practice. The second set of studies concerns the effectiveness of specific interventions and practices used by child life specialists in medical settings and beyond. In this chapter we will review each of these bodies of research, as well as research on the effects of hospitalization and healthcare encounters on children. Knowledge of this research literature allows child life specialists to evaluate and inform their practice, and to question existing forms of practice that may have been taken for granted. The work reviewed in this chapter will be limited to empirically-based studies, primarily quantitative in nature. The topics addressed have been selected as those areas where a “critical mass” of studies appears, where the topics have direct relevance to the practice of child life, and where the focus

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is on evaluating the efficacy of approaches and on guiding practice. Our emphasis will be on recent research of relevance to the field, yet will include reference to work that has provided the foundation for the profession of child life. For those seeking a fuller historical perspective on research, we refer you to Thompson (1985) and Vernon, Foley, Sipowitz, and Schulman (1965). The practice of child life has evolved since the 2009 edition of this chapter. As a result, so has the purpose and content of this chapter. The EBP approach to clinical work will be introduced as a structure for critically considering the research discussed in the remainder of the chapter, and for applying it where appropriate as a guide to practice. In addition, to assist the reader in the application of this research to practice, we will conclude key sections of the chapter with what we believe to be the most relevant lessons that can be learned from the literature—the “takeaway” points. EVIDENCE-BASED PRACTICE AND ITS RELATIONSHIP TO RESEARCH Evidence-based practice, or EBP, is a term that is used frequently in the healthcare sector and other professional arenas, but its specific meaning may not be clear. A concise definition of EBP is that it is “the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients” (Sackett, Rosenberg, Muir-Gray, Haynes & Richardson, 1996, p. 71). In the Winter 2012 Focus section of ACLP’s Bulletin, Jenny Staab, as a spokesperson for the Evidence-Based Practice Committee, outlined an EBP model for child life practice. Since the publication of this model, the ACLP has continued to develop a body of resources relevant to EBP. These resources, which are available at the ACLP website, (www. childlife.org) include educational modules, EBP statements regarding common child life interventions and a graphic representation of the EBP model in child life. In child life practice the application of EBP means that clinicians consider and integrate three factors when making decisions about best practices in care: their knowledge of best research evidence (which will be considered in this chapter), their professional experience and their understanding of patient values and preferences. When all these perspectives are examined, quality and effectiveness of care and patient outcomes will improve. EBP is certainly not unique to child life. In fact, it is a practice that is commonly used by most other healthcare disciplines, a condition that allows child life specialists to consider the evidence gathered by other professionals in making decisions about daily practices. By integrating the evidence and

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perspectives of other disciplines, as we will do in this chapter, child life specialists can be more confident that their work is aligned with current practices in healthcare and is less prone to bias that may come from a singular perspective. A common misconception about EBP is that it requires one to conduct research, a misconception that might result in avoidance of this approach. While EBP involves the awareness and use of research, it does not require the creation and design of studies. The daily work of most child life specialists does not allow time for this. Instead, EBP involves reading, evaluating, and applying the conclusions of empirical evidence to practice as one of its components. Critical evaluation and use of evidence collected through research is not the only means of practicing in an evidence-based manner. Professional expertise gathered through reflection on one’s own practice provides an experiential form of evidence. For instance, when child life specialists, over time, notice and document the successes and failures of certain interventions, this experience becomes evidence upon which to base their future work, a method of practice that is akin to the research process. The practice becomes even more “evidence-based” when child life specialists find evidence in the research literature supporting those observations. Since child life care is provided to individuals, each of whom is unique, the preferences and values of individual patients must be considered when making decisions about their care. This consideration of individuals guards against the child life professional making generalizations or assumptions that could lower the effectiveness of care. The following is an example in which all three perspectives (i.e., research evidence, evidence from one’s personal experience and observations, and knowledge of the individual) are considered when making evidence-based decisions about child life care. An eleven-year-old boy, Nolen, needs to have his blood drawn for a lab test. Erin, the child life specialist in the clinic where the procedure will occur, is consulted to make an assessment and provide intervention. Erin is aware of empirical evidence that providing age-appropriate preparation to children for procedures, and the presence of a caregiver during the procedure, typically decreases anxiety and increases coping behaviors in both parents and children. Her own experience tells her that most eleven-year-old boys respond well to preparation including the use of a hand-held device to display pictures of the blood draw procedure, along with verbal explanation. Erin notices in the patient’s chart that he has never experienced a blood draw. In conversation with the boy’s mother, she learns that his mother has fainted during other similar procedures involving her other children. Erin begins preparing Nolen with photos and notices that, as she does

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so, he turns his head and shudders. She switches her approach and takes out a tourniquet, alcohol pad and test tube to show him. Nolen becomes engaged again and asks about the needle that will be used to access the blood from his arm. Erin produces a needle and offers Nolen the chance to practice inserting the needle into the arm of a blank cloth doll. He is interested and completes the “procedure” on the doll. When the phlebotomist enters the room to do the blood draw, Erin stands beside Nolen and his mother. This allows her to provide support to Nolen during the procedure using deep breathing techniques and a large picture book with trivia about his favorite sports team, which also blocks mother’s view of the procedure. Nolen’s mother remains engaged in supporting him, but maintains a focus on the book and conversation with Nolen to avoid seeing the blood draw and fainting. Erin used her knowledge of empirical evidence, her own knowledge gained through professional experience, as well as her knowledge of this individual patient and family, to make a sound care plan for this situation with the best potential for positive outcomes.

By its very definition, evidence-based practice involves the application of research and experience to the care of children in real healthcare situations. The use of EBP in decision making for daily practice supports the obligation of all child life specialists to practice responsibly, with the best information to guide their choices. This approach is also beneficial for child life professionals educating students and mentoring new professionals. It allows experienced child life specialists to both model the habit of continuous learning and to foster consistent improvement of care. Integrating EBP into daily practice does not always come easily or naturally. There are barriers that may deter some from adopting this intentional, beneficial approach. The Evidence-Based Practice Committee of the ACLP has conducted surveys of child life professionals to identify, and hopefully minimize, barriers to using EBP. According to a February 2015 survey (Bonjour, Moatz & Titzer, 2015), the most frequently reported barrier to engaging in the EBP process was a lack of non-clinical time to devote to EBP activities. This was closely followed by concern over a lack of resources to support the EBP process (e.g., financial support, time and instruction on effective methods of identifying evidence). Also noted was the lack of knowledge and experience about EBP by the staff and directors of child life programs. A portion of these concerns has been addressed by the ACLP’s Evidence-Based Practice Committee, which has developed multiple tools and resources to educate and support the engagement of child life clinicians, managers, academicians and students with this approach. For example, the committee has created training modules on ways of engaging in EBP,

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resources that are in the ACLP’s Resource Library, available at www. childlife.org. Evidence-based practice statements on foundational components of child life practice (e.g., psychological preparation, assessment, and therapeutic play) are also available through the Resource Library. There are many ways to participate in and foster the use of evidencebased practice, only one of which is conducting research. For example, child life specialists can gather and critically evaluate current research studies to create evidence-based or “best practice” statements for their own facilities. In addition, individuals and entire child life programs can plan activities, such as journal clubs or in-services, to translate research findings into practice. ACLP Bulletin has published a recurring column detailing specific ways that child life specialists can engage in activities supporting these efforts. It is the professional responsibility of child life specialists to provide psychosocial care to children and their families supported by the most current and relevant evidence. By engaging in EBP, child life professionals can more effectively remain grounded in the foundational values of the profession while being open minded and progressive in the delivery of care. The review of literature found in the remainder of this chapter can support these efforts. Takeaway Points: • EBP is defined as “the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients” (Sackett, Rosenberg, Muir-Gray, Haynes & Richardson, 1996, p. 71). • EBP in child life practice means that clinicians use three factors to make decisions about best practices in care: their knowledge of best research evidence, professional experience and understanding of patient values and preferences. • There are many ways to participate in and foster the use of evidencebased practice, whether one is a student, clinician or academician. RESEARCH SPECIFIC TO CHILD LIFE As noted, the volume of research literature specifically related to the profession of child life remains modest, but has increased since the last edition of this chapter, which is an encouraging sign. This research encompasses two principal areas: professional issues, which includes the education of child life specialists, as well as the prevalence, practice and perceptions of their work, and research addressing the efficacy of child life work using a variety of approaches in various clinical settings.

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Professional Issues Development of the Profession As the profession of child life developed over the second half of the twentieth century, a number of surveys were conducted investigating the prevalence and functioning of programs in the United States and Canada (Dombro, 1967a, 1967b; McCue, Wagner, Hansen, & Rigler, 1978; Rutkowski, 1978; Larsen, 1980; Mather & Glasrud, 1981; Ricks & Faubert, 1981; Snow & Triebenbacher, 1996). Questions addressed by these studies include characteristics of the programs, staffing patterns, areas of the hospital served, and the educational preparation of the people in the field. As a group, these studies demonstrated the rapid growth of the profession over this period of time. Two subsequent studies considered the extent to which child life programs provide targeted services. Newton, Wolgemuth, Gallivan, and Wrightson (2010) surveyed hospitals in the United States and Canada regarding services provided to siblings of hospitalized patients. They noted that despite evidence that child life intervention with siblings can be effective (e.g., Gursky, 2007), fewer than half of the hospitals (48%) provided systematic support to siblings. The most frequently cited barriers to doing so were lack of staff and funding. The work of child life specialists in neonatal intensive care units (NICUs) was considered by Smith, Desai, Sira and Engelke (2014) who conducted a survey of child life specialists regarding their work in these settings. The services most commonly reported by the child life specialists were sibling support, bereavement support and education provided to the family regarding hospital routines and procedures. Although the majority of the respondents said they participated in discharge planning, fewer than half felt they were fully integrated with or visible to other members of the NICU healthcare team. Apart from these two studies, no additional research on the overall development of child life programs was found. This may be due to the fact that the profession and individual programs are better established today and that information on numbers of programs and practitioners is now readily and systematically available through the ACLP. The ACLP makes available a web-based, self-reported listing of child life programs. The program directory is accessible to ACLP members at www.childlife.org. Statistics such as number of employees, coverage areas, and internships are posted. In addition to program details, specifics of compensation for child life careers are available on the ACLP website by searching “compensation” once on the site.

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Training of Child Life Specialists Only a few studies have examined the education and training received by child life specialists. Parvin and Dickinson (2009) specifically focused on the content of educational programs in child life and the extent to which they provide students with formal coursework and experiences related to end-oflife issues. This survey of 26 academic programs indicated that each, to some extent, offered instruction in end-of-life care, with 69% of the programs providing a full course and 23% covering the content through a major module within a course. The authors noted that, on average, child life specialists in training were provided with more than twice the number of contact hours on the this topic than students in baccalaureate nursing programs or medical schools. Smith et al. (2014) examined training provided to child life specialists for working in a NICU setting. Findings indicated that the training they had received came from a variety of sources, including “on-the-job” experience and workshops. Less frequently cited was preparation received from academic training programs. In their study of the use of pain management strategies, Bandstra, Skinner, LeBlanc, Chambers, Hollon, Brennan and Beaver (2008) examined the extent to which child life specialists felt prepared to engage in this work. This survey of 607 child life specialists found involvement in pain management to be a common part of practice, with 65% using interventions with more than 50% of their patients, most often by providing information or preparation, reassurance and positive reinforcement. Respondents felt best prepared to provide preparation and medical and therapeutic play and less so for using other techniques such as virtual reality, counter-irritation and hypnosis. The most frequently used sources for gaining information on pain management techniques were said to be books and participation in workshops and seminars. The respondents indicated that they would welcome the opportunity to acquire additional knowledge and skills. The research of Bandstra et al. (2008) represents the only analysis of its kind we have found to date examining the prevalence of the use of evidencebased practice by child life specialists. To do so, the researchers asked a panel of experts to rate the effectiveness of a number of possible approaches to pain management and compared these ratings with strategies child life practitioners reported using most frequently in their work. Although child life specialists expressed a belief that the strategies they used were considered to be most effective, some of the strategies they reported using most commonly (e.g., medical play or therapeutic play) have little or no empirical support in helping children through painful events (as opposed to interventions rated as more effective by a panel of experts, such as behavioral distraction). Factors most associated with reported use of effective pain management

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strategies included the proportion of patients with whom they use the techniques, their perceived knowledge and skill in the techniques, and their status as a Certified Child Life Specialist.

Perceptions of the Work of Child Life Specialists The nature of child life work and the perceptions of that work by child life specialists themselves and by others has been repeatedly examined over the years. Early studies investigating the nature of child life work and interactions with children, their families, and staff members indicated that child life specialists are highly visible on inpatient units, with their interaction focused on children and, to a lesser extent, their families (Gaynard, Hausslein, & DeMarsh, 1989; Giles, Bradbard, & Endsley, 1987; Cole, Diener, Wright & Gaynard, 2001). Despite the visibility of child life specialists in pediatric settings and the growth of the profession in the past several decades, the work of child life specialists is still not as well-known or understood as that of other professions, both among families served by child life and by their fellow healthcare professionals. In a study of parent perceptions, LeBlanc, Naugler, Morrison, Parker and Chambers (2014) found that most parents (65%) reported that they were unaware of child life services prior to their child’s admission, but that knowledge increased over the course of the hospitalization. Parents reported that their children received the services they felt that their child required and were satisfied with care they received. Parent ratings of their child’s temperament were associated with their perceptions of services needed by the child, as well as those actually received; children rated as having a more challenging temperament received more services. Differences in perceptions of child life work by other healthcare professionals have long been noted in the literature. Gaynard (1985) found that child life specialists’ views of their own work differed significantly from that of their colleagues. Child life specialists typically noted their role as a member of the healthcare team—a role infrequently cited by others. Conversely, other professionals frequently mentioned the role of child life in “amusing and entertaining” patients, while child life specialists did not perceive themselves in this role. Overall, Gaynard found child life specialists to be ranked highly in terms of their “importance” to the physical and psychosocial wellbeing of the patient (exceeded only by physicians and nurses), but low in power. Cole et al. (2001) found similar discrepancies, with child life specialists citing their role in preparation, patient and family support, and advocacy more frequently than other professionals, while mentioning entertainment of patients less often. In a finding similar to that of Gaynard (1985), the impor-

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tance of the child life specialist was rated highly, although these ratings differed by position. Child life specialists and hospital administrators rated the importance of child life more highly than did physicians and nurses. However, the frequency of contact that a respondent had with child life specialists was associated with a tendency to increase ratings of the importance of child life. Regardless of the relatively high rating of child life importance, child life specialists were viewed as having little power. More recent studies indicate that certain differences in perceptions and approaches persist. For example, Smith et al. (2014) noted that child life specialists working in NICUs did not feel fully integrated to the team. A portion of this difference may be attributable to different professional training and goals. Kaddoura, Cormier, and Leduc (2013) interviewed child life specialists and nurses regarding the strategies used by each to help chronically ill patients cope with stress. While the study revealed many similarities in perceptions (e.g., on the importance of family-centered care, that the greatest stressor for children was fear of the unknown, and that honesty with patients is important), differences were also reported. In particular, nurses more commonly considered children’s crying to be a symptom of stress, while child life specialists tended to view it as a means of coping.

Emotional Impact of Child Life Practice Research in the preceding section indicates that child life is not always as well recognized, understood or valued as one might hope. Ambiguity of roles fulfilled by child life, the discrepancies in perceptions about their work and its importance, and the limited power associated with the position are conditions that may negatively affect the emotional well-being of child life specialists potentially leading to burnout and ultimately leaving the profession—a condition compounded by the emotionally challenging nature of the work. Snow and Triebenbacher (1996) found that 8.5% percent of job turnover among child life specialists was due to job dissatisfaction or burnout. Holloway and Wallinga (1990) found role ambiguity to be associated with the levels of burnout noted among child life specialists, with high levels of ambiguity associated with greater exhaustion and depersonalization and lesser feelings of personal accomplishment. In their survey of child life specialists from the United States and Canada, Munn, Barber and Fritz (1996) also found role ambiguity to be a strong predictor of emotional exhaustion and job dissatisfaction. In addition to role ambiguity, Holloway and Wallinga (1990) found burnout to be associated with perceived adequacy of salary, ability to fulfill the demands of the job, and number of years in the current position.

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Certainly, time has passed since these studies were conducted, a period during which the profession of child life has continued to grow and be recognized. As a result, some of these perceptions and conditions identified in this research may have changed, although the findings of Smith et al. (2014) indicate that a lack of full integration and acceptance of child life services persists in at least some settings. Nevertheless, child life specialists continue to work in stressful settings and are required to perform what has been described as “emotional labor,” involving, among other things, the need to control one’s feelings and emotions when dealing with patients and families. Working under such conditions may negatively affect the work of child life specialists, resulting in compassion fatigue, emotional exhaustion, burnout and ultimately job turnover. Recent research on child life specialists indicates that they do experience a substantial amount of job-related stress and are at risk for compassion fatigue and burnout at rates comparable to that of other human service professions working under similar conditions (Fisackerly, Sira, Desai, & McCammon, 2015; Holloway & Wallinga, 1990). Brinson (2012) reports that 75% of the child life specialists surveyed were at risk for compassion fatigue or burnout. The extent of this risk may be associated with the intensity of the environment (Fisackerly et al., 2015). Child life specialists who worked in settings where they commonly experience the death of patients, the intensive care unit or hematology/oncology in particular, were at higher risk for symptoms of compassion fatigue. The same was not true, however, for those working in emergency departments. Despite the apparent emotional risks child life specialists face in their practice, research indicates that those risks can be moderated through a supportive work environment, including the presence of a strong supervisory relationship. Munn et al. (1996) found supervision to be helpful in moderating job-related stress, a relationship that was particularly helpful to those in the field five years or less. Conversely, the absence of supervision was associated with job dissatisfaction and intentions to leave a child life position. Although Brinson (2012) did not directly address the relationship between supervision and burnout, she noted anecdotally that respondents who reported highest risk scores worked in one-person programs. The presence of peer support and a positive, supportive work setting are also helpful in mediating the effects of job-related stress. The opportunity to debrief with colleagues following the death of a patient was found to be helpful in reducing susceptibility to compassion fatigue (Fisackerly, et al., 2015). Shuck, Shuck, and Reio (2013) found that factors such as a positive work climate and the opportunity for professional growth were associated with bet-

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ter ability to perform the emotional labor that is a common part of the child life role, with a reduction in emotional exhaustion, and with a diminished intent to leave their jobs. Takeaway Points: • Research on the development of child life programs from the last third of the twentieth century onwards indicates great growth in the profession. • Insufficient staff and funding have been cited as barriers to the provision of child life services. • Only limited research exists on the education of child life specialists and their use of EBP. • The work of child life specialists can be stressful and can lead to emotional exhaustion, compassion fatigue, burnout and turnover. • Perceptions of child life services vary based on the services provided and the extent to which child life specialists are integrated into the healthcare team. • Discrepancies in perceptions about child life work and its importance, along with the limited power associated with the position, may negatively affect the emotional well-being of child life specialists. • Susceptibility to negative emotional impact can be reduced by supervision, opportunities to process emotional issues with peers, opportunities for professional growth, and the creation of a supportive workplace.

Research on Efficacy of Child Life Programs and Their Components The second major category of research directly examining the work of child life specialists considers the effectiveness of interventions used by the child life specialists to reduce patient and family stress and anxiety and to enhance coping abilities. Most of these studies focus on the work of child life specialists in specific settings (e.g., the emergency department or day surgery unit) or on the use of particular interventions with a targeted population. The only study to evaluate the global effects of the implementation and presence of a comprehensive child life program is that of Wolfer, Gaynard, Goldberger, Laidley, and Thompson (1988), a quasi-experimental study under the sponsorship of the Association for the Care of Children’s Health (ACCH). Through this research, a model child life program was developed and implemented by experienced child life specialists at Phoenix Children’s Hospital in Arizona. The child life program consisted of a comprehensive set of inter-

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ventions, including group and individualized play experiences, stress-point preparation for impending events, and facilitation of parent involvement in the care of their children. Although the program developed served the full pediatric population from infants through adolescents, a subset of children ages 3 to 13 years were selected for inclusion in the study. Children who participated in this program were evaluated on a wide range of stress, coping, adjustment, and surgical recovery measures. Their scores were contrasted with those of a control group of children who had been hospitalized prior to the implementation of the child life program when child life services were minimal. The researchers found that children who had participated in the child life program faired significantly better than control group children on 18 of the 21 outcome variables assessed. More commonly, child life research has addressed the impact of interventions in specific settings or with specific populations, including the preparation and support of children undergoing day surgery. Brewer, Gleditsch, Syblik, Tietjens, and Vacik (2006) examined the effectiveness of a formal preparation program provided to day surgery patients by a child life specialist prior to the procedure. The intervention consisted of a 20-minute session that included a tour, explanation of the procedure and manipulation of relevant equipment. Changes in anxiety measures from the pre- to post-operative period were significantly better for children receiving preparation than for children in a control group. The work of child life specialists in emergency departments has been examined repeatedly, with the preponderance of this research indicating that the presence of child life programming is effective in fostering a positive environment and in helping children cope with stressful procedures. Alcock, Goodman, Feldman, McGrath, Park and Cappelli (1985) considered the impact of child life presence on the environment and waiting behaviors of children and families in this setting. When a child life specialist was not available, children were observed more frequently in passive behavior (defined as, “not interacting with the environment and not playing, painting, or reading,” p. 176) than when a child life specialist was present. In addition, parents were observed playing with their children more when a child life specialist was present. Research has also evaluated the effectiveness of child life specialists in the emergency department in providing procedural support. Alcock, Feldman, Goodman, McGrath, and Park (1985) contrasted the responses of children in the emergency department for sutures with or without the provision of a child life intervention. Although few significant group differences were found in this study, those that emerged suggested benefits of the child life interventions provided (e.g. preparation information about the environment, procedure, play and coping support). The presence of child life was

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found to be most effective for patients 11 to 14 years of age who required six or more sutures. Children in this category who had had contact with the child life specialist reported significantly lower levels of anxiety than among those who had not. In addition, parent satisfaction was significantly higher among those who received the child life intervention. Further evidence of the value of child life intervention with children receiving sutures in the emergency department is provided by Gursky, Kestler, and Lewis (2010). In this study the child life specialist provided information through demonstration and role playing with a doll, discussed preferred coping strategies, and accompanied and supported children and parents during the procedure. Children receiving this intervention were observed to experience lower levels of stress during suturing. Parents also perceived less stress in their children and were more satisfied with their care than those in a control group without child life involvement. The effectiveness of child life preparation and procedural support in the emergency department for children undergoing another common, yet intrusive event, the insertion of an angiocatheter, was examine by Stevenson, Bivins, O’Brien, & Gonzalez del Ray (2005). Lower levels of behavioral distress were observed among the prepared children prior to the catheter insertion, an effect that was most notable among children 4 to 7 years of age. Heilbrunn, Wittern, Lee, Pham, Hamilton, and Nager (2014) examined children 5 to 7 years of age, contrasting the effects of a brief child life intervention (a brief introduction, assessment of the child’s experience and presenting condition and a child life activity) with a “hospital clown” intervention (contact of a similar length involving bubbles, jokes, and balloons) or no intervention at all. Contact with the child life specialist resulted in reduced anxiety among children immediately after the intervention, but did not carry over to examination by the physician, a result that may be due to the fact that, unlike in the other studies cited, child life presence did not continue during the procedure. Research has also addressed the effectiveness of child life services for children undergoing imaging procedures, supporting the value of the service provided. Durand, Young, Nagy, Tekes, and Huisman (2015) considered the possibility that mandatory child life involvement might reduce the need for children undergoing magnetic resonance imaging (MRI) procedures to do so under general anesthesia. Prior to the period of the study, child life consults for MRI patients were only done upon request. The child life specialist provided detailed information on the procedure in advance of the event and, on the day of the procedure, reviewed this information and the use of coping strategies. In contrast to the prior period when the child life consult was optional, there was a significant reduction in the number of patients requiring general anesthesia. In the other study regarding child life involvement

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and imaging procedures (Tyson, Bohl, & Blickman, 2014), children received a comprehensive set of child life services, including assessment, information, support during the procedure and additional interventions as needed to assist the child and family. Assessments were made through questionnaires completed by children, parents and staff regarding satisfaction with care received and perceptions of children’s pain, fear and distress. Positive effects of the intervention were noted on 19 of 24 outcome measures. Two studies considered the value of child life intervention in moderating the pain and anxiety of children undergoing dressing changes following burns. Hyland, D’Cruz, Harvey, Moir, Parkinson, and Holland (2015) provided children with a multicomponent intervention consisting of age-appropriate preparation, parent support and education, and the rehearsal of distraction techniques individualized for the child, all provided by a child specialist who remained with the child and family during the procedure. The intervention resulted in significantly lower levels of patient pain and anxiety. Parents in the child life group reported an increase in their own anxiety, but rated their children as lower in pain and anxiety. A second study, Moore, Bennett, Dietrich, and Wells (2015), focused on the potential value of a targeted intervention, a directed medical play session, on the responses of children 3 to 7 years of age to burn wound care. With the use of relevant equipment, the child life specialist guided the child through the procedure prior to the dressing change. The play session resulted in positive, but not statistically significant, changes in mean scores of children’s pain and behavioral distress, a result that may be due to small sample size used and that the intervention was limited to the period prior to the procedure. Although child life specialists are frequently involved in the support of siblings of the child receiving care, only one study focused on the potential benefits of these interactions. Gursky (2007) identified siblings of children who would be hospitalized for a minimum of two days. The siblings, who ranged in age from 6 to 17 years, were provided with a half-hour session consisting of age-appropriate information about the hospitalization, including the child’s illness or injury, medical treatment or procedures required, equipment present in the child’s room and the anticipated length of stay. Siblings who received this intervention had significantly lower levels of anxiety afterwards, unlike a control group of siblings who did not have the benefit of this session. Takeaway Points: • Child life interventions of play, preparation and procedural support have been successfully applied in a variety of settings, and with children undergoing a range of procedures.

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• The opportunity for child life specialists to support children during procedures may enhance the positive effects. • The positive effects of child life interventions may extend to siblings and parents. • While not all interventions directly reduce parental anxiety, the attention given to their child may increase their satisfaction with and perception of the child’s experience. • The positive outcomes of child life involvement may result in reduced need for more intrusive and costly medical interventions, such as general anesthesia. CHILDREN’S RESPONSES TO HOSPITALIZATION AND HEALTHCARE ENCOUNTERS

Effects of Hospitalization on Children’s Behavior Early research on the psychosocial aspects of pediatric healthcare addressed the issue of whether hospitalization (especially hospitalization for surgery) was associated with negative behavioral change in children. In their 1965 review of the literature, Vernon, Foley, Sipowitz, and Schulman noted a bias in this research, observing that it considered only the possibility of the experience resulting in either no behavioral change or change in a negative direction, rather than allowing for the possibility that the challenge of hospitalization may result in positive change or growth. To address this concern, Vernon, Schulman, and Foley (1966) developed the Post-Hospital Behavior Questionnaire (PHBQ), a measure in which the parent indicates whether a number of specified behaviors that potentially indicate emotional distress occur more or less frequently than they did prior to hospitalization. This instrument continues to be used in current literature to explore the longer term effects of these experiences. Reviews of research using the PHBQ and other, similar measures of psychological response indicate that children, especially older infants through preschoolers, do experience a degree of emotional distress in response to hospitalization during the period of treatment and following discharge (Vernon et al., 1965; Thompson; 1985). Anxiety was found to be the most commonly reported emotional response of children to hospitalization in studies reviewed by Thompson (1994). Other indicators of distress were increased aggression, attitudinal and affective changes, and disturbances in sleep or eating. Most recent studies provide continuing evidence of significant negative reactions among children following hospitalization and healthcare proce-

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dures, this despite increased sensitivity over the years to the psychosocial care of children and their families. Studies using the PHBQ to assess the responses of children following elective surgical procedures and general anesthesia indicate that more than 80% of the children exhibit the onset of negative behavioral change upon their return home (Fortier et al., 2013; Fortier, Del Rosario, Rosenbaum, & Kain, 2010), and that approximately one-third of such patients continue to exhibit negative behavioral responses two weeks afterwards (Fortier et al., 2013; Karling, Stenlund, & Hagglof, 2007). An exception to this pattern is provided by Howard, Lo, Sheppard, Stargatt and Davidson (2010) regarding children who had undergone minor, elective procedures involving general anesthesia. One week after the procedure parents rated their children’s responses as slightly, but not significantly, worse than the day prior to anesthesia. However, one month following the event both their physical and psychosocial status was rated as improved. Obviously, not all children are affected by hospitalization and medical treatment in the same way. There are numerous factors that potentially affect the emotional responses of children to healthcare encounters. As mentioned above, the age of the patient appears to be one of the most critical variables. Accumulating evidence over the years indicates that the period of time between 6 months and 4 to 5 years is the age when children are most vulnerable to hospitalization and medical encounters (Brodzinski & Iyer, 2013; Fortier, Del Rosario, Rosenbaum, & Kain, 2010; Karling, Stenlund & Hagglof, 2006, 2007; Stargatt et al., 2006; Kain, Mayes, O’Connor, & Cicchetti, 1996; Mabe, Trieber, & Riley, 1991; McClowry, 1988; King & Ziegler, 1981). Individual studies identify other factors potentially associated with negative emotional reactions following a medical encounter. These include parent anxiety (Stargatt et al., 2006), previous hospitalization, and previous behavioral problems (Karling, Stenlund & Hagglof, 2007). One additional factor virtually absent from the research literature is consideration of the effect of culture on the responses of children following hospitalization or medical care. The exception is a study by Fortier et al. (2013), which contrasted the responses of English-speaking white families, Englishspeaking Hispanic families and Spanish-speaking Hispanic families. Most parents (83%), across all cultural/language groups, reported the onset of negative behaviors postoperatively, however significant differences were noted between groups. Spanish-speaking parents of Hispanic descent were significantly less likely to report such change than English speaking white parents, even after controlling for socio-economic differences. The potential source of this difference is unclear, yet it indicates the need for more attention to the influence of culture on children’s responses to medical care.

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Another consistent finding to emerge from the research literature is that there are substantial individual differences in the extent to which children display negative responses following hospitalization and medical care, both in terms of the intensity and the duration of their response. Although it is not uncommon for children, particularly younger children to display post-medical behavioral change, not all do so. On the other hand, a portion of children seem to display a substantial degree of behavioral change even, at times, in response to relatively brief medical encounters. For some children, this response persists for an extended period of time, from weeks to months. Brodzinski and Iyer (2013) studied children who visited the emergency department for minor procedures (abscess drainage or laceration repair), documenting the proportion of children who displayed significant behavioral change, which they defined as five or more negative behavioral changes on the PHBQ. One week following the emergency room experience, 20% of the children displayed this degree of behavioral change. Stargatt et al. (2006) considered the responses of children following procedures involving general anesthesia and determined that 26% displayed “significant behavioral change”—deterioration in seven or more behavioral items on the PHBQ. For 16% of the children, this degree of response was still evident at day 30. The studies reviewed to this point suggest a common pattern—that many, perhaps most, children experience some behavioral change immediately following a medical event, yet the proportion continuing to experience negative change declines over time. What accounts for the individual variation in intensity or duration of response following medical experiences? Some researchers have suggested that it may be the severity or traumatic nature of their condition or the intrusiveness of the treatment children receive. For example, Rennick, Johnston, Dougherty, Platt, and Ritchie (2002) found that children who were more severely ill, and those who had more invasive procedures during hospitalization, had more medical fears, a lower sense of control over their health, and post-hospital responses that lasted for a longer period of time. Stargatt et al. (2006) found that significant behavioral change one month after discharge occurred among children with longer hospitalizations. Some researchers have questioned whether the persistent, extended response noted in a portion of children following medical events is evidence of Post-Traumatic Stress Disorder (PTSD). Such studies have examined the relationship between characteristics of the child’s medical encounter (e.g., the traumatic nature of the medical condition or the length of hospitalization) and the prevalence of symptoms of PTSD. Landolt, Boehler, Schwager, Schallberger, and Nuessli (1998) contrasted so-called “high-risk” patients (e.g., those involved serious accidents) and “low-risk” patients (hospitalized for planned elective surgery), as well as their parents, for symptoms of PTSD

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six to eight weeks after discharge. They found substantial incidence of PTSD symptoms among high-risk children (52%) and parents (68 %) as compared to low-risk children (9%) and their parents (20%). Murray, Kenardy and Spence (2008) also found the incidence of PTSD to be higher among children 7 to 16 years of age, hospitalized following a traumatic injury (18%) versus a “non-traumatic” illness (4%). Franck, Wray, Gay, Dearmun, Lee and Cooper (2015) evaluated PTSD symptoms among parents of children hospitalized for three or more nights three months after discharge and found symptoms present in 32.7% of them, with 21.5% having elevated scores. The research literature indicates that behavioral change is not an uncommon result of hospitalization or medical care, yet in most instances the change is of relatively brief duration. Thompson and Vernon (1993) conducted a meta-analysis of 26 studies that had used the Vernon Post-hospital Behavior Questionnaire. They concluded that, in the absence of interventions designed to reduce psychological upset, negative behavioral change tended to increase significantly following hospitalization. However, this effect had largely disappeared within two weeks. Nevertheless, studies have consistently identified a small percentage of children for whom disturbances persist for months (Thompson, 1985; Rennick et al., 2002). For such children, the stressors of hospitalization, illness, and the accompanying, invasive treatment may have resulted in symptoms of post-traumatic stress disorder. Takeaway Points: • The onset of negative behavioral change is common following hospitalization/healthcare experiences. • Younger children are likely more vulnerable to negative behavioral changes following hospitalization. • Negative behavioral changes tend to decline within weeks of the healthcare event; however, for some the symptoms persist. • The severity or traumatic nature of the child’s condition may contribute to higher levels or longer duration of behavioral change and may be an indication of PTSD. • Children’s responses to healthcare experiences may vary based on cultural differences.

Stress-Coping Responses Other researchers have examined the behavior of children during hospitalization and medical care, viewing the behavior exhibited as evidence of children’s attempts to cope with stressful circumstances, rather than as a positive or negative response. Coping responses may be categorized as effective

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or ineffective, based on how well the strategies actually manage stress in a given situation. This line of research is based upon the work of Lazarus and colleagues regarding stress and coping (e.g., Lazarus & Folkman, 1984). According to the Lazarus model, stress is viewed as “a relationship between the person and environment that is appraised by the person as taxing or exceeding his or her resources” (p. 21). Under such circumstances, the individual uses coping strategies or behaviors to manage the relationship between the person and the environment. Coping efforts, according to Lazarus and Folkman, may be either emotion-focused (i.e., directed toward regulation of one’s emotional responses to a potentially stressful circumstance) or problem-focused (with efforts directed toward managing or changing the situation). Researchers such as LaMontagne (1985, 1987, 2000) suggest that by recognizing children’s coping as a dynamic process, and by understanding and appreciating the appraisals children make of their circumstances, healthcare professionals are in a better position to support children’s coping efforts and reduce their levels of stress. Varying forms of coping behavior have been identified among children, with the most basic distinction being made between strategies that are active (i.e., vigilantly seeking information, support) or avoidant (e.g., restricting their access to information about the event, avoiding discussion of the events). Strategies or approaches selected may vary within the individual, with differing circumstances, and over time. LaMontagne (1985), for example, found some children to be “combination copers,” who had acquired much information about the nature of an impending surgery, but denied any knowledge of post-operative complications or potential negative effects of surgery. In another study, Sposito et al. (2015) explored the types of coping strategies used by children undergoing chemotherapy. The analysis of the interview responses given by school-aged children indicated that children developed their own coping strategies to manage the stress of medical care. The most common coping strategies reported among children in this study included gaining understanding of the reason for treatment, finding relief from side effects/pain, the presence of familiar food, playing, having hope for a cure, and reliance on religion. While play is considered an essential element in a children’s development and a catalyst for their understanding of new situations, it appears infrequently in the literature related to coping. Capurso and Pazzagli (2016) conducted a literature review to examine the manner in which play has been studied as a part of a child’s coping with stress, whether healthcare related or other types of stress. The review found that just over half of the included studies on children’s coping used play as a part of the coping instruments. For instance, a qualitative study of 4–6-year-old children in Finland, hospitalized and well, examined children’s reports of their fears about the hospi-

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tal. The hospitalized children stated significantly more frequently than well children that play was a preferred coping strategy (Salmela, Salantera & Aronen, 2010). However, when play was considered in other studies, it was usually categorized as a distraction or avoidance strategy. Based on the literature review, the researchers recommended that a clearer conceptual connection between play and coping be determined and articulated. Furthermore, because of the supportive theoretical framework, they encouraged clinicians to continue advocating for play as a valuable coping tool for children (Capurso & Pazzagli, 2016). Studies have also examined the relationship between children’s observed coping behaviors and other factors, including locus of control, age, type of illness, and the amount of information children acquired related to a procedure or event. For example, studies by LaMontagne (1984, 1985, 1987) revealed that children who were classified as “active copers” had greater internal locus of control than did children identified as either “avoidant” or as using a combination of active and avoidant approaches to coping. Moreover, LaMontagne found some evidence that preferred coping approaches may vary with age. In this research, older children were more likely to use active coping modes, while children categorized as “avoidant” tended to be younger. In an additional study, LaMontagne, Hepworth, Cohen, and Salisbury (2003) examined adolescents’ coping strategies, both short and long term, following spinal fusion surgery. The findings supported previous studies’ results that adolescents exhibiting a vigilant coping style pre-operatively typically had better long-term recovery outcomes. It also found that teens with a vigilant coping style and an internal locus of control had more positive outcomes one month post-operatively than those with an external locus of control, especially as the age of the adolescents increased. Teens with a more avoidant coping style and external locus of control had the most difficulty throughout the surgery and recovery phase. Spirito, Stark, and Tyc (1994) concluded that acutely ill children (7 to 17 years) were more likely than their chronically ill peers to use avoidant coping strategies. Peterson and Toler (1986) discovered that children who used the active coping strategy of “information seeking” were likely to have acquired more information prior to hospitalization than other children. Information-seeking behavior was also found to be predictive of more adaptive behavior during blood tests. Takeaway Points: • Healthcare professionals can more effectively support children’s coping if they can understand and respect children’s unique appraisals of their situations.

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• Children report that opportunities to play and engage in other enjoyable, familiar activities and routines (i.e., desirable food, religious rituals) during medical care help them cope more effectively. • A vigilant coping style combined with an internal locus of control (belief that one can impact circumstances) has been shown to be associated with more positive outcomes. EFFECTIVENESS OF INTERVENTIONS USED BY CHILD LIFE

Play Play is, perhaps, the most ubiquitous tool used by child life specialists. It is used to promote continuing development among patients, to normalize medical environments, to approach difficult circumstances, facilitate emotional expression, to communicate information, and to enhance children’s understanding of medical events. In this section we will provide an overview of the major themes that emerge from the research literature regarding play in healthcare settings: • that medical encounters may disrupt children’s play • the presence of adults and access to materials can promote play • children in healthcare settings often use play in what appears to be a therapeutic manner • active efforts to promote and supplement play have positive benefits for children. Although play typically occupies most of a child’s waking hours, studies indicate that hospitalization tends to, at least temporarily, disrupt play activity. For example, Tisza, Horwitz, and Angoff (1970) observed minimal play among children in a hospital playroom in the absence of a parent or parent substitute, such as a playroom supervisor. However, the level of children’s play was found to increase over successive days of hospitalization. Similarly, Burstein and Meichenbaum (1979) observed the play of children before, during and after hospitalization and found a greater disruption of play when hospitalized. Studies have also contrasted the play of children in medical environments with similar children in community-based settings. Gariepy and Howe (2003) found children with leukemia to exhibit fewer play behaviors and lower frequency of parallel, group, and dramatic play. Keilhofner, Barris, Bauer, Shoestock, and Walker (1983) observed levels of “playfulness” and found them to be lower among hospitalized children than their non-hospitalized counterparts.

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The causes of the disruption in these studies are not always clear, but may include anxiety, unfamiliarity of the surroundings, and the absence of adult guidance, as well as physical constraints or the child’s medical condition. Whatever the causes may be, research indicates that the presence and involvement of adults is capable of increasing the level or amount of children’s play, results supported by the reviews of Burns-Nader and Hernandez-Reif (2016) and Moore and Russ (2006). Adult presence has been found to help children become more secure and increase their amount of play behavior (Tisza et al., 1970) and to enhance the developmental level of their play (Keilhofner et al., 1983), a condition that the researchers found to be true for both hospitalized and non-hospitalized children. This effect has been observed in a variety of medical settings, with the presence of child life specialists associated with increased levels of children’s play in the intensive care unit (Cataldo, Bessman, Parker, Pearson, & Rogers, 1979), the emergency department (Alcock, Goodman, Feldman, McGrath, Park, & Cappelli, 1985), and outpatient clinics (Williams & Powell, 1980). Another question addressed in the literature is whether the play children engage in, either spontaneously or facilitated by adults, is used in a therapeutic manner to address their fears or concerns. One way of assessing this is to examine the materials selected by children and the themes of their play. Nabors, Bartz, Kichler, Sievers, Elkins, and Pangallo (2013) conducted such a study contrasting the play observed in children with chronic illnesses and their siblings with that of a comparable group of children in a community based-based setting. Children within each group were presented with a selection of play materials including medical play items and creative arts projects. Children with chronic illness, as well as their siblings, selected medical play equipment more frequently than did the others. Moreover, their medical play was found to be more realistic and complex, frequently reflecting themes that indicated therapeutic content (e.g., the “patient” becoming well). While the work of Nabors et al. (2013) suggests an eagerness for children with medical issues and their siblings to engage in relevant play, perhaps using it in a therapeutic manner, it does not answer the related question of whether such play activity is effective in actually reducing emotional distress. Evidence from correlational studies suggests that the relationships between children’s emotional states, their selection of play materials, and the potential benefits of this activity are complex. Studies have found that higher levels of play with medical toys prior to hospitalization were associated with lower distress following discharge (Burstein & Meichenbaum, 1979; Tarnow & Gutstein, 1983), a finding that might support the beneficial effect of engaging in medical play. However, these studies are correlational in design. As such they cannot be viewed as conclusive evidence that medical play causes

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a reduction in anxiety. It is equally probable that children’s selection of medical toys is an indicator of their relative comfort in approaching impending medical events. Support for this interpretation comes from studies conducted in pediatric dental care settings. Researchers found that greater use of toy dental equipment was associated with less anxious behavior in prior dental visits (McTigue & Pinkham, 1978; Pinkham & Kerber, 1979). To answer the question of whether engagement with play in any of its forms effectively reduces the emotional distress, experimental research techniques are needed, providing one or more groups with systematic play experiences not available to another control group. Conducting research of this sort presents logistical, and at times ethical, challenges. The logistical challenge is that the success of child life has resulted in the pervasiveness of play in many medical settings, making the ability to detect the impact of the introduction of additional play experiences more difficult. There is also the ethical concern, present in much experimental research, of providing a service believed to be valuable to some children, but not others. Historically, studies using the experimental paradigm to evaluate play have been few in number, and their results are mixed. Fosson, Martin, and Haley (1990) provided hospitalized children with a single 30-minute intervention, either medical play or an “attention control” of non-play contact with an investigator. Anxiety scores of both groups of children declined from admission to discharge, with a greater reduction noted among children in the medical play condition. However, the difference was not statistically significant. Rae, Worchel, Upchurch, Sanner, and Daniel (1989) compared the responses of hospitalized children who received two 30-minute sessions of therapeutic play (with medical equipment, reflection, and interpretation), diversionary play (e.g., games and puzzles), or verbal support without play, with a control group of children receiving no intervention. A significant reduction was noted in self-reported fears of children in the therapeutic play group. However, no other significant differences among groups on five other measures were found. Clatworthy (1981) provided hospitalized children with daily 30-minute play sessions involving both medical and non-medical play equipment. The anxiety of children involved in the play sessions remained stable over the course of hospitalization, while that of children not involved in the play actually increased. However, as in the Fosson at al. (1990) study, the difference was short of a conventional level of significance. Each of these studies provides limited evidence of the potential benefits of play for children in healthcare settings. The significance of results may be lower due to several factors, including the limited nature of the intervention provided (ranging from a single 30-minute session to 30 minutes daily), the difficulty of studying the phenomenon of play in healthcare settings, and the

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fact that play is provided in many forms in medical settings apart from the research protocol. A more recent set of experimental studies, primarily conducted in medical settings outside of North America, often where play has been more recently introduced, strengthen our understanding of the value of play to children in healthcare settings. These suggest that play may have positive benefits in several forms: when parents are encouraged to provide it for their children (Ullan, Belver, Fernandez, Lorente, Badia, & Fernandez, 2014), when space is provided to facilitate its use (Hosseinpour & Memarzadeh, 2010), and when formal, systematic play opportunities are instituted (Potasz, Vilela, Carvalho, Prado, & Prado, 2013; Li, Chung, Ho, & Kwok, 2016; Li, Chung & Ho, 2011). In a study conducted in Spain by Ullan et al. (2014), the involvement of parents in the play of their children was found to be effective in reducing pain in the postoperative period. Parents in the experimental condition were provided with play materials, as well as instruction in their use, with their children following surgery. In comparison to a control group that received no specific intervention, children who had the benefit of play had lower levels of postoperative pain. Creating space and opportunity for play has also been found to be beneficial for children in medical settings. In a study conducted in Iran, Hosseinpour and Memarzadeh (2010) examined the value of establishing a playroom for children in the waiting area prior to surgery. The anxiety scores of children who spent time in this area were significantly lower than among a comparable group of children in a standard waiting area. Studies have further examined the effects of providing not only materials and a space for play, but also of instituting structured play experiences. The research of Potasz et al. (2013) concerned the use of a “play library”—a room in a hospital in Brazil stocked with play materials made available to children for limited periods in the morning and afternoon. Children in the experimental group were invited to the room for two hours per day. Levels of urinary cortisol (a hormone indicative of stress) of this group were found to be lower than for a control group of children who spent a comparable amount of non-play time with a staff member. The effect was found to be strongest for children 7 to 11 years of age. In research conducted in a hospital in Hong Kong, Li, Chung, Ho, and Kwok (2016) provided children with an extensive play intervention tailored to the needs of the individual patient. A stated goal of their research was to evaluate the effectiveness of this approach in a culture where most parents and healthcare professionals view play as secondary to medical care. Children in the experimental condition received daily, 30-minute sessions

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with a hospital play specialist, who tailored play interventions based on an assessment of the child. Various forms of structured and non-structured play experiences, medical and non-medical, were used. The responses of these children were compared with a group who had received standard hospital care. Children who participated in the structured play experiences were found to have reduced levels of anxiety and to display fewer negative emotions. In a more targeted experimental intervention for children 8 to 16 years of age undergoing treatment for cancer, Li, Chung and Ho (2011) found the use of virtual reality experiences as an adjunct to their medical care resulted in lower incidence of depressive symptoms. The picture of play that emerges from the research literature is not unexpected to child life specialists—it is an important and powerful tool to help children cope with the experiences of hospitalization and healthcare, especially when used in the appropriate contexts. Despite the value of play, there are times when it is not the tool of choice, such as during acute, painful procedures (Bandstra et al., 2008). In such instances, child life specialists should be open to the possibility that interventions other than play may be more effective for particular children at particular times (Burns-Nader, HernandezReif, & Thoma, 2013). Nevertheless, the foundational value of play for child life practice is supported by a growing body of evidence, as well as the theoretical framework of child development. Takeaway Points: • Hospitalization and its attendant stressors may suppress or disrupt children’s play, at least temporarily. • The presence and involvement of adults can increase the complexity or frequency of children’s play. • Unless children are excessively anxious, they may engage in play related to their condition. • Spontaneous selection of play relevant to one’s condition may be associated with reductions in distress. The relationships between children’s emotional states, their selection of play materials, and the potential benefits of this activity are complex. • Systematically providing children with opportunities for play in medical settings is beneficial to children’s emotional well-being

Preparation Of the primary psychosocial interventions used by child life specialists, none has received as much research attention as has the preparation of children and their families for healthcare encounters, with the earliest of this

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research dating back to the 1950s. This body of research has examined varying forms and components of the preparation process, including the presentation of information, both procedural and sensory, the providing of emotional support, the use of modeling techniques, instruction in coping skills, and the application of combinations of these approaches. Published reviews of the research literature on preparation over the years have concluded that preparation of children for healthcare experiences is an effective means of reducing the stress and anxiety of children and their parents (Vernon et al., 1965; Thompson, 1985; O’Connor-Von, 2000; Rape & Bush, 1994; Wright, Stewart, Finley, & Buffett-Jerrott, 2007; Perry, Hooper & Masiongale, 2012; Capurso & Ragni, 2016). This position is further supported by meta-analyses, or studies that combine and reanalyze the findings of individual studies to identify overall trends. For example, Saile, Burgmeier, and Schmidt (1988) identified a small, but significant effect of preparation in reducing children’s distress, an effect that was greater among children facing major operations or a series of treatments (as opposed to minor procedures or single events). Vernon and Thompson (1993) considered 22 studies investigating interventions designed to reduce the post-hospital distress of hospitalized children including both preparation and the presence of parents and found there to be significant positive effects. Some individual research studies have indicated that the effects of psychological preparation compares favorably with pharmacological treatment of stress among pediatric patients (Mansson, Fredrikson, & Rosberg, 1992; Rape & Bush, 1994; Kain et al., 2007). Research on psychological preparation began with a belief that “psychological upset” observed in children during or after hospitalization was due in part to the unexpectedness and unfamiliarity of events they encountered in the hospital and that providing children with basic information would counter these effects (Vernon et al., 1965). Subsequent researchers examined modifications or additions to the basic informational approach, for example providing sensory information through explanations and demonstrations of what they will see, feel, hear, smell or taste ( Johnson, Kirchhoff, & Endress, 1975; Siegel & Peterson, 1980, 1981; Dahlquist, Gil, Armstrong, DeLawyer, Greene, & Wuori, 1986; Kennedy & Riddle, 1989). A further elaboration of the informational approach to preparation was the introduction of play materials and techniques as a means of enhancing the communication of information. Purely verbal descriptions, especially for young children, are less likely to be effective than explanations accompanied by props, pictures, and other visual displays that depict upcoming events and invite children’s interaction and manipulation (Brewer, Gleditsch, Syblik, Tietjens, & Vacik, 2006; Johnson & Stockdale, 1975; Kain et al., 2007).

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Researchers also consider the relationship between children and their caregivers, noting that the uncertainty and anxiety of parents about medical procedures and events may be communicated to their children. To address this phenomenon, referred to in the early literature as the “emotional contagion hypothesis” (Vernon et al., 1965), preparation activities were extended to include caregivers, either along with the child or separately. Including parents in preparation activities was viewed as a means of helping them directly address their own concerns and potential distress, thereby indirectly and positively affecting the responses of their children (Skipper & Leonard, 1968). Another line of research involved the use of modeling, through which children are given the opportunity to view a child model, typically in a film, encountering stressful circumstances similar to that facing the patient. This approach is based on the belief that such observation is likely to increase the probability that the patient will adopt the same behaviors and, therefore, more successfully complete the procedure. The value of this approach was demonstrated for specific procedures including injections and anesthesia induction (Vernon, 1973), as well as for the more generalized experiences of hospitalization (Melamed & Siegel, 1975). Use of this technique as part of the preparation process continues to the present through inclusion of child models in preparation videos, as well as in print and digital materials. While children encountering medical events may have information on what they will experience, they may also benefit from identifying, selecting, and practicing activities they may engage in during the event, commonly referred to as coping strategies. Interventions of this type use cognitive strategies to alter behavioral reactions and patterns. Research regarding this approach has examined relaxation techniques, selection of and concentration on an alternate focus, referred to by some as “distraction” (e.g., paying attention to a visually intriguing material or an imagined pleasant event or setting), and comforting self-talk (reassuring oneself that all is proceeding well and that the event will be over soon). Typically, more than one such technique is presented so that children have control over selection of the method they prefer. Instruction in coping skills has been used either in combination with other techniques, such as play rehearsal and modeling ( Jay, Elliott, Ozolins, Olson, & Pruitt, 1985; Jay, Elliott, Katz, & Siegel, 1987), or as a stand-alone intervention (Siegel & Peterson, 1980, 1981). This approach was found to be effective with dental patients (Siegel & Peterson, 1980, 1981), with children undergoing bone marrow aspirations ( Jay et al., 1985, 1987), and for elective surgical procedures (Peterson & Shigetomi, 1981, 1982). In actual practice, the techniques identified in the literature as being effective components of the preparation process (i.e., procedural and sensory information, incorporation of play activities, involvement of parents, the

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presentation of successful models, and the selection and rehearsal of coping strategies) are seldom used in isolation, but more often in combination. A classic series of preparation studies demonstrated the effectiveness of using a constellation of interventions, an approach identified as “stress-point preparation,” in reducing the anxiety of children and their parents (Wolfer & Visintainer, 1975, 1979; Visintainer & Wolfer, 1975; Wolfer et al., 1988). This intensive preparation approach identifies periods of particular difficulty during hospitalization and prepares the child and family for each by providing information, opportunities for play and the selection and rehearsal of coping strategies, as well as providing emotional support. Other researchers have documented the effectiveness of comprehensive approaches to preparation, including Kain et al. (2007). These researchers used a comprehensive approach to preoperative education, which included a preoperative visit developed in conjunction with child life specialists, video and written informational materials, the availability of an anesthesia mask given to parents to use with their children at home prior to the day of surgery, and opportunities for “distraction” activities the morning of surgery. The intervention resulted in significantly lower anxiety among children and their parents. In an interesting follow up to this study, Fortier, Blount, Wang, Mayes and Kain (2011) reanalyzed the results in an effort to determine the most effective components of those used, which were found to be parents’ use of the anesthesia mask with children prior to admission and the use of distraction techniques prior to anesthesia. Although a lesser volume of research specific to preparation conducted in North American hospitals has appeared in recent decades, there has been a marked increase in the amount of research on preparation conducted in settings elsewhere. Noteworthy research has been conducted in Australia (Fincher, Shaw, & Ramelet, 2012); France (Hilly et al., 2015); Greece (Athanassisdou, Tsiantis, Christogiorgos, & Kolaitis, 2008); Hong Kong (Li, 2007; Li, Lopez, & Lee, 2007; Li & Lopez, 2008; Li & Chung, 2009); Iran (Vaezzadeh et al., 2011); Italy (Cuzzocrea et al., 2013; Cuzzocrea, Costa, Gugliandolo, & Larcan, 2016); Portugal (Fernandes, Arriaga & Esteves, 2014); Singapore (Hee et al., 2012); and South Korea (Yang et al., 2016). With few exceptions, these studies replicate findings of earlier research in North American settings, thereby supporting the validity of preparation and signaling the robustness of these interventions when applied in new settings. For example, this research supports the conclusion that formal, deliberate efforts to prepare children are effective in reducing anxiety when compared to standard methods of care received in a setting (Fernandes, Arriaga & Esteves, 2014); that preoperative educational sessions can reduce anxiety behaviors (Hilly et al., 2015); and that incorporating play components into

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preparation protocols is an effective addition (Cuzzocrea, 2016; Vaezzadeh et al., 2011; Athanassisdou et al., 2008; Li, 2007, 2007, 2008, 2009). Another recent focus of the research literature on preparation is on the incorporation of technology as a means of communicating with children and families outside of the healthcare setting. Two such studies have used Internetbased approaches to preparation. Fortier et al. (2015) found that the use of web-based informational materials was effective in reducing the anxiety of children (2 to 7 years of age) and their parents. Tourigny, Clendinneng, Chartrand, and Gaboury (2011) found that viewing of a web-based “surgery virtual tour” increased children’s knowledge. Although this latter intervention was not found to influence anxiety levels of the children, it was associated with a reduction of parental distress. Yang et al. (2016) used a series of text messages to provide information to parents commencing during a child’s hospitalization for surgery and continuing through their first follow-up visit. This form of communication was found to increase parent knowledge and reduce child anxiety. The materials used by child life specialists to inform children and their families about medical events may evolve over time, as may the nature of the procedures and circumstances for which they must be prepared and the location in which they will be delivered. Nevertheless, the clear lesson of the literature from the mid-twentieth century to date is that the time and resources devoted to psychological preparation are resources well spent and improve the quality of children’s experiences. Takeaway Points: • Psychological preparation is the most well-researched intervention used by child life specialists. • Preparation of children for hospitalization and medical events is effective in reducing anxiety. • The effectiveness of providing procedural information to children can be enhanced by supplementing basic procedural information with: º Sensory information º Opportunities to manipulate materials and “play through” events º Presentation of child models of successful behavior º The selection and practicing of coping strategies º Emotional support during stress points • Inclusion of parents in preparation is effective in reducing their own anxiety and that of their children. • Incorporating technology into preparation activities may be an effective way to increase knowledge and reduce anxiety.

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PARENT PRESENCE AND PARTICIPATION IN THE CARE OF THEIR CHILDREN Research conducted prior to 1985 on parental roles and involvement during the hospitalization of a child primarily addressed topics such as the effects of parents “rooming in” during a hospital stay, parents’ desires to participate during their child’s hospitalization, and factors related to that participation (Thompson, 1985). Much of this research was conducted with families whose child faced acute hospitalization for relatively brief periods. Since the 1980s, there have been major shifts in conditions for which children are hospitalized and in the rights and services accorded to parents in the hospital. Stremler, Wong and Parshuram (2008) conducted a survey of North American hospitals and their rooming in policies with hospitalized children. The results indicated that the majority of hospitals surveyed allowed at least one caregiver to sleep overnight in a child patient’s room. Over the past decades an increasing proportion of the pediatric hospital population has consisted of children with complicated, chronic conditions or those hospitalized with severe, acute conditions. Recent research suggests that families in these categories may benefit from targeted, supportive interventions, whether their children are hospitalized repeatedly for chronic conditions (Burke, Kauffmann, Wong, & Harrison, 2001) or for sudden, unplanned admissions (Melnyk & Feinstein, 2001). Parents of children with chronic conditions develop impressive expertise in their child’s medical status and care, which may or may not be recognized and utilized during periods of an inpatient stay. Research by Balling and McCubbin (2001) indicates that parents of chronically ill children want to participate actively in the care of their children when hospitalized. Moreover, they expressed concern that a lower quality of care is given to their children in the hospital than at home due to the understaffing and overwork of nurses. Along the same line, another study examining parents’ perspectives on being in the hospital environment with a child indicated that parents need meaningful, timely information to increase their involvement in their children’s care (Franck, Oulton, & Bruce, 2012). In addition, parent-identified barriers to meaningful involvement included a lack of daily necessities of living, insufficient information and the need for more emotional support (Kosta et al., 2015). Since the right of parents to remain with a child during hospitalization has become an accepted practice (Stremler et al., 2008; Roberts, Maieron, & Collier, 1988), research activity has shifted away from the global effects of rooming-in to an examination of parent presence and participation during specific events. The largest body of research in recent years on parent participation in medical events has examined the practice of parental presence

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during the induction of anesthesia in their children. A portion of this research addresses the level of acceptance of this practice by parents and professional staff. Blesch and Fisher (1996) found the practice to be accepted by parents, physicians, and nursing staff alike. However, researchers have found that attitudes toward parental presence differ between professionals in the United States and the United Kingdom, with greater use and acceptance of parent participation found among professionals in the United Kingdom including surgeons (Kain, Fernandes, & Touloukian, 1996) and anesthesiologists (Kain, Ferris, Mayes, & Rimar, 1997). A few studies have examined parent attitudes and preferences about being present at anesthesia induction. Findings indicate that the desire to be present during induction is high among parents, that this preference exists across cultural and ethnic groups, and that the motivation to be present during induction may be associated with increased levels of anxiety experienced by children and mothers (Sanchez, Soliveres, Hernandez, Palomar, Solaz, & Lledo, 2014; Fortier, Gomez & Kain, 2012; Kain et al., 2005). Researchers have also studied the effects of parent presence during anesthesia induction with children. The results of these studies are mixed, with some showing clear evidence that parent presence reduces child anxiety (e.g., Sanchez et al., 2014) and others showing that the use of parent presence alone may have limited additional benefit to the child (Scully, 2012; Gupta, Ommid, Mehta, Mahajan, Arora, & Dhulked, 2010). Reflecting the mixed nature of these results is the work of Kain et al. (1996), who compared the responses of children whose parents were either present or absent during anesthesia induction. Overall, there were no significant differences in the behavioral or physiological responses of the children in the two groups. Additional analyses indicated that parent presence had a positive effect on one of the physiological measures (children’s serum cortisol levels) for three subgroups of children: children older than age four, children whose parents had low trait anxiety levels, and children whose temperament assessment indicated low baseline levels of activity. The findings of more recent studies support these earlier results in documenting that children receiving the most benefit from parent presence at induction were older, had lower overall activity levels, had calmer parents, and valued preparation and the use of coping strategies (Kain et al., 2006). The effects of parent presence during anesthesia were contrasted with use of a preoperative sedative by Kain, Mayes, Wang, Caramico, and Hofstadter (1998). Children given the sedative were rated as less anxious in response to the procedure than either children whose parents were present or a control group of children who were given neither intervention. However, the percentage of children whose compliance during inductions was

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rated as “poor” was larger among the control group than either the sedative or parent-present group. As an extension of this study, Kain, Mayes, Wang, Caramico, Krivutza, and Hofstadter (2000) examined whether a combined approach of sedation and having parent presence is more effective than the use of sedatives alone. The combined approach was found to be no more effective at reducing children’s anxiety than sedation alone. Parents who had been present for their child’s induction, however, had lower levels of anxiety following separation from their child and higher levels of satisfaction with the overall care of their child and with the separation process than did parents who had not been present. Similar results regarding positive effects on parent anxiety and satisfaction have been reported by others. For example, Cameron, Bond, and Pointer (1996) noted a reduction in anxiety among parents who were present during anesthesia induction. Sanchez et al. (2014), who found parental presence to reduce the anxiety of both parent and child, also report higher levels of satisfaction with the quality of care received among parents who remained with their child. Kain (2000) notes the potential importance of such findings for the efforts of healthcare providers to improve patient and parent satisfaction. The potential value of preparing parents for being present during anesthesia induction has been examined, as well. The most current literature indicates that when parents are prepared, their own anxiety decreased, children’s anxiety was lower at induction and postoperatively, and parental satisfaction and confidence in supporting their children increased (Bailey et al., 2015; Wang et al., 2004; Chan & Molassiotis, 2002; Zuwala & Barber, 2001). Additional research has considered the attitudes of staff and parents regarding the presence of family members during critical, intrusive medical procedures, particularly those occurring in the pediatric intensive care unit (PICU) or the emergency department. Sacchetti, Lichenstein, Carraccio, and Harris (1996) surveyed parents and emergency department staff regarding presence during a range of procedures including lumbar puncture, nasogastric tube placement, intubation, and removal of an object from the child’s eye. More than 90 percent of the parents and staff surveyed favored parent presence. Ebrahim, Singh, and Parshuram (2013) and Powers and Rubenstein (1999) provide comparable results. The level of support among staff members for parental presence may vary with their personal experience with the practice (Sacchetti, Carraccio, Leva, Harris, & Lichenstein, 2000) and with the degree of intrusiveness of the procedure. Beckman et al. (2002) found the majority of emergency department physicians and nurses surveyed to be supportive of parent presence, regardless of the procedure. However, the proportion expressing support for

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the practice declined as the intrusiveness of the procedure increased. These results mirror the responses of parents surveyed by Boie, Moore, Brummett, and Nelson (1999). The majority preferred to be present during each of a variety of emergency department procedures, but that desire declined with increasing intrusiveness. Nevertheless most parents (83.4%) said they would want to be present during resuscitation if their child were likely to die. The opportunity for parents to be present during a child’s resuscitation has increased in recent years, a situation that requires healthcare professionals to consider how they will respond to and support parents. In a survey of hospitals in Italy, Maiandi, Mondini and Cantoni (2014) found that the majority of institutions supported the presence of parents who chose to remain during the procedure, while acknowledging that there are physical and logistical barriers to full implementation of this practice. Crowley, Gallagher, and Price (2015) surveyed nurses about the practice and found ambivalence in their responses. They were concerned that parent presence might impede the child’s care, but recognized the negative emotional consequences of excluding them. The staff members surveyed felt that the absence of formal protocols for parental presence left them in the uncomfortable position of making decisions on their own. As Pye, Kane and Jones (2010) note, “Implementing the concept of family-centered care from admission to discharge requires that nursing and support staff be sufficiently prepared to appropriately support family members should they choose to be present during emotional situations, such as pediatric resuscitation” (p. 174). Their research found the preparation of staff through simulation training to be effective in increasing their awareness, knowledge and confidence in approaching such situations. Takeaway Points: • Overnight “rooming in” of parents is common practice in North American hospitals. • Studies examining the effects of parent presence during anesthesia induction provide mixed results regarding the benefits on parent and child anxiety, yet indicate that presence increases parent satisfaction with care. • Preparing parents for being present during anesthesia induction can lower anxiety for both parents and their children during induction and postoperatively. • Parents want to be involved in their children’s care and need meaningful, up-to-date information from the healthcare team. • The practice of removing parents from critical and/or invasive procedures is not supported as beneficial in the literature. Decisions in such

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situations should be made based on thorough assessment of each case to prevent unnecessary removal of parents from critical and invasive medical procedures. SUMMARY AND RECOMMENDATIONS In each of the preceding sections we have identified takeaway points, or our summary of the most salient lessons and conclusions to be drawn from the research literature in a given area. The generalizations we provide are, however, made with some degree of caution due to limitations in the quantity of existing studies and the degree to which results of individual studies have been replicated. Nevertheless, despite limitations in the research, a reasonable set of conclusions is justified. Although studies on new topics (e.g., parent presence and participation in medical procedures; the use of technology to support preparation efforts) continue to emerge, the findings of research reviewed do not diverge markedly from the studies on the same issues covered in earlier reviews. Challenging areas identified by child life specialists in their practice include role ambiguity and limited power in comparisons to other healthcare providers. Despite this, child life professionals, as a group, do not appear to be especially demoralized in the face of such obstacles, yet the risk of compassion fatigue and burnout are consistent with other similar professions. The research indicates that these conditions may be ameliorated by supervision, support and opportunities for professional growth. The cumulative evidence supports the efficacy of child life practice. Child life specialists clearly provide valuable services that have a positive impact on children and their families who undergo hospitalization and painful medical procedures. However, additional studies are needed to identify and more clearly define the components of “best” child life practices—efforts that will support the use of EBP. Also, as child life services continue to expand into settings outside the hospital such as dental offices, hospice centers, and centers for sexually abused children there is an increasing need for summative and formative program evaluation studies in those areas. Studies included in this chapter also tend to confirm reports published in previous reviews that hospitalization is typically stressful to children. The amount of stress is mediated by various factors including age, parental anxiety, personality factors, medical history, and the degree of physical stressors encountered. The most obvious symptoms of psychosocial stress have been shown to be short-lived. Yet, for a subset of children the symptoms persist and may be evidence of post-traumatic stress disorder. Additional studies are

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needed to assess both short-term and long-term residual psychosocial effects of hospitalization as well as how various factors interact to affect the level of stress. Through the years, researchers have identified some strategies hospitalized children and adolescents use to cope with the stress of hospitalization and painful medical procedures. Individual differences in coping behaviors have been attributed to a variety of factors including age, temperament, and previous medical encounters. Additional studies are needed to identify other factors associated with variations in coping style and how child life professionals can best identify and facilitate children’s stress reduction responses. Research studies consistently indicate that hospitalization tends to suppress or disrupt children’s playfulness. The findings also indicate that presence and involvement of adults can increase the depth or frequency of children’s play. Overall, research findings support foundational child life values and practices that promote play as a critical component of children’s healthcare experience. Further studies are needed to identify the conditions that influence play as well as the context and types of play (e.g. structured or unstructured) that are most beneficial to pediatric patients of various ages. In addition, studies examining the degree to which play contributes to a decrease in distress and anxiety for children are needed. Child life specialists use a variety of techniques in preparing children to cope with medical procedures. Studies consistently indicate that preparation has a significant effect in reducing the stress associated with healthcare experiences. However, some techniques appear to be more effective (e.g., stresspoint preparation and instruction in coping skills) than others. Additional studies are needed to determine which preparation techniques work best for which children under various circumstances. In a relatively new line of research, investigators are studying the effects of parental presence on pediatric patients during medical procedures as well as parent participation in preparation of the child for the event. On the basis of the studies available, parental presence has shown positive effects on the patient and contributes to increased parent satisfaction. Investigators should continue to explore ways in which parents can most meaningfully participate in the psychosocial caring for their children as well as benefit from the process.

Methodological Problems In general, the quality of research in the field of child life does not differ markedly from investigations in other areas related to the psychosocial care of children’s health (e.g., see La Greca & Varni, 1993; Gottleib, 1990). The

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problems include, but are not limited to, small sample size, lack of comparable control groups, inability to randomize, use of broad categorical groupings of subjects (age and medical conditions), inadequate information about reliability and validity of assessment instruments and procedures, failure to control possible mediating variables, and heavy reliance on patient and parent reports. Many studies are one-dimensional and are not designed to consider possible influence of multiple variables. Long-term follow-up studies are rare, yet needed for more meaningful insights. In spite of problems that may limit generalizations of findings, methodological flaws that totally nullify the results of a published report are rare. In other words, although most studies have limitations, their results should be considered valuable when balanced with the challenges and flaws present in conducting research with complex constructs and multiple variables.

Recommendations How can we encourage more and higher quality research that addresses the deficiencies identified as well as new lines of inquiry? Clearly, the difficulties involved in controlling multiple variables, conforming to ethical guidelines, limited subject availability (especially for control/comparisons groups), problems in finding suitable measuring instruments, along with time constraints and limited resources are deterrents to the proliferation of child life research. This means that all professionals in the field need to be more vigilant in identifying resources and forming alliances to provide a support system for research endeavors, possibly in conjunction with the pursuit of EBP. Child life academicians typically have more institutional incentives than clinicians to conduct research. These professionals should continue to increase their involvement in networking with child life clinicians, as well as nurses and other healthcare professionals when appropriate. As the field of child life expands, there may be an increased need for doctoral programs in child life to provide educational and research underpinnings for the profession. A recommendation made by La Greca and Varni (1993) still has merit today. They suggest solving some of the problems associated with sample size and matching subjects by conducting multi-site studies involving several investigators. This approach is not intended to discourage or discount individual or single site investigations. However, through a combination of resources and efforts, cooperating investigators with varying degrees of expertise could participate in research endeavors that might otherwise not be possible.

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In conclusion, whether one is a student, new professional, seasoned clinician, or academician in the child life profession, research findings and the use of evidence in daily work is crucial to increase deeper understanding and create more meaningful interactions with children and families. Research is not just connected to practice, it must be connected to child life practice. REFERENCES Alcock, D., Feldman, W., Goodman, J., McGrath, P., & Park, J. (1985). Evaluation of child life intervention in emergency department suturing. Pediatric Emergency Care, 1(3), 111–115. Alcock, D., Goodman, J., Feldman, W., McGrath, P. J., Park, M., & Cappelli, M. (1985). Environment and waiting behaviors in emergency waiting areas. Children’s Health Care, 13(4), 174–180. Athanassiadou, E., Tsiantis, J., Christogiorgos, S., & Kolaitis, G. (2008). An evaluation of the effectiveness of psychological preparation of children for minor surgery by puppet play and brief mother counseling. Psychotherapy and Psychosomatics, 78(1), 62–63. Bailey, K., Bird, S., McGrath, P., & Chorney, J. (2015). Preparing parents to be present for their child’s anesthesia induction: A randomized controlled trial. Anesthesia and Analgesia, 121(4), 1001–1010. Balling, K., & McCubbin, M. (2001). Hospitalized children with chronic illness: Parental caregiving needs and valuing expertise. Journal of Pediatric Nursing, 16, 110–119. Bandstra, N. F., Skinner, L., LeBlanc, C., Chambers, C. T., Hollon, E. C., Brennan, D., & Beaver, C. (2008). The role of child life in pediatric pain management: A survey of child life specialists. The Journal of Pain, 9(4), 320–329. Beckman, A. W., Sloan, B. K., Moore, G. P., Cordell, W. H., Brizendine, E. J., Knoop, K. J., Goldman, M. J., & Geninatti, M. R. (2002). Should parents be present during emergency department procedures on children, and who should make the decision? A survey of emergency physician and nurse attitudes. Academic Emergency Medicine, 9, 154–158. Blesch, P., & Fisher, M. L. (1996). The impact of parental presence on parental anxiety and satisfaction. AORN Journal, 63, 761–768. Boie, E. T., Moore, G. P., Brummett, C., & Nelson, D. R. (1999). Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents. Annals of Emergency Medicine, 34, 70– 74. Bonjour, A., Moatz, A., & Titzer, C. (2015). Taking the first step forward on the path to EBP. Child Life Council Bulletin, 33(3), p. 23. Retrieved from http://mydigital publication.com/publication

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Sacchetti, A., Carraccio, C., Leva, E., Harris, R. H., & Lichenstein, R. (2000). Acceptance of family member presence during pediatric resuscitations in the emergency department: Effects of personal experience. Pediatric Emergency Care, 16, 85–87. Sacchetti, A., Lichenstein, R., Carraccio, C., & Harris, R. H. (1996). Family member presence during pediatric emergency department procedures. Pediatric Emergency Care, 12, 268–271. Salmela, M., Salantera, S., & Aronen, E. T. (2010). Coping with hospital-related fears: Experiences of pre-school-aged children. Journal of Advanced Nursing, 66(6), 1222–1231. Sanchez, A., Soliveres, J., Hernandez, M., Palomar, G., Solaz, C., & Lledo, M. (2014). Parental presence during anesthesia induction: Does it improve quality of anesthesia? European Journal of Anaesthesiology, 3124. Scully, S. M. (2012). Parental presence during pediatric anesthesia induction. AORN Journal, 96(1), 26–33. Shuck, A. L., Shuck, B., & Reio, T. G. (2013). Emotional labor and performance in the field of child life: Initial model exploration and implications for practice. Children’s Health Care, 42(2), 168–190. Siegel, L. J., & Peterson, L. (1980). Stress reduction in young dental patients through coping skills and sensory information. Journal of Consulting and Clinical Psychology, 48, 785–787. Siegel, L. J., & Peterson, L. (1981). Maintenance effects of coping skills and sensory information on young children’s responses to repeated dental procedures. Behavior Therapy, 12, 530–535. Skipper, J. K., & Leonard, R. C. (1968). Children, stress, and hospitalization: A field experiment. Journal of Health and Social Behavior, 9, 275–287. Smith, J. G., Desai, P. P., Sira, N., & Engelke, S. C. (2014). Family-centered developmentally supportive care in the neonatal intensive care unit: Exploring the role and training of child life specialists. Children’s Health Care, 43(4), 345–368. Snow, C. W., & Triebenbacher, S. L. (1996). Child life program employment trends and practices. Children’s Health Care, 25, 211–220. Spirito, A., Stark, L. J., & Tyc, V. L. (1994). Stressors and coping strategies described during hospitalization by chronically ill children. Journal of Clinical Child Psychology, 23, 314–322. Sposito, A. P., Silva-Rodrigues, F. M., Sparapani, V. C., Pfeifer, L. I., de Lima, R. G., & Nascimento, L. C. (2015). Coping strategies used by hospitalized children with cancer undergoing chemotherapy. Journal of Nursing Scholarship, 47(2), 143–151. Staab, J. (2012) Unveiling a standard for knowledge translation: An evidence-based practice model for the child life profession. Child Life Council Bulletin, Focus, 30(1), 1–4. Retrieved from https://www.childlife.org/docs Stargatt, R., Davidson, A. J., Huang, G. H., Czarnecki, C., Gibson, M. A., Stewart, S. A., & Jamsen, K. (2006). A cohort study of the incidence and risk factors for negative behavior changes in children after general anesthesia. Pediatric Anesthesia, 16(8), 846–859.

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Stevenson, M., Bivins, C., O’Brien, K., & Gonzalez del Ray, J. (2005). Child life intervention during angiocatheter insertion in the pediatric emergency department. Pediatric Emergency Care, 21(11), 712–718. Stremler, R., Wong, L., & Parshuram, C. (2008). Practices and provisions for parents sleeping overnight with a hospitalized child. Journal of Pediatric Psychology, 33(3), 292–297. Tarnow, J. D., & Gutstein, S. E. (1983). Children’s preparatory behavior for elective surgery. Journal of the American Academy of Child Psychiatry, 22, 365–369. Thompson, M. L. (1994). Information-seeking coping and anxiety in school-age children anticipating surgery. Children’s Health Care, 23, 87–97. Thompson, R. H. (1985). Psychosocial research on pediatric hospitalization and health care: A review of the literature. Springfield, IL: Charles C Thomas. Thompson, R. H., & Vernon, D. T. A. (1993). Research on children’s behavior after hospitalization: A review and synthesis. Developmental and Behavioral Pediatrics, 14, 28–35. Tisza, V. B., Hurwitz, I., & Angoff, K. (1970). The use of a play program by hospitalized children. Journal of the American Academy of Child Psychiatry, 9, 515–531. Tourigny, J., Clendinneng, D., Chartrand, J., & Gaboury, I. (2011). Evaluation of a virtual tour for children undergoing same-day surgery and their parents. Pediatric Nursing, 37(4), 177–183. Tyson, M., Bohl, D., & Blickman, J. (2014). A randomized controlled trial: Child life services in pediatric imaging. Pediatric Radiology, 44(11), 1426–1432. Ullán, A. M., Belver, M. H., Fernández, E., Lorente, F., Badía, M., & Fernández, B. (2014). The effect of a program to promote play to reduce children’s post-surgical pain: With plush toys, it hurts less. Pain Management Nursing, 15(1), 273–282. Vaezzadeh, N., Douki, Z., Hadipour, A., Osia, S., Shahmohammadi, S., & Sadeghi, R. (2011). The effect of performing preoperative preparation program on school age children’s anxiety. Iranian Journal of Pediatrics, 21(4), 461–466. Vernon, D. T. A. (1973). Use of modeling to modify children’s response to a natural, potentially stressful situation. Journal of Applied Psychology, 58, 351–356. Vernon, D. T. A., Foley, J.M., Sipowitz, R.R., & Schulman, J. L. (1965). The psychological responses of children to hospitalization and illness. Springfield, IL: Charles C Thomas. Vernon, D. T. A., Schulman, J. L., & Foley, J. M. (1966). Changes in children’s behavior after hospitalization. American Journal of the Diseases of Children, 111, 581–593. Vernon, D. T. A., & Thompson, R. H. (1993). Research on the effect of experimental interventions on children’s behavior after hospitalization: A review and synthesis. Journal of Developmental and Behavioral Pediatrics, 14, 36–44. Visintainer, M. A., & Wolfer, J. A. (1975). A psychological preparation for surgical pediatric patients: The effect on children’s and parents’ stress responses and adjustment. Pediatrics, 56, 187–202. Wang, S., Maranets, I., Weinberg, M. E., Caldwell-Andrews, A. A., & Kain, Z. N. (2004). Parental auricular acupuncture as an adjunct for parental presence during induction of anesthesia. Anesthesiology, 100(6), 1399–1404

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Williams, Y. B., & Powell, M. (1980). Documenting the value of supervised play in a pediatric ambulatory clinic. Journal of the Association for the Care of Children’s Health, 9, 15–20. Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L. N., & Thompson, R. (1988). An experimental evaluation of a model child life program. Children’s Health Care, 16, 244–254. Wolfer, J. A., & Visintainer, M. A. (1975). Pediatric surgical patients’ and parents’ stress responses and adjustment. Nursing Research, 24, 244–255. Wolfer, J. A., & Visintainer, M. A. (1979). Prehospital psychological preparation for tonsillectomy patients: Effects on children’s and parents’ adjustment. Pediatrics, 64, 646–655. Wright, K., Stewart, S., Finley, G., & Buffett-Jerrott, S. (2007). Prevention and intervention strategies to alleviate preoperative anxiety in children: A critical review. Behavior Modification, 31(1), 52–79. Yang, J. Y., Lee, H., Zhang, Y., Lee, J. U., Park, J. H., & Yun, E. K. (2016). The effects of tonsillectomy education using smartphone text message for mothers and children undergoing tonsillectomy: A randomized controlled trial. Telemedicine Journal and E-Health, 22(11), 921–928. Zuwala, R., & Barber, K. (2001). Reducing anxiety in parents before and during pediatric anesthesia induction. AANA Journal, 69(1), 21–25.

Chapter 4 THERAPEUTIC RELATIONSHIPS IN CHILD LIFE KATHLEEN MCCUE hild life has borrowed many concepts from a wide variety of fields and professions and incorporated them into the overall language and practice of what we currently define as child life. However, there is probably no component of child life that is as vague and generalized as the concept of “therapeutic relationships.” In the statement of Mission, Vision and Values of Child Life, one of the values of the profession of child life is titled “Therapeutic Relationships.” In the official documents of the Child Life Council (1990), the value is stated as follows: “We are committed to relationships built on trust, respect and professional competence which contribute to the development of confidence, resilience, and problem-solving skills that enable individuals and families to deal effectively with challenges to development, health and well-being.” This statement seems to capture a very important essence of the profession, and most individuals in child life would agree with it. However, the concept itself is difficult to operationalize and measure, and certainly difficult to teach to new professionals in the field. In a brief review of the Child Life Council Bulletin, from 2010 through mid-2016, only one article specifically addressed issues related to the importance of relationships in the profession of child life. This article by Katherine Bennett (2012) presents useful suggestions for developing a rapid, positive relationship with children and families. This one article, along with presentations at both local and national child life conferences, provide some of the few opportunities for child life professionals to explore both the ideal therapeutic relationship and also some of the real-life difficulties in establishing such a relationship with patients and families. The actual definition, scope, and applicability of the concept of therapeutic relationships are subject to

C

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many interpretations and representations. In this chapter, we will examine the history and usage of this concept in the professions that provide direct human services, and will attempt to synthesize the ways in which it applies to child life. On the most primary level, it would seem logical to start with definitions of each of the terms used in the phrase, “therapeutic relationship.” According to Random House Webster’s (2001), “therapeutic” means “relating to or dealing with healing, especially with remedies for disease.” It also means “providing or assisting in a cure.” It comes from the word “therapy” meaning “remedial treatment of bodily, mental or social disorders or maladjustments.” The word “relationship” is “the state of being related” while “relation” is “the state of being mutually interested or involved.” Thus, a therapeutic relationship would seem to be a state of mutual interest or involvement that has to do with healing or curing. This healing may be purely physical, such as in healing a fracture or a disease, or it may be psychological or developmental healing. The healing referred to in the child life values speaks to developmental or psychosocial issues such as confidence, resilience and the management of challenges, and might be more appropriately referred to as a “psychotherapeutic relationship” to exclude one that simply heals the body. However, for efficiency we will continue to use the phrase that is the title of this chapter, “therapeutic relationships.” The concept of a healing involvement will be addressed throughout this chapter as we attempt to clarify the meaning of therapeutic relationships in child life. Also throughout this chapter, for ease of language, children and adults who receive child life services will be referred to as patients or clients, and the word children will refer to infants, children and adolescents. Before continuing the discussion of various definitions of components of human relationships, it might be helpful to illustrate in graphic form the ways in which all the relationships associate with one another. Figure 1 should help the reader to compare and contrast the language used to describe different relationship categories. It should also be noted here that definitions of terms, history of the use of relationship categories and even the use of these concepts in other professions may not be of interest to all readers. A reader may be simply referencing this chapter to increase understanding of the development and use of therapeutic relationships in the profession of child life. If that is the case for any specific reader, the information provided from the section entitled “Concepts in Therapeutic Relationships” to chapter end may be of greatest use.

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THE COMPLEXITY OF HUMAN RELATIONSHIPS For the purposes of this chapter, relationships are divided between Therapeutic and Non-therapeutic, but these divisions are not absolute. Some may fall into a gray area between each type of relationship, and some may move back and forth along the continuum. The ways in which other types of relationships relate to therapeutic relationships are described below. Therapeutic Relationships

Non-Therapeutic Relationships

1. Are usually reactive, and focus on healing or problem-solving

1. Are often proactive but may be specifically aimed at providing for a need or desire of the other person

2. Is usually also a Supportive Relationships, but it is possible for a relationship to be therapeutic without being supportive Establishment of trust is critical In a Supportive Relationship

2. May be a Supportive Relationship but not necessarily

3. Almost always a Professional Relationship Has Code of Ethics and Standards of Practice, and consequences if not followed

3. May or may not be a Professional Relationship May not have standards or codes, or may not follow them

4. Provide both clinical and nonclinical services

4. Usually do not provide clinical services

5. Have a beginning, middle and end

5. Have a starting point, but can continue indefinitely, until one party decides to end the relationship

Examples: Physician Psychologist Social Worker Child Life Specialist Attorney Physical Therapist Play Therapist

Examples: Teacher Electrician Car Salesperson Business Partner Beautician Friend Family Member

Trust is often part of any Supportive/Non-therapeutic Relationship

Figure 1.

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One significant factor in using the classic definitions of “therapy” and/or “therapeutic” is that such terms are based on a reactive response to a problem. There must be a problem, something that needs fixing, in order to heal something. Although child life can certainly function reactively, a large portion of the work done in child life is proactive and preventive. In the early history of child life, as the profession was developing, the vast majority of interventions, those based on play, normalization of the environment, and enhancement of general coping, were directed at preventing certain negative developmental and psychosocial consequences. In one of the earliest studies of the child life profession, Wolfer, Gaynard, Goldberger, Laidley and Thompson (1988) defined child life relationships with children and families as “supportive” rather than “therapeutic.” These relationships involved expressions of positive affect, affirmation and the provision of aid or assistance. Over time, as the visibility and reliability of child life increased, child life specialists were called in more and more often to provide services to a child or family member who was demonstrating existing problematic responses. Therefore, an additional issue to be addressed in this chapter is whether it is meaningful to refer to a therapeutic relationship in a preventive or development-enhancing situation. Look at some examples of these two types of interventions, preventive and reactive. General preparation for a procedure, in its broadest scope, is a proactive or preventive intervention. Working with a child who is referred or identified because of non-compliance or high anxiety is reactive. General play in a playroom or at bedside to maintain normal development is proactive. Play sessions specifically designed to help a child who has regressed language or motor skills is reactive. Are there, then, two different types of relationships the child life professional may have with a child depending on the situational goal or intention of the professional? Are all preventive/proactive interventions really supportive in nature and all intentional, reactive, problem-based interventions therapeutic? And should we, as a profession, place more emphasis on one type of relationship over the other? As we look at different types of child life programming, these questions will be addressed. It would probably be helpful to limit the scope of this discussion by acknowledging that there are many possible parameters of “therapeutic.” There are therapeutic environments, therapeutic contacts, therapeutic intentions, therapeutic locations, therapeutic activities and therapeutic personalities. Many of these categories may well apply to child life, but are beyond the scope of this chapter. Here we will be speaking only of the interactive relationship between the child life specialist and one or more other person; that is, when the child life specialist is in a state of mutual involvement with a child, parent/family member or other professional.

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We have already begun to contrast “therapeutic relationships” with “supportive relationships.” It is also important to acknowledge the terms “professional relationships,” and “clinical relationships” and examine the interrelationships and differences between all these labels. These terms are sometimes used interchangeably, yet probably represent overlapping but separate concepts. Many professions have examined at some length the scope and responsibilities that are encompassed by the total range of their professional services. These have been described in articles, codes of ethics, professional textbooks and, well as, the lay literature. All professions that involve service to the others have developed standards for how both clients and co-workers should be treated. Education, law, the business community, as well as health and mental health, have these standards. Even some vocational groups—for example, plumbers and sales people—have made statements about their ethical responsibilities to their clients. However, in the non-professional categories, these standards are usually not nationalized, are dependent on support from individual employers, and reflect more personal ethical values than industry norms. For the purposes of this chapter, child life will be considered a profession, and will be examined in the context of similar or related professions. Therefore, the relationship a child life specialist has with a child or adult is a professional relationship, regardless of other relationship possibilities. Discussions of professional relationships tend to focus on those activities by the professional that are expected behavior, and those that may be dangerous or harmful to the client. Most professions have established a list of behaviors, activities and roles that pose a danger to the accomplishment of the goals of the service. This list provides the parameters of the professional relationship, and individuals in the profession make a commitment to abide by the rules of the profession. Violations of the standards on the list may be illegal, may be against licensure rules and/or may put the client or the therapeutic relationship into jeopardy. Categories such as confidentiality, sexual relations, respect and dignity, competence per standards and law, and representation of the profession to the public are often included in the discussion of professional relationships for the helping professions. Boundary violations are specific violations of the standards of a professional relationship, and will be discussed in detail later in this chapter. Clinical relationships, on the other hand, reflect the simple fact that a professional and a client are in a relationship in which some sort of clinical service is provided by the professional to the client. There is no implication of interpersonal trust, integrity, or empowerment in the reality of a clinical relationship. A clinical relationship is hierarchical and assumes that some knowledge or ability of the clinician is being transferred to the client or patient. The factors of trust, warmth, interpersonal positive regard and focus

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on empowerment of the client or patient are all more definitional of a supportive relationship. Many professionals include factors that are part of a supportive relationship in their definition of a therapeutic relationship. As the reader progresses through this chapter, it will become clear that when the term “therapeutic relationship” is used, a positive, trusting interpersonal connection is implied. However, it is not mandated simply by the phrase. Often, in reading professional literature, authors use terms such as clinical relationship or therapeutic relationship when they are really referencing the integrity and trust of a supportive relationship. All these types of relationships have potential to be part of the repertoire of child life professionals. From the discussion above, we can probably define each of the possible relationships in a way that would be generally agreeable to most servicebased or healthcare professionals. Below are these definitions. Remember, these are generic definitions, and not meant to specifically define these terms as they are utilized in child life. (1) Professional Relationships. All relationships that are established in connection with the specific profession engaged in by any individual. This includes relationships with clients or patients, their families and friends, other professionals, other coworkers, administrators, buyers, vendors, volunteers and students, and any other persons which a professional would encounter in his or her day-to-day work. All professional relationships may be categorized as either clinical or non-clinical: a. Clinical Relationships. Those relationships existing within the scope of a health or service profession, which are based on the accepted practice of that profession and are developed specifically with the assigned patients or clients, as well as with their families and friends. b. Non-clinical Relationships. Those relationships existing within the scope of the profession which are established with coworkers, colleagues, vendors, volunteers, entertainers and any other individuals that are involved, directly or indirectly, with those served by a clinical relationship. When a relationship with one of these individuals expands to include the provision of some direct clinical service, such as consultation, supervision or referral, the relationship, for that period of time, shifts from non-clinical to clinical. (2) Supportive Relationships. Those relationships, both clinical and nonclinical, which advocate for psychosocial coping and adjustment. The word “support” comes from the Latin verb “to carry.” These relationships usually include expressions of positive affect, affirmation and the provision of aid or assistance. Supportive relationships promote the interest of or the cause of the individual/family served. In the health fields and especially the mental health fields, factors such as trust, respect, advocacy, and interpersonal

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warmth are often included in the definition of supportive relationships. By general definition, there is no specific requirement that a supportive relationship be therapeutic. (3) Therapeutic Relationships. Those relationships, both clinical and nonclinical, in which a goal for providing some sort of healing is established. The word “therapeutic” comes from the Greek word “therapeutikos,” meaning (1) relating to the treatment of disease or disorder and (2) providing or assisting in a cure. This healing is usually developed in response to an identified problem or risk. Healing can also refer to making whole or restoring to health. In healthcare, the problem or risk is usually clearly identified, measurable and related to a disease. In mental health, prevention or empowerment may be aspects of the healing goal. A common component in most definitions of therapeutic relationships is a clear intention by the professional to have some specified impact on the client or patient. Intrapsychic processes may occur as part of any relationship, but an expected component of a therapeutic relationship is the recognition of and attention to these internal processes. By general definition, there is no specific requirement that a therapeutic relationship be supportive. Let’s use a dentist to illustrate the interactions between these types of relationships. If we are the patient, then our dentist is in a professional relationship with us. The success of this professional relationship depends on how well the dentist abides by the standards and ethics of dentistry. Our dentist is also in a clinical relationship with us, but not necessarily a therapeutic one. Our dentist may not be healing anything, but may simply be providing an assessment, and perhaps even preventive services. If our dentist is very unlikable and abrupt, but does provide a healing service, then it is probably a therapeutic relationship, albeit not necessarily a supportive one. If our dentist is warm, trusting, helps us to handle our fears, does good dental work that results in healing, and follows all the standards, ethics and requirements of his profession, then there is a professional relationship, a clinical relationship, a therapeutic relationship, and a supportive relationship. By this description, it is possible to maintain a professional relationship and a clinical relationship without the therapeutic component. It is also possible for a dentist to omit the supportive relationship and still maintain professional responsibilities. However, a disruption of the professional relationship will endanger the clinical and therapeutic relationships. It is also possible, from this perspective, to have a supportive relationship without a professional one. This dentist might be an individual we respect and use to talk about personal problems, even though we do not use him in the capacity of a dentist. The next challenge, and things become even more complex here, is to determine what the interface is between therapeutic relationships and thera-

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py. Does a therapeutic relationship, by definition, only exist as a component of therapy? In other words, can you have a therapeutic relationship outside of the realm of therapy? The corollary question, “Is child life a therapy?” will be addressed, but unfortunately not totally answered, later in this chapter. And even more confusing, can you have successful therapy without the existence of a therapeutic relationship? It is these complexities with which we struggle as we attempt to understand therapeutic relationships in the context of child life. HISTORY OF THERAPEUTIC RELATIONSHIPS Although many professions provide services, interact with children and families, and find it important to define relationships with their clients, not all of these professions utilize the term or concept of therapeutic relationships. In the realm of healthcare and mental health, the concept is used frequently. It is especially common to find a reference to therapeutic relationships in any service or profession that, by definition, provides therapy. Most professions that engage in therapy, no matter what the type, would agree that a therapeutic relationship either always is, or can be, part of the therapy process. Think about the different types of therapists with which you are familiar; there are physical therapists, speech therapists, psychotherapists, massage therapists, respiratory therapists, just to name a few. Do they all depend on therapeutic relationships to engage in competent practice? Certainly, most of them work toward healing in some sort of problem-based and reactive manner. But this does not imply that a supportive relationship is also necessary. It would seem that the more technical and concrete the activities of the therapist, the less need there is for, or the less use there is of, supportive relationships. Let’s start with the respiratory therapist. What type of relationship is important while providing an inhalation treatment for asthma? By definition, if the therapist is assisting in opening an airway, then a healing is taking place and a therapeutic relationship exists. The treatment will be just as effective regardless of the warmth and kindness of the therapist toward the patient. But what if the therapist has the opportunity to address issues of noncompliance, or fear of death, or generalized depression due to disease? Perhaps healing is needed in one of these areas also. In these cases, either a supportive relationship is needed, or there needs to be a component of support and trust in the therapeutic relationship to provide opportunities for healing to occur in relation to the psychosocial topics. What if the respiratory therapist is providing airway management to an unconscious patient? This is a professional relationship, a therapeutic one and a clinical one. It is not

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necessarily supportive, although if the therapist interacts with parents at bedside in a caring and trusted manner, the supportive component may also be included. Even if the therapist just demonstrates a gentle and compassionate manner during treatment, any observing family member will probably feel supported also. Any time the interaction between therapist and client goes beyond technical, mechanical, rehearsed tasks, there is potential to make use of a supportive component in the relationship. In the American Physical Therapy Association (APTA) Code of Ethics and the accompanying Guide for Professional Conduct (APTA, 2013), there is not a single mention of “therapeutic relationships.” The only references to relationships between therapists and patients indicate that therapists shall act in a respectful manner toward patients, shall be trustworthy and compassionate, and shall not engage in sexual relationships with patients. These are more descriptions of a professional relationship than a therapeutic one. Interestingly, in speaking to a highly competent and experienced physical therapist prior to reading these standards, she was convinced that therapeutic relationships were a core concept in her profession and would be clearly defined in the standards. At the other end of the spectrum of therapies, the psychotherapist probably utilizes both therapeutic relationships and supportive relationships most of the time in clinical practice. However, there may be types of psychotherapy, such as therapy for personal growth and self-awareness, that are not really working on solving a problem, and thus by definition may be more supportive than therapeutic. And there may be types of therapy, such as behavioral therapies or hypnotherapy, which do not depend as significantly on any supportive elements. From this discussion, it would seem that there is a continuum of different therapies, some that use therapeutic relationships extensively and some that use them at a lesser level, and that also within each therapy specialty there is a continuum of situations in which a supportive relationship would or would not be necessary and integral. It also becomes clear that it is very difficult, perhaps even impossible, to separate out the supportive, trust-based aspects of relationship from those that are considered therapeutic. Although child life is occasionally called a therapy, the roots of child life lay more in the fields of education and child development. However, when child life tasks are clearly reactive and problem-solving, there is a good fit with the typical definitions of a therapy. It seems evident that there is much about child life that embraces both the typical therapeutic relationship as well as the supportive one. Because child life is, at least in part, a psychosocial profession, and more closely aligned to the mental health fields than to the physical health professions, it makes the most sense to look at ways in which psychiatry, psychol-

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ogy, counseling and social work handle the concept of therapeutic relationships. Ultimately, child life will probably take its direction from these fields in continuing to define its therapeutic relationships. Even within these closely related professions, there is a range of expectations regarding therapeutic relationships. For example, look at the historical information available on psychotherapy. Michael Kahn (1991) gives a clear and concise summary of the history of therapeutic relationships in his book, Between Therapist and Client: The New Relationship. He describes Freud’s early dismissal of the relationship, referred to as “bedside manner,” stating that it was irrelevant in the therapeutic process. Psychoanalytic theory justified a practice that was supposedly devoid of relationship. However, Kahn points out that Freud himself did not practice a non-responsive therapy, but was actually quite active with his patients. It was the followers of Freud who tried to implement his theories and stay completely invisible, physically and personally, to their patients. Then, in the 1940s, an entirely different approach to clinical relationships emerged, fueled by the humanist movement and an American psychologist named Carl Rogers. The theories behind the work of Rogers led to a therapy that required warmth, genuineness, and positive regard from the therapist toward the patient. Over time, in an effort to equalize the power in the clienttherapist relationship, therapists moved to an even more open relationship with patients, offering loving support, the sharing of feelings, and sometimes confrontation. This range of approaches still exists today in the many professions that practice psychotherapy. There are therapists who will tell you that the relationship is irrelevant in the therapy process, and that a competent therapist can practice her or his profession quite well without ever developing what we think of as a “supportive relationship” with the client or patient. And at the other end of the spectrum, there are therapists, in all the therapeutic professions, who will state unequivocally that the one most significant element of change and healing is, simply, the therapeutic relationship. Regardless of the place one falls along this theoretical continuum, Kahn states that there are two reasons to make a careful study of the clinical relationship. First, it is risky not to. There are many potential damages that can be done to the client/family when the ground rules of the clinical situation are not known and respected. And second, the clinical relationship is a potentially powerful tool to use in the work we all do with clients. So, what is the connection between the profession of child life and the concept of therapeutic relationships? Comparing and contrasting various aspects of child life with psychotherapeutic processes and professions will best shed light on this question. The following areas will be covered:

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1. Review of various concepts related to therapeutic relationships that have been identified from several professions and psychosocial theories, with emphasis on their application to child life. 2. Identification of a typology of child life programming. 3. Examination of the ways in which relationship may interface with each of the types of child life. Finally, at the end of this chapter, a review of ways in which child life specialists develop their multiple relationship skills will be offered. Thus, we will not only move toward an understanding of what these myriad relationships are, but also how they are acquired. CONCEPTS IN THERAPEUTIC RELATIONSHIPS

Types of Relationships One way to examine therapeutic relationships is to look at the different types of relationships that might exist between individuals. Figure 1 presented early in this chapter, provides an introduction to this examination. In a fairly simple paradigm, Varcarolis (1994) delineates three types of relationships: friendship (social), intimate, and therapeutic (professional). It might be useful to add casual and business (professional) to this list, although they are less likely to interface with child life. Varcarolis defines friendship as when “mutual needs are met during social interaction.” Roles shift during friendships, and may include advice giving and meeting dependency needs, such as loaning money and helping with jobs. Intimate relationships involve a partnership with an emotional commitment to one another. Interaction between these individuals is personal and intimate, on social, emotional and/or physical levels. Varcarolis, who is writing from a nursing perspective, identifies that neither of these relationships is appropriate for the professional and/or therapeutic relationship. The therapeutic relationship moves through several stages, but its goal is to prepare the client and/or family for the time when they no longer need the professional. The previous two relationships embrace the possibility or even the probability that they will exist for an extremely extended period of time, as long as is mutually agreeable. Taking responsibility for ending the relationship is one of the expectations for a professional relationship within nursing, and thus impacts the establishment and course of the therapeutic relationship. Gary Schoener (1998), a psychologist, describes the relationship between therapist and client as a fiduciary contract—that is, an agreement between unequals in which one person has more power and more responsibility.

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Determining the type of relationship child life has with those it serves has always been a difficult task. Although the profession is now over 40 years old, it is still developing its identity. Due to the small size of the profession, and the lack any national licensure that would legally mandate standards, each employer is still free to internally establish its own description of the child life role. There are those who still see child life as a friend to children and a nice perk, but far from a profession. There are those who see child life as only an educator, and would not see the purpose in establishing a therapeutic relationship. More and more, however, employers are using the same standards that the profession has set for itself through the Association of Child Life Professionals. These standards clearly include the development of a therapeutic relationship as a key value. When this is the case, that is, both a professional and therapeutic relationship exists, then it becomes a boundary violation to establish a second (or dual) relationship such as friend, business partner, or family member. The reality that a therapeutic relationship does not allow for any secondary relationship to be safely pursued with the client is a major challenge to the establishing identity of child life. These limitations will be discussed in much greater detail in the section on boundaries. An example of the pitfalls possible in an ongoing relationship between a child life specialist and a 4-year-old girl might be helpful here. Mia is a little girl who was hospitalized for newly diagnosed cancer. Because of the aggressive nature of her disease, she was placed into a laminar flow protected environment for the induction of chemotherapy. Mia was the daughter of a Japanese single mother; the mother was a first-generation immigrant to America and retained much of her Japanese heritage. Because of the isolation factors that were part of her hospitalization, Mia could have no direct skin-to-skin contact during her stay, and all items in her room had to be carefully sterilized. Any entry into her room was done only in protective suits and masks. Mia’s mother had a difficult time with the protective clothing, and tended to sit outside the room and talk to her daughter through the plastic walls that surrounded the room. Mia was a funny, engaging, bright little girl, and the assigned child life specialist very much enjoyed going into the room for play sessions with Mia. A trusting, supportive, close relationship developed between the child and specialist. A therapeutic component of the relationship was also established, as Mia needed intervention to assist with procedures, with eating problems, and with developmental issues. On one occasion, Mia’s mother brought to the hospital a Japanese craft that the mom had enjoyed as a child, and that she wanted to share with her daughter. She asked the specialist for assistance in preparing the materials so that they could be placed in Mia’s room. Mia listened to the conversation and said “I don’t want to do that! I want to play

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with her!” pointing to the child life specialist. At that moment, the child life specialist realized that establishing such a close relationship with Mia, and allowing the mother to be excluded from this relationship, had been detrimental to the connection between mother and daughter. Even though the therapeutic relationship served to assist Mia through some difficult experiences, it had also undermined the mother/daughter bond, which would be the most important relationship Mia had once she was discharged. At that point, the specialist specifically worked on inclusion of the mother in all the new and enjoyable activities that were presented to Mia, and made the mother a partner in the efforts to assist Mia with the difficulties she experienced in the hospital. It was not adequate or even ultimately beneficial for the specialist to establish a trusting relationship with Mia if it was counterproductive of the support needed by the family as a unit. Being trusted by a child, becoming close with a child, is simply not enough when attempting to truly enter into a therapeutic relationship.

Phases of Therapeutic Relationships Within the specific realm of the therapeutic relationship, there are often thought to be stages or phases that help to define appropriate goals and maintain the dynamic of the relationship. Although each profession might describe the process in a somewhat different manner, Stuart and Sundeen (1995) identify three most commonly conceived phases in a therapeutic relationship. The first phase is the initiation or orientation phase. The most important goal for this phase is that trust is established. This phase usually includes some sort of introduction, the establishment of the purpose of the interaction, and a mutual decision about the plans and logistics for continued interaction. Some theorists divide this first phase into two sub-sections, an introduction section and a beginning or contractual section. The next phase is the working phase. At this point the professional works toward achievement of goals as established in the initiation phase. The final phase is the termination phase. During this phase, the focus is on ending the relationship, not on establishing new material. Closure for both the client and the professional is important here and is usually achieved by summarizing the previous interactions and accomplishments. Phases in the progress of relationships between parents of children with chronic illness and healthcare providers were also identified by Thorne and Robinson (1989). They recognized three phases, with the development of a guarded alliance between family members and professionals being the final step in an ongoing relationship. Following up on this work, Knafl, Breitmayer, Gallo and Zoeller (1992) also documented this development of an alliance

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and described it as a blend of technical and interactional competencies. The study emphasized that although parents valued and needed provider’s expertise, it was the compassion and respect that were consistent components when describing outstanding healthcare encounters. In other words, the therapeutic or healing component of the encounter was highly significant but it was the supportive component that made it outstanding. The alliance phase as defined by these two studies could not be achieved without a therapeutic relationship that meets identified healing needs along with a strong supportive connection. The child life specialist has traditionally not needed to establish such clarity in the phases of a relationship she or he develops with a child or adult. Historically, the child life specialist worked with hospital inpatients. The relationship was developed as close to the time of admission as could be established by the specialist, remained a working relationship all during the hospital stay, and terminated at discharge. As healthcare has changed, and as the role of the child life specialist has expanded, these external limitations are less relevant. In the inpatient setting, the specialist may have had a fixed number of beds for which to be responsible. The case load, by definition, never exceeded that number of children. Now, child life specialists work in outpatient areas in which children may return again and again for years. Even in the inpatient settings, as relationships develop with children who are managing chronic illnesses, there is the potential to see children over and over again during repeated admissions. Specialists also work in less traditional settings outside the hospital, in a manner that more resembles the social worker or psychotherapist. In all these situations, it becomes the responsibility of the professional to take charge of both beginning and terminating relationships. If the child life specialist does not purposefully take charge of the phase of relationship, the “open” cases will soon become much more numerous than can be successfully managed, and a lesser quality of service will be the outcome. If the specialist struggles to appropriately terminate relationships, boundary violations, as will be discussed in an upcoming section, are a clear risk. The termination or ending phase of a relationship has always been a challenge for the profession of child life. It has only been recently that child life specialists understand and embrace the importance of planning for the end of a relationship with children and family members. This planning includes empowering families to problem solve on their own, strengthening a child’s resilience so that he or she is not dependent on the specialist, and emotionally preparing oneself for separation from a child and family with whom a real connection exists for the specialist. Child life has also learned that therapeutic relationships and supportive relationships can be established in a

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fairly short period of time. Look at child life services in the emergency department. In the space of a few hours, a specialist must complete an introduction including the establishment of trust, must work through the professionally appropriate tasks to assist each individual patient and family group with their specific challenges, and must terminate with closure that empowers both the child and the supporting family to deal with additional problems without the support of the specialist.

Theoretical Foundations In the earlier history section of this chapter, groundwork was presented on the development of the concept of the therapeutic relationship in mental health. It is probably not particularly useful to divide psychotherapeutic theory by individual professions. In reality, all the mental health professions, including psychiatry, psychology, social work, counseling, play therapy, art therapy, and others, have emerged from the same theoretical roots. Whether child life is partially or fundamentally a mental health profession will be discussed in the next section. To whatever extent child life embraces the tenants of one or more of the various mental health professions, then the same theories that influenced the development of these fields have equivalent importance to child life. There are three primary theoretical bases for most of the clinical mental health work done today. Two have already been discussed; they include psychoanalytic theory, initiated by Sigmund Freud and expanded by many others, and the humanist movement as represented by Carl Rogers. A third major theoretical category is that of learning theory, and entire therapeutic approaches, including cognitive therapy and behavioral therapy, have developed based on these constructs. There are other important therapeutic traditions, including existential psychology, Gestalt therapy, family therapy, and even advice-giving counseling. All of these approaches to therapeutic intervention have both theoretical and application components, and all require significant study and clinical training in order to be able to be implemented to their fullest potential. Those individuals who pursue careers in any of the mental health professions have had comprehensive education in one or more of the areas above. It is theory that, in a very major way, guides the clinician to the appropriate level and type of therapeutic relationship. Although individuals who practice child life have sometimes had training in one or more of the theories and philosophies above, they rarely fully embrace one particular theoretical approach to their work. More often child life specialists are eclectic, knowing a little about several approaches to clinical work. They may be behaviorists when they set up a reinforcement sched-

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ule for a child, humanists when they give a child with interrupted self-image unconditional positive regard, and psychoanalytic when they interpret the meaning of a child’s symbolic painting. The fact that many theories are embraced partially, but none fully, is one of the factors that makes the definition of therapeutic relationships so difficult in child life. Earlier in this chapter caution was expressed about considering child life a therapy in and of itself. This eclectic nature of child life does not allow for the tight, theoretical parameters that are a condition of almost all therapies. Establishing such specific parameters would be restrictive, and child life should carefully consider the advantages and limitations before moving further in that direction.

Trust In the section describing the phases of a therapeutic relationship, it was stated that the most important goal in the first phase is the establishment of trust. The concept of trust should be very familiar to every child life specialist. All educational curriculums for child life teach Erik Erikson’s (1963) eight stages of psychosocial development, and every child life professional knows that Erikson defines the very first stage as the stage of “Trust versus Mistrust.” Erikson believed that this stage was the most crucial in a human being’s development, as it allowed the child to establish a sense of hope and the expectation that the world is a good place. It was acknowledged by Erikson that experiences in both trust and mistrust could and should occur during that first year, but that a baby should emerge from this stage with a favorable balance of trust over mistrust. More recent theorists go a step further by suggesting that experiences in mistrust are less damaging and foster growth and balance better when they occur after the first twelve months. Arnold Gesell (1952) theorized that positive, trusting relationships would develop best when the parent consistently followed the cues of the baby. Theorists agree that if trust is not established in the first year of life, it will be very difficult to establish later, and will always be more fragile than it might have been if integrated in the child’s first few months. So, if trust is so pivotal in the development of a human, what is the role of trust in the work of the child life specialist and what is the connection between trust and relationship? An excellent example of issues of trust in child life is reported by Divna Wheelwright (2015). In this article, the author not only looks at trust issues for a child patient, but also considers the trust and mutual respect that must exist among members of the healthcare team. Although it is possible to trust an object (“I trust this medicine to cure me,” “I trust this rope to not break”), the trust we are concerned with involves person-to-person interrelationships. When one loses trust in an object (the med-

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icine doesn’t work after all, the rope breaks), one simply avoids that object in the future. When one loses trust in another person, not only is the relationship in jeopardy, but also anything that person is connected to or representative of will be impacted by the loss of trust. Trust is defined as having confidence in another person, or accepting another person as being true and reliable without being able to or seeing the need to verify it. Trust in a professional, which, as we have established, includes child life, means that one should be able to expect certain knowledge and certain professional behavior. Trust is the very core of positive human interactions, and is an absolutely necessary component of a supportive relationship. It becomes a component of a therapeutic relationship in that, if trust is lacking, the client may well terminate the relationship and select an individual with equivalent abilities who does provide the trust factor. How long would you remain with that dentist we discussed earlier, no matter how good he is, if you did not trust him? Long ago, as a new child life specialist, I found myself working with a 2year-old child I’ll refer to as Ronnie, hospitalized for an acute medical condition. This little boy had experienced significant negative events over his first twenty-four hours in the hospital, but was now with me in the playroom, and was beginning to relax and develop a trusting relationship that I hoped would allow me to support him successfully throughout the rest of his stay. His mother had mentioned to me that she would need to leave to pick up a sibling from school, and I had worked with her on appropriate methods of saying “goodbye.” As I was sitting on the floor with Ronnie, his mother stood up behind him, and before I could stop her, put her finger to her lips in a silent “shusssh,” and backed out the door. For a brief moment, I thought everything would be all right, and that the relationship I had begun would survive this challenge. However, after a moment, Ronnie glanced over his shoulder and froze. He did not see his mother. He looked at me again, then back to the empty space behind him, and then began crying with a despair that was heart-breaking. This child, who had been playing so trustingly with me, now could not be comforted by me or anyone else. He continued to express his distress until the mother returned a couple of hours later. Most importantly, for the rest of his hospitalization he would have nothing to do with me. I had lost his trust, and it was complete and final. All opportunities to help him accept medical personnel, to support him through procedures, to enhance his development, were as lost as the trust. Thus, I learned not only the necessity of trust in a relationship, but also the power of mistrust to undermine the best of intentions. Trust carries with it responsibility and the potential to do significant harm.

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Communication Skills The foundation of any therapeutic relationship is dependent on the communication skills of the therapist. This is such an important concept for child life that an entire chapter in this book has been devoted to the topic. The authors of that chapter have stated unequivocally that, “It is through the effective use of communication that child life specialists facilitate interpersonal relationships with children, staff and family members. . . .” The current chapter will hopefully provide some clarity as to what a therapeutic relationship is, but it is the chapter on communications that will help the reader gain insight as to how to establish one.

Boundaries A concept in all professional relationships, which also certainly impacts therapeutic relationships, is that of boundaries. Boundaries are those limitations or barriers that keep some things in and keep other things out. Peterson and Solomon (1998) point out that those interpersonal boundaries operate on a continuum. When they are too tight, individuals are prevented from engaging in open and giving relationships. When they are too loose, an individual is robbed of the sense of being a unique person whose needs and wants are separate from others. Peterson and Solomon describe three ways in which boundaries are established for professionals. First there is licensure or certification. When given official sanction by society or by a governing body, the professional receives society’s permission to engage in activities that might not usually be allowed but are for the good of the client. For example, it is not considered appropriate for a typical citizen to observe the genitals of someone else’s child. In fact, it is called child pornography. However, it is acceptable for a child life specialist, by way of his or her credential, and with the goal of providing some positive, helpful intervention, to observe and even interact with a child who is not clothed. The next boundary method is the development of ethical standards for each profession. Child life, through the Association of Child Life Professionals, has established a code of ethical responsibility for its members that clearly states expected behaviors for members of the profession, or at least those professionals who are members of the profession’s only organization. Principle 10 of that code states that the child life specialist shall assess and amend any personal relationships or situations that may interfere with professional effectiveness, objectivity or otherwise negatively impact children and families. The Principle goes on to state that a minimum of two

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years following the conclusion of a professional role shall lapse before any personal relationship is permitted to develop with children or family members. Thus, a very clear boundary between personal relationships and professional ones has been drawn for child life specialists. Even though the boundary is clear, the application is not always simple. For example, if a child life specialist is assigned to a child who has been hospitalized for a significant length of time, and that child’s birthday occurs, should the specialist purchase a gift? What if the child is from a very poor family and the specialist knows that minimal or no gifts will be forthcoming; does that change the standard? These situations are always difficult. The child life specialist must find ways to support that child but not allow the support to be seen as an implication that the specialist is a friend or will be available to that child indefinitely. Perhaps a gift can come from the entire staff, or from the volunteer department. As long as the specialist consciously avoids the impression that there is a personal relationship between child and specialist, then it is possible to provide services that will allow the child to feel acknowledged and supported. Finally, boundaries are developed by the implied definitional assumption that professional relationships are to be kept professional, not personal. As long as there is clarity about what type of relationship one has with one’s client, boundaries can be maintained. Personal information, such as telephone numbers, home addresses, outside relationships and personal health challenges should not be a part of the interactions between child and specialist. When the sharing of a personal piece of information, such as a diagnosis that is the same as the patient, is being considered, very careful thought should be put into the advantages versus the risks. It is possible for a child life specialist to be just as effective without revealing specific personal information. For example, if the specialist is going on vacation, and the teen patient asks where the specialist is going, it is not necessary to be hostile or dismissive by saying, “I can’t tell you because it is personal.” But it is possible to say “I’m going to the beach. Have you ever been to the beach? What is your best memory of a vacation?” By shifting the focus of discussion from specialist to patient, the specialist can maintain the professional relationship. In the situation of revealing personal medical information, it is just as useful for the specialist to say, “I have known lots of kids with (your diagnosis) and here are some of the things they have taught me.” If it becomes important for the child to meet a real person who has risen to the challenge of his or her diagnosis, it would usually be preferable to introduce the child to another child or adult with the same medical experience, and allow that new friendship relationship to provide the support the child needs. Then, if differences arise between reactions the child may have and reactions of the

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new friend, the child life specialist is still a mediating party who can help the child understand that no two people’s experiences are ever exactly the same. In 1996, in response to concerns about boundary violations in nurses, the National Council of State Boards of Nursing developed a conceptual framework of professional boundaries. In this document is a continuum of connectedness that helps us all to understand the interaction between professional boundaries and therapeutic relationships. It is called “The Zone of Helpfulness.” An adjusted version of the nursing concept, with examples more appropriate to child life, may be seen in Figure 2. In the center of this zone is the area of most potential for a therapeutic relationship. If one moves too far to the left, there is potential for underinvolvement and the neglect of professional responsibilities. Too far to the right, and the relationship becomes over-involved, with the need to maintain the relationship taking priority over the needs of the client. This template does not require that the professional embrace a particular style or even theory, but rather be aware of one’s place on a relationship continuum. The most important point in any discussion of boundaries in child life is that when professional boundaries are violated, therapeutic relationships and all other relationships are permanently impacted.

DISTANT COLD ALOOF FORMAL

ZONE OF HELPFULNESS FOR PROFESSIONALS BALANCED

INTRUSIVE OVER-INVOLVED SELF-FOCUSED

ZONE OF HELPFULNESS EXAMPLES

“We need more than toys” “I didn’t feel supported” “My child was just another prep”

EXAMPLES

“My CLS tried to parent my child” “My CLS is my best friend” `”I call my CLS at home for advice”

Figure 2. Zone of Helpfulness for Professionals.

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A new challenge to the establishment of appropriate boundaries involves the current prevalence of social networking participation. For those child life specialists who maintain Facebook, Twitter, Instagram or other similar accounts, it becomes quite simple for patients and parents to access personal information regarding their child life specialist. This is especially significant for adolescent patients who are attempting to “befriend” the specialist with whom they work. The names of child life specialists are usually prominently presented on identification badges, so it is rarely difficult for children and families to obtain full names of the professionals and investigate their lives through social media. It is important for child life specialists and any other professionals who provide intense human services to make sure their social media outlets are kept private.

Transference and Countertransference The concept of transference is one of the most important contributions Sigmund Freud made to the understanding of human behavior. In its most basic conceptualization, Freud theorized that when people enter therapy, the way that they see and respond to their therapist will be influenced by two factors; they will see the relationship in light of their earlier ones, especially very early childhood relationships, and they will have a tendency to replay those earlier situations. In other words, clients will transfer onto their therapist their previous patterns of behavior and response. It has become clear over the years since this theory was developed that it applies not only to clients of psychotherapists, but to all of us in many of our relationships. So, it is not surprising that child life specialists would be the recipients of transference responses from adults with whom they work, and also with children. Several years later, Freud saw similar responses in the therapists toward their clients, and titled this countertransference. This concept has produced much controversy among therapists, but the most common use of the term now refers to all the feelings and attitudes about the client that occur in the professional. Although Freud saw transference as the vehicle by which the work of therapy was done, he had little good to say about countertransference. However, when understood and used as a tool, both transference and countertransference can be useful to the child life specialist. It does not take long for a child to begin acting toward a child life specialist the same way he or she acts toward a parent. This is transference in its most simple manifestation. Children easily transfer their reaction patterns to a variety of adults in their lives. These patterns provide wonderful clues as to how a child learns, responds to challenges, and copes with stress. By paying close attention to transference reactions, the child life specialist can map out a plan

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for intervention that fits the style of that individual child, and has the potential to be effective both in the institution and at home. The stronger the relationship between the child life specialist and the child, the more the transference reaction is likely to occur. Transference can also present obstacles when the importance of the relationship between child and child life specialist becomes stronger at the expense of the child’s connection to his or her parent, as seen in the example provided in the section on “Types of Relationships.” Transference can also occur between a parent and a child life specialist. Parents may react toward the professional the same way they have reacted toward other authority figures in their lives. If the child life specialist is much younger than the parent, the parent may transfer reactions they have to a younger sibling or even to an adolescent child onto the specialist. As long as these reactions are understood in the light of normal transference, they become working tools for the specialist. Countertransference is more challenging for the child life specialist. There will always be children who “push your buttons,” whose behavior or attitude or demeanor produces emotional responses in you that are less than professional. Perhaps you have a hard time with the child who bullies others, or with the child who whines and complains a lot. Any pattern of responses on the part of the specialist is an opportunity for personal growth and discovery. The first step in dealing with countertransference is to recognize that a pattern is occurring or that you are having a strong reaction to a particular characteristic of a child. Then, the specialist must find a way to accept that this reaction may be coming as much from the professional’s own values, judgments and personal experiences as from the child. The next step is to find an outlet to openly discuss your reaction with a supervisor or peers in an environment that feels safe and free of judgment. At the very least, the mature child life specialist will want to be able to recognize and control countertransference reactions so that they do not interfere with therapeutic work. At best, specialists may utilize this countertransference in their work with children and may address and even resolve some powerful experiences from their own early lives. TYPOLOGY OF CHILD LIFE With so many different types of relationships, and so many different standards, the reader may be quite confused at this point about what really constitutes a therapeutic relationship. A great deal of this confusion comes from the fact that, as mentioned earlier, child life still embraces many different types of programming, coming from many different professional and theoretical backgrounds. The first person to attempt to describe these differences

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was Rosemary Bolig (1983). She listed five basic approaches to child life programming, including (a) diversion, (b) activity/recreation, (c) child development, (d) therapeutic, and (e) comprehensive. She stated that the child life program elements and strategies offered are typically related to the educational background of program staff and administrators. In the 35 years since the publication of this typology, many of Bolig’s observations continue to be valid. However, a few adjustments to her typology theory may be useful to describe the current profession of child life. The Association of Child Life Professionals and its certification process have educated the healthcare community to the potential benefits of The Joint Commission life. National standards are available to hospital administrators, and The Joint Commission now places expectations on healthcare facilities that mesh well with the goals and objectives of the more comprehensive child life programs. However, without national licensure, and with only minimal outcome-based research, it is still up to each hospital administration to determine what typology of child life programming will be supported. Bolig felt that program typology was determined mostly by educational background of child life professionals. This educational background is a major factor, but certainly not the only one. Hospital administrators and medical/psychosocial personnel, community expectations, and budget all influence the type of program a hospital may have. The most sophisticated and comprehensive child life director may not be able to implement the type of program he/she desires due to limitations involving the factors above. There are a few other considerations to be added to the five program types described by Bolig. It is not clear if the typology “educational” is included in any of the initial five. Some child life programs focus primarily on providing both academic and health-related education to patients. Child life specialists in such programs must usually be certified teachers, and may receive additional educational certifications such as diabetes instructor. Although no child life program is completely educational in nature, if that is the primary function of the staff, then it should probably be its own typology category. Second, there are still programs in which the child life specialist is primarily a nice and friendly person who solves problems, acts as patient advocate and promotes the institution. These programs are typically oneperson programs, and often are administratively managed by the volunteer department, public relations, or some similar administrative area. Again, the specialist may have some opportunity to play with or prepare children, and may attempt to incorporate more comprehensive child life skills into day-today work, but these are not the person’s primary functions. Next, it would be useful to add the word “entertainment” to the category called “diversion.” This category applies to the child life program whose primary function is to

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take children’s minds off the hospital experience by developing the most interesting and pleasurable events possible, filling as much time as possible in a child’s day. Finally, since we have seen that the term “therapeutic” can apply to almost any professional orientation, and since Bolig was referring to psychoanalytic and humanistic theory in her use of the word “therapeutic,” change the category “therapeutic” to “psychotherapeutic” to better indicate a mental health focus. An amended typology, without judgment as to value or usefulness, might be listed as follows: (a) friend/advocate, (b) diversion/entertainment, (c) activity/recreation, (d) education, (e) child development, (f) psychotherapeutic, and (g) comprehensive. It must be clearly understood that these categories are not mutually exclusive, and one can find some components of all categories in most child life programs. Problemsolving activities and preventive activities can be part of every category. It also should be understood that to be a truly comprehensive program, all of the components must be interwoven in a seamless matrix that is constantly adjusted to meet the needs of each individual patient. THE INTERFACE BETWEEN TYPOLOGY AND RELATIONSHIP Now that we have a model for child life typology, it becomes a bit easier to examine how therapeutic relationships might interface with these professional categories. Consider the four earlier-described relationship types. If you will recall, these are professional relationships, supportive relationships, clinical relationships and therapeutic relationships. We will examine these relationship types from the perspective of the seven categories above. The first category, which is professional relationships, is fairly simple to describe. If an individual is doing work as a child life professional, calling herself or himself a child life specialist, representing the field of child life, then it becomes incumbent upon that person to maintain existing standards of a professional relationship. No matter what type of program is offered, a professional is responsible for maintaining standards. For child life, those standards are implied by the standards set by other similar professions, and stated by the Association of Child Life Professionals. They are not nationally mandated by licensure or by law as they are in other, more established professions. These standards include ethics, boundaries, and the responsibility for a certain level of professional practice. Even if the child life specialist is paid to simply walk around with coffee for parents and toys for children, the same standards apply. No matter what the typology of a program, it is still not professional to take a teenage patient to his driving test, go to the movies with the family of a patient, talk to a child or parent about one’s own

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personal problem, or date the parent of a child you are seeing. The only way a child life specialist could be exempt from these standards is to acknowledge that he or she is not a professional. Although it is a bit more difficult to determine clinical relationships, it can be simply stated that a clinical relationship exists in any type of child life program in which clinical services are provided. There are probably differences of opinion as to what constitutes clinical service, but most would agree that, entertainment, probably education and even basic advocacy are not necessarily clinical services, and so may not involve a clinical relationship. The typology of activities/recreation in and of itself is not clinical, but recreation therapy, as a healing modality, certainly is clinical. The use of this relationship category is only significant in that it helps to define one possible label for the type of service provided. Since it does not imply any standards or make any statements about child life as a profession, this relationship category is only marginally useful in child life. It becomes important only if the child life professional misuses the term clinical to have a broader definition than described here. The concept of supportive relationships is an interesting one, as it has meaning to the general population from common usage. Friends, family members, even casual acquaintances may find themselves in supportive relationships. The ability to establish supportive relationships is probably one of those subtle “X-factor” skills that many individuals in child life have when they enter the profession. It is a skill that is very hard to teach, although it can be refined by personal awareness and both personal and professional maturity. Certainly, the entire spectrum of child life types can be enhanced by the establishment of supportive relationships. In our dentist analogy earlier, it was clear that although a dentist could do his work without a supportive relationship, such a relationship would add a positive dimension to the interaction between professional and client. It was also pointed out that without a supportive relationship, a client is more likely to avoid or even terminate the contact with a professional. Some types of child life programming, however, are more dependent on supportive relationships than others. Diversion, activities, education and arguably child development may well be able to be provided without consistent establishment of supportive relationships. As long as the relationship is not punitive or intimidating, a neutral relationship will not prohibit these types of child life. However, in those typologies that are more clinical in nature, supportive relationships are an integral part of the work, and become inseparable from therapeutic relationships. The final relationship type, the therapeutic relationship, can now be examined as it interfaces with the various typologies of child life. As stated earlier, all the types of child life programming have the potential to be ther-

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apeutic, that is, to provide some healing or problem-solving. So, any of the typology categories may well include therapeutic relationships. Whether the problem is developmental, psychosocial, functional or logistic, the relationship that allows the child life specialist to assist the patient or a family member in solving that problem is a therapeutic one. For some types of child life programs, such as diversion/entertainment, activity/recreation or child developmental, that focus more on prevention and maintenance of wellness, the use of a therapeutic relationship is, by definition, less significant. This does not mean the relationships established are less supportive or less humanistic and it certainly does not mean that the relationships are less important. For example, one could argue that diversional programming solves the problem of boredom and activity/recreational programs address the problem of negative parental evaluation of the hospital. It also seems clear that it is more effective to be therapeutic if there is also a supportive relationship in place. Let’s use an unlikely example. The child life program fits into the first typology, that of simply being nice and helpful. One child life specialist is assigned to get coffee and water for families in the surgery waiting area, and provide toys for waiting siblings. No specific preparation, therapeutic play or other more clinical duties are assigned. However, in our example, a mother seems upset because she must find the billing office but is worried about leaving the waiting area. The supportive child life specialist will sit down with this parent, plan some sort of coverage in case she is needed in the waiting room, provide clear directions to the billing office, and perhaps even provide a beeper number in case the parent becomes delayed. A therapeutic relationship has developed, a problem has been identified and solved, and there also seems to be a supportive relationship established built on trust and caring. But what if the child life specialist is a negative, frustrated person? The specialist still could give the directions and explain what would happen if the parent were called. But what if the specialist tells the mother to stop worrying and do what she needs to do, minimizes her possible role with her postsurgical child, states that “anyone can find their way around this hospital?” Would the problem still be solved? Probably it would, if the parent follows the instructions of the professional. If so, the relationship is a therapeutic one. Is a supportive relationship established? Clearly not. The risk here is that, since a supportive relationship has not been established, the problem may not be solved and the healing may not occur. The parent may feel so uncomfortable that she doesn’t trust the specialist’s directions or assessment of the situation, and so doesn’t leave to take care of the billing problem. Even though we have established definitional differences between therapeutic and supportive relationships, in practice the two may be so interwo-

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ven as to be inseparable. In fact, there probably is almost always considerable overlap between supportive and therapeutic relationships in child life. At the 2005 Child Life Council Conference on Professional Issues, a graphic model of the interactions between types of relationships was presented. This model is mobile, and can be adjusted to the realities of any child life program, and actually to any healthcare or mental health profession. Figure 3 represents what might be a standard depiction of professional relationships

Figure 3. Professional Relationships in Health Professions

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in healthcare in general and a depiction of professional relationships in child life. Notice that there is some mixture of supportive and therapeutic components in the general healthcare model but the therapeutic component is the larger. In other words, there are many professionals who do their work competently and yet never need to, or chose to, establish supportive relationships with their patients. Also notice that there are only minimal non-clinical relationships in the general model. Child life, on the other hand, has a much larger percentage of supportive relationships, and almost all therapeutic relationships overlap with the supportive ones. Child life also has a higher percentage of non-clinical relationships than most other healthcare personnel, due to work responsibilities with volunteers, donors, entertainers, media personnel and materials suppliers. As we bring this discussion of the interaction between relationship types to a close, it must be acknowledged that no one set of definitions, no one graphic model, will be acceptable to all those in child life. Some professionals believe that since the roots of child life came from play and child development, the professional focus should be on developing supportive relationships. Some professionals, especially those that came out of one of the more traditional therapies, like social work, psychology or art therapy, are more inclined to see all of the work of a child life specialist as therapeutic in nature. Whatever approach any individual, or program, or institution may take, it is still important for us to acknowledge both our roots and our current function. Child life should not have to apologize for the importance of the supportive nature of its work, nor should it have to hide or avoid the therapeutic components of the profession. Child life must embrace its preventive, play-intensive focus, but also acknowledge the need for reactive, problem-solving services that require a truly therapeutic approach. DEVELOPING RELATIONSHIP SKILLS Even though we have talked at length about what these child life relationships are, we haven’t addressed how they are acquired and how they can impact the professional, especially over time. Therapeutic relationships are not a static entity; they change and are challenged over the career of the child life specialist. Usually the change is in the direction of positive development, as specialists becomes more seasoned in their work and more able to personally reflect on the purpose and function of child life. However, a change in supervisory administration, a catastrophic experience in either one’s personal or work life, or even a work overload can have a negative impact on the professional’s ability or willingness to develop therapeutic

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relationships. One could devote another entire chapter to the growth and development of a child life specialist, but for the sake of brevity, we will examine three areas that contribute to the ability of the specialist to develop both therapeutic and supportive relationships. These areas are (1) pre-professional training, (2) on-the-job training, and (3) personal growth. The first steps in learning to establish and differentiate professional relationships, both therapeutic and supportive, occur in an individual’s personal life prior to formal education. Then, college education, specific career education, and clinical training through practicum and internship experiences all add to the emerging sense of what a therapeutic relationship might entail. The pre-professional now knows the theory behind the development of therapeutic relationships, but has had only minimal opportunity to examine such relationships. Even clinical training, as important as that is, is a protected experience that rarely mimics the true demands on a professional. The actual job world is the second area in which the professional can learn about relationships. It is finally the place where the new child life specialist can gain real competence in the art of developing, maintaining and utilizing the variety of relationships that are part of the field of child life. Through modeling, child life specialists can watch other more experienced professionals, both in child life and in related professions, do the work they do so well with children and families. Newcomers to child life should take every opportunity possible to watch nurses, psychotherapists, educators and others build relationships that allow them to do healing work with children and adults. Slow down and try to see the nuances, and observe from a place of openness and non-judgment. Hopefully, at the same time that there are opportunities to model the behavior of others, there is also someone in the new specialist’s life who can act as a mentor. Mentors are most effective when they are outside the supervisory role, and can, through discussion and demonstration, help the new professional critically examine the scope of therapeutic relationships that are being developed, keeping in mind professional limitations, supportive roles and clinical responsibilities. Mentors may be within or outside the profession of child life, and can occur throughout the career of a child life specialist. Finally, during a person’s work life, there are always official supervisors who have specific responsibility for helping the new child life specialist learn to establish the best possible relationships, and the continuing child life specialist deepen her or his knowledge of this important component of child life. Even if the supervisor is outside the profession, there is often the possibility of peer supervision to explore these issues. One would think that the above opportunities to develop insight into therapeutic relationships would be enough. Well, they are not! It would be

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remiss to leave the topic of professional development without referring to the personal growth that is an integral part of the most successful child life specialists. In order to really understand and utilize therapeutic relationships, one must not only develop a significant level of personal maturity, but also a willingness to be purposeful, intentional and undefended in one’s work. Some individuals develop these abilities naturally, some work on them in structured personal development activities such as journaling or retreat work, and some seek group or individual counseling to achieve such growth. If we in child life truly believe that creative and expressive activities help a person to cope more successfully, handle stress and develop the most positive interpersonal relationships possible, we should be open to exploring as many of these modalities as possible in our own lives. SUMMARY We have now examined therapeutic relationships in child life from numerous perspectives. A therapeutic relationship has historically been defined as being involved with another person in a way that provides healing. Therapeutic relationships, then, apply primarily to situations in which there is a problem or deficit to be addressed or repaired. It seems clear that such a definition, although linguistically simple, is inadequate to cover the range of relationships that exist between child life professionals and those they serve. This type of relationship does not, by definition, include the supportive, humanistic component that is so important in many types of child life programming. It also omits reference to the significant child life work that has to do with preventive or proactive interventions. All the previous information on relationships would lead one to the conclusion that an ideal and truly comprehensive child life relationship includes all the components of a supportive relationship, all the components of a therapeutic relationship, and specific reference to maintaining normalcy and preventing development of negative psychosocial sequellae. And all this should be done in situations that involve both clinical and non-clinical relationships. It is this combination of relationships that sets child life apart from other professions, including both the traditional therapist as well as the friendly support person. The child life specialist who omits the purposeful, goal-directed, intentional nature of the therapeutic relationship will lose as many opportunities as the one who omits the trusting, client-centered genuineness of the supportive relationship. However, the all-encompassing nature of the described comprehensive child life relationship must include the following caveat. Complex relationships such as this offer the professional much flexi-

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bility to determine which relationship is useful at which time, and to transition back and forth between modalities. Therefore, the components of a professional relationship, including standards, conduct, boundaries and expectations, must be maintained at the highest level of consciousness at all times. All these terms play an important role in defining the ways that individuals in child life interact with others, and each should be used appropriately in any discussion of the profession. A review of seven different, overlapping types of child life programs has been provided, with attention to the place of therapeutic relationships in each of the program types. Therapeutic relationships are useful in some of the categories, and absolutely mandated in others. However, there is no clinical work of child life that is likely to have maximum success without the warmth, trust and positive regard that is included in the supportive part of the relationship. The final section of this chapter is perhaps the most important, as it discusses the ways in which child life specialists can develop and maintain the important relationships described in the earlier parts of the chapter. Obviously, all of the education available pre- and post-graduation is important, especially the development of appropriate communication skills. But personal growth, self-awareness, willingness to let down defenses and be vulnerable, and a strong desire for honest feedback will lead the specialist to the most powerful, most professional, most useful relationships possible with the children and adults who are the recipients of child life services. REFERENCES American Physical Therapy Association. (2013). Code of Ethics for the Physical Therapist. Retrieved from http://apta.org/Ethics?Code. Bennett, K. (2012). Child life alphabet: Q is for quick rapport. Child Life Council Bulletin, 30(4). Bolig, R. (1983). Play in hospital settings. In T. Yawkey & T. Pellegrini (Eds.), Child’s play: Developmental and applied. Hillsdale, NJ: Erlbaum. Child Life Council. (1990). Official documents of the Child Life Council. Bethesda, MD: Author. Erikson, E. H. (1963). Childhood and society. New York: Norton. Gesell, A. (1952). Infant development: The embryology of human behavior. New York: Harper. Kahn, M. (1991). Between therapist and client: The new relationship. New York: Freeman. Knafl, K., Breitmayer, B., Gallo, A., & Zoeller, L. (1992). Parent’s views of health care providers: An exploration of the components of a positive working relationship. Children’s Health Care, 21, 90–95.

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National Council of State Boards of Nursing. (1996). Professional boundaries: A nurse’s guide to the importance of appropriate professional boundaries. Chicago, IL: Author. Peterson, E., & Solomon, D. (1998). Maintaining healthy boundaries in professional relationships: A balancing act. Home Care Provider, 3, 314–318. Random House Webster’s Unabridged Dictionary. (2001). New York: Random House Reference. Schoener, G. R. (1998). Boundaries in professional relationships. Minneapolis: Walk-In Counseling Center. Stuart, G. W., & Sundeen, S. J. (1995). Principles and practices of psychiatric nursing (5th ed.). New York: Mosby. Thorne, S., & Robinson, C. (1989). Guarded alliance: Health care relationships in chronic illness. Image, 21, 153–157. Varcarolis, E. M. (1994). Foundations of psychiatric and mental health nursing (2nd ed.). Philadelphia: Saunders. Wheelwright, D. (2015). A matter of trust. Child Life Council Bulletin, 33(1). Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L., & Thompson, R. (1988). An experimental evaluation of a model child life program. Children’s Health Care, 16, 244-254.

Chapter 5 COMMUNICATION AND CHILD LIFE DENE G. KLINZING AND DENNIS R. KLINZING INTRODUCTION n our chapter of the first edition of this book (Thompson, 2009) we argued that communication is a fundamental component of child life practice. And, in an earlier work (Klinzing & Klinzing, 1977) we noted that it is through the effective use of communication that child life specialists facilitate interpersonal relationships with children, staff, and family members and help to create and maintain family-centered care. Our argument was supported by McConnell (2000) who observed that effective communication helps to improve healthcare outcomes, task coordination, worker satisfaction, and that it saves time and energy, and increases patient comfort. Our claim about the importance of communication in child life was further supported by Levetown (2008) who declared in the Journal of Pediatrics that, “healthcare communication is a skill that is critical to safe and effective medical practice; it can and must be taught. Communication skill influences patient disclosure, treatment adherence and outcome, adaptation to illness, and bereavement” (p. 1). In addition, Keir and Wilkinson (2013) have endorsed communication skills training in pediatrics; Shilling, Edwards, Rogers, and Morris (2012) have stressed the importance of improving the communication skills of those who care for inpatient disabled children; and Damm, Leiss, Habeler and Ehrich (2015) have argued for including children when communicating with parents about a child’s disease. During our many years of supervising students aspiring to become child life specialists and working with their supervisors, we discovered that those who choose child life as a profession tend to have personalities, attitudes, and values that equip them well to be good communicators. However, we also

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discovered that sometimes missing from the communication repertoire of child life specialists was a knowledge of why they were good communicators. Knowing the whys of communication skill can be very important, especially when communication problems or failures occur. It has been the goal of our professional lives to explain the whys of communication to our students and to those who have attended our professional presentations, thereby helping them to become even better communicators. We continue with this goal in the revised version of this chapter. While we have retained several sections of the chapter that we wrote in 2009, we have edited and reworked the chapter when needed, we have expanded and updated the references, and we have revised Table 1, “Selected Journals with Communication Content.” We consider the following topics to be the most important considerations to explain the whys of communication: the process, transactional, and symbolic nature of communication; several important features of verbal communication including abstraction, labeling, fact inference confusion, and jargon; the sources of nonverbal messages; misconceptions about listening and how to improve listening. We have grounded each of these topics with applications to child life and examples of exemplary practice. First, some comments about the literature that pertains to communication in child life. LITERATURE: HEALTH COMMUNICATION AND CHILD LIFE The field of health communication is broad, expansive, and interdisciplinary. It includes the study of interaction that occurs with patients and health professionals in all healthcare settings, as well as media influences in healthcare and public health campaigns. Because of this broad focus, research findings and writings that bear on health communication can be found in an array of journals (see Table 1). While none of the journals listed in the table focus specifically on communication in child life, they often contain information that can be generalized, adapted, and applied to the communication encounters faced by child life specialists. Indeed, our strategy in writing this chapter has been to search various journals as well as books for such information. Our literature search was not confined to recent publications because many important findings have been published in previous years. We have integrated the results of our literature review throughout the chapter.

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• • • • • • • • • • • • • •

Annals of Family Medicine. (2003– ). Leawood, KS: Annals of Family Medicine Inc. Child: Care, Health and Development. (1975– ). Hoboken, NJ: Wiley-Blackwell. Communication Quarterly. (1953– ). Pittsburgh, PA: Eastern Communication Association. Communication Research. (1995– ). Thousand Oaks, CA: Sage. Family Practice News. (1971– ). Parsippany, NJ: Frontline Medical Communications. Journal of Health Communication. (1989– ). Mahwah, NJ: Taylor and Francis. JAMA. The Journal of the American Medical Association. (1883– ). Chicago, IL: American Medical Association. JAMA Pediatrics. (1911– ). Chicago, IL: American Medical Association. Journal of Advanced Nursing. (1976– ). Hoboken, NJ: Wiley-Blackwell. Journal of Applied Communication Research. (1973– ). Annandale, VA: National Communication Association. Nursing Research. (1952– ). Philadelphia, Pa : Lippincott, Williams and Wilkins. Pediatric Nursing. (1900– ). Pitman, NJ: Jannetti. Pediatrics. (1948– ). Evanston, IL: American Academy of Pediatrics. Qualitative Health Research. (1991– ). Newbury Park, CA: Sage.

THE COMPLEXITY OF HUMAN COMMUNICATION Human communication is often seen as a simple, uncomplicated event. Someone speaks and a message is sent. Another listens and a message is received. What could be simpler? Well, as is the case with many things that seem uncomplicated at first glance, there is more, much more to the story.

Process Human communication is not a linear, static event as is indicated in the view of a speaker sending a message and a listener receiving the message. Rather, human communication is a process that involves dynamic, ongoing, and constantly changing interaction. There are literally hundreds of diagrams and explanations of the “process” of human communication. However, we continue to feel that the health-related explanation that Burgoon and Ruffner (1978) provided several years ago captures the essence of how communication is a process. They related the process of communication to the process of digestion and observed that: . . . to explain digestion, we could list the elements of the digestive process just as the organs involved: the mouth, stomach, small and large intestines, pancreas, and liver. But these elements of the digestive process must work together, interacting and changing to meet different needs. Like digestion,

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the process of communication also involves change, interaction, adaptation and on going function. (p. 8)

Extending this illustration, we have observed that the elements of communication include speaker, listener, message, channel, feedback, and context, and that each of these elements change, interact, and adapt in ongoing functions. Further, just as a problem with one of the elements of the digestive process can cause the digestive system to become upset, a problem with one of the elements of the communication process can cause a communication breakdown. Thus, the process nature of communication not only contributes to its complexity, but also it contributes to its vulnerability. Recognizing that communication is a complex process that is vulnerable to breakdowns has an important implication for child life specialists. It reveals the presence of “Murphy’s Law” (if something can go wrong it will) in all communication. This is not to say that successful communication is impossible. Rather, it alerts us to the potential for communication failures to occur and the need to take measures to prevent or reduce the failures. The measures to be taken include recognizing when an element of communication may cause a problem and then acting to prevent or correct the problem. We can see these measures in action when a child life specialist recognizes that the message about a medical treatment may frighten or confuse a child and then modifies the preparation explanation to suit the age, ability, and sensitivity of the child. Similarly, we have seen a child life specialist recognize that the hallway context of a conversation was reducing the ability to communicate with a parent and then move the discussion to a private office. Awareness of communication elements, interactions, problems, and subsequent actions taken to address the problems does not guarantee communication success, but it can reduce the likelihood of communication failure.

Transaction Human communication is a transactional activity, one in which participants reciprocally influence each other. The most obvious form of this reciprocal influence is verbal behavior, what people say to one another. For example, during staff meetings we can hear participants influence one another through verbal behavior when they exchange information and ideas, when they argue and disagree, and when they reach agreement on a course of action. However, participants in communication also influence one another by means less obvious than verbal behavior. They do so through nonverbal behaviors such as facial expressions, posture, gesture, movement, and vocal variations. Have you ever modified a statement in mid-sentence or

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simply stopped talking when you saw a colleague grimace or drop his or her jaw as you were making a remark during a staff meeting? If so, you were influenced by nonverbal behavior. The influence of nonverbal behavior may be even more subtle. Slight head nods, forward leans, and barely audible “uh hums” can cause us to continue talking while head shaking, frowns, and averted eyes can cause us to stop. Although the influence of nonverbal behavior can be considerable, even when it is subtle, there are situations in which nonverbal behavior may have little or no effect. This lack of effect occurs when someone ignores or is not sensitive to nonverbal signals. For example, we have probably all encountered individuals who did not respond to our attempts to signal our need to end a conversation by repeatedly glancing at our watch or walking backward and away from them. By recognizing the transactional nature and the nonverbal dimensions of conversations, child life professionals can identify and attend to aspects of communication that may go unnoticed and unattended by others. In other words, knowledge of communication as transaction can enable child life professionals to observe glances and nods and to notice sighs and hesitations of speech that may be missed by others and to make appropriate adjustments when this happens. For example, the information gathered from “informed observation” can be used to adjust words and actions to the fit the situation, to avoid or explain medical terms when speaking with children and parents, to repeat messages when explanations are greeted by puzzled looks, and to establish appropriate distances during conversations. While attention to the transactional nature of communication may not eliminate misunderstandings, it can help child life specialists to contribute to communication success by recognizing and accommodating to the multiple messages that are exchanged during conversations.

Context The place where a communication occurs can have an unexpectedly powerful effect on the outcome of communication. Evidence of this assertion can be found in the communication failures that litter the landscape as a result of meetings that have been held in hot, poorly ventilated rooms, conversations that have occurred in noisy hallways, and interviews that have been held in offices with ringing phones. Our previous discussions of process and transaction in communication highlight the complexity and fragility of communication and strongly urge that measures be taken to see that context does not interfere with effectiveness in communication. How can child life professionals do this? The distractions that are so frequently a part of context need to be recognized and, whenever possible, steps need to be taken to

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eliminate them. For example, in each of the preceding communication failures a room change could have eliminated the distractions of context. Of course, sometimes such changes are not possible. When this occurs, the context problem should be acknowledged rather than ignored and the other elements of communication that can be changed should be changed. Meetings in hot rooms may be shortened, conversations in noisy hallways may require moving elsewhere or standing closer, and ringing phones can be redirected until interviews are completed. In other words, the key to having context work for rather than against communication success is the ability to recognize and adapt to its very considerable influence.

Symbolic Humans have the unique ability to engage in symbolic activity—to use symbols (words) to stand for objects, actions, concepts, and feelings. This seemingly simple activity has enormous consequences. It enables adults to have abstract thought and thereby accounts for the ability of humans to consider the past and plan for the future. Without it, our existence would be confined to the present, and our communication would be limited to the signals displayed by other species such as the raised tail danger signal of the white tail deer. The symbolic activity involved in human communication contributes significantly to its complexity. This is because the meaning of the symbols we use as we communicate does not reside in the symbols themselves but in the people who use them. As a result, even common symbols can have varied meanings. For example, the word “hospital” can frighten a child for whom it means a place filled with frightening instruments and needles, while to a child life specialist the word means a place where they can use their skills and training to help children and their families deal with hospitalization. Even though standardized usage and dictionary definitions of symbols exist, varied meanings abound in human communication. Thus, the possibility always exists that the words we use will not mean the same thing to another person that they mean to us. Child life specialists can profit from knowledge of the symbolic nature of human communication by recognizing the potential to misunderstand or be misunderstood, especially when talking with children, and then taking measures to reduce misunderstandings. These measures may range from choosing and using words that do not frighten or confuse children to planning preparation explanations that recognize and accommodate the potential for misunderstanding of the explanations.

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VERBAL COMMUNICATION IN CHILD LIFE: PROBLEMS AND SOLUTIONS Although verbal communication has considerable power, it does not always function as a positive force in human interaction. Some of the features of verbal communication that can lead to problems include: fact inference confusion, “allness” statements, word-thing confusion and jargon. Fortunately, there are remedies for these problems that may be helpful in child life.

Fact Inference Confusion There are two basic types of statements that we use as we communicate with one another, statements of fact and statements of inference. However, during conversations, statements of inference are often mistaken for statements of fact. This occurs because there are no grammatical, syntactical, or other verbal distinctions between the two types of statements. Further, tone of voice and inflection can make an inference sound like a fact. As a result, inferential statements can assume the weight of fact, even though no evidence is offered to support them. When this occurs, further discussion may reveal support for “fact sounding” inferential statements and conversations can proceed and be productive. However, when further discussion does not reveal support for “fact sounding” inferential statements, the result can be unreasoned discussions, illogical conclusions, disagreements, arguments, or conflicts. Further, during the “heat” of a deteriorating conversation it can be difficult to determine that a problematic inferential statement is the source of the deterioration. In order to combat the problems that can be created by fact inference confusion, three suggestions are offered. First, we must try not to present inferences as facts. Second, we must be able to detect when we or others are making inferential statements. Third, we need to provide or request evidence to support statements we make or hear. These suggestions can be especially useful during the stressful situations that child life specialists face with worried parents. For example, parents of sick children often share their fears about their child’s condition during conversations. Careful listening during these conversations can make it possible to detect when parents’ fears are based on unsupported inferences that need to be addressed by a physician who can provide facts about the child’s illness. Detecting and addressing unsupported inferences can also prove useful in staff and team meetings because it can help reveal the need for facts and evidence as issues are addressed. Of course, tact must be exercised when support for inferences is requested or the request may be seen as a challenge rather than an appeal.

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Allness Errors In the early 1930s a scientist named Alfred Korzybski observed that while we can never know all about something, the structure of our language tends to lead us to think that we can. It does this by inviting us to use absolutes rather than relative terms as we describe and discuss our observations and experiences. Because absolutes require fewer words and less discrimination, they are simply easier to use than relative terms. Korzybski (1933) labeled the tendency to use absolutes the “allness error.” Allness errors are a problem in communication because they obscure and devalue differences and promote a dogmatic, judgmental attitude. Examples of allness errors are easy to find because they occur each time we use the words all, every, none, and never. While these words may be found in many types of conversations, they are often found in abundance when frustration and hostility dominate an interaction and they take the form of statements like: “You always . . . ,” “You never . . . ,” “All physicians, nurses, aids, etc. are . . . ,” and “Every one of them is . . . ,” or “None of you. . . .” Most of us have probably used one or more of the above phrases at one time or another, and it is very likely that we have heard others do so as well. Because even an occasional “allness error” can create problems, we need to try to remove them from our communication repertoire. The elimination of allness errors may be initiated by a two-step procedure. The first step requires a determined, persistent effort to recognize when others and we make allness errors. This may be accomplished by carefully listening for allness errors as we talk with children, family members, and other staff and team members throughout the course of a workday. When allness errors are detected, step two comes into play. It requires the insertion of linguistic qualifiers such as: some, many, few, most, usually. sometimes, or often, to replace allness statements. For example, a child life specialist appropriately uses linguistic qualifiers when saying to a child who is about to have a finger stick, “some children find it helpful to blow the hurt away when they are having a finger stick.” While it may be tempting to insert linguistic qualifiers for others when they make allness errors, such behavior will likely be seen as presumptive or worse, and it is therefore not recommended. Modeling the insertion of qualifiers when we personally make an allness error is the recommended course of action. The aim of this practice is not just to eliminate allness words, but also to promote the adoption of an attitude that acknowledges the need to qualify statements at an appropriate level of generalization. Thereby, our conversations may depict a more accurate picture of reality and conflicts may be avoided or effectively addressed. Of course, elimination of allness errors is not a “cure all.” But, we have found it to be a very useful

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device in our efforts to improve personal as well as professional communications.

Word-Thing Confusion “The word is not the thing” is a mantra-like phrase uttered repeatedly by those linguists who believe that word-thing confusion can be quite troublesome in communication (Brown & Van Riper, 1966). Sometimes words can stimulate images and feelings that are so intense that they can replace reality. For example, the word surgery can so frighten children, parents, and others with images of pain and suffering that it obscures the reality of pain management, recovery, and the reason for surgery. In situations of such wordthing confusion there is a need to test the words that are stimulating fears against reality (Klinzing & Klinzing, 1985). Children and parents who are terrified by the word “surgery” are ill prepared to make such reality tests on their own. Preparation procedures provide child life specialists with excellent opportunities to identify when children and parents are experiencing wordthing confusion and to help correct the confusion through reality checks. While such checks may not eliminate all fears, they can reduce irrational fears by connecting them to reality. A further value of information about word-thing confusion lies in its potential to sensitize other health professionals to the mental torment that medical terms can cause children and their families and the need to address this problem.

Jargon Various dictionaries offer three different definitions of jargon: 1. Confused unintelligible language. 2. The technical terminology or characteristic idiom of a special activity or group. 3. Obscure and often pretentious language marked by circumlocutions and long words. The healthcare professions abound with jargon, and each of the above definitions can be seen at work in healthcare settings. The first definition applies to the jargon used in healthcare because to most laypersons the language used by health professionals seems confused and unintelligible. Further, medical jargon can frighten, irritate, intimidate, and confuse children and their families and thereby create communication failures (Flynn & Ricca, 2000). Consider the plight of the parents when the pediatric resident tried to explain to them what had been done to alleviate the fever and seizure in their young child. The pediatric resident reported “that the LP was clear gram

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stain, protein and glucose OK, CBC showed elevated WBC with a shift, calcium and BMP OK, cultures were sent, the CT and MRI were ordered. Neuro was called and an EEG might be done. Sepsis was considered so amp and cefotaxime were started. We considered HSV, and CMV but they were less likely. Do you have any questions?” The second definition applies to the jargon used in healthcare. When it is used among health professionals it can promote clarity and precision of meaning while providing an economy of language that can save time when time is of the essence. Health professionals have an obvious obligation to be familiar with the specialized terminology of their professions. Less obvious, but still important, is an obligation to recognize that patients and their families may be confused by medical jargon and that translation may be needed for understanding to occur. Sometimes child life professionals may need to assist in the translation process, but care must be exercised so that professional boundaries are not violated. The third definition of jargon, the use of obscure and pretentious language, has no place in family-centered healthcare. Successful communication in healthcare is too important to be compromised by the need to impress. NONVERBAL COMMUNICATION: CONSIDERATIONS FOR CHILD LIFE SPECIALISTS Knapp and Hall (2013) have defined nonverbal communication as the “communication that is effected by means other than words, assuming words are the verbal element” (p. 8). However, they point out that their definition “does not account for the complexity of the phenomenon adequately” (p. 8). We agree; nonverbal communication is a very complex process that includes message sources such as: physical appearance, clothing, facial expression, gaze, gesture, touch, voice, and space. The sheer volume of these elements makes them a very powerful force that can overwhelm the words we exchange. For example, when someone six feet, six inches tall has as scowl on his face, his hands on his hips, and is shouting, you may not be able to attend to what he is saying but you certainly will conclude that he is angry. Even subtle nonverbal behaviors can overpower spoken words. When a child utters a softly spoken, hesitant, and halting, “I’m OK,” to a question about how she feels, should her verbal or the nonverbal response be believed? In order to provide insight about the impact of nonverbal communication in child life, we will consider each of the above listed elements and we will identify implications and applications.

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Physical Appearance The way we look sends messages to others about who we are, and these messages have immediate and often enduring effect. While the importance of inner beauty cannot be denied, outer beauty plays a vital role in communication because people tend to respond more favorably to those who are perceived as physically attractive as opposed to those who are seen as physically unattractive. Research shows that physically attractive persons not only score higher than unattractive persons on a wide range of socially desirable evaluations, but also that being physically attractive seems to be an advantage in school, in dating and marriage, on the job, when persuading others, in building self-esteem, when charged with a crime, and during hospitalization (Knapp & Hall, 2013). In an exhaustive review of literature, Toledano (2013) confirmed the favorable impact of physical attractiveness in employment decisions. So, what are the implications of this information for child life professionals? If you are judged as physically attractive you may well enjoy many, readily available opportunities for personal and professional success. But, what if you are judged as physically unattractive? Toledano (2013) argues that business organizations may reduce the problem of “lookism” by arguing that it can lead to missing out on superior candidates. It is, of course, especially important for child life specialists to be able to look beyond physical attractiveness because of the likelihood of having to work with children who, for various health-related reasons, may not be physically attractive. Also, looking beyond physical attractiveness is inherently a “best practice” because judging others on the basis of beauty is shallow and confining, and looking beyond physical beauty provides breadth and depth to our relationships with others.

Clothing In his book on nonverbal communication Joseph Devito (2012) that noted that “As a subset of your overall physical appearance, clothing is one of the most significant nonverbal cues people notice about you before any verbal information is exchanged” (p. 174). In other words, clothing communicates. It does so because others use what we wear to make judgments about us. Knapp and Hall (2013) have noted that judgments about age, sex, and socioeconomic status using clothing are more accurate than judgments about another’s attitudes and beliefs. They also point out that what we wear can affect how we feel about ourselves, and that feeling can affect how we communicate. Since clothing has strong communication potential, the choices we make about how we dress can be quite important. We may, of course, choose

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to ignore the communication potential of what we wear, but we do so at some risk. This risk can be particularly troublesome in healthcare settings where professional attire, uniforms, and written and unwritten dress codes prevail in spite of the move to casual clothing in many parts of the corporate world. Child life specialists find themselves in a particularly difficult situation with regard to dress. This is because the nature of the work of child life specialists requires casual dress while the demands for status require more formal attire. Management of the formal/casual attire dilemma is not an easy task. Some child life programs have chosen to have their staff in scrubs. While this protects from damaged clothing, it can increase the risk of role confusion for children and parents. Some child life specialists have found it helpful to have “dress” clothing available in their lockers or offices for professional meetings and functions. This strategy is valuable because such “dress” has the potential to enhance the image and status not only of individual child life specialists, but also of the profession of child life as well.

Facial Expression In 2009 Hess and Thibault noted that in The Expression of Emotions in Man and Animals, Darwin (1872) laid the groundwork for whole fields of research on facial expression. Of interest here is Darwin’s argument that facial expression of emotion is innate, and universal. Extending Darwin’s argument, Ekman and Friesen (1975) observed that facial expression of six basic emotions appear to be universal: surprise, fear, disgust, anger, happiness, and sadness. This observation has been the subject of numerous studies and arguments, most of which support the position of Darwin and of Ekman and Frieson. However, most recently Feldman-Barrett (2014) challenged the conclusions drawn by Ekman and others about the innateness of facial expression of emotion. Ekman (2014) responded with a lengthy blog defending his positions. We do not intend to become embroiled in the controversies about facial expression of emotion, but we do believe that facial expressions reveal emotions. It is, therefore, important to attend to facial expressions in general and especially to the facial expressions of children in healthcare settings. A child’s expression of fear as he or she is being prepared for a procedure can guide a specialist to adjust preparation so that the child’s fear is reduced. Similarly, a child’s facial expression of sadness suggests that the child may need to be consoled. However, expressions of emotion can also be masked, as when we “put on a happy face” when we are sad or hide our anger when we are incensed. Therefore, caution must be exercised as facial expressions are interpreted. The task of interpreting facial displays is further complicated by the fact that

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facial expressions may exhibit more than one emotion; an occurrence referred to by Ekman and Friesen (1975) as facial blends. For example, unexpected receipt of a gift may trigger a simultaneous display of happiness (because of the receipt of a gift) and anger (because of a prior agreement of no gifts). Despite the problems of masking and blends, communication of emotion is still the primary function of facial display and as Remland (2000) has noted, “Perhaps no other channel of nonverbal communication is more significant than is the face” (p. 175). Two additional observations about facial displays may prove useful. The first concerns what is known as the facial feedback hypothesis. This hypothesis was first proposed by Charles Darwin (1872) and contends that that facial expression of an emotion can directly and immediately influence a person’s experience of that emotion. Research studies lend support to the hypothesis (McHugo & Smith, 1996; McIntosh, 1996) and by extension they may be seen to suggest that helping sick or injured children to smile or laugh may, in fact, help them to feel better. The second observation concerns facial mimicry, the mirroring of facial expressions of another person. A review of research on mimicry shows that mimicry occurs quickly and effortlessly (Dimberg & Ohlman, 1996). Even infants have been found to mimic facial expressions they see (Field, Woodson, Greenberg, & Cohen, 1982). The implication of this observation for child life professionals is obvious. Smile. It’s contagious and, combined with the observation about facial feedback, helpful.

Gaze Gaze is the term used by communication specialists to describe the way we use our eyes to communicate. It includes: nonreciprocal gaze (gaze that is not returned), mutual gaze (when two people look at each other), gaze aversion (when one person looks away from another), and staring (extended, unwelcome looking at another person). Kendon (1967) and others have identified five functions of gazing behaviors: regulatory, monitoring, cognitive, expressive, and relational. The regulatory function of gaze can be seen when we extend a glance to another beyond a brief look of recognition, and thereby signal a desire to initiate a conversation, or when we avert our gaze to show that communication is not desired. Gaze also plays a role in regulating communication by providing turn-taking cues during conversations, as when we look at someone at the end of an utterance to signal that it is their turn to speak. The monitoring function of gaze occurs as we try to assess the reactions of others when we speak with them. If the other person is looking at us, we generally assume that he

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or she is listening to us. And, if the other person averts his or her gaze, we assume that he or she is no longer listening. However, the cognitive function of gaze reveals that gaze aversion can be caused by the processing of ideas, not just disinterest (Day, 1964). Thus, we should not automatically assume that someone is not listening to us if they look away as we are speaking to them. They may be engaging in cognitive functioning and trying to process what we have just said. For example, when children avert their gaze during medical preparation sessions, their gaze aversion may indicate that they are processing the ideas that are being presented to them. The expressive function of gaze occurs as we react to the visual cues provided by the eyes and the brow area of the face. Expression of the emotions of fear and surprise appear to be concentrated in the eye area. As a result, the eyes can provide important clues as to when a child or parent may need emotional support. Gaze also appears to be related to the relationship between interactants and their mutual perceptions of dominance, status, power, control, and affection. Summarizing the various findings related to gaze and relationships, Knapp and Hall (2013) have said that the unifying thread in these studies is that, “People tend to look at those with whom they are interpersonally involved. Gazing motivated by hostility or affection both suggest an interest and involvement in the interpersonal relationship” (p. 360). The relational aspect of gaze is especially important to child life specialists because it is an important means by which they establish relationships with children, parents and other professionals. This information about gaze may prove useful in child life because it can help to direct attention to the gaze behavior exhibited by children, parents, and others and because it can provide a stimulus and a direction for an assessment of one’s own use of gaze behavior.

Gesture We are capable of making a vast number of movements with our bodies, and each movement has the potential to be a nonverbal cue that communicates something to others. It has been estimated that the number of movements that we are able to make range as high as 700,000 (Birdwhistell, 1970). In order to study this great number of movement cues, researchers have devised various systems to classify them. The most widely used system is one developed by Ekman and Frieson (1969). It categorizes behaviors by function. The categories include the following: emblems, illustrators, adaptors, affect displays, and regulators. An emblem is a nonverbal behavior that can be translated into a verbal message. For example, a headshake back and forth indicates disagreement, an index finger pressed to the lips is a request for quiet, and a thumb up indi-

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cates approval. Most North Americans generally understand these and many other emblems. However, the meaning of specific emblems may vary from one culture (e.g., Chinese, Arab, French) or subculture to another (e.g., African-American, Italian-American, Irish-American). Therefore, child life specialists need to be careful when using emblems lest they communicate an unintended or insulting message to someone from another culture. Illustrators are gestures and movements that accompany our speech. Pointing, drawing in the air, and moving one’s head to stress a point are examples of illustrators. Illustrators may help to clarify what is being said, but if they are used excessively they may become distracting. Knapp (1980) has observed that more illustrators occur when speakers are excited than when they are not, and that difficult communication situations tend to stimulate an increased use of illustrators. Thus, when difficult situations occur in child life it is likely that children, parents and family members will use a large number of illustrators as they vent their frustration and anger. Nonjudgmental listening is probably the best response to such behaviors. Affect displays are facial expressions and body positions that are a result of emotional states. These include such behaviors as smiles, frowns, puzzled looks, hands on hips, hands to the face, and crossed arms. Affect displays may accompany or be separate from verbal communication; they may be fleeting or extended behaviors. Further, those who display affect may not be aware of their displays. Affect displays occur continually during communication, and they provide information about the feelings and attitudes that communicators have toward the topics being discussed and toward each other. Interpretation of affect displays is difficult because they can be genuine or contrived. Child life specialists need to be sensitive to their own display of affect and be cautious when interpreting the affect displays of others. Adaptors are behaviors that occur during the course of conversations but are more a means of satisfying physical or emotional needs than behaviors used to accomplish a communication objective. Examples of adaptors include scratching, picking, rubbing, grooming, and tugging at one’s ear. Adaptors seem to be responses to tension, and they have been found to vary with level of tension and anxiety (Ekman & Friesen, 1972). Adaptors may provide child life specialists with information about the tension level of children and others with whom they work. However, it is important to recognize that an adaptor such as scratching may be the result of a simple itch. Regulators occur when nonverbal codes are used to monitor and control interactions with others. For example, if you look away when someone else is trying to talk or walk away from them, you will most likely cause them to stop talking. On the other hand, if you nod your head as another person is talking you will probably encourage them to continue talking. While verbal

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and nonverbal codes often work in concert, they can also be contradictory. When contradictions occur, the nonverbal behavior will be believed by most adults. However, because most children have not learned to deal with mixed codes, they may become confused and frustrated. So, the obvious suggestion for child life specialists is to be aware of regulating behaviors and make sure that verbal and nonverbal codes match when talking with children. An interesting recent finding bears mentioning here. Rowbotham, Holler, Lloyd and Wearden (2012) reported on research in which they examined gestures in pain-focused conversations. They discovered that gestures often contained more information about pain than speech. For example, a strongly clinched fist may indicate constant pain, while intermittent fist clinching may indicate throbbing pain. This finding reinforces the importance of gestures in healthcare settings because of the frequency of conversations about pain. It also urges that special attention be paid to the movement that accompanies a child’s talk about pain.

Touch Ashley Montagu, a noted anthropologist, argued that touch is necessary for human existence, and he reported on numerous studies to support the contention that touch during infancy and childhood is required for subsequent physical and psychological health (Montagu, 1971). A continuing and growing body of scientific research is providing further support for the importance of touch. The Touch Research Institute at the University of Miami School of Medicine is conducting and has compiled examples of this research. Touch is not only essential to healthy development but also it is an important aspect of nonverbal communication. Research by Jones and Yarbrough (1985) has revealed that there is a wide range of meaning associated with touch including: positive, negative, playful, controlling, ritualistic, task-oriented, and accidental. In addition, there are implicit as well as explicit, culture-specific rules or norms which dictate who may touch whom, where, when, how much, and for how long. Further, while noting that notouch policies have been adopted to protect kids from sexual predators, Linden (2015) warns of the problems with a touch-phobic environment. What are the implications for child life specialists of the complexity and risk involved with touch? Two primary implications are apparent. First, because children and their families may attribute various meanings to the use of touch, it may be useful to accompany a touch with an explanation about why that particular touch is necessary. For example, it may be helpful to tell a child why you are holding his arm firmly as it is being sutured, even though

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the child’s loud cries make it difficult for him to hear. Second, because problems can occur when culture-specific rules about touch are violated, it is essential to learn the rules about touch that apply in the cultures of the families served by your healthcare facility. This knowledge can be obtained from colleagues, by observing families’ use of touch as they interact in a playroom or reception area, or by reading about the specific culture(s). Jones (1994) admonishes that care should be taken to see that our use of touch does not startle, frighten, offend, or interrupt and that a sincere apology should be offered if it does so. This seems like especially good advice for the practice of touch in child life because the stress that children and families experience in healthcare environs may cause them to react poorly to a touch as innocuous an unexpected tap on the shoulder. This is not to say that the use of touch in child life must be eliminated. In fact, the use of appropriate “positions of comfort” or a gentle touch during a child’s procedure can demonstrate how comforting touch can be. Touch can do much to reduce stress, promote calm, and provide comfort. But, it has to be used with knowledge and care.

Voice “It’s not what you said, but how you said it that upsets me.” If you have heard or used this statement or similar statements, you have experienced the impact that voice can have on communication. A simple change of vocal emphasis can have a dramatic effect on the meaning of what we say. For example, try saying, “I really care for you,” and emphasize a different word each time you say it. The impact should be obvious. In addition to emphasis, the characteristics of the voice that can influence meaning including the rate, tone, pitch, volume, and rhythm. Any variation in these features can communicate. While these variations can be used to confirm or reinforce the meaning of the words we use, they may also serve to contradict or change the meaning of what we say, as indicated in the example above. Furthermore, when vocal behavior contradicts the words that are used, listeners judge the speaker’s intention from the voice, not the words (Mehrabian & Weiner, 1967). However, it is important to recognize that the ability to detect and use vocal features to change meaning is a skill that seems to have a developmental component that does not appear until adolescence. If a speaker’s words contradict her vocal expression, a young child, unlike most adults, will believe the words (Burgoon, Buller & Woodall, 1996). Thus, a child is likely not to “get it” if the voice is used for sarcasm, irony, and contradiction. Vocal behaviors are also used to regulate the flow of conversations. Knapp (1980) has indicated that this occurs in four ways. First, if we drop our pitch, it signals a wish to “yield the floor.” Second, vocal cues such as “ah, ah,

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ah,” are signals that we wish to speak. Third, increasing volume and rate indicates a desire to “maintain one’s turn.” Fourth “uh-huhs” and “mmhmms” by a listener tell the speaker to keep talking. The implications of this information for child life specialists and others who work with children and families are fourfold. First, careful attention should be paid to “how something is said” because it can change the meaning for adults and confuse children. Second, appropriate use should be made of the vocal cues that can be employed to manage the flow of conversation. These cues can be especially valuable in managing conversations with family members who need to be encouraged to talk or who need to listen. Third, research by Buller and Aune (1992) and Remland and Jones (1994) has shown that it can be helpful to match the rate of speech of the other person in a conversation. Besides having more positive attitudes towards same-rate speakers, listeners also are more likely to comply with their requests. Fourth, Haskard, Williams, DiMatteo, Heritage, and Rosenthal (2008) reported that the vocal affect of physicians’ and nurses’ voices correlated with patient satisfaction, and other positive outcomes. This finding suggests that the positive, comforting vocal display that we have observed in child life specialists helps to contribute to their effectiveness as they interact with children and families. There are, of course, cultural differences in regard to vocal behavior. For example, some cultures (Arab, Israeli, and German) encourage the use of high volume when speaking to show strength and authority while other cultures (Thai, Japanese, and Philippine) encourage soft speech to show good manners and education (Ruch, 1989). Knowing that the children and families with whom you work are from a culture that uses voice in a manner different from your own may help to prevent the attribution of negative characteristics to them when they speak with a voice that seems to be too fast or too slow, too loud or too soft, or too high or too low.

Space The way we use space and distance as we interact has the potential to communicate nonverbal messages. In a now classic work, Edward T. Hall (1966) identified four distances that can communicate messages. These distances are: intimate distance, personal distance, social distance, and public distance. Intimate distance ranges from touch to about 18 inches and is reserved for interaction with people with whom we have a positive emotional relationship. If non-intimates invade this space they are met with withdrawal, rebuke, or worse because it is usually perceived as an aggressive act. However, under certain circumstances, such as a medical examination or a visit to the dentist, a non-intimate may be permitted to move into the inti-

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mate distance. On the other hand, if an intimate partner avoids the intimate zone, counselors suggest that this may signal a distancing in the relationship (Rothwell, 2000). Personal distance ranges from 18 inches to four feet. This is the distance that is normally used for casual conversation. The type of communication that goes on in this range is less personal than that which occurs with intimate distance. Most North Americans feel comfortable carrying on conversations at this distance. If someone tries to close this distance, we back up. If we become backed into a corner while trying to maintain personal distance, we will tense up and look for a way out of the conversation as well as the corner. We may even arrange furniture in our offices and homes to protect our personal distance. Social distance ranges from four to about 12 feet. Its closer phase, 4 to 7 feet, is the distance used for professional and business conversations. The far range of social distance, 7 to 12 feet, is used for formal and impersonal encounters such as court hearings. The need to discuss confidential matters may occasionally require that this distance be closed as when a judge asks lawyers to “approach the bench.” Public distance ranges from 12 feet outward. At this distance, it is difficult to carry on a dialog. Thus, public distance is best suited for lectures and public speeches. Although at this distance there is a loss of detail in the face and eyes of listeners, a speaker can still judge listener response from other cues such as silence, laughter, and of course, applause. In order to make effective use in child life of information drawn from Hall’s four distance categories, it must first be recognized that Hall drew these categories from observations of middle-class North Americans and that he cautions against generalizing to other cultures or subcultures. However, Hall (1959, 1996) did observe that some cultures use less personal space than others, and therein resides one explanation of why cross-cultural communication can be problematic. For example, people from Southern European and Middle Eastern cultures tend to stand very close together as they talk. North Americans, as we have seen, need a minimum of 18 inches to three feet for casual conversations. Thus, it can be expected that someone from Southern Europe or the Middle East will try to close distance when speaking to a North American and that the North American will try to maintain distance. Not surprisingly, reports of the results of such conversations indicate that the Southern Europeans and Middle Easterners find the North Americans to be distant and aloof while North Americans find the Southern Europeans and Middle Easterners to be pushy and inappropriately intimate (Hall, 1959). The primary value of Hall’s observations is to sensitize us to cultural differences in the use of space and distance. This sensitivity can be quite use-

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ful when communicating with children and families from various cultural and ethnic backgrounds because it can help prevent the occurrence of situations like the one just described. LISTENING Effective listening is one of the most important and least appreciated elements of human communication. Listening effectively makes it possible for us to understand and be understood. It completes the communication process. Without effective listening communication becomes a soliloquy rather than a dialog. However, in spite of its importance, effective listening is virtually ignored in our educational system and it is taken for granted in workplaces and during social encounters. As a result, many communications fail due to poor listening behavior. We cannot provide a comprehensive analysis of listening in this chapter. However, we can begin to address the problem of poor listening and to promote effective listening in child life by examining some misconceptions about listening and by considering how correcting the misconceptions can improve listening.

Listening Misconceptions There are four misconceptions about effective listening that we believe deserve attention. First is the mistaken impression that effective listening is a behavior that develops naturally as part of the maturation process rather than a skill that must be learned (Nichols & Stevens, 1957). This mistaken impression helps to account for the lack of attention paid to listening, and it helps to perpetuate the myth that effective listening is synonymous with hearing. In reality, listening is more than just hearing. Larry Barker (1981), a widely-recognized authority on listening, argues that the listening process includes four stages: hearing, attention, understanding and remembering. Hearing, the first stage, is the physiological process required for the following stages to occur. Attention, the second stage, directs hearing to particular sounds and blocks out other sounds. For example, as we hear someone speak in an auditorium, we may block out the sound of others who may cough, or carry on private conversations. Understanding, the third stage involves attaching meaning to the sounds to which our attention is directed. The attachment of meaning to sounds is not an easy task. It is the result of experience, association, and context and thus the “word-sounds” we use to communicate can have various meanings. For instance, think of the meaning that the word “surgery” or “anesthesia” has for a parent of a child who is sched-

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uled for open-heart surgery as compared with the meaning of the words for a vascular surgeon. We also use listening as we hear and observe a pediatric patient engaged in medical play to ascertain a child’s understanding of medical experiences. Barker includes a fourth stage in his listening process: remembering. He notes that a listener not only receives and interprets a message, but also adds it to memory. However, what is remembered may be different from what was heard. Evidence of the problems associated with the memory phase of listening can be found in virtually every situation that requires patients or parents to recall information that is presented to them and in circumstances involving trauma and stress. A second misconception about effective listening is that speakers control communication more than listeners. Many people seem to believe that speaking is synonymous with control in communication and that listening is simply a passive response to what is said. In reality, listeners can exert as much, if not more, control over communication than speakers. They do so by choosing whether or not to listen, and if they listen, by choosing how to respond to what a speaker says. Have you ever daydreamed during a meeting? Was the speaker in control? Have you ever heard a shy child expand upon an answer as you nodded and smiled while listening? If so, you have experienced the power that listening can exert on communication. The opportunities to use the power of listening to improve communication in child life abound and awareness of this power is the first step toward its effective use. A third misconception about listening is that we usually remember most of what we hear. As a matter of fact, research on retention has showed that immediate recall after listening to a ten-minute talk was less than 50% and that after twenty-four hours it was less than 10%. This report strongly suggests that we do not remember most of what we hear. Further, Barker and Watson (2000) argue that even when we try to listen harder, we do not necessarily listen better. Child life specialists, as well as other health professionals, need to be especially attuned to the limitations of listener retention because of the critical nature of much of the communication that occurs in healthcare. More specifically, not only is it important to recognize one’s own retention limitations, but also, there may be times when it is appropriate to help others to recognize the limits of their retention ability. For example, overstressed parents may be helped considerably by the suggestion to write down information provided by a physician rather than relying on their ability to listen and remember what the physician says. The use of objects such as dolls, medical equipment, photographs, or diagrams can help children to listen to what is said during preparation. A fourth misconception about listening is that noise is a relatively minor

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problem in listening that is easily managed. This misconception arises from a failure to recognize that noise can be psychological as well physical and that psychological noise can be more difficult to manage than physical noise. The type of noise that we usually think of when we here the word noise is physical noise. It is distracting sounds like hospital paging, rattling food carts, loud talking visitors, and annoying or frightening sounds from medical devices. Physical noise can often be reduced or eliminated by closing doors or moving closer to a patient or family member to carry on a conversation. However, psychological noise is not so easily managed. This is because psychological noise is difficult to detect. Just because someone looks as though she is listening does not mean that she is doing so; her mind may be “a thousand miles away.” For example, a stressed mother of an ill child may not hear a word that is said, even though she looks attentive. Further, research has indicated that the nonverbal feedback displayed by young children does not always provide an accurate indication of their listening comprehension (Klinzing, 1972). Therefore, instead of trying to detect when someone is distracted by psychological noise it is probably better to assume that distraction is ever-present and to try to compensate for its impact. Such compensations may involve: repeating important messages and supplementing them with written documentation; using examples, and illustrations that are drawn from listeners’ experiences and frames of reference during conversations; keeping oral explanations and instructions as uncomplicated as possible; and by modeling good listening behavior. CONCLUSION In this chapter, we have provided information about the complexity of human communication, we have discussed communication concepts and research findings, and we have offered suggestions about applications of this information in child life. Our aim has been to add to the communication repertoire of child life specialists and thereby further the development of a primary means of meeting the psychosocial needs of pediatric patients and their families. We trust that our explanations will be understood and that our suggestions prove useful.

REFERENCES Barker, L. L. (1981). Communication. Englewood Cliffs, NJ: Prentice Hall. Barker, L. L., & Watson, K. (2000). Listen up. New York: St. Martin’s Press.

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Birdwhistell, R. L. (1970). Kinesics and content. Philadelphia: University of Pennsylvania Press. Brown, C. T., & Van Riper, C. (1966). Speech and man. Englewood Cliffs, NJ: Prentice Hall. Buller, D. B., & Aune, R. K. (1992). The effects of speech rate similarity on compliance: Application of communication accommodation theory. Eastern Journal of Communication, 56, 37–53. Burgoon, J. K., Buller, D. B., & Woodall, W. G. (1996). Nonverbal communication: The unspoken dialogue (2nd ed.). New York: McGraw-Hill. Burgoon, M., & Ruffner, M. (1978). Human communication. New York: Holt, Rinehart & Winston. Darwin, C. (1872). The expression of the emotions in man and animals. University of Chicago Press. London: John Murray. Damm, L., Leiss, U., Hableler, U., & Ehrich, J. (2015). Improving care through better communication: Understanding the benefits. The Journal of Pediatrics, 166, 1327–1328. Day, M. E. (1964). Eye movement phenomenon relating to attention, thought, and anxiety. Perceptual and Motor Skills, 19, 443–446. Dimberg, U., & Ohlman, A. (1996). Behold the wrath: Psychophysiological responses in facial stimuli. Motivation and Emotion, 20, 149–182. DeVito, J. A. (2012). Nonverbal communication. Dubuque, IA: Kendall Hunt. Ekman, P. (2014). Darwin’s claim of universals in facial expression not challenged. Retrieved from www.paulekman.com. Ekman, P., & Friesen, W. V. (1969). Repertoire of nonverbal behavior: Categories, origins, usage, and coding. Semiotica, 1, 49–98. Ekman, P., & Friesen, W. V. (1972). Hand movements. Journal of Communication, 22, 353–374. Ekman, P., & Friesen, W. V. (1975). Unmasking the face: A guide to recognizing emotions from facial cues. Englewood Cliffs, NJ: Prentice-Hall. Feldman-Barrett, L. (2014, February 28). What faces can’t tell us. New York Times, Sunday Review, pp. SR 12. Field, T., Woodson, R., Greenberg, R., & Cohen D. (1982). Discrimination and imitation of facial expressions by neonates. Science, 218, 179–181. Flynn, L., & Ricca, J. (2000). For the patient’s sake, communicate! Nursing Management, 31, 49. Hall, E. T. (1959). The silent language. Garden City, NY: Doubleday. Hall, E. T. (1966). The hidden dimension. Garden City, NY: Doubleday. Haskard, K., Williams S., DiMatteo, M., Heritage, J., & Rosenthal, R. (2008). The provider’s voice: Patient satisfaction and content-filtered speech of nurses and physicians in primary medical care. Journal of Nonverbal Behavior, 32, 1–20. Hess, U., & Thibault, P. (2009). Darwin and emotion expression. American Psychologist, 64, 120–128. Jones, S. E. (1994). The right touch: Understanding and using the language of physical contact. Cresskill, NJ: Hampton Press.

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Jones, S. E., & Yarbrough, A. E. (1985). A naturalistic study of the meanings of touch. Communication Monographs, 52, 19–56. Keir, A., & Wilkinson, D. (2013). Communication skills training in paediatrics. Journal of Pediatrics and Child Health, 49, 624–628. Kendon, A. (1967). Some functions of gaze-direction in social interaction. Acta Psychologica, 26, 22–63. Klinzing, D. G. (1972). Listening comprehension of preschool aged children. The Speech Teacher, 21, 86–92. Klinzing, D. R., & Klinzing, D. G. (1977). The hospitalized child. Englewood Cliffs, NJ: Prentice Hall. Klinzing, D. R., & Klinzing, D. G. (1985). Communication for allied health professionals. Dubuque, IA: William C. Brown. Knapp, M. (1980). Essentials of nonverbal communication. New York: Holt, Reinhart & Winston. Knapp, M., & Hall, J. (2013). Nonverbal communication in human interaction (8th ed.). Boston, MA: Wadsworth. Korzybski, A. (1933). Science and sanity: An introduction to non-aristotelian systems and general semantics. Lancaster, PA: Science Press. Levetown, M. (2008). Communication with children and families from everyday interactions to skills in conveying stressful information. Pediatrics, 21, 1441–1460. Linden, D. (2015). Touch: The science of hand, heart, and mind. New York: Viking. McHugo, J., & Smith, C. (1996). The power of faces: A review of John T. Lanzetta’s research on facial expression and emotion. Motivation and Emotion, 20, 85–120. McConnell, E. (2000). Communication systems making a caring connection. Nursing Management, 31, 49–52. McIntosh, D. N. (1996). Facial feedback hypotheses: Evidence, implications, and directions. Motivation and Emotion, 20, 121–147. Mehrabian, A., & Weiner, M. (1967). Decoding of inconsistent communications. Journal of Personality and Social Psychology, 6, 108–111. Montagu, A. (1971). Touching: The human significance of the skin. New York: Columbia University Press. Nichols, R. G., & Stevens, L. A. (1957). Are you listening? New York: McGraw Hill. Remland, M. S. (2000). Nonverbal communication in everyday life. Boston: Houghton Mifflin. Remland, M. S., & Jones, T. S. (1994). The influence of vocal intensity and touch on compliance gaining. The Journal of Social Psychology, 134, 89–97. Rothwell, J. D. (2000). In the company of others: An introduction to communication. Mountain View, CA: Mayfield Publishing. Rowbotham, S., Holler, J., Lloyd, D. & Wearden, A. (2012). How do we communicate about pain? A systematic analysis of the semantic contribution of co-speech gestures in pain-focused conversations. Journal of Nonverbal Behavior, 36, 1–21. Ruch, W. (1989). International handbook of corporate communication. Jefferson, NC: McFarland & Company, Inc.

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Shilling, V., Edwards, V., Rogers, M., & Morris, C. (2012). The experience of disabled children as patients: A structured review and synthesis of qualitative studied reporting the views of children, parents, and professionals. Child: Care, Health, and Development, 38, 778–788. Thompson, R. (2009). The handbook of child life. Springfield, IL: Charles C Thomas. Toledano, E. (2013, February 14). May the best (looking) man win: The unconscious role of attractiveness in employment decisions. Cornell HR Review. Retrieved from http://www.cornellhrreview.org.

Chapter 6 PATIENT- AND FAMILY-CENTERED CARE AND THE IMPLICATIONS FOR CHILD LIFE PRACTICE JANET N ELMS CROSS, P RITI P. DESAI, S HEILA PALM, JACQUELINE L. B ELL, B EVERLEY H. JOHNSON, AND S HARON M. MCLEOD OVERVIEW oping with the stresses of a child’s illness, injury or medical treatment is one of the most daunting challenges a family faces. When positive coping is facilitated through patient- and family-centered care philosophy and practice, the outcome is a collaborative relationship among patients, families and healthcare providers and staff. Fostered by mutual respect and founded on patient and family strengths and priorities, this strong partnership enables every member of the healthcare team, including patients and families, to create and implement a comprehensive and dynamic plan of care. In this chapter, we present an overview of patient- and family-centered care, outlining its definition and history, its benefits, and its practical applications to child life practice. The heart of the chapter includes suggestions in support of the four elements of patient- and family-centered care through descriptive scenarios, performance standards of care, and critical feedback regarding the child life specialist’s collaboration with patients and families. The next section offers tools that child life specialists may use to evaluate their own programs and individual efforts. The chapter concludes with the exploration of an essential aspect of patient- and family-centered care, ensuring cultural competence, including attention to spirituality of patients and families.

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DEFINITION OF PATIENT- AND FAMILY-CENTERED CARE Patient- and family-centered care is an approach to healthcare that is based on mutually beneficial partnerships among patients, families, and healthcare professionals. These partnerships are integral to the care and support of individual children and their families. They extend beyond the caregiving process. Hospitals, healthcare systems, and agencies that have made a genuine commitment to patient- and family-centered care welcome and engage patient and family participation in program planning, implementation and evaluation, as well as in facility design. Families serve not only on patient and family advisory councils but also are represented, along with clinical and leadership staff, on key hospital or institutional committees, councils and boards. Seeking to articulate concepts such as these, the Institute for Patient- and Family-Centered Care brought together families, clinicians, educators, researchers, funders, and other healthcare leaders in 1996 to define the core principles of patient- and family-centered care. Nine principles of family-centered care were originally published in an issue of Advances in Family-Centered Care in the mid-1990s. After receiving feedback from healthcare leaders and families in 1996, the principles were revised to four core concepts by the Institute for Patient- and Family-Centered Care (http://www.ipfcc.org/about /pfcc.html). These four core concepts formed the basis for the Patient- and Family-Centered Care Toolkit published by the American Hospital Association and distributed to the chief executive officer of every hospital in the United States (American Hospital Association, 2004). They are: 1. Dignity and Respect. Healthcare practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care. 2. Information Sharing. Healthcare practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making. 3. Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. 4. Collaboration. Patients, families, healthcare practitioners, and leaders collaborate in policy and program development, implementation, and evaluation; in healthcare facility design; and in professional education, as well as in the delivery of care.

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Patient- and family-centered care is based on the recognition that the family is the constant in an individual’s life, and that it has significant influence over an individual’s health and well-being. Because of that influence, all patients and families are supported and encouraged in their caregiving and decision-making during hospitalization and other healthcare experiences. Families play essential roles in healthcare—whether the patient is a child, an adolescent, or an adult. The word “family” has no standard definition. New Mexico’s Memorial Task Force on Children and Families and the Coalition for Children noted that a family “can be as temporary as a few weeks, or as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support” (Arango, 1990). A patient- and family-centered philosophy of care encourages patients to define their families. Thus, while family members very often include parents, grandparents, siblings, and other blood relatives, they may also include friends, significant others, or anyone who is willing to assume responsibility and reap the rewards that this role entails. The Joint Commission (TJC) expanded its definition of family to include individuals who may not be legally related to the patient, including someone who serves as the patient’s support person (TJC, 2010). Each child and family is unique; each is a culture unto itself. Healthcare professionals who practice patient- and family-centered care tailor their approach to each patient and family. They respect differences, build on and seek to support each family’s strengths, and help families secure the resources they need to complement these strengths. The four core principles of patient- and family-centered care and representative scenarios, presented later in the chapter, will provide helpful insight into this individualized approach. HISTORY OF PATIENT- AND FAMILY-CENTERED CARE The evolution of patient- and family-centered care and the development of the child life profession have many common roots. Both have been strengthened by the recognition of the importance of meeting the developmental and psychosocial needs of children. Both have been influenced by the roles families play in promoting the health and well-being of their children. During the last half of the twentieth century, this awareness had a major role in changing the way healthcare is provided to children and families. Child life professionals were often in the forefront of these changes (see Chapter 1).

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The foundation for a patient- and family-centered approach to the delivery of healthcare for children and families is traced to breakthroughs in medicine and medical technology. Between 1940 and the early 1960s, new medical modalities (e.g., antibiotics, chemotherapy, pediatric surgery) became available for children and adolescents. These new treatments were effective, however, healthcare experiences, particularly hospitalization, were often traumatic for children. Hospitals at that time considered parents and other family members as visitors, and many visitation restrictions were imposed. There were few supportive and expressive play programs in hospitals, and little attention was paid to preparing children and families for procedures. Parents were not encouraged to participate in their child’s care. In the 1950s and early 1960s, research began to emerge about the effects of separating hospitalized children from their families and of depriving them of typical childhood activities. Enlightened healthcare professionals began to realize that play, preparation, and 24-hour access to their children for families would improve clinical and developmental outcomes. In 1965, some of these professionals founded an organization that ultimately came to be known as the Association for the Care of Children’s Health (ACCH). ACCH’s mission was to provide leadership for “humanizing healthcare for children.” While the organization was interdisciplinary from the beginning, it was not until 1978 that parents were invited to join as members. ACCH was the first organization to advocate for the professionalism of child life. In 1987, ACCH articulated eight key elements of family-centered care in a publication entitled Family-Centered Care for Children with Special Healthcare Needs (Shelton, Jeppson, and Johnson, 1987). Since this time numerous organizations and authors have reconfigured the essential components of these principles into more concise statements with the primary articulation from the Institute of Patient-and Family-Centered Care. Key legislation in the United States in the fields of education, patient and family support, and healthcare over the last 40 years has also had an impact on the evolution of patient- and family-centered care. Federal legislation is regularly reviewed and evaluated. • In 1976, Congress passed the Education for All Handicapped Children Act (P.L. 94-142), mandating publicly supported education for all children in the least restrictive environment. It stipulated that children have an individualized educational plan developed by a team that includes the child’s parents. • The afore-cited public law led the way for the 1982 Katie Beckett Home and Community Based Medicaid Waiver enabling those with chronic conditions and disabilities to be cared for in the home rather than the hospital or other care facilities.

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• Early in the 1980s, Congress created the Child and Adolescent Service System Program to improve services for children with serious emotional, behavioral, or mental disorders. Patient- and family-centered care is an essential aspect of this program. • To improve systems of care for young children, Congress passed P.L. 99-457, Education of the Handicapped Act Amendments of 1986. Part H—Early Intervention Programs for Handicapped Infants and Toddlers. This legislation recognized the importance of collaborating with families in maximizing the health and development of these children and coordinating services across agencies. • Congress passed the Individuals with Disabilities Education Act of 1990 (P.L. 101-476); the Developmental Disabilities Assistance; and Bill of Rights Act Amendments of 1990 (P.L. 101-496). With passage of the Mental Health Amendments of 1990 (P.L. 101-63), the Federation for Children’s Mental Health was established as a consumer-led organization to assist in building family-centered systems of care. • Congress passed the Family Preservation and Family Support Act of 1993 (P.L. 103-66) and the Families of Children with Disabilities Act of 1994 (P.L. 103-82). These laws authorized a range of family support services, many of which are offered in the home, that build on family strengths and are planned in collaboration with families. • In 1997 the Children’s Health Insurance Program (CHIP: P.L. 114-10) was enacted to help provide healthcare coverage for children in families unable to afford private insurance and with incomes too high to be covered through Medicaid. Federal funds were available to states covering children up to 200% of the Federal Poverty Level (https: //www.medicaid.gov/chip/index.html). • A significant healthcare initiative passed by Congress in 2010 was the Patient Protection and Affordable Care Act more commonly referred to as the “Affordable Care Act” or ACA (P.L.11-148). The goal of the act was to expand insurance coverage to millions of uninsured individuals through Medicaid reformations and subsidize private insurance for people with lower and middle incomes. Contiguous with these new developments in child life, patient- and family-centered care, education, and family support, was continued progress in medical care. For example, new technologies make it possible to save the lives of premature or low birth weight infants including performing surgeries in utero. Many of these infants, however, were faced with long-term or repeated hospital stays. Seeking a more active role in their child’s care, parents initiated advocacy efforts. They asked for partnerships with healthcare professionals and for support to bring their children home. The resulting par-

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ent/professional partnerships were supported by a growing body of research evidence that documented the negative effects of depriving parents of their normal roles during a child’s illness. Furthermore, although many of these efforts were initially focused on children with special health needs, they soon spread to include all children and families. As the patient- and family-centered movement grew, some of its leaders came to believe that the conceptual framework could be simplified and made more accessible to those unfamiliar with the field. Thus, in 1996, a group of healthcare professionals, researchers, and families brought together through funding by the Nathan Cummings Foundation outlined four core concepts (presented earlier in this chapter) that subsequently became central to the Institute for Patient- and Family-Centered Care’s philosophy and approach to changing practice in hospitals, other healthcare settings, and professional education. In recent years a growing number of professional organizations and agencies have articulated a commitment to patient- and family-centered practice. The American Nurses Association and the Society of Pediatric Nurses issued a policy statement that established family-centered care as the standard for nursing practice of children in 1996 and later published a review of the literature that provided the evidence base for the principles of practice (Lewandowski & Tesler, 2003). The American Academy of Pediatrics integrated patient- and family-centered principles in its national initiatives promoting a medical home for children with special needs and published guidelines on family-centered pediatric home care (Sia et al., 2002; McConnell & Imaizumi, 2001). In 2000, the National Association of Emergency Medical Technicians and the Health Resources and Services Administration of the U.S. Department of Health and Human Services issued a policy statement, “FamilyCentered Pre-Hospital Care: Partnering with Families to Improve Care” (National Association of Emergency Medical Technicians, 2000). Shaping the direction for the first decade of the twenty-first century, were Healthy People 2000 and Healthy People 2010, published by the U.S. Department of Health and Human Services, making patient- and family-centered care the standard for the care of children with special healthcare needs (U.S. Department of Health and Human Services Maternal and Child Health Bureau). A joint statement issued in 2009 by the American Academy of Pediatrics (AAP) Committee on Pediatric Emergency Medicine, the American College of Emergency Physicians, Pediatric Committee, and the Emergency Nurses Association Pediatric Committee, entitled the “Guidelines for the Care of Children in the Emergency Department,” identifies patientand family-centered care as a key component of care delivery. Family col-

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laboration and participation should be integrated in education, medication safety, discharge planning, and bereavement services, as well as presence during resuscitation. AAP created a policy statement in 2012, “Patient- and Family-Centered Care and the Pediatrician’s Role,” which articulates the PFCC history, patient-family outcomes, staff satisfaction, cost effectiveness and benefits for pediatric practice. As this history reveals, progress has resulted from a unique synergy among families, healthcare professionals, researchers and policy makers. This progress and advancement has also had a global impact with many international pediatric health organizations now including patient- and family-centered care in their mission and values (see Chapter 18). BENEFITS OF PATIENT- AND FAMILY-CENTERED CARE The benefits of patient- and family-centered care may be analyzed from various perspectives—that of patients, their families, healthcare professionals, the institutions of which they are a part and the healthcare system as a whole. In some cases, the benefits are expressed informally—in the responses of patients, families, healthcare providers and administrators who have seen patient- and family-centered care in action and are convinced of its merits. In an increasing number of instances, however, the benefits of patient- and family-centered care are evidenced based and have been documented in the literature. The Institute of Medicine (IOM) released a sentinel report in 2001, Crossing the Quality Chasm, emphasizing the importance of patients and families being involved in their healthcare decisions, of healthcare becoming more transparent with improved access to information, and of care that is focused on individual needs. As stated in this document, “Such care respects the individuality, values, ethnicity, social endowments, and information needs of each patient. The primary design idea is to put each patient and family in control of his or her own care. The aim is customization of care, according to individual needs, desires, and circumstances. It also implies transparency, with a high level of accountability of the care system to the patient and family” (pp. 84–85). Several of the authors of Crossing the Quality Chasm subsequently published an article, “Transforming Healthcare: A Safety Imperative,” in which they recommended that “organizations publicly and consistently affirm the centrality of patient- and family-centered care” (Leape et al., 2009, p. 426). In 2012, the IOM published Best Care at Lower Cost: The Path to Continuously Learning Health Care in America, in which the recommendation was made that

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“patients and families should be given the opportunity to be fully engaged participants at all levels, including individual care decisions, health system learning and improvement activities, and community-based interventions to promote health” (p. 214). Five years later, the IOM, now called the National Academy of Medicine, built on the previous recommendations through a discussion paper in their 2017 publication, Vital Directions for Health and Health Care, stating that “reforms need to ensure that patients and families are fully informed and able to participate as partners in determining outcomes and values for their own health and healthcare” (p. 11). In 2015, Becker’s Hospital Review released the following list of “Five ways your hospital can benefit from patient-centered care”: • Attain better financial performance: Improving processes for care coordination, reducing waste both in materials and labor resources, and effective patient and family education are all results of a well-integrated patient- and family-centered philosophy of care which can improve hospital performance and business outcomes. • Improve market share: Consumers are no longer satisfied with the status quo for their healthcare. With much access to hospital performance and service excellence information, health systems that place patients and families in the center of care, gain competitive advantage over those which stick to using traditional methods. • Increase employee satisfaction: By enhancing patient/family-caretaker interactions, efficient hospital systems decrease employee burnout, improve staff relationships, and enhance patient/family-caretaker interactions • Advance hospital’s ranking: Tactics like implementing communication strategies based on the patient-centered model of care offer the opportunity for hospitals to improve CAHPS (Consumer Assessment of Healthcare Providers and Systems) scores, leading to overall higher rankings • Improve patient health outcomes: The best reason for implementing a patient- and family-centered model is that it is the right thing to do. Experience, expertise and scientific knowledge all support this model because it has consistently demonstrated improved patient health outcomes. The following sections summarize some of the key research documenting the impact of patient- and family-centered care from various perspectives, including supporting quotes from patients, family members, healthcare professionals and administrators.

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From the Patients’ and Families’ Perspectives “They really listened to me, even though I’m only twelve. I told them that, ‘that medicine always gives me hives,’ and they listened.” “They talked to me, not just my parents. It helped that the resident drew pictures and did not just use words.” Parent: “Sometimes I see things that you don’t see.” “I asked them to please wait to ask me the questions when my parents returned. I was nervous and embarrassed. Even at 17, being in the hospital is still scary.” “It assures me I’m included—a part of the process for helping my child get through this experience.” “My opinion, my assessments are as valued as the more educated doctor. I know my child best. My input helps everyone treat my child most appropriately.” For many patient- and family-centered practitioners, input such as this— from patients and families alike—attests to the importance of patient- and family-centered care. For example, when both parents and children are prepared for surgery together and at least one parent is encouraged and supported in being present for the induction of anesthesia, the parent and child report less anxiety and assess the overall experience much more satisfactorily (Kain, Mayes, Caldwell-Andrews, Saadat, McClain & Wang, 2006). Patient- and family-centered care recognizes the family as the constant in a child’s life and seeks to empower patient and family members at every opportunity. It fosters collaboration with families in the care of individual children and in planning and program development for hospitals and other healthcare settings. At its best, this collaboration is evident in mutually respectful parent and professional partnerships. Patient and family participation in care can improve healthcare outcomes. Kuo, Houtrow, Arango, Kuhlthau, Simmons, and Neff (2012) state that “family-centered care is commonly used to describe optimal healthcare as experienced by families. The term is frequently accompanied by terms such as ‘partnership,’ ’collaboration,’ and families as ’experts’ to describe the process of care delivery” (p. 298). True patient- and family-centered care includes information sharing, partnering, respect, and negotiation leading to a successful outcome in clinical scenarios. Patient- and family-centered prac-

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tices bring added value to good clinical practice. Participatory involvement in the healthcare experience has been shown to have a powerful effect on empowerment outcomes. These outcomes include belief in one’s self and one’s ability to have control over important life events and situations. Kuo and colleagues, (2012) suggest that family presence alone is insufficient. In a family-centered model of care, it is essential that family members are encouraged and supported to participate in discussions and decision-making during rounds. Nurses, medical residents, attending staff and families who participate in family-centered rounds identify increased understanding of treatments, opportunities for information sharing, improved understanding of the family perspective, and enhanced feelings of mutual respect. Cypress (2012) notes that when parents are able to have direct communication with providers, the result is increased parent and staff satisfaction, and nurses report decreased time in mediating family communication with the medical team. Additionally, a common misconception among clinicians is that family-centered rounds will prolong the overall work day. At Cincinnati Children’s Hospital, these rounds were determined to take about 20% more time than traditional rounds. All participants believed that this time was utilized more efficiently, resulting in time saved later in the day (Mittal, 2014). Similarly, progressive nursing teams conduct bedside shift handovers in the patient’s room including the family in their assessments and conversations. This practice is a potential solution to many of the communication errors associated with shiftto-shift handovers (Mardis et al., 2016). Despite parental desires for clear, complete, and honest information, several studies found that clinician communication still entails the use of medical terminology, euphemisms, and complex speech that is difficult for parents to understand. In attempts to balance hope with realism in the information they give to families, some clinicians withhold information and avoid being transparent. However, withholding information can lead to parental distress and can contribute to a sense of powerlessness and fear, insecurity and anxiety, a stressful search for information and an erosion of trust in clinicians (Richards, Starks, O’Connor & Doorenbos, 2017). Patient, family and professional partnerships can have an impact in all healthcare encounters, including those that are particularly traumatic—for example, an emergency room visit or resuscitation. In the past, families were separated from their children during stressful events. For many parents, the loss of their parenting role is more traumatic than their child’s illness. However, emergency department cultures are changing from identifying families as “visitors” to now inviting parents to be active participants and welcomed supporters in exam rooms and procedures. Family presence during resuscitation is often pre-

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ferred by parents, is reported not to interrupt care, and is seen by parents as their right (Mangurten et al., 2006). A more recent review of the research by McAlvin and Carew-Lyons (2014) on family presence during resuscitation and invasive procedures suggests that such presence enhances parent coping and satisfaction, although the authors recommended that further research on the topic be conducted. Emergency and critical care areas with highest acceptance and inclusion of parental presence during resuscitation are those with defined protocols (Meert, Clark & Eggly, 2013). The Emergency Nurses Association has developed an assessment tool for guiding patient- and family-centered care in this often-critical care environment, as well as a position statement on family presence, recommending that care teams ensure that patients and families are key decision makers regarding the patient’s medical care (Dudley, Ackerman, Brown, & Snow, 2015). Intensive care providers are also recognizing the contributions of families during ICU experiences by facilitating their active presence, advocacy, patient encouragement, and voluntary caregiving. The benefits of family involvement, in other words, can accrue even when a child’s medical outcome is not optimal. For example, Caeymaex et al. (2012) examined the responses of parents involved in a shared decision-making process of removing their child from life support. They reported that “the perception of a shared decision is associated in the long term with lower grief scores than the perception of other types of decision making” (p. F-26). Another important element of patient- and family-centered care is enhancing family support, particularly the access to peer support and parentto-parent support. Several qualitative studies strongly suggest that parents perceive benefit from peer support programs, an effect seen across different types of support and conditions. This matching of experienced parents with parents of children with newly diagnosed conditions increases parents’ confidence and problem-solving capacity. Parents often see this support as unique and not available from any other source (Shilling, Morris, Thompson-Coon, Ukoumunne, Rogers & Logan, 2013).

From Healthcare Providers’ Perspective With the Welcoming Policy (formerly the Visitor Policy), the staff feels respected and empowered. In caring for patients and families, they are not bound now by restrictions, regulations, and rules that were in place before. —A Nurse Leader’s Experience (http://www.ipfcc.org/bestpractices/Better-Together-Facts-and-Figures.pdf)

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A patient- and family-centered approach has a positive impact on providers as well as patients and family members. For example, after reexamining and changing a policy that had not allowed parents to be with their children in the recovery room, the Children’s Hospital of Philadelphia decided to encourage parent presence during this time. An evaluation of the new program demonstrated that reuniting children with their parents provides reassurance and comfort to both the child and parent. They also demonstrated that children cried significantly less, were less restless, and were more comfortable during a parental visit. They found that parent presence had a calming and anxiety-reducing effect on the patient while concurrently assisting staff in the assessment and management of pain (Kamerling, Lawler, Lynch, & Schwartz, 2008) Another study showed that when emotional support and patient- and family-centered care are cornerstones of the culture of a pediatric emergency room, the staff “have more positive attitudes about the impact of ER work than that reported by personnel working in ER cultures that do not emphasize emotional support” (Hemmelgarn, Glisson, & Dukes, 2001, p. 104). This positive attitude may be attributed to the assumption that when staff members provide emotional support to families, they also extend it to each other. Moreover, the intrinsic reward received through positive feedback from families, coworkers, and supervisors may also lead to more positive attitudes. This emotional support may, in turn, lead to improved job performance, less staff turnover due to greater job satisfaction, and the reduction in cost of care. For healthcare providers and families, collaboration equals a “win-win” proposition.

From the Institution’s Perspective Gone are the days when patients are patients and their families are just families—at least in the children’s hospital setting. “They’re not guests or visitors anymore—they’re partners,” says Pat Givens, D.H.A., Ed.M., RN, NEA-BC, senior vice president and chief nursing officer at Children’s Hospital Colorado. (https://www.childrenshospitals.org/Newsroom/Childrens-Hospitals -Today/Summer-2017/Articles/4-Ways-Childrens-Hospitals-are Leading-Adult-Hospitals)

Executives of healthcare institutions and third-party payers are continually looking for best practices that provide the highest-quality outcomes at the lowest cost. Fewer visits to clinics, fewer calls to practitioners, fewer visits to the emergency department, shorter hospital stays, and less frequent readmissions mean more positive healthcare experiences for children and

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families. It also equates to fewer dollars and resources spent by the institutions that serve those families. The evidence is mounting that patient- and family-centered approaches to care can help reduce costs. During the early 1990s, the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) used an approach that combined developmental and patient- and family-centered care. Not only did this program save between $90,000 and $129,000 per infant served, it also decreased the number of days the baby received ventilator support and oxygen and promoted more rapid weight gain. In addition, babies nipple fed more quickly and were discharged home at an earlier date (Als, Lawhon, Duffy, McAnulty, GivesGrossman, & Blickman, 1994). Kuo, Mac Bird and Tilford (2011) demonstrated that a family-centered system of healthcare is associated with less family burden and more efficient healthcare use by the child with special healthcare needs. With patient- and family-centered models of care, families reported fewer unmet health needs, lower financial burden, fewer hours devoted to care coordination and fewer emergency room visits. In 2012, Children’s Mercy Kansas City formalized a Patient- and Family-Centered Care Policy to ensure that the patient and family perspective is represented on hospital committees, workgroups, and projects. Patient and family advisors include members of formal advisory boards; in addition, other parents who have unique experiences were assigned to specific, appropriate committees and projects. Family-centered care coordinators and parents of children with special health needs recruit, train, and manage these advisors. They also provide training to staff on how to effectively integrate patient and family advisors into committees and projects. The family-centered coordinators increased the utilization of patient and family advisors by over 400% since the program’s inception (http: //www.ipfcc.org/profiles/childrens-mercy.html). Other institutions have documented the benefits of innovative patientand family-centered programming. For example, Children’s Hospital Colorado in Denver partners with family advisors in root cause analyses (RCA), a method of problem solving used for identifying the root causes of faults or problems. A trained and competent family advisor is assigned to the quality team performing RCAs to provide the family perspective as the team works to improve safety and prevent harm (Hyman, Jacqemard & Hopfgarten, 2016). At New Jersey’s Children’s Specialized Hospital, the largest pediatric rehabilitation health system in the United States, the director of family-centered care presented a strategic plan based on patient- and familycentered principles to the senior leadership team for approval in 2013. Once approved, this plan became a key driver of the corporate-wide strategic planning process. Corporate team members were able to view the strategic deci-

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sion-making process through a different lens. With actively participating family faculty and advisory members, they have been able to implement action plans through the initiatives with families and staff working side by side over many years (http://www.ipfcc.org/profiles/childrens-specialized .html).

From the Healthcare Systems’ Perspective Patient- and family-centered care requires a systemic approach—both at the level of the individual institution and at the level of the nation’s overall health infrastructure. This need is being increasingly recognized in reports issued by private and government organizations. The case for patient-centered care can also be made on instrumental grounds—it yields demonstrably better care as measured by a number of important indicators. For instance, patient-centered care has been shown to improve disease-related outcomes and quality of life. Research over the past twenty-five years has demonstrated that achieving shared understanding—and enabling patients to participate actively in all aspects of their care, such as choices about treatment and selfmanagement—results in better adherence to medications and improved chronic disease control, without incurring higher costs (Dentzer, 2013). Patient- and family-centered care also improves patient’s well-being and is critical to addressing racial, ethnic and socioeconomic disparities in care and outcomes. With the implementation of the multimillion dollar initiative of the federal Agency for Healthcare Research and Quality (AHRQ) to place more emphasis on the patient’s experience of care and on effective partnerships among clinicians, patients, and families, there is recognition that having patients and families informed and actively engaged in healthcare leads to better health, quality, and safety outcomes. AHRQ has developed an extensive toolkit to support health systems in establishing higher levels of patient and family engagement and a patient- and family-centered philosophy of care (https://www.ahrq.gov/professionals/quality-patient-safety/patient-family -engagement/index.html). Having care processes tailored to families’ priorities, preferences, and values, and having patient needs anticipated and addressed, lead to better health outcomes, ensure quality, and promote safety (Epstein, Fiscella, Lesser & Stange, 2010). The Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization in Washington, DC, was authorized by Congress in 2010 to reduce the confusion in the wide range of complex and often-perplexing choices in healthcare. PCROI’s mandate is “to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-

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informed health decisions” (https://www.pcori.org/about-us/our-story). PCORI includes patients and other healthcare stakeholders throughout the research process, so the resulting evidence will address their most important questions and concerns and promote the dissemination of strategies to improve patient- and family-centered care. THE ROLE OF THE CHILD LIFE SPECIALIST Child life professionals are ideally positioned to support patients and families in their caregiving roles and to build on parent knowledge and skills about child development. They prepare patients and families and support their presence in critical care, anesthesia induction, painful procedures and other new and anxiety-provoking experiences. In addition, child life professionals have opportunities to foster independence and supportive relationships among children and adolescents and their families. They assist them in coping with hospitalization, illness, trauma or disability. While they support the normal developmental tasks of independence, continuation in schooling, and the development of individuality, they also support families and their relationship with their children and with the healthcare team. Fostering collaborative dialogue with families, promoting communication throughout the experience, and continuously acknowledging the family as an integral part of the healthcare team are strong foundations in quality child life programs. Child life provides a number of interventions that are fundamental to the well-being of children and their families, including (but not limited to) the following: • Developmental assessments and therapeutic play opportunities; • Psychological preparation and support for procedures, tests, surgery and new experiences; • New diagnosis education; • Strategies and techniques for coping; • Sibling support and education; • Normalization opportunities; • Activities for self-expression and creative arts and • Legacy building. When providing any of these services, it is essential that child life specialists communicate and collaborate with the child and family in order to create a care plan that best meets the child and family’s identified strengths, needs and priorities, such as utilizing nonpharmacological pain control strategies. The child life specialist as a member of the multi-disciplinary team

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works together with other caregivers and the family to achieve optimal outcomes. As an impetus for change and improvement in the healthcare setting, the child life specialist has the opportunity to advocate for patient and family partnership including development of advisory councils and support groups for patients, parents, and siblings. The role of the child life specialist may also involve encouraging colleagues to reconsider and amend their beliefs about patient and family empowerment, to progress toward a mentality of “encouraging parent participation” rather than “allowing” parents to participate, and to trust that the family is a valuable informational resource and collaborator in the development of effective, responsive care plans. BEST SERVICE/BEST PRACTICE: THE FOUR ELEMENTS OF PATIENT- AND FAMILY-CENTERED CARE IN ACTION Each day brings opportunities for the child life specialist to have a positive impact on children’s healthcare outcomes. The four elements of patientand family-centered care, linked to performance standards for child life specialists, offer an avenue for moving from theory to collaboration, from philosophy to intervention—a genuine effort to develop indicators of exemplary practice. Some best service/best practice examples are more fully illustrated through descriptive scenarios that provide important cues to building positive partnerships with children and families.

Element 1. Dignity and Respect Performance Standards • Be aware of personal values, beliefs, and biases when interacting with families and nurture mutual respect for skills, knowledge, and care. • Acknowledge and honor diverse family values, customs, and experiences. • Identify the family’s preferred support systems and spiritual resources, and engage appropriate interpreters, cultural and spiritual consultants, and community support whenever possible. • Model, teach, and reinforce culturally competent care. • Maintain and respect professional boundaries. • Avoid Assumptions. • Respect and facilitate families’ usual forms of coping and offer new strategies.

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Descriptive Scenario Fatimah Al-Humeid is a five-month-old female infant admitted to the hospital with seizure disorder and Down syndrome. Her parents are from Oman. Mr. Al-Humeid speaks some English, while his wife speaks only Arabic. Fatimah’s twelve-year-old brother, Ahmed, is bilingual in Arabic and English. Shaneka, a child life specialist, enters Fatimah’s room and says, “Salaam.” They are surprised, smile and return her greeting. Shaneka greets the family verbally, respectful not to extend a handshake. She engages both parents visually, then addresses Mr. Al-Humeid with a brief introduction about her role as a child life specialist and requests that he convey the information to his wife. As Shaneka inquires about Fatimah’s developmental milestones, Mr. Al-Humeid appears confused and requests that Ahmed interpret for him. Shaneka politely interjects that she will return with an Arabic interpreter. With the assistance of the interpreter, Shaneka further reviews her role and discusses a variety of issues with the family. She receives permission to educate Ahmed about his sister’s Down syndrome, diagnosis and treatment, and engages the parents in opportunities to be a part of that education. Mrs. Al-Humeid, now more verbal, expresses her concern that Fatimah is not responding to sounds in her environment or playing as her brother did at the same age. Mr. Al-Humeid expresses surprise, stating he was not aware of this concern. He also confided that “the doctors tell me she has this Down syndrome, but I do not believe it. My God will heal my daughter.” The parents then shared the educational materials they had received about Down Syndrome, with text in both Arabic and English. They agreed to read the information and incorporate the recommendations into their care of Fatimah. Shaneka also reviewed some of the benefits of early intervention with the parents. As the parents spoke with Shaneka and the interpreter, Fatimah’s neurologist, Dr. Parks, entered the room. He engaged Ahmed in a conversation, describing a diagnostic test he had ordered for Fatimah. As Ahmed offers to interpret this information for his parents, Shaneka stepped to Dr. Parks’ side to let him know that the Arabic interpreter was available to translate pertinent information and solicit questions. Respecting that a more appropriate option was available to educate the family and obtain the parental consent, Dr. Parks took this opportunity to inquire about other needs or information the family might have. With their medical questions answered, Dr. Parks left. Shaneka inquired about cultural or religious practices specific to their family and opportunities to support them during their stay. Mr. Al-Humeid requested a contact in his

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religious community, a priest or a mosque in the vicinity. Shaneka agreed to follow-up with chaplaincy services to provide a contact for the family. Later that afternoon, Shaneka charted her assessment and plan, outlining pertinent family perceptions, concerns, and requests for information and support. Those same points were reiterated at interdisciplinary rounds the next morning, with appropriate referrals made for hearing and speech evaluations.

Feedback Shaneka was respectful of the family’s dynamics, gender and nonverbal spatial boundaries. She learned an Arabic greeting, thus conveying her care and interest in learning about other cultures. She inquired about the parents’ perceptions and concerns about their daughter’s developmental and health issues. Her awareness of gender roles in parenting helped her appreciate Mr. Al-Humeid’s knowledge base in regard to Fatimah’s development. Making no gender assumptions however, she guided her questions and discussion to be inclusive of both parents, though her initial comments were directed to Mr. Al-Humeid. She appropriately engaged the Arabic interpreter to assist with her discussion and advocated that her colleague, Dr. Parks, also use this resource rather than the sibling. In so doing, she ensured that parents received accurate information, prevented potential psychosocial harm to Ahmed, and possible risk and liability issues for the hospital. She incorporated sibling education and support into the plan of care. Spiritual and religious expression were fostered and respected. Facilitation of ongoing support was provided through a connection to community resources. Communication of key issues and follow-up needs were documented in the patient record and shared with interdisciplinary team members in a timely manner to assist each in creating a culturally sensitive plan of care.

Element 2. Information Sharing Performance Standards • Partner daily in the delivery of service, providing complete and unbiased information and jointly creating the plan of care and evaluating intervention outcomes with patients and families. • Encourage parent and child to relay information, observations and concerns. • Periodically assess the patient and family’s understanding of the child’s current condition and treatment plan.

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• Determine how patients and families wish to receive information (i.e. verbally, with complementary readings/diagrams, in a one-on-one session, in a private space away from other patients and families). • Provide information using language that conveys “compassion and respect, which fosters the parent’s confidence and caregiving abilities.” • Bring child/family questions and concerns “full circle”—finding answers or acknowledging that the issue is still being addressed and that their team will collaborate with the child and family in finding answers and will share information with them.

Descriptive Scenario “Good morning, Mr. Finn. How was your night with Sammy?” child life specialist, Mary greets eight-year-old Sammy’s father as he is folding up his bedside sleep chair. Still sleeping soundly, Sammy is well known on this unit, as his diagnosis of cystic fibrosis has required numerous admissions. “Tell me what’s in store for you and your family today?” Mary whispers. Although Mary had received morning report from Sammy’s primary nurse, inquiring what Mr. Finn’s perception of the day’s events provides Mary a more comprehensive picture. “Sam slept on and off. He really needs to sleep a little longer this morning or he will be a bear the rest of the day. Sarah, (mom) will be here soon with Emily and Dan (siblings). Today we are switching off, so I will have Em and Dan. Sarah will go with Sam for his pulmonary function test.” “How can I be of help this morning? Do you need to get off the unit for breakfast or did you receive a parent tray?” “Well, actually, I did eat, but wanted to check out the Family Resource Center. Can you peek in on Sam and ask the nurse to call me if he wakes up?” “Sure. Just before you go, if I remember correctly, Sam’s PFT’s went pretty well last admission, right? Are you expecting the same this time?” “Sarah and I reviewed everything with him again last night. He remembers the last test and is anxious that he may not perform well. It would help if the respiratory therapist could walk him through each step of the test as it is happening.” “OK, I will alert the respiratory therapist. Sue is here today. She is excellent and will take good care of Sam. Is there anything else you think I might be able to assist with? We could try the medical play again? And

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it’s cooking day in the playroom. He usually likes getting in on the fun. Can Emily and Dan participate?” “Thanks for the invite, but I need to run them to some appointments today. They will be back this evening and can play with Sam then. I’ll remind Sarah that it’s cooking day, so she can bring Sam down before his PFT’s. He does love the medical play with you. The kit you sent home turned our living room into Finn’s hospital.” “It’s a plan. I’ll alert Sam’s nurse that you would like Sam to sleep a bit longer and you are going to the Family Resource Center. I will check in on Sam a little later.” Both exit the room, closing the door quietly so as not to waken Sam. Mary then alerted the nurse of Mr. Finn’s request and documented the interaction in the medical record. She also put in a call to the respiratory therapist, Sue, to pass along Sam’s anxiety and Mr. Finn’s assessment of what Sam needs to lessen his distress about successfully completing the test.

Feedback Mary solicited Mr. Finn’s assessment of “how it was going,” focused on the family’s agenda for the day and their priorities for support and made no assumption that past experience would insure present coping with Sam’s test. She offered Mr. Finn the opportunity to share his assessment of what Sam would need as support for the upcoming test and closed the communication loop by sharing information to ensure positive experiences with Sam’s nurse and respiratory therapist. Mary also provided a variety of child life service choices.

Element 3. Participation Performance Standards • Ask the parents/children daily to identify their priorities for child life/ other support, and their assessment of their plan of care and need for support, as these priorities may change over the course of the healthcare experience. • Assess daily how they want to be involved in their child’s care—preparation, accompaniment for procedures, play outlets, and how each may be facilitated. • Practice “strengths” rather than “deficits” assessments. • Proactively support siblings with parents to review reactions to the healthcare experience and collaborate in creating supportive interventions.

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• Assist families in anticipating new educational opportunities and supportive interventions when the child’s previous mental or developmental status has been altered.

Descriptive Scenario During morning report, Nurse Glenna reports to child life specialist, Zoë, “Tom, a twelve-year-old, was readmitted last night for the first time in a year. Remember his last visit—days and days in the PICU in status epilepticus? When he came out here to the unit, they had another three weeks before discharge. It was a tough time for them. His parents have sought alternative approaches in the interim, including therapeutic touch, herbal remedies, and aquatic therapy. Tom’s mother, Tammy, was anxious last night when they arrived. She was concerned we might find her requests unmanageable. This admission is for dehydration following a bout with the flu. The whole family had it, so mom is really fatigued.” Zoë offers, “How can I help? Child life teamed well with the family during the last admission. His sister, Lauren, came often for play sessions. Tom’s primary nurse and I did a school re-entry program with the family after Tom’s discharge.” Nurse Glenna continues, “Mrs. Stauffer’s primary wish is that Tom lose no ground developmentally while here. They have constructed a supportive schedule for him at home, which should be adaptable here, and she has some great recommendations for ‘creating a home-awayfrom home’ also. A change of routine and environment has her concerned. Let’s see how we can help this transition be as seamless as possible. There are no tests scheduled until this afternoon. He is getting I.V. meds. Mr. Stauffer, Sid, is away on business for a week. Lauren is with her grandmother at home, also a little under the weather.” “Thanks for the report. I’ll see them now,” states Zoë as she leaves the nurses’ station. As Zoë knocks on the Stauffers’ door, she hears soothing music. Welcomed in, Zoë scans the room quickly. What is this room? She had played with a child here just yesterday and now it is totally transformed! The lights are dimmed, CD’s are lined up next to a boom box, family pictures are taped to the bed rails, and Tom is positioned comfortably with colorful, soft pillows. Zoë can also see that he is resting on flannel sheets, which have a fresh, spring-like smell. Tom has grown since she last saw him, somewhat more alert, still nonverbal, and displays his characteristic arm and hand gestures.

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After an exchange of greetings, Zoë inquires how child life can help with the family’s transition back into the hospital. Tammy is eager to review Tom’s daily schedule, specific cues, and soothing techniques. She requests that these ideas be posted for caregivers at the bedside and incorporated into the plan of care in the electronic medical record. Although she has brought several of Tom’s favorite toys and CD’s, she wonders if Zoë might bring some texture squares and switch toys. Tammy also shares what she knows about the day’s schedule. “Tom will be having therapeutic touch at 11:00. His resident is coming back to observe since he has not seen it done before. Tom’s test is this afternoon at 3:00. Could we talk about how we might make that go smoothly also?” Mrs. Stauffer and Zoë spend another fifteen minutes reviewing preferences and other opportunities for support during this hospital stay. Zoë concludes by saying she will relay this information to the rest of the healthcare team and follow-up later with Mrs. Stauffer when she brings the texture and touch toys back.

Feedback An initial, thorough review of needs and preferences works to ensure the development of a collaborative plan, which builds on the family’s expertise and priorities for support. This proactive engagement honors several of the core concepts of patient- and family-centered care of dignity and respect, respectful two-way communication, and building on the family’s strengths, thus enhancing their control and independence. It also demonstrates the child life specialist role in facilitating a high level of participation with Mrs. Stuffer to ensure smooth transition to the hospital and maintenance of Tom’s routines.

Element 4. Collaboration Performance Standards • Proactively seek opportunities to engage patients and families in planning and evaluating programs, services, and the environment to best meet their needs. • Reinforce family inquisitiveness regarding diagnosis and treatment through reference to in-house, local, regional and on-line resources, therefore empowering them through education and support. • Solicit family recommendations for improvements through verbal exchanges, documentation in the medical record, suggestion boxes, focus groups, advisory councils, and patient satisfaction surveys.

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• Create a variety of ways for children, youth, and families from diverse backgrounds and with diverse healthcare experiences to participate in planning, implementing, and evaluating systems of care. • Strive to create collaborative relationships with all patients and families, being flexible and tailoring practices to each individual patient and family’s values, beliefs, priorities, and preferences.

Descriptive Scenario Child life specialist, Joe, stops into see parent consultant, Beth, on his way to morning report. “All set for today’s focus group, Beth? Can we review the list of families I would like to invite to participate?” “Thanks, Joe. Your assistance in helping to identify families capable and comfortable with participating in today’s focus group has been so valuable. As we gather information and feedback for our new patient and family portal, it is so important to understand how patients and families with diverse backgrounds might access the portal to help us know how to successfully engage them in this mode of communication and collaborate with them in their healthcare. The list looks good. Let me know if you need help with invitations. Oh, and thanks so much for working with Volunteer Services to make sure each of the patients is engaged with a volunteer while their family is away from the room for this hour”. Joe replies, “This will also be a great opportunity for us to recruit for our Family Advisory Council. Let’s huddle after the group and talk more.”

Feedback Joe is able to successfully collaborate with the parent consultant, identifying a diverse group of families to participate in a very important focus group to solicit input about the design of a patient portal. While Joe is not ultimately responsible for this task, his knowledge of patients and families, and their developmental journey in their hospital stay, helps ensure the selection of families who are emotionally and psychologically able to positively participate, and will offer diverse perspectives for the focus group. ASSESSING CHILD LIFE PROGRAMS FOR CONSISTENCY WITH PATIENT- AND FAMILY-CENTERED PRINCIPLES Each healthcare institution following the standards recommended by The Joint Commission (TJC) is responsible for ensuring that its policies,

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practice standards, job descriptions and performance appraisals include patient- and family-centered language (TJC, 2010). In addition to these important standards, key hospital leaders, in collaboration with advisory councils, may make use of self-assessment tools to evaluate their efforts to achieve patient- and family-centered programming. These instruments focus attention on areas such as: the philosophy of care, information and decisionmaking practices, documentation, environment and design. Often an eyeopening exercise, completion of an inventory is only the first step. Building a plan of action to support areas where improvement is needed is a rewarding and gratifying experience for the “agents of change.” The Association of Child Life Professionals offer a Program Review and Consultation service to assist in the review and evaluation of child life programs, which includes a review and assessment of the child life department and hospital’s integration of a patient- and family-centered philosophy of care. In addition to participating in program assessments, each child life professional should assess his or her own personal interactions with patients and families on a daily basis to ensure that they are consistent with the principles of patient- and family-centered care. This review may be done in a variety of ways. The child and family may provide an assessment of their experience, either directly to the specialist or indirectly through a nurse, physician, guest relations representative or parent advocate. The family may respond to unitbased or institutional phone or written surveys, which may include questions evaluating child life service. Additionally, advisory councils’ assessments may identify key opportunities for improving child life programming. CHILD LIFE PROGRAMMING: PROVIDING CULTURALLY COMPETENT CARE The chapter thus far has provided an overview of the practice of patientand family-centered care, but a review of how diversity and spirituality impact our collaboration with families requires a closer look. The North American society is undergoing dramatic demographic changes. The U.S. population is projected to become increasingly diverse with more than half of the population belonging to a minority group by 2044 and one out of five individuals born in a foreign country (Colby & Ortman, 2015). This population trend is the result of two notable developments: (1) current immigration patterns and (2) differential birth rates between white, racial and ethnic minority populations. Immigrant populations are those defined as documented and undocumented immigrants and refugees. European immigrants arriving early in the twentieth century were oriented to assimilate into the

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American culture. More recent immigrants are primarily from Asian, Latino, and other racial/ethnic groups that are more visibly different from white Americans. They may not readily assimilate with the majority culture and are likely to have a greater tendency to hold on to customs and practices of their countries of origin. In the 1990 census data, linguistically isolated households were identified for the first time. In these homes, where no one over 14 years of age speaks English, 30 percent were Asian households and 23 percent were Hispanic households. Additionally, 28 percent of all immigrant households with school-aged children were identified as linguistically isolated (The Center for the Study of Social Policy, the Population Reference Bureau, 1992). More recently, in 2014 and 2015, 21 percent of all immigrant households were identified as linguistically isolated (National KIDS COUNT, 2017). These statistics hold significant implications for all professionals who provide care to children both inside and outside healthcare systems. Language and cultural barriers present profound challenges in providing culturally competent care. For example, in an integrative literature review of Latino caregivers coping with their children’s chronic health conditions, Desai, Torres-Rivera and Backes (2016) found that Latino caregivers frequently used religion/spirituality, alternate healing practices, family support, and receiving education about the child’s illness as coping strategies. However, these caregivers also cited coping challenges regarding language, cultural dissimilarities, receiving inadequate information about the child’s healthcare, differences in health beliefs, and feeling disrespected by healthcare providers. Addressing these barriers is imperative to improving family-centered care and enhancing coping of Latino caregivers. Culturally competent care is influenced by standards upheld by several leading child health organizations. In 2010, the Joint Commission published Advancing Effective Communication, Cultural Competence, and Patient- and FamilyCentered Care: A Roadmap for Hospitals. They defined cultural competence as: The ability of healthcare providers and healthcare organizations to understand and respond effectively to the cultural and language needs brought by the patient to the healthcare encounter. Cultural competence requires organizations and their personnel to do the following: (1) value diversity; (2) assess themselves; (3) manage the dynamics of differences; (4) acquire and institutionalize cultural knowledge; and (5) adapt to diversity and the cultural contexts of individuals and communities served. (p. 1)

The document continues on to highlight separate suggestions in the form of checklists to improve effective communication, cultural competence, and patient- and family-centered care across each care continuum, which in-

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cludes areas of admission, assessment, treatment, end-of-life care, discharge and transfer, and organization readiness In relation to the application of cultural competence within the child life profession, the Association of Child Life Professionals (2015) incorporated cultural competence in their core values statement which includes accountability, collaboration, honesty, influence, relevance and vision. As child life professionals work among teams of healthcare professionals, they are responsible for maintaining professional standards through their interactions, fostering opportunities for respectful engagement, and encouraging inclusion of diversity among individuals

Incorporating Cultural Competence in Child Life Practice In the following section, we briefly address how child life specialists can consider and address issues of diversity in developing and planning child life services. Please note that a more in-depth discussion of a critical perspective based in theoretical, empirical, and applied literature regarding teaching about prejudice, bias, and discrimination is beyond the scope of the current chapter. However, we hope that the ideas we offer here will help to facilitate culturally competent child life services, and begin a conversation among child life clinicians and educators regarding the need for continuing efforts toward this domain of care. First, we consider the process of enhancing one’s cultural competency. Lynch and Hanson (2011) proposed three steps for developing cultural competency: (1) having a self-awareness of one’s own beliefs, values, and biases; (2) understanding the client’s worldview and valuing the diverse heritage of others; and (3) having the intervention skills to feel effective in communicating and developing relationships that enable families from different cultures and life experiences to feel positive about their interactions. In addressing the first of these steps, recent work studying unconscious bias in healthcare stresses the importance of examining one’s own backgrounds and identities to interact more authentically with children, families, and colleagues, as the unconscious mind is a powerful force in shaping one’s overall behavior. Similarly, organizations and thought leaders are beginning to appreciate and harness this deeper understanding of how one’s cultures shape the automatic decisions individuals make every moment and the profound impact that such decisions have on one’s personal and professional lives. Every human being gets triggered, either positively or negatively, when exposed to different kinds of people. Recent studies within cognitive science point us to the conclusion that most biased decisions are not made by bad people with bad attitudes, but rather by well-intentioned people who are unaware of the inter-

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nal unconscious processes that may be affecting their decision-making every day. Confronting internal biases to improve practice of conscious awareness helps individuals move toward a more culturally competent model of care (Ross, 2017). Culturally competent care is sensitive to individual family values and avoids stereotypical models of communication or the assumption that one’s own background is the “norm” and the patient and family’s background is diverse. In addressing step two of their outline for understanding the client’s worldview, Lynch and Hanson (2011) provide important variables that need careful consideration when working with families of any culture. Child life specialists may consider asking some of the following questions in their ethnocultural assessment of the family’s preferences. • What are the patriarchal or gender differences in caregiving or parenting roles? • What is the involvement of extended family members? • Is the male considered the head of the household? • What importance do elders hold in decision making regarding the child’s healthcare options? • What do families believe regarding the cause of the illness such as physical imbalance, yin/yang, supernatural forces, or evil spirits? • How does the family’s culture impact their communication styles? (e.g. verbal/nonverbal, language fluency—spoken and written, use of touch, spatial norms, eye contact/aversion) • What impact does the family’s culture have upon their time orientation? (e.g. to present rather than future, to being habitually late or obsessively on time) • Are there indigenous or alternative healthcare practices in treatment consideration? Finally, addressing Lynch and Hanson’s third step regarding the importance of having culturally competent intervention skills, we offer a few practical suggestions for child life specialists to feel effective in communicating and developing relationships with, as well as providing services for, culturally diverse families. Congenial and sincere first contacts with patients and their families typically start the foundation for establishing supportive relationships. Using culturally appropriate greetings in the family’s chosen language is one easy tool for child life specialists. Developing a minimum conversational competency in a language spoken by the greater part of patient population served may be helpful. Another is to avoid assumptions through the incorporation of simple statements such as, “I know a little about your

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cultural background, but I do not know about your individual family and what practices and rituals are important for you. Please tell me how I can respect those and best help meet your needs at this time.” Simple questions regarding the patient and family’s preferences may greatly influence their perception of care. For example, specifically, asking the patient or the family about aspects of the hospital environment that may conflict with their own culture/religion, inquiring about interactions regarding restrictions on touch, distance, and gender of providers, and maintaining continuity among fellow hospital providers will demonstrate respect for cultural values ( Joint Commission, 2010). Assessing and advocating for the unique needs of the child and family with interdisciplinary team members is an essential child life role. For recent immigrants, assessing the patient and family’s acculturation experiences, understanding of the American healthcare system, language preference and other assimilation experiences is also important. Explaining the role of child life specialists, and explaining that there will be no additional fees for child life services, will be important, as many families will not be familiar with this profession. Establishing policies to ensure that healthcare providers, including child life specialists, conscientiously and consistently use appropriately trained interpreters, rather than English-speaking family members, will also support a culturally competent practice. Children should never be used as interpreters. Psychological preparation for procedures and reinforcement education for diagnoses should be provided through use of interpreters for less English-proficient patients and families. Patient reinforcement education materials need to be translated to ensure safety (Flores, 2006). In play and leisure programming, providing recreation resources in different languages, incorporating diverse activities such as songs, games, and cultural celebrations into child life programming and environment are also welcoming practices for supporting families from culturally diverse backgrounds. Beyond individual practices, professional organizations must also play a leadership and advocacy role toward a genuine commitment to diversity and support the efforts of child life specialists in working effectively with diverse families. Hospitals, organizations and ACLP must find ways to diversify the child life workforce to reflect the changing demographics in North America. Recruitment and retention of individuals from diverse backgrounds who more closely represent populations they serve helps create an inclusive, diverse hospital workforce that can engage their communities by being more understanding of their unique needs (Supple & Williams, 2016). Additionally, ongoing examination of child life certification criteria to consider requiring academic coursework focusing on cultural diversity, cultural competence, and spirituality would be an important step. Diversity instruction must be

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initiated during academic preparation of child life specialists and must be carried on during clinical training ranging from practicum, internships, and continuing education for child life specialists.

Spirituality of Parents and Family Members Culturally competent care also encompasses respect for the patient’s and family’s spiritual and religious foundation. It requires that the child life specialist and each healthcare professional be cognizant of the family’s faith traditions and have a firm grasp on his or her own personal beliefs. These shared or divergent beliefs not only impact the family and staff members’ perceptions and care of the illness or disability, but also direct the family’s daily living habits, interactions, and decision-making about child-rearing, utilization of healthcare, and treatment options. Parents’ child-rearing practices are filtered through their cultural, spiritual and religious lens. This lens is the prism through which they assess and find meaning in their child’s illness or injury, treatment plan and day-to-day care. Families may advocate for specific spiritual and religious therapies as complementary, supplemental, or alternative to the medical treatment of their child, or as a means to find meaning in their diagnosis and illness (Barnes, Plotnikoff, Fox, & Pendleton, 2000). Their pursuit of such supportive care may reflect their belief that biomedical interventions address only limited aspects of the person—the body, rather than the soul, mind, and spirit (Barnes et al., 2000; Moore, Talwar, & Moxley-Haegert, 2015). Families may turn to their spiritual community to provide a variety of healing therapies. Spiritual traditions may include prayer, pilgrimage, vows to saints or God, anointing, or the use of amulets, icons and other religious objects. Families may seek faith healers for solace and support. Some faith traditions mistrust or even fear physicians. Others believe in a passive resignation to a divine authority. In some instances, the medical community has responded to families’ religious beliefs, intervening when a particular belief posed a medical threat to the child. In a culturally-sensitive environment, religious and spiritual beliefs are routinely incorporated into a coordinated plan of care with the family. Since spirituality can guide positive coping strategies (Mahoney, Pargament, Tarakeshwar, & Swank, 2001), the families’ subsequent influence on their children’s illnesses may be directly influenced by their spiritual ideas and therefore impact their child’s overall well-being. It is important to consider the interplay between Kohlberg’s Stages of Moral Development and how children view the presence of illnesses along with motives driving their reasoning (Crain, 2016). The manner in which children

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choose to cope with challenges associated with illness may suggest that spirituality promotes positive self-work, in turn affecting the child’s physical, psychological, and behavioral development (Moore et al., 2015; Thayer, 2010)

Implications for Clinical Practice The general guidelines for integrating spiritual and religious resources into pediatric practice provided by Barnes et al. (2000) will assist child life specialists in integrating those resources into their everyday practice. • Anticipate the presence of religious and spiritual concerns in pediatric care. • Develop awareness of your own spiritual history and perspectives. • Become broadly familiar with the religious worldviews of the cultural groups in your patient population. • Encourage children and families to be your teachers about the specifics. • Build strategic interviewing skills and ask questions over time. • Develop a relationship with available chaplain services. • Build a network of local consultants. • Refer to family-preferred spiritual care providers. • Listen for understanding rather than for agreement or disagreement. The child life specialist who respects and practices these guidelines, and advocates for their acknowledgment and implementation by other healthcare professionals, is building the foundation for continued dedication to culturally competent and spiritually supportive care. SUMMARY Child life practice that is responsive to patient- and family-identified strengths and needs and builds a collaborative plan of care for play, support, and education is synonymous with a sound patient- and family-centered approach. Child life competencies, standards and the code of ethics hold each child life specialist responsible for continual growth in knowledge and skills to support children and their families during their hospitalization and healthcare experiences. Patient- and family-centered care is an ongoing pursuit, applicable to every child and family interaction, patient assessment and care plan, written policy, committee agenda, and organizational mission. In this chapter, we challenge the child life professional to critically review indi-

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vidual, program and institutional practices and policies with patients and families and partner with them to create, improve and enhance the healthcare experience for all. REFERENCES Als, H., Lawhon, G., Duffy, F. H., McAnulty, G. B., Gibes-Grossman, R., & Blickman, J. G. (1994). Individualized developmental care for the very lowweight preterm infant: Medical and neurofunctional effects. Journal of the American Medical Association, 272, 853–858. American Academy of Pediatrics, Committee on Hospital Care and Institute for Patient- and Family-Centered Care. (2012). Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129(2). Retrieved from: http://pediatrics .aappublications.org/content/129/2/394 American Academy of Pediatrics, Committee on Pediatric Emergency Medicine, American College of Emergency Physicians, Pediatric Committee, & Emergency Nurses Association. (2013). Joint policy statement: Guidelines for care of children in the emergency department. Journal of Emergency Nursing, 39(2), 116–131. American Hospital Association and the Institute for Family-Centered Care. (2004). Patient- and family-centered care toolkit: Strategies for leadership. Washington, DC: Author. Retrieved from http://www.aha.org/aha/ issues/Communicating-WithPatients/pt-family-centered-care.html. Association of Child Life Professionals. (2017). Vision, mission and values. Retrieved from http://www.childlife.org/about-aclp/purpose-mission-values Arango, P. (1990, November 6). House Memorial 5 Task Force on Young Children and Families. First steps to a community based coordinated continuum of care for New Mexico children and families. (Available from Polly Arango, PO Box 338, Algodones, New Mexico, 87001.) Barnes, L. L., Plotnikoff, G. A., Fox, K., & Pendleton, S. (2000). Spirituality, religion, and pediatrics: Intersecting worlds of healing. Pediatrics, 106(Supplement 3), 899–908. Becker’s Hospital Review (2015). 5 ways your hospital can benefit from patient centered care. Retrieved from http://www.beckershospitalreview.com/hospital management-administration/5-ways-your-hospital-can-benefit-from-patient centered-care.html Berwick, D. M. (2002). A user’s manual for the IOM’s ‘Quality Chasm’ report. Health Affairs, 21(3), 80–90. Caeymaex, L., Jousselme, C., Vasilescu, C., Danan, C., Falissard, B., Bourrat, M. M., & Speranza, M. (2012). Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Archives of Disease in ChildhoodFetal and Neonatal Edition, fetalneonatal-2011. Retrieved from http://fn.bmj.com /content/98/1/F26

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Center for the Study of Social Policy, the Population Reference Bureau, The. (1992). The challenge of change: What the 1990 Census tells us about children. Washington, DC: Author. Colby, S. L., & Ortman, J. M. (2015). Projections of the size and composition of the US population: 2014 to 2060, Current Population Reports, P25-1143, US Census Bureau, Washington, DC. Crain, W. C. (2016). Theories of development: Concepts and applications (6th ed.). Upper Saddle River, N.J: Pearson/Prentice Hall. Cypress, B. S. (2012). Family presence on rounds: A systematic review of literature. Dimensions of Critical Care Nursing, 31(1), 53–64. Dentzer, S. (2013). Rx for the ‘blockbuster drug’ of patient engagement. Health Affairs, 32(2), 202–202. Desai, P. P., Torres Rivera, A., & Backes, E. (2016). Latino families coping with children’s chronic health conditions: An integrative review of literature. Journal of Pediatric Health Care, 30(2): 108–120. DOI.org/10.1016/j.pedhc.2015.06.001 Dudley, N., Ackerman, A., Brown, K. M., Snow, S. K., American Academy of Pediatrics Committee on Pediatric Emergency Medicine, & Emergency Nurses Association Pediatric Committee. (2015). Patient-and family-centered care of children in the emergency department. Pediatrics, 135(1), e255–e272. Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health affairs, 29(8), 1489– 1495. Flores, G. (2006). Language barriers to health care in the United States. New England Journal of Medicine, 355(3), 229–231. Hemmelgarn, A. L, Glisson, C., & Dukes, D. (2001). Emergency room culture and the emotional support component of family-centered care. Children’s Health Care, 30, 93–110. Hyman, D., Jacqemard, A., & Hopfgarten, M. (2016). Engaging patients/families in harm prevention: From board to bedside. Paper presented at the Institute for Patientand Family-Centered Care, New York. Institute for Family-Centered Care. (1998). Core principles of family-centered health care. Advances in Family-Centered Care, 4, 1, 2–4. Institute of Medicine. (2001). Crossing the quality chasm: A new heath care system for the 21st century. Washington, DC: Author. Institute of Medicine of the National Academies. (2012, September). Best care at lower cost: The path to continuously learning health care in America. Washington, DC: The National Academies Press. Retrieved from http://books.nap.edu/openbook.php ?record_id=13444. Joint Commission on Accreditation of Healthcare Organizations. (2002). Accreditation manual for hospitals: The official handbook. Oakbrook Terrace, IL: Author. Joint Commission. (2010). Advancing effective communication, cultural competence, and patient- and family-centered care: A roadmap for hospitals. Oakbrook Terrace, IL: Author. Johnson, B. H. (2000). Family-centered care: Four decades of progress. Families, Systems, and Health, 18, 133–156.

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Kain, Z. N., Mayes, L. C., Caldwell?Andrews, A. A., Saadat, H., McClain, B., & Wang, S. M. (2006). Predicting which children benefit most from parental presence during induction of anesthesia. Pediatric Anesthesia, 16(6), 627–634. Kamerling, S. N., Lawler, L. C., Lynch, M., & Schwartz, A. J. (2008). Family-centered care in the pediatric post anesthesia care unit: Changing practice to promote parental visitation. Journal of PeriAnesthesia Nursing, 23(1), 5–16. Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. Kuo, D. Z., Mac Bird, T., & Tilford, J. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805. Leape, L., Berwick, D., Clancy, C. Conway, J. Gluck, P., Guest, J., … Isaac, T. (2009). Transforming healthcare: A safety imperative. Quality and Safety in Health Care, 18, 424–428. Lewandowski, L. A., & Tesler, M. D. (Eds.). (2003). Family-centered care: Putting it into action, SPN/ANA guide to family-centered care. Washington, DC: Society of Pediatric Nurses/American Nurses Association. Lynch, E. W., & Hanson, M. J. (2011). Developing cross-cultural competence: A guide for working with children and their families (4th ed.). Baltimore, MD: Paul H. Brookes Pub. Mahoney, A., Pargament, K. I., Tarakeshwar, N., & Swank, A. B. (2001). Religion in the home in the 1980s and 1990s: A meta-analytic review and conceptual analysis of links between religion, marriage, and parenting. Journal of Family Psychology, 15(4), 559. Mangurten, J., Scott, S. H., Guzzetta, C. E., Clark, A. P., Vinson, L., Sperry, J., ... & Voelmeck, W. (2006). Effects of family presence during resuscitation and invasive procedures in a pediatric emergency department. Journal of Emergency Nursing, 32(3), 225–233. Mardis, T., Mardis, M., Davis, J., Justice, E. M., Holdinsky, S. R., Donnelly, J., ... & Riesenberg, L. A. (2016). Bedside shift-to-shift handoffs: A systematic review of the literature. Journal of Nursing Care Quality, 31(1), 54–60. McAlvin, S. S., & Carew-Lyons, A. (2014). Family presence during resuscitation and invasive procedures in pediatric critical care: A systematic review. American Journal of Critical Care, 12(6), 477–484. McConnell, M., & Imaizumi, S. O. (Eds.). (2001). Guidelines for pediatric home health care. Evanston, IL: American Academy of Pediatrics. Meert, K. L., Clark, J., & Eggly, S. (2013). Family-centered care in the pediatric intensive care unit. Pediatric Clinics of North America, 60(3), 761. Mittal, V. (2014). Family-centered rounds. Pediatric Clinics of North America, 61(4), 663–670. Moore, K., Talwar, V., & Moxley-Haegert, L. (2015). Definitional ceremonies: Narrative practices for psychologists to inform interdisciplinary teams’ understanding of children’s spirituality in pediatric settings. Journal of Health Psychology, 20(3), 259–272.

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National Academy of Medicine. (2017). Vital directions for health care. Washington, DC: The National Academies Press. Retrieved from https://nam.edu/wp-content /uploads/ National KIDS COUNT Data Book. (2017). Retrieved from http://www .aecf.org/resources/2017-kids-count-data-book Richards, C. A., Starks, H., O’Connor, M. R., & Doorenbos, A. Z. (2017). Elements of family-centered care in the pediatric intensive care unit: An integrative review. Journal of Hospice & Palliative Nursing, 19(3), 238–246. Ross, H. (2017) Does unconscious bias training work? Retrieved from http://cookross.com/services/thought-leadership/free-thought-papers . Shelton, T. L., Jeppson, E. S., & Johnson, B. H. (1987). Family-centered care for children with special healthcare needs. Bethesda, MD: Association for the Care of Children’s Health. Shilling, V., Morris, C., Thompson?Coon, J., Ukoumunne, O., Rogers, M., & Logan, S. (2013). Peer support for parents of children with chronic disabling conditions: A systematic review of quantitative and qualitative studies. Developmental Medicine & Child Neurology, 55(7), 602–609. Sia, C., Antonelli, R., Gupta, V. B., Buchanan, G., Hirsch, D., Nackashi, J., et al. (2002). American Academy of Pediatrics. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. The medical home. Pediatrics, 110, 1, 184–186. Supple, M., & Williams J. (2016) Changing the face of care: Creating a diverse workplace in hospitals. Retrieved from https://www.childrenshospitals.org /Newsroom/Childrens-Hospitals-Today/Fall-2016/Articles/Creating-a-Diverse Workplace Thayer, P. (2010). Meeting the spiritual needs of children with chronic and lifethreatening illness. In N. B. Webb (Ed.), Helping children and adolescents with chronic and serious medical conditions: A strengths-based approach. Hoboken, NJ: John Wiley and Sons. U.S. Department of Health and Human Services. Healthy people 2010. Volume II: Objectives for improving health (2nd ed.). Retrieved from http://www.health.gov /healthypeople/Publication

Chapter 7 ASSESSMENT AND DOCUMENTATION IN CHILD LIFE E LLEN HOLLON, E ILEEN CLARK, CHANTAL LE B LANC, AND LINDA S KINNER OVERVIEW he success of child life work is dependent upon accurate and ongoing assessment of children and or their families as they experience and respond to healthcare encounters and on the accurate recording or documentation of that work. This chapter provides an introduction to the child life assessment and documentation process that is essential in order to communicate with others and maintain a permanent legal record of child life interventions. Establishing a trusting relationship with the patient and family, the foundation of child life work, begins with initial information gathering and assessment. In order to make an accurate and valuable assessment, the child life specialist must have extensive knowledge of:

T

• • • •

child growth and development the potential impact of stress and healthcare experiences family systems theory and family dynamics therapeutic, healthcare/medical and developmental play

In addition, the child life specialist must be skilled in: • • • •

establishing supportive relationships communicating with children, families and team members guiding children in therapeutic play and coping techniques gathering information from a variety of sources 195

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The child life assessment process requires information from multiple sources: the healthcare team, the family, the child, and the child life specialist’s observation of the child and family’s interactions. Each of these sources provides information that is unique and rich. Taken together, a child life specialist is able to build a comprehensive assessment of the needs of the child and family.

Information from the Healthcare Team The patient’s healthcare record will provide a portion of the information needed for accurate assessment. The admission or history section of the patient’s medical record, consult reports, and provider notes will all give clues, not only about the medical issues, but also psychosocial information vital to the child life specialist. The patient’s healthcare record is not the only source of information, however. Other members of the care team may have additional information that is not recorded. This might include information about questions the family asked, whether they appeared apprehensive, how they supported their child, and so on. Though perhaps not recorded in the patient’s medical record, this information can be invaluable for the child life specialist. It may provide insights about the immediate needs of the family related to their response to the admission, or other events they have encountered. In addition, the child’s nurse will likely have information about upcoming medical procedures related to diagnosis and treatment. Nurses who worked the night shift, for example, may have information about restless nights, increased anxiety or nightmares. A positive professional working relationship with members of the healthcare team who fully understand the role of the child life specialist will ensure necessary information is exchanged completely and in a timely manner.

Information from the Family Establishing a supportive relationship with the family is important for the child life specialist because the members of the family “know their child best.” A strong supportive relationship provides a foundation for the family to share pertinent information about the child and the family. Such relationships begin with the child life specialist providing his or her name along with an explanation of the role of child life in the child’s healthcare experience. The next step in building the relationship may involve providing information that helps the family to understand the hospital/healthcare environment. For example, explanations may be given regarding the roles of medical students, interns, and residents in a teaching hospital or academic medical center, as well as other team members caring for the child. This infor-

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mation should also include a “menu” of strategies the family can use to have an active role in supporting their child. Items on the “menu” might include information on: • ways to provide or receive play opportunities for the child, with a discussion of why play is important in coping with healthcare experiences • introduction to specific ways family members can support their child during procedures • instruction for providing supportive distraction techniques, if the family chooses that role • identification of self-care options for extended stays Once this initial relationship is developed, the family is a critical, and often only, source of information about: • past healthcare encounters • recent stresses for the child and family, such as divorce, death of a relative or separation from family and/or pets • the child’s usual responses to stress • typical coping strategies used by the child

Information from the Child The child is, of course, one of the most valuable sources for much of the information that the child life specialist requires. Regardless of the child’s age, temperament, and other individual attributes, play is one of the best assessment activities for the child life specialist to communicate with the child (Gaynard, Wolfer, Goldberger, Thompson, Redburn, & Laidley, 1998). Knowing that a child’s temperament can account for as much as 50% of the variance in a child’s behavioral response prior to and after a hospitalization (McClowry, 1990; Koller, 2008a), and that children with more challenging temperaments often need more child life specialist interventions (LeBlanc, Naugler, Morrison, Parker & Chambers, 2014), it is essential for the child life specialist to be aware that play is a vital assessment tool. Play serves as a natural activity for children. It helps the child life specialist to establish a supportive relationship, facilitates the assessment process and is a valuable form of intervention. The child life specialist will be able to determine the child’s developmental level, emotional state, understanding of his or her healthcare experience, possible misconceptions and other critical information such as questions the child may have but finds difficult to ask.

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Sometimes, developing supportive and therapeutic relationships with children in the healthcare setting can be a challenge (Gaynard et al., 1998). Children who are shy, angry, and fearful or who are in significant pain may be difficult to engage. In these circumstances, the child life specialist may begin the relationship by participating in a favorite activity, game or craft. Activities such as these can be the bridge to connect with children and help them to be comfortable in expressing their thoughts and feelings about their healthcare experience. Through play, children can relax and are more likely to ask questions, express concerns, and reveal misconceptions about what is happening. MODELS FOR ASSESSMENT A number of models exist for assessing the child and family. The three discussed here are the Stress Potential Assessment Process, the Psychosocial Risk Assessment for Pediatrics (PRAP) and the Child Life Assessment Intervention Plan (CLAIP).

The Stress Potential Assessment Process The Stress Potential Assessment Process, developed by Gaynard et al. (1998), encourages the child life specialist to formulate a care plan based on consideration of three categories of information: healthcare, family, and child variables (see Figure 1). By combining an evaluation using these variables, the child life specialist assigns a “stress potential” rating to the patient using a scale of 1 to 5, with 1 being low stress potential and 5 indicating the “highest potential for experiencing stress and coping difficulties” (Gaynard et al., 1998, p. 41). The child life specialist draws upon knowledge of child development and family systems functioning with added healthcare stressors to assign each child a rating. Child life specialists would likely spend the greatest amount of time with children rated 3 or higher. The child’s stress potential is continuously reassessed and may be modified as changes occur during an individual’s healthcare encounter, and his or her response to it, or as additional information about the child and family is gleaned. In addition to providing a way of assessing and prioritizing patients, the method may also assist in distribution of child life staff resources.

Psychosocial Risk Assessment in Pediatrics A second, more recent model is the Psychosocial Risk Assessment in Pediatrics (PRAP), developed in the Department of Child Life and Integra-

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Health Care Variables

Diagnosis; Anticipated treatment and procedures; Physical responses to illness, injury and treatment; Previous health care experiences; Number, personalities, and values of health care professionals involved

Family Variables

STRESS POTENTIAL ASSESSMENT and CHILD LIFE PLANNING

Availability to child during hospital stay; Support systems and resources; Other family needs and commitments; Cultural beliefs and values; Anxiety level and emotional status; Other life stresses; Responses to current and previous health care experiences; Understanding of child’s health care situation; Awareness of child’s needs and concerns; Ability and opportunities to communicate with health care providers

Child Variables

Chronological and developmental age; Responses to previous separations from home and family; Responses to current and previous health care experiences; Ability to communicate and function independently; Understanding, fears, and concerns; Coping styles and resources; Cultural values beliefs; and Other life stresses

Figure 1. Stress Potential Assessment Process. From: Gaynard, L., Wolfer, J., Goldberger, J, Thompson, R., Redburn, L., & Laidley, L. (1998). Psychosocial care of children in hospitals. Child Life Council: Bethesda, MD. Reprinted with permission of the Association of Child Life Professionals.

tive Care at Cincinnati Children’s Hospital Medical Center. The PRAP is a formal screening tool to assess a patient’s risk for coping during a particular intervention or other healthcare encounter. The PRAP score of an individual will change and adapt based on the healthcare encounter and its assessed impact on the patient. The tool has been validated for use with patients 3 to 21 years of age with both typical and atypical developmental histories (Klayman & Staab, 2012; Staab, Klayman, & Lin, 2014). The risks associated with a child’s healthy adaptation to a healthcare encounter are often revealed through a combination of unique attributes. The PRAP tool highlights a child’s capacity to cope and adapt to the uncer-

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tainties of healthcare encounters. A PRAP can be initiated by a child life specialist in either an inpatient or outpatient setting, and is most effectively administered during an initial encounter or when there is a significant change in a child’s coping. Examples may include a new diagnosis, invasive procedure, and change in family support or a transfer in services or location. A completed PRAP assigns a risk level based on empirical evidence using eight variables that closely correlate with the potential for negative outcomes during healthcare encounters. The outcome of each variable captures clinical observation, as well as patient and parental report. All variables contained within the PRAP are essential to completing a valid risk assessment and include: communication, anxiety and coping, special needs, temperament, and past healthcare encounters. Additional variables direct the child life specialist to apply a more critical, clinical assessment; they include invasiveness of procedure, perceived parental stress and developmental impact. Assessment of these additional components demonstrates how essential it is for the child life specialist to view the use of the PRAP as an additional resource, to guide best practice and to prioritize patient care. The PRAP should not be used independent of clinical judgment. A PRAP score (risk level) is completed by reviewing the descriptions under each variable and selecting the number that best describes the patient, based upon the responses from the parent interview and the child life specialist’s clinical assessment. Each risk factor is scored from zero to three. Higher scores indicate greater potential (risk) for a child to experience more negative emotional behaviors. A child receiving a high-risk level is demonstrating elevated distress with limited ability to cope and should be considered a priority for child life interventions in support of procedural and psychosocial support.

Child Life Assessment Intervention Plan A third method of assessment, one that we will consider in greater detail, is the Child Life Assessment Intervention Plan (CLAIP). This model was originally developed at the IWK Health Centre in Halifax, Nova Scotia in 1992, and has been periodically revised in response to new research and/or clinical insight. CLAIP provides specific criteria for assessing patients and prioritizing their needs, and delineates forms of child life intervention that address the identified needs of the individual. The system begins with consideration of critical psychosocial variables that have been found to predict psychological upset in children experiencing healthcare. They include the following:

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1. 2. 3. 4. 5. 6. 7. 8. 9.

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Response to Healthcare Variables Developmental Vulnerability Age Mobility Culture and Language Social and Family Status Support System Temperament/Coping Style Past Negative Experiences (IWK Child Life Services, 2015)

When using the CLAIP, the first two variables (Response to Healthcare Variables and Developmental Vulnerability) are considered to be the most critical in the prioritization of child life specialist’s interventions. The presence of either of these two variables indicates that the child life specialist must prioritize the coping and/or developmental needs of the child and develop an individual plan of care (see Figure 2). Each of the assessment variables provides important information for the child life specialist in order to assess the psychosocial and developmental needs of the child and family, and each is considered in turn.

Response to Healthcare Variable This variable pertains to the child who is having a poor response to healthcare experiences, displaying some form of emotional distress such as fear, anxiety, apprehension, tension, uncertainty or confusion. The child demonstrates this emotional distress through specific thoughts, feelings, behaviors and/or physiological processes (IWK Child Life Services, 2015). The healthcare variable causing the distress must be identifiable. Children’s responses to healthcare were described by Thompson and Stanford (1981) as falling into three categories: • Active—obvious behaviors such as hitting, destroying property or fighting • Passive—less obvious behaviors such as becoming withdrawn, loss of appetite, increased sleeping • Regressive—new behaviors, or a return to behaviors from a previous developmental stage that are not consistent with positive development, such as changes in sleep patterns, loss of toileting skills, being restless or anxious.

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Figure 2. Child Life Assessment, Intervention, Plan and Evaluation of Outcomes.

A child may or may not be able to express feelings verbally, so the child life specialist must observe the child’s response to healthcare, and design interventions to determine the child’s reactions and feelings, allowing the child opportunities for self-expression in an environment that promotes comfort and emotional safety.

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Developmental Vulnerability Children may be more vulnerable to a healthcare experience due to existing developmental delay, mental health challenges, or as a result of a healthcare experience or treatment that temporarily restricts or impairs the child’s ability to interact with his or her environment, thereby impacting his/her typical developmental trajectory. For instance, a severe cardiac condition can restrict a child’s movement and ability to fully experience the environment, as well as the capacity to develop physical strength, motor skills, and social skills, resulting in a significant impact on a child’s development and/or ability to cope. In comparison to typically developing children, those with special needs or mental health illness may not have the same range of skills to cope effectively, or the language or cognitive ability to understand explanations of upcoming events or procedures. Some children may have verbal abilities, but not the corresponding age-related cognitive capacities. Hence, staff members may assume they understand explanations when, in fact, they do not. The developmental impact of hospitalization can also be a concern for children who are physically restricted to their rooms for extended periods, or are influenced by other factors that compromise optimal development. Extra effort will be required by the child life specialist to facilitate coping and support the child’s developmental needs. A child life assessment that identifies the presence of either of these first two variables indicates the need to prioritize interventions for the child and family. Several other variables in the research literature also demonstrate a relationship to, or a direct link to child/family coping with, healthcare experiences. These variables assist the child life specialist to gain a better understanding of the child, family and their social context, and can help inform the decision about specific interventions to offer the child/family. These additional variables are described below.

Age Very young children, under 4 years developmentally, are particularly vulnerable to the impact of hospitalization and painful procedures (Young, 2005), and often exhibit more behavioral and emotional stress responses to intensive care (Small, 2002), and surgery (Kain, Mayes, O’Connor, & Cicchetti, 1996). This can be particularly important if the child’s parent is unable to be present (either physically or emotionally) during the healthcare stay. The child life specialist’s developmental knowledge can be instrumental in influencing care for children in this age group and encouraging parents to participate in care to the degree with which they are comfortable.

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Mobility Changes in the child’s mobility may negatively impact his or her ability to engage in play and other experiences while hospitalized. Children who are in isolation or restricted to bed will need accommodations to their environment and play activities to insure positive coping.

Culture and Language The child and family’s cultural background and language may also have an influence on their healthcare experience and should be considered by the child life specialist when planning care. The family’s racial and ethnic identity, as well as family culture, shapes behaviors and rituals ( Johnson, 2005). Beliefs about western medicine, health and healthcare provision can have an impact on the family’s adaptation to, and coping with, the healthcare experience. Additionally, delivery of healthcare information in the family’s preferred language is essential to their understanding. It is important to advocate for qualified interpreters to be readily available to interpret medical information and psychosocial care needs and to have properly translated materials available to facilitate communication and understanding. Best practice is not to have family members serve as interpreters (Institute for Patient- and Family-Centered Care, 2017).

Social and Family Status A child is typically a member of a family system, however the child may uniquely define it. That system brings to the healthcare environment its own set of influences. The child life specialist should seek to understand current stressors influencing the family, such as changes in family composition, employment issues faced by the parent(s), work-life stressors or transitions, or financial strain. Any such stressors may influence the family’s ability to be present physically or emotionally, and to adapt and cope with the current situation and the healthcare setting.

Support System A child’s ability to cope successfully with healthcare experiences is largely influenced by the presence (both physically and emotionally) of a supportive parent, or other support system (Kain et al., 1996; Koller, 2008a; Manne, 2009; Small, 2002; Small & Melnyk, 2006; Rennick, Johnston, Dougherty, Platt & Ritchie, 2002; Young, 2005). Varying circumstances may, in some cases, limit the parents/caregivers’ ability to be present; in these situations, the child life specialist should aim to enhance a child’s coping by

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coordinating volunteer support and providing additional interventions to address the needs of the child.

Temperament/Coping Style There is a relationship between a child’s temperament/coping style and her/his capacity to adapt and cope with new and challenging healthcare experiences (Blount et al., 2009; McClowry, 1990; Small & Melnyk, 2006; Young, 2005). LeBlanc et al. (2014) found that children with more challenging temperaments received more child life specialist interventions and that their parents reported a greater need for developmental support, preparation, expressive play and family facilitation. This variable is identified when temperament or coping style is observed to impact the child/family’s ability to cope with the healthcare experience.

Past Negative Experiences Children repeatedly report fear of needles, pain, being separated from family, friends and pets as the worst parts of hospitalizations (Chappuis et al., 2011; Lindeke, Nakai, & Johnson, 2006; Salmela, Salanterä, & Aronen, 2009; Wilson, Miguel, Erenbach & Carlson, 2010). Poor pain management and multiple invasive procedures are predictive of future negative responses, increased risk of post-traumatic response and healthcare avoidance as an adult (Koller & Goldman, 2012; Manne, 2009; Zempsky, Cravero & Committee on Pediatric Emergency Medicine and Section on Anesthesiology and Pain Medicine, 2004). The number of invasive procedures the child experiences while alert (rather than when sedated) is also predictive of coping. The child’s recollection of the experience is what is important (Rennick & Rashotte, 2009); hence, it is important to explore the child/family’s perception of past experiences.

Child Life Specialist Interventions In addition to consideration of child/youth and family risk factors, the CLAIP also provides a list of child life specialist interventions that can be offered individually or in combination, to help meet the needs of the child, sibling and/or family (as defined by the child). Below is a brief overview (IWK Child Life Services, 2015): Play/Activity Programming. Play is recognized as being critically important for normalization, expression, learning and processing of experiences (Koller, 2008b; Koukourikos, Tzeha, Pantelidou, & Tsaloglidou, 2015; Gaynard et al., 1998; Potasz, Varela, Carvelho, Prado, & Prado, 2013). In a

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recent study gathering children’s perceptions about “play in hospital,” children articulated the importance of play for them and their siblings, identified child life staff as important for play in the hospital and expressed their expectation that play should be available to all children who receive healthcare services, regardless of their location in the healthcare environment (LeBlanc, Park, Moore, & Desai, manuscript in progress). The play/activity program provides developmentally appropriate materials, as well as space and activities that facilitate involvement in play. This intervention can be provided in an activity area, at the bedside, a teen lounge, or clinic space, essentially anywhere children spend significant time. Developmental Support. A child whose developmental progress is impacted (or risks being impacted) by treatment, or lengthy and/or repeated admissions to the hospital can benefit from a developmental plan of care that identifies specific activities to reach developmental goals. Ideally, the goals are identified together with the family while incorporating goals from members of the interdisciplinary team (e.g. OT, PT, Speech). The goals must be specific and should include activities that can be implemented by all those involved in the child’s care. Healthcare Play/Therapeutic Dialogue. Child life specialists use many different activities and strategies to support expression of thoughts and feelings as it relates to healthcare experiences, such as using medical supplies and equipment, art supplies, music, photography, technology-based activities, puppetry, dramatic play, or journaling/blogging. Medical play is a specific form of healthcare play during which the child uses medical supplies /equipment (or creates them) to re-enact medical experiences on a “patient” such as a body outline doll, stuffed animal, or puppet. Healthcare and medical play interventions offer the opportunity for children to share their thoughts and feelings, allow for clarification of misconceptions, and provide an opportunity to explore coping strategies and work through emotions associated with painful or frightening experiences (McCue, 1988; Nabors, Bartz, Kichler, Sievers, Elkins, & Pangallo, 2013; Ostrenga, 1980; LeBlanc & Chambers, 2013). When children are unable, physically or emotionally, to participate in the activity, the child life specialist may even “play for” the child. Therapeutic dialogue is the process of verbally exploring a child’s perception of her/his experiences, fears, concerns, as well as focusing on coping style and discovering strategies that can support coping and resiliency. It is important to be attuned to the child’s developmental level, verbal and nonverbal responses, and to demonstrate a naïve and authentic interest in understanding the child and his/her experiences. Preparation (sometimes termed psychological preparation). Most children cope better when they receive developmentally appropriate information geared to

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their coping style and temperament (Gursky, Kestler, & Lewis, 2010; Jaaniste et al., 2007; LaMontagne, Hepworth, Salisbury, & Cohen, 2003a; LaMontagne, Hepworth, Cohen, & Salisbury, 2003b; Kain, CaldwellAndrews, & Wang, 2002). This means the provision of clear and accurate information in advance of an experience, whether it is a medical intervention such as surgery, a transition to a new team/care area, or re-entry to their community/home/school after a lengthy admission. The literature reports that most children cope better when they understand the rationale for the intervention or transition, the anticipated sequence of events, the sensations that accompany the experience, as well as an opportunity for questions and clarification of any misconceptions (Gursky et al., 2010; Jaaniste, Hayes, & von Baeyer, 2007; Koller, 2007; Kuttner, 2010). Studies have reported that preparation is most effective when coping strategies are modeled and practiced during the session/discussion, allowing the child to gain confidence and have a coping plan ( Jaaniste et al., 2007; LaMontagne et al., 2003a; LaMontagne et al., 2003b). Procedural Support. Providing support during a medical intervention or other healthcare experience may include various forms of distraction or altered focus activities (e.g., using stress balls, distraction toys, videos, storytelling, joke telling, or visualization/imagery), coaching the child/family to use the coping strategies previously identified or rehearsed during the preparation session, or providing information during the procedure, depending on the child and the context. Distraction is well supported in the research literature, as is hypnosis for decreasing procedural distress and self-reported pain (Birnie et al., 2014; Koller & Goldman, 2012). Positioning for comfort is increasingly recognized as an important strategy in minimizing a child’s sense of vulnerability and supporting positive coping and increased child/family satisfaction (Cavender, Goff, Hollon, & Guzzetta, 2004; Sparks, Setlik, & Luhman, 2007). The child life specialist may need to advocate for the use of such positions. Some children want to know each step of the procedure, while others do not. Some children are observed to cope better when distraction activities are provided and no attention is given to the procedural steps. The support provided during procedures must be tailored to the child, preferably discussed in advance during preparation for the intervention, and a coping plan created. Post-procedural discussion allows the child life specialist to explore the child/family’s perception of the experience, what went well and what strategy might be helpful in future. This is an important opportunity for the child life specialist to provide specific praise for positive actions undertaken by the child/family and to help frame the experience/memory in a way that helps to focus on its positive aspects and promotes skill building, coping and re-

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siliency (Humphreys & LeBlanc, 2016; Jaaniste et al., 2007; Rennick & Rashotte, 2009). Family Facilitation. The child’s family is considered to be whomever the child states is her/his family. It is important for the child life specialist to develop a supportive relationship with the child’s family. Accepting family members “where they are” is important for being able to partner with them, developing a trusting relationship, helping translate medical jargon, supporting an understanding of their child’s response to healthcare, providing information, and facilitating/fostering parent-professional partnerships in order to provide and receive the best care. Sibling Support. Child life specialists recognize that siblings are integral members of the child’s family and are influenced by their brother or sister’s health concerns and healthcare experiences. They, too, need psychosocial support. The child life specialist should discuss sibling perceptions, understanding and overall coping with this experience with the sibling(s) when available and/or parents to determine any further support needs. Child life specialists often use many of the same interventions with siblings (play programming, healthcare play/therapeutic dialogue, preparation) to help them cope, as well as support and maintain sibling and family relationships.

Plan/Outcomes Child life specialists need to be able to articulate (and document) why a child/family needs specialized/individualized interventions, what the expected outcomes are and whether those outcomes are achieved. It is important to consider the behavioral and psychological responses following child life specialist interventions. Sometimes the outcomes are immediate (e.g., decreased worry after a clear and developmentally appropriate explanation, as observed by change in facial expression, increased engagement, increased play behaviors and/or by what the child says). However, sometimes it takes time, and there is a cumulative effect of various interventions. Positive outcomes might include: the establishment of a relationship with the child life specialist; the child is able to verbalize the reason for admission, treatment, or understanding of medical intervention (either verbally or through symbolic play); the use of coping strategies during stressful experiences; adherence to the treatment plan; maintaining or improving developmental skills; decreased anxiety/distress observed through changes in behavior; decreased aggressive behaviors; improved sociability and/or increased ability to respond positively to requests and expectations (Kronenberger, Carter, & Thomas, 1997). The Child Life Consult/Intervention Record (see Appendix A) is an initial assessment/consult form that is completed and placed in the child’s

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health record. It details the assessment variables of note at the time of the assessment, the interventions provided, and the outcomes, with space to note the child/family’s response to the interventions and the plan for child life care. The CLAIP also has Intervention Plan worksheets for the two variables that automatically identify a child as a “priority patient” (Response to Healthcare & Developmental Vulnerability) and individualized developmental or preparation support plans for each developmental level, as well as for children with special needs (see sample worksheets, Appendix B). In planning and prioritizing their daily work, child life specialists must consider the variables, previously described, individually and in combination, to guide them in deciding which children require their attention, and to what degree. Thorough and ongoing assessment and reassessment are essential to the success of child life interventions. As a collaborative member of the healthcare team, it is critical for the child life specialist to share the assessment, the interventions provided, the outcomes anticipated/observed, and plans for child life service through verbal and written communication. It is important to share strategies that work well for the child/family so that the team may support and promote continuity in care.

Formal Developmental Assessment Tools Child life specialists are, on occasion, asked by others in the healthcare setting to conduct a formal developmental assessment on a particular child. The results may assist in confirming a diagnosis, demonstrating a need for referral to an early intervention program for a young child whose development is lagging, or providing a baseline assessment prior to the initiation of a particular treatment, intervention, or surgery. Such assessments should be administered only if the specialist has received appropriate training regarding the administration of such tools. Examples of formal assessments that might be used by child life specialists include the Hawaii Early Learning Profile (HELP) or HELP 3–6 yrs., 2nd edition (Teaford, 2010), and the Brigance Inventory of Early Development III (BIED III) (French, 2013). The HELP has been validated in infant, toddler and preschool versions, and includes assessment of multiple domains: cognition, language, gross motor, fine motor, social-emotional, self-help, regulatory and sensory. The BIED III assesses children ages birth to seven in the following domains: physical development, language development (receptive and expressive), literacy, mathematics and science, daily living, and social and emotional development. Each of these assessments relies heavily on parent report and assumes parent presence at the time of test administration—a condition some-

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times difficult to obtain in the hospital or other healthcare setting. Most of these tools, however, do not accommodate for a child with disabilities, do not consider cultural influences on the ways that children develop, nor are they standardized for children with chronic illness or those experiencing lengthy or repeated healthcare experiences. Moreover, most of the tools are not standardized in the diverse languages and cultures represented in many of today’s healthcare settings.

Benefits of Child Life Assessment for Other Disciplines In most settings where child life specialists are employed, they work in collaboration with a team of other professionals. Each team member brings a unique approach to the child and family’s care, and the most successful synthesis of information gathered through this collaboration results in care that is well planned, thorough and expeditious. For example, child life specialists may work closely with a social worker and a chaplain as part of a “family services” team. The shared assessments of each discipline prove to be valuable as they work to coordinate the best possible developmentally appropriate and family-centered care for a child and her/his family. Child life specialists participating in formal rounds or a care conference, for example, may be asked to comment on the normative developmental milestones expected from a particular patient and how the experience of healthcare may cause interruptions to that development. Child life specialists can also provide information relative to children’s responses and reactions to healthcare based on their developmental level. Additionally, child life specialists can provide valuable information to other members of the team through documentation of their assessment and an identified coping plan (see sample coping plan, Appendix C). By sharing the assessment and corresponding care plan for the specific child, the child life specialist can suggest methods and approaches that others can use with the child, facilitating a collaborative approach that can lead to more successful completion of procedures and examinations. DOCUMENTATION Just as the assessment process lays the foundation for child life work, documentation of the assessment, intervention and outcomes provided allows child life professionals to communicate the impact of their interventions to others. Patient care outcomes documented by the child life specialist can demonstrate the quality of service provided to children, families, and to the

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organization. Healthcare accrediting bodies have strict requirements regarding documenting in real time; it is incumbent upon the child life specialist to be familiar with them. Documentation standards for child life programs should be developed in compliance with hospital policy and procedures, the standards for documentation recommended by the Association of Child Life Professionals, and requirements of applicable regulatory agencies. Child life documentation is a standard of practice and a professional responsibility, and demonstrates the expertise applied to a patient encounter. Many child life specialists, especially those new to the field, may not fully appreciate the impact of their work on the patient, family and other health professionals. It may also be challenging to describe specific interventions and the outcomes of those interventions. For instance, time spent providing emotional support for a child may be difficult to articulate in the patient’s healthcare record. However, a child life specialist may be more comfortable describing that intervention and its outcome as a therapeutic dialogue or conversation. Sharing information with others helps clarify the role of the child life specialist and demonstrates the contribution that child life specialists make to the care of children and families. Child life specialists often are assigned to large caseloads; it is not unusual, therefore, for them to be faced with the choice of either documenting the care they have given or providing additional direct patient care. Child life specialists may see the task of documentation as separate from care—an additional demand on their time that deprives other children of their service. As with other healthcare professionals, the child life specialist must believe that documentation is an integral component of child life care. An intervention is not regarded as complete until it is shared with other team members through the patient’s healthcare record. Effective and efficient documentation is a skill, and as with the development of any skill, practice leads to mastery of it. Clear guidelines for documentation and a vision of what should be shared in the healthcare record will provide the framework for the child life specialist to document in an efficient and effective way. The information in the following sections will provide the foundation for quality documentation. The healthcare record is the legal record that contains history and assessment information, the results of tests and procedures, and a clear record of the patient’s plan of care. It also serves as a method for communication among all healthcare professionals in order to provide the most comprehensive and appropriate treatment possible. Most child life specialists would agree that recording information, observations and service in the patient healthcare record is an opportunity to influence patient care. However, child life specialists may not be aware of additional outcomes of comprehensive documentation.

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Benefits of Documentation for the Child and Family Child life specialists contribute a unique perspective and expertise to the care of children and families. The quality of care improves if all caregivers share an understanding of how the child is coping, the child life goals, the nature of interventions planned, and the outcomes of the interventions. The child life specialist acts as an advocate for the child and family by ensuring that team members have information that will make care more effective. For example, some children may have special needs, requiring a specific approach to communication that has potential to enhance their understanding of a healthcare experience. Documenting the patient’s response to a specific technique/intervention allows the child life specialist to play an integral role in informing healthcare providers, as well as educating staff that may be working closely with the patient.

Benefits of Documentation for the Healthcare Team Using the example above, documenting information on the child’s (and family’s) understanding contributes to a successful patient experience and demonstrates the value of the child life specialist as a supportive member of that team. This valuable information helps team members determine an appropriate approach that may result in more positive relationships among the child and family and the healthcare professionals. Additional benefits include informing novice healthcare professionals of the breadth and depth that child life interventions can have on improved medical compliance with invasive treatment and procedures. Descriptive accounts of interactions with children can help validate the positive influence of developmentally appropriate language during a supportive healthcare encounter. An easily navigated electronic healthcare record can positively influence a successful encounter with healthcare providers, especially when a child’s response to a procedure includes triggers that elevate distress.

Benefits of Documentation for the Child Life Specialist An entry in the healthcare record demonstrates that the child life specialist is involved with the child, has assessed valuable information, has a plan to intervene, and/or that the intervention is making a significant contribution to the care of this child and family. Child life specialists are accountable not only for their immediate actions, but also for the thoughtful planning and reporting of care provided. An audit of the healthcare record should demonstrate that the child life specialist is providing quality child life care for a particular child and family and is also a skilled team member. The

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child life program leader can use documentation as one indicator of the ability of the child life specialist to assess, intervene and evaluate patient care. Absence of a healthcare record entry may indicate that the child life specialist is not meeting documentation standards or perhaps that care was not provided to the patient, especially if the record is reviewed retrospectively.

Benefits of Documentation from the Perspective of the Child Life Profession Many pediatric hospitals also serve as academic medical centers, providing practical, clinical experience for a number of health disciplines. The child life specialist’s documentation can provide a valuable tool to introduce the child life profession, and educate others about how the child life specialist contributes to care of the patient and family. These emerging professionals may carry this increased understanding of child life work to new placements and future employment sites, benefitting children and families and/or child life staff in those subsequent settings, as well as the profession as a whole. Additionally, these learners may then become advocates for child life services in the future.

Hospital Documentation Standards Individual hospitals have established basic standards and policies for documentation that may include: timeliness of response, identification of the healthcare professional, missed opportunities and the format to be used for recording information. Documentation by the child life specialist should include an assessment of the patient and family, identification of a plan of care, interventions based on the assessment, and an evaluation of the child or family’s responses to those interventions. Documentation in the electronic healthcare record (EHR) is now standard practice in many organizations. Hospitals may choose from several different vendors to develop and manage the EHR, and all of these systems require standard definitions of professional work. Child life must be represented during the earliest stages of development of the EHR. Essential for the child life team is that child life specialists are involved in developing the descriptors that will be used to document interventional outcomes. For instance, each profession will have a menu of identified fields that serve as a guide in directing an individualized plan of care for each child and family. It is critical for child life specialists to develop standard definitions of use for every facet of the assessment listed in the child life menu to ensure consistency and clarity. The interventional outcomes included in the child life ser-

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vices menu within the EHR serve to guide practice and reinforce efficiencies that direct a more accountable, productive and standardized child life service delivery across a healthcare system. Some considerations that drive a plan of care include: addressing the reason for a consult, formal and/or informal assessment of the patient, patient acuity, vulnerability or risk level, interventions provided, evaluation of care provided, duration of intervention and the plan for follow-up, if indicated. Other opportunities may exist within the EHR to extend support to a patient by inviting healthcare team members to use the medical record to advocate for a child’s participation in activities supported through volunteer services and/or special programming. Electronic healthcare records allow healthcare partners to view information instrumental in providing real-time decision support. This dynamic is foundational to applying identified strategies in support of a more positive healthcare experience for the child and family. Additional benefits from the EHR exist for child life teams that cross-cover patient care assignments. The EHR serves as a communication tool to support any child life team member taking care of the patient, and is essential in providing continuity of care and a seamless delivery of optimal child life services. Electronic documentation provides a systematic format to view the child’s medical record efficiently and effectively. Standardized templates offer child life specialists a forum to clarify misconceptions in care as well as articulate a clear follow-up plan and highlight the use of formal assessment tools such as the PRAP. For example, a healthcare provider may submit a consult or referral for child life services indicating a child is in need of developmental activities. Once a child life specialist completes an assessment of the patient, he/she may have discovered the child is fearful and withdrawn due to a misunderstanding of the healthcare experience. Proper use of the EHR should outline the assessment and highlight specific facets of the intervention, evaluation and plan of care. Consistent child life clinical practice and use of the EHR have the potential to offer child life programs information to sustain program initiatives regarding staffing, productivity and accountability. Drop down menus or click button functionality allow child life programs a platform for capturing accurate reports. Formatting options for staff to choose from can drive practice standards, foster accountability and offer insight into productivity. For example, the information in reports generated from the EHR system can be used to show an increase in referrals from an area where child life coverage is not adequate to sustain potential growth. This information can be captured in real time and serve as another resource for quality improvement initiatives when shared with hospital leaders. Documentation using narrative or free

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text style may inform others on the team in more detail about the interventions provided by the child life specialist, as well as the response from the child and family to those interventions.

Child Life Departmental Standards The key for successful documentation is the development of standards. The departmental standard should incorporate the institution’s policy and set clear expectations for content (see Appendix D). It should also provide clear standards for recording the outcomes of child life work. As previously noted, documentation, including assessment, interventions, follow-up service plans, discharge plans, and other services should include clear statements of outcome. The statement of outcome should be derived from the goals established for the intervention. For example, a goal established may be that “medical/healthcare play will be provided in order to increase coping.” Therefore, the child life specialist should identify in the follow-up documentation the behaviors that indicate the child is coping better as a result of the play sessions, for example, that the child is less fearful of equipment and better able to accurately explain what will happen during a procedure or to demonstrate the procedure on a doll.

The Child Life Consult Child life specialists receive consults, or requests for their involvement, sometimes verbally or through a more formal consult typically communicated via the EHR. In hospitals where the role of child life is clear and well understood, a general consult may be an adequate means to communicate between professionals and record information for the permanent record. However, if the child life service is new to the hospital, the consult may be unclear because the reason for consultation may not be well understood or articulated by other health professionals. For example, a generic consult form may not give a reason for referral, the service requested or other useful information. A profession-specific consult process, such as the example templates seen in Appendix E, is valuable for helping the child life specialist record service, as well as having additional benefits. The clear description of child life interventions teaches all team members about the role of child life and allows other professionals to easily identify a reason for the referral. The consult provides an efficient tool to facilitate child life’s documentation of the plan of care and lays the foundation for future notes on the outcomes of care. The most important aspect to consider in using a child life referral process is that child life professionals must develop it and it must be approved by the hos-

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pital. In an EHR, a consult for child life services may be generated from a “drop down menu,” listing multiple screening criteria for which child life is often consulted, or paper forms can be developed and used.

Workload Measurement Workload measurement (WLM) is a method for measuring the volume of professional activity (Walsh, 2003; Watts, 1986). Many hospitals use this approach in order to measure staff productivity and compare productivity with workers at other hospitals. It may also be used to report data to healthcare funders. WLM records the service provided by the child life specialist in direct patient care, indirect patient care and indirect service as well. The time spent in each category is recorded either in real time, average time or weighted units. The input of the child life specialist in the development of the WLM tool is critical to ensuring the system will accurately reflect the work of the profession in a particular setting. For example, all workload measurement systems for professionals will include a category called assessment. The assessment work is different in each profession, which is why it is important for each profession to define its assessment category—when a child life specialist records 30 minutes in assessment, for example, everyone is aware of the work that is involved. The WLM provides a standard method of recording workload that yields uniform data for reporting and for permitting peer group comparisons within facilities, regions, or provinces/states. WLM allows the hospital to identify patient-specific resource utilization and cost and provides tangible evidence for justification of resource levels. WLM provides readily accessible information to assist with management decision making such as staff allocation and deployment, and serves as one tool in the evaluation of personnel performance. CONCLUSION Professional work in the healthcare setting is based upon a clear system of assessment, interventions and documentation of outcomes. Child life specialists follow this process as well, and it is critical for child life specialists to formalize this process and share it with other members of the healthcare team. Consistent documentation by the child life specialist results in improved understanding of the rationale for specific interventions and an increased appreciation for the outcomes of child life work. Solid assessment of patients and documentation of services provided will increase understanding and support for child life services and enhance positive outcomes for patients and families.

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REFERENCES Birnie, K., Chambers, C., & McGrath, P. (2014). Systematic review and meta analysis of distraction and hypnosis for non-related pain and distress in children and adolescents. Journal of Pediatric Psychology, 39(8), 783–808. doi: 101093/jpepsy /jsu029 Blount, R., Zempsky, W., Jaaniste, T., Evans, S., Cohen, L., Devine, K., & Zeltzer, L. (2009). Management of pediatric pain and distress due to medical procedures. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (pp. 171–188). New York, NY: Guilford Press. Cavender, K., Goff, M. D., Hollon, E. C., & Guzzetta, C. E. (2004). Parents’ positioning and distracting children during venipuncture: Effects on children’s pain, fear, and distress. Journal of Holistic Nursing, 22(1), 32–56. doi: 10:1177 /089010104263306 Chappuis, M., Vannay-Bouchiche, C., Flockier, M., Monnier, M., Cathieni, F., Terra, R., & Piot-Ziegler, C. (2011). Children’s experience regarding the quality of their hospital stay: The development of an assessment questionnaire for children. Journal of Nursing Care Quality, 26(1), 78–87. French, B. (2013). Brigance Inventory of Early Development III (3rd ed.). Retrieved from http://www.curriculumassociates.com/products/detail.aspx?title=BrigEC IED3 Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R. H., Redburn, L., & Laidley, L. (1998). Psychosocial care of children in hospitals: A clinical practice manual. Rockville, MD: Child Life Council. Gursky, B., Kestler, L. P., & Lewis, M. (2010). Psychosocial intervention on procedure-related distress in children being treated for laceration repair. Journal of Developmental and Behavioral Pediatrics, 31, 217–222. doi: 10.1097/DBP .0b013e3181d5a33f. Humphreys, C., & LeBlanc, C. (2016). Promoting resiliency in paediatric health care: The role of the child life specialist. In C. DeMichelis & M. Ferrari (Eds.), Child and adolescent resilience within medical contexts: Integrating research and practice (pp. 153–173). Switzerland: Springer. Institute for Patient- and Family-Centered Care. (2017). Advancing the practice of patient- and family-centered care in hospitals: How to Get Started. Retrieved from http://www.ipfcc.org/resources/getting_started.pdf IWK Child Life Services. (2015). Child Life Assessment Intervention Plan. Halifax, NS: Author. Jaaniste, T., Hayes, B., & von Baeyer, C. L. (2007). Providing children with information about forthcoming medical procedures: A review and synthesis. Clinical Psychology: Science and Practice, 14, 124–143. Johnson, L. (2005). Cultural influences in children’s healthcare. In J. A. Rollins, R. Bolig & C. C. Mahan (Eds.), Meeting children’s psychosocial needs across the healthcare continuum (pp. 421–453). Austin, TX: PRO-ED. Kain, Z., Mayes, L., O’Connor, T., & Cicchetti, D. (1996). Preoperative anxiety in children. Archives of Pediatrics & Adolescent Medicine, 150, 1238–1245.

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Kain, Z. N., Caldwell-Andrews, A., & Wang, S. (2002). Psychological preparation of the parent and pediatric surgical patient. Anesthesiology Clinics of North America, 20(1), 29–44. Klayman, G., & Staab, J. (2012). Psychosocial risk assessment in pediatrics: Instruction manual. Cincinnati Children’s Hospital Medical Center. Koller, D. (2008a). Child Life Council evidence-based practice statement: Child life assessment: Variables associated with a child’s ability to cope with hospitalization. Rockville, MD: Child Life Council. Koller, D. (2008b). Child Life Council evidence-based practice statement: Therapeutic play in pediatric health care: The essence of child life practice. Rockville, MD: Child Life Council. Koller, D. (2007). Child Life Council evidence-based practice statement: Preparing children and adolescents for medical procedures. Rockville, MD: Child Life Council. Koller, D., & Goldman, R. (2012). Distraction techniques for children undergoing procedures: A critical review of pediatric research. Journal of Pediatric Nursing, 27, 652–681. doi: 10.1016/jpedn.2011.08.001 Koukourikos, K., Tzeha, L., Pantelidou, P., & Tsaloglidou, A. (2015). The importance of play during hospitalization of children. Materia Socio-Medica, 27(6), 438–441. doi: 10.5455/msm.2015.27.438-441 Kronenberger, W., Carter, B., & Thomas, D. (1997). Assessment of behavior problems in pediatric inpatient settings: Development of the pediatric inpatient behavior scale. Children’s Health Care, 26(4), 211–232. Kuttner, L. (2010). A child in pain: What health professionals can do to help. Bethel, CT: Crown House Publishing. LaMontagne, L., Hepworth, J. T., Salisbury, M. H., & Cohen, F. (2003a). Effects of coping instruction in reducing young adolescents’ pain after major spinal surgery. Orthopaedic Nursing/National Association of Orthopaedic Nurses, 22, 398– 403. LaMontagne, L. L., Hepworth, J. T., Cohen, F., & Salisbury, M. H. (2003b). Cognitive-behavioral intervention effects on adolescents’ anxiety and pain following spinal fusion surgery. Nursing Research, 52, 183–190. LeBlanc, C., & Chambers, C. (2013). Child life interventions in paediatric pain. In P. J. McGrath, B. J. Stevens, S. M. Walker, & W. T. Zempsky (Eds.), Oxford textbook of paediatric pain (pp. 543–552). Oxford, UK: Oxford University Press. LeBlanc, C., Naugler, K., Morrison, K., Parker, J., & Chambers, C. (2014). Parent perceptions and satisfaction with inpatient child life specialist interventions and the role of child temperament. Children’s Health Care, 43, 253–272. doi: 10.1080 /02739615.2013.845732 LeBlanc, C., Park, C., Moore, S., & Desai, P. (2016). Chronically ill hospitalized children’s perceptions of ‘play in hospital’: A qualitative descriptive study. Manuscript in preparation. Lindeke, L., Nakai, M., & Johnson, L. (2006). Capturing children’s voices for quality improvement. The American Journal of Maternal/Child Nursing, 31(5), 290–295. Retrieved from http://0-eds.b.ebscohost.com.aupac.lib.athabascau.ca/eds

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Manne, S. (2009). Commentary: Adopting to a broad perspective on posttraumatic stress disorders, childhood medical illness and injury. Journal of Pediatric Psychology, 34(1), 22–26. doi: 10.1093/Jpepsy/Jsn042. McClowry, S. (1990). The relationship of temperament to pre- and post-hospitalization behavioral responses of school-age children. Nursing Research, 39(1), 30–35. McCue, K. (1988). Medical play: An expanded perspective. Children’s Health Care, 6(3), 157–161. Nabors, L., Bartz, J., Kichler, J., Sievers, R., Elkins, R., & Pangallo, J. (2013). Play as a mechanism of working through medical trauma for children with medical illnesses and their siblings. Issues in Comprehensive Pediatric Nursing, 36(3), 212–224. doi: 10.3109/01460862.2013.812692 Ostrenga, M. A. (1980). Guidelines for medical play. Evanston, IL: Hospital Play Equipment. Potasz, C., Vilela de Varela, M., Coin de Carvalho, L., Fernandes do Prado, L., & Fernandes do Prado, G. (2013). Effect of play activities on hospitalized children’s stress: A randomized clinical trial. Scandinavian Journal of Occupational Therapy, 20, 70–79. doi: 10.3109/11038128.2012.729087 Rennick, J., Johnston, C., Dougherty, G., Platt, R., & Ritchie, J. (2002). Children’s psychological responses after critical illness and exposure to invasive technology. Journal of Developmental & Behavioral Pediatrics, 23(3), 133–144. Retrieved from http://aupac.lib.athabascau.ca:4550/resserv Rennick, J. E., & Rashotte, J. (2009). Psychological outcomes in children following pediatric intensive care unit hospitalization: A systematic review of the research. Journal of Child Health Care, 13(2), 128–149. doi: 10.1177/1367493509102472 Salmela, M., Salanterä, S., & Aronen, E. (2009). Child-reported hospital fears in 4 to 6-year-old children. Pediatric Nursing, 35(5), 269–303. Retrieved from http://0web.ebscohost.com.aupac.lib.athabascau.ca/ehost/ Small, L. (2002). Early predictors of poor coping outcomes in children following intensive care hospitalization and stressful medical encounters. Pediatric Nursing, 28(4), 393–398, 401. Small, L., & Melnyk, B. (2006). Early predictors of post-hospital adjustment problems in critically ill young children. Research in Nursing & Health, 29, 622–635. doi:10.1002/nur.20169 Staab, J. H., Klayman, G. J., & Lin, L. (2014). Assessing pediatric patient’s risk of distress during health-care encounters: The psychometric properties of the Psychosocial Risk Assessment in Pediatrics. Journal of Child Health Care, 18(4), 378–387. doi: 10.1177/1367493513496671 Sparks, L., Setlik, J., & Luhman, J. (2007). Parental holding and positioning to decrease IV distress in young children: A randomized control trial. Journal of Pediatric Nursing, 22(6), 440–447. Teaford, P. (2010). Hawaii Early Learning Profile- HELP 3-6. Retrieved from http://www.vort.com/HELP-3-6-Assessment-Manual-2nd-Ed.html Thompson, R., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas.

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Walsh, E. (2003). Get results with workload measurement. Nursing Management, 34, 16. Watts, J. (1986). Workload measurement systems: Their applications and limitations. Dimensions in Health Service, 63, 44–46. Wilson, M., Megel, M., Enenbach, L., & Carlson, K. (2010). The voices of children: Stories about hospitalization. Journal of Pediatric Health Care, 24, 95–102. doi:10.1016/j.pedhc.2009.02.008 Young, K. (2005). Pediatric procedural support. Annals of Emergency Medicine, 45, 160–171. doi: 10.1016/j.annemergmed.2004.09.019 Zemspky, W., Cravero, J., & the Committee on Emergency Medicine and Section on Anesthesiology and Pain Management. (2004). Clinical Report: Relief of pain and anxiety in pediatric patients in Emergency medical systems. American Academy of Pediatrics, 114(5), 1348–1356. doi:10.1542/peds.2004-1752.

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Appendix A CHILD LIFE CONSULT/INTERVENTION RECORD

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Appendix B-1 IWK CHILD LIFE SERVICES

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Appendix B-2 IWK CHILD LIFE SERVICES

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Appendix C COPING PLAN

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Appendix D CHILD AND FAMILY ASSESSMENT STANDARD OF CARE

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Appendix E SAMPLE CHILD LIFE REFERRAL INDICATORS (These typically appear as a drop down menu in the Electronic Health Record): ® ® ® ® ® ® ® ® ® ® ® ® ®

Behavioral concerns related to hospitalization Change in plan of care Change in health status Difficulty coping with medical procedure New diagnosis of chronic illness Patient with Special Needs Scheduled for procedure or surgery Perceived disturbance in family dynamics Recent family stressors Grief issues (patient, family, siblings) Medication adherence Sibling issues Other (entered as free text in comments section)

Chapter 8 PARADIGMS OF PLAY P EGGY O. J ESSEE AND LAURA GAYNARD FOUNDATIONS lay is children’s most powerful tool. It helps children make sense of their world, develop new concepts, increase social skills, gain emotional support, and take responsibility for their actions through meaningful experiences (Hewes & MacEwan, 2006). It is particularly important that children have opportunities for play when they are in stressful situations (Koller, 2008; Ryan, Shelly & Powers, 2017). Adults, however, sometimes view children’s play in traumatic situations as inappropriate or unnecessary. Child life specialists, therefore, often need to articulate to other professionals and parents why play is important. In doing so, they must clearly understand their own philosophy and theory regarding play and why it is essential for all children regardless of their circumstances. This chapter investigates the play of children, particularly children in healthcare settings, as viewed through various paradigms. We have all heard the statement, “Play is the child’s work.” Maria Montessori (1965) made this remark based on her own observations and on the observations of Groos (1914) that the play of young animals mimics the survival strategies of adult animals (p. 180). This idea of defining the state of play in the language of adult work fits very nicely into our contemporary world’s notion of play. Given all the unfolding research on early brain development, windows of opportunity, and children’s sponge-like abilities to learn, the idea that children’s time could be best spent in useful activities that are actually “work” instead of play seems to make sense. Montessori’s motives in stating that play is a child’s work are often misinterpreted and misunderstood. Her writings emphasize that children’s play

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is a kind of fantasy preparation for adult life, not a substitute for work (Montessori, 1965). In fact, many theorists suggest that playfulness, and the ability to play, is a critically important characteristic of humans that promotes rapid adaptation to changing environments (Fagen, 1995; Wicklegren, 1993), allows us to psychologically cope with past and present concerns, and prepares us for our future roles as adults (Bettleheim, 1987; Ryan, Shelly & Powers, 2017; Sutton-Smith, 1982). For professionals who work with children, it’s obvious that play serves an important function in children’s cognitive, physical, social, and emotional development and is essential in executing developmentally appropriate practices (Milteer & Ginsburg, 2012). Yet, as more adult occupations become technologically sophisticated, play tends to be viewed as a frivolous use of time (Ginsburg, 2006; Elkind, 2006). This perspective is often shared by those who work and practice in high-tech medical environments. A comprehensive definition of the role of play in human development and its impact on the universal human experience is elusive. People all over the world experience a “state of play” in varying modes and degrees, yet determining what is play, and what is not play, is very subjective. The topic of play in research is increasingly receiving attention, and recent studies have documented: how play helps both children and adults to develop; the kinds of activities that can best fit play environments; the tools that are needed for play; and what play can tell us about the children’s needs, challenges, satisfactions, and strengths (Bergen, 2015; Brown, 2009). How does this universal, traditional, yet contemporary, phenomenon of play fit into the healthcare setting of child life specialists? What do child life specialists need to know to internalize a philosophy of play that can be a basic guide for program planning and be communicated to others? To begin to answer the first question, play is an arena in healthcare settings where children can exert power, create a sense of comfort, familiarity, and safety, express thoughts and feelings, and make choices. Adults may control the space and restrict time, but children have the tools of fantasy and imagination. With these tools, play opens windows through which children can process their experiences, present and past, and grasp new meaning. The task of child life specialists, then, is to look through these windows of play with children and support them to connect with a variety of experiences that offer control, choice and, ultimately, mastery. The ability to guide children through multiple dimensions and processes of play, according to their developmental and environmental needs, is a competency core to the practice of child life. In answer to the second question, one way child life professionals can develop a strong sense regarding the value of play, in the healing work of

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children, is to place the various aspects of play within our knowledge of child development. This chapter will offer some additional insights into these questions and will consider the varied and complex nature of play. A brief overview of various play paradigms will be provided, in the areas of enjoyment, development, learning, and therapy, and we will discuss these paradigms as seen in children’s ritualistic use of play as flow, comfort, and hope.

Play as Enjoyment The radical idea that children might actually need to play was embodied in the writings of the French philosopher, Jean-Jacques Rousseau (1712– 1778). Rousseau wrote in Emile, his classic book on education, that children had their own unique way of seeing, thinking, and feeling, and adults should allow children the innocence and freedom of childhood by not restricting them to adult ways (Hughes, 1999). However, the English philosopher, John Locke (1632–1704), whose views on the nature of children had strong influence in England and during the colonial period in America, had a different perspective. While Locke did not actually condemn play, he was clear that in the Puritan culture of the times, work, rationality, and discipline were the prime ingredients needed for a child’s development. Even though Locke had a kindly attitude towards children, play was not part of his philosophy. Gradually, as the view of children as miniature adults changed, so did attitudes towards childhood play. The early play theories, from the end of the nineteenth century and the first of the twentieth century, often described play as an instinctive mechanism that led to a number of different outcomes depending on various theorists’ perspectives. For example, Spencer (1873) saw play as a way to release surplus energy. He argued that humans had a specific amount of energy needed for survival and, as survival needs diminished, this pent-up energy must be released; children did this through play (Hughes, 1999). Patrick (1916) suggested an opposite view of play and energy. He theorized the purpose of play as the renewal of energy wherein children used play to avoid boredom while they waited for their energy levels to be restored (Hughes, 1999). G. Stanley Hall (1921), a leading American psychologist from this period, had a unique perspective on the role of play. Although not widely accepted in psychological circles today, Hall developed his recapitulation theory, in which each person’s development reflected human evolutionary progression. According to Hall, a child’s play framed in present experiences might be imitating behaviors of prehistoric ancestors. Another early play theorist who emphasized the instinctual nature of play was Groos (1914) who suggested that play was the body’s natural way of preparing for the tasks of adult life. Even though all these approaches posit some elements of play as a

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pleasurable, recreational activity, it was not until later in the twentieth century that a more comprehensive view, emphasizing the intrinsic motivation of play impacting the cognitive, social, and emotional development of children along various dimensions, was articulated. As we discuss more contemporary views on play, concepts proposed by many of the major theorists in human development are encountered. Scholars have used many approaches when attempting to define, describe, or categorize the phenomena of play. Theorists have typically found play difficult to define, yet there are some general characteristics used to describe play behaviors (Rubin, Fein, & Vandenburg, 1983; Henricks, 2015). Play is intrinsically motivated. This encompasses notions of self-directed activity and freely chosen explorations that lead to self-satisfaction, inherent attraction and a desire for continuation even when adult-guided. Play involves attention to means rather than to ends. Goals are flexible, selfimposed, and changeable. Play may be nonliteral or symbolic. Play may involve conceptualization of objects and/or roles that allow children to symbolically transform their present realities with elements of make-believe. Play may symbolically represent unconscious desires and feelings. Play may be free from external rules. There may be rules within the imaginary context, but there is freedom to spontaneously create and change the rules, a differentiation between play and games, where rules are externally imposed. Play requires active engagement. This may be seen in the concentration, enthusiasm, and joy of children when playing, in the sense of mastery that can emerge from play, in the diminished consciousness of self, and in the sense of freedom from time. (Brown, 2009; Monighan-Nourot, 1990, Thompson & Stanford, 1981)

Knowledge about play, such as typical characteristics and stages, helps child life specialists to articulate the importance of play to those who do not have this information, but we must also value play because it belongs to the children and because it is enjoyable. Care must be taken not to take the joy from play or not to direct and manipulate all the fun out of play with good intentions. The skill of guiding play comes while playing with children, sometimes for children, and always using careful observation and assessment to determine the next step to take.

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Play as Development Knowledge of development throughout the life span is critical for child life professionals. One of the roles of child life specialists is to think of play as a developmental process that proceeds through stages that are linked to, yet separate from, the areas of cognitive, social, emotional, physical, language and gender role development. In addition, this knowledge must be considered within the physical and social constraints that are present in the healthcare setting. Stages of play have been described from numerous perspectives by developmental theorists. Two commonly used systems for identifying children’s early play stages include Parten’s four play categories and Piaget’s theory of play (Weissman & Hendrick, 2014).

Parten’s Theory of Play Parten (1932), an early childhood developmentalist, identified participation of children with others as criteria for her four levels of play. Parten’s stages begin with nonsocial activity, unoccupied, onlooker behavior, or Solitary Play. Infants and very young children most often exhibit solitary play, but Parten maintained that varying levels of sophistication can be observed in this stage of play. Therefore, when older children are observed in nonsocial activity or onlooker behavior, Parten cautioned us not to assume that this behavior is regressive. Children of all ages need to have opportunities for solitary play, given the almost-constant contact that children experience with others throughout their days. Children need solitary play time to fully create and develop their own ideas and to fulfill privacy needs. Parten noted that if older children engage mostly, or only, in solitary play it might be cause for concern. However, some solitary play should be encouraged for all children since those who have learned to be comfortable in playing alone are likely to succeed in working independently later in life (Henniger, 2013; Weissman & Hendrick, 2014). Parallel Play is Parten’s second stage of play for young children. This form of play is characterized by children playing near others, but not with others. Children continue to play independently, but often do so with similar toys as their peers around them. There is an increased awareness of the children nearby, but little direct interaction, although toddlers often display pleasure in having peers who are engaging in similar activities close to them. Parallel play is frequently utilized by 3-year-olds as an effective way to enter groups. Older toddlers first play next to others, and then with their peers, as they play their way into a group activity (Feeney, Moravcik & Nolte, 2013).

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Parten used the term Associative Play (children interacting by exchanging toys and conversation) to describe her third stage of play. In this stage children interact, but there is no organization to the play or among peers, and each child plays independently within the group. Associative play is most often observed in young preschool children when the interactions (or associations) among children are more important to them than the play activity itself. Children often move quickly from one activity to another, interacting, talking about their play, loaning materials and sharing props, but no true cooperation or negotiation is observed (Henniger, 2013; Feeney, Moravcik & Nolte, 2013). Parten’s fourth stage of play is the point where children truly play together, take turns, assign roles, and organize pretend play themes and scripts. Parten referred to this, her most social stage, as Cooperative Play (Weissman & Hendrick, 2014). In this form of play, children are able to demonstrate a focus on group projects, a division of roles, sustained play themes and cooperation to attain a simple group goal. Cooperative play is most often observed in older preschool and young elementary age children (Henniger, 2013).

Piaget’s Theory of Play Parten divided her stages of play based on how children interact with others. In comparison, Piaget (1962) described four general stages of play based on how children utilize play materials. For Piaget, play begins with the Functional Play stage. In the first two years of life, children play by engaging in simple manipulations of objects, and by imitating movements and utterances of others. Functional play is sometimes referred to as “practice” play because children are often observed consolidating skills via repetitive actions and finding pleasure in these repetitions. An infant shaking a rattle over and over, or exploring toes, or a toddler learning to walk are all demonstrating functional, practice play (Henniger, 2013). Infants and young toddlers explore the sensory and physical qualities of objects and practice motor skills via these actions. Although this form of practice play is most often observed in the first two years of life, it will continue to be demonstrated throughout a child’s behavior, in differing forms, even into the teen years (Feeney, Moravcik & Nolte, 2013). Constructive Play is Piaget’s second stage and is characterized by goaldirected activities, and play during which children create products. Children also exhibit new manipulations of objects in this stage. Examples of this form of play include using real materials to build a model of an object according to a plan, such as creating a pie with play dough for use in the housekeeping

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corner or building a road with blocks for the classroom town. When in this stage of play, children can also be observed independently developing simple dramatic play themes. Constructive play is most often observed in children 2 to 4 years of age (Henniger, 2013; Weissman & Hendrick, 2014). Piaget referred to his third stage of play development as Dramatic or Sociodramatic Play. In this stage children create imaginary roles and interactions and use objects, actions or words to represent items or situations. This form of play is similar to that observed in Piaget’s second stage, except that the dramatic play increases in frequency, the play themes tend to be more sophisticated, and the play is much more social (i.e., “sociodramatic” play). Dramatic play characteristics reflect those exhibited in Parten’s fourth stage, “Cooperative play.” Children can be observed sharing play themes, mutually determining dramatic play roles and negotiating scripts and actions. Children in this stage must use considerable intellectual skill to imagine the sequence they will play out with their peers and negotiate their desired roles (Feeney, Moravcik & Nolte, 2013; Henniger, 2013). In Piaget’s fourth play stage, Games-With-Rules, children recognize and follow preset rules according to the goals of a group or game. Children in the early elementary grades begin to enjoy games with rules including board games, simple card games, computer games and organized team sports. Piaget maintained that skills (such as cooperation and negotiation practice) gained in earlier stages of play lead to the development of more sophisticated behaviors, demanded in this stage, such as the ability to adjust to others’ needs and control behaviors within limits. According to Piaget, the value of this stage cannot be stressed enough. Through game playing, children learn how to most fully cooperate, resolve conflicts, and express themselves to others (Feeney, Moravcik & Nolte, 2013; Piaget, 1950).

Play Development of Infants and Toddlers There are trends in play development at each stage of life. During infancy and early toddlerhood, the primary mode of play is exploratory and sensorimotor. Play at this stage will center on visual and motor actions (mouthing, shaking), on objects and on people, as infants and young toddlers actively explore their world, and their own capabilities, through simple non-goaloriented and repetitious play (Murphy, 2008). Within months of their first year, infants will gradually move practice play into purposeful manipulations of materials. They will begin to reach for a mobile, deliberately kick to make a bouncy seat go up and down, focus on their face in a mirror, grasp a rattle, and play peek-a-boo with caregivers. During the second year, young toddlers can be observed stacking blocks, walking with a push toy, imitating behaviors of caregivers or older siblings,

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sorting toys by shape and by filling containers and emptying them out (Murphy, 2008). The play actions of infants and toddlers are categorized by Piaget (1962) in his sensorimotor substages of cognitive development. In Piaget’s theory, children use “practice play,” or repetition of motor actions, to consolidate and reorganize behaviors into symbolic play. This pretend play truly emerges during the second year of life. As in any setting designed for infants and young children, healthcare environments should include toys that are responsive to infants’ control and needs. Toddlers need interactional play items that offer visual, auditory, and tactile stimulation, in addition to exploration of cause and effect. These types of toys might include shape sorters, stacking blocks, pop-up toys and squishy balls.

Play Development of Preschoolers Piaget characterized the ages of two to five as the “preoperational stage,” with play serving an assimilative function, allowing children to consolidate their experiences (Piaget, 1962). For example, as children move from repetitive, functional play with objects, their play shifts to assimilating the object, such as a ball, to an action scheme that they already possess, such as rolling, but they must also change or accommodate those actions to fit the nature of the object, such as size and weight of the ball. As a result, adaptation constantly takes place through the medium of play. The preschool years, termed by Singer and Singer (1979) as “the golden age of socio-dramatic and make-believe play,” (p. 195) are characterized by the gradual expansion of children’s play into very complex symbolic themes. Play for preschoolers often includes the simple imitation of adults and moves into more intense themes reflecting real-life roles, home relationships, expression of physical and emotional needs, forbidden impulses, and the reversal of roles (Singer & Singer, 2015). All forms of social play with peers become more evident as play with adults decreases. Play with physical components starts to become evident. For example, rough-and-tumble play makes its appearance during the ages two to five. However, rough-and-tumble play must be distinguished from vigorous activity play. Energetic motor play can be solitary or social, while rough-and-tumble play always has a social component. Rough-and-tumble play usually contains elements of mock aggression, but vigorous activity does not (Gnaulati, 2013; Hughes, 1999). Symbolic Play. Beginning somewhere between eighteen and twenty-four months of age, symbolic games emerge. According to Piaget, this is an indication that children are developing the ability to transform direct sensory

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data into abstract mental images. Children at play actively do things that represent personal images of their own experiences. For some children, this may mean pretending to wrap a doll’s broken leg, for others it may mean serving hamburgers at a pretend McDonald’s. This sort of symbolic play action is based on similarity between the available play object and the unavailable object that it represents. Piaget links symbolic play with general intellectual growth. He states that real symbolic play develops rapidly when the child learns language, and is characteristic of the period between two and four years (Piaget, 1962). During the years between two and seven, inner fantasy is the motivation of play. Imitation in this fantasy form reaches its peak when symbolic play almost totally consists of personal, real-life experiences, which are channeled into children’s own subjective purposes. Such play constitutes children’s efforts to recreate experiences so they can best be coped with, and to repeat past experiences in order to enjoy or reframe them in acceptable and understandable ways (Nourot, 2015). According to Smilansky (1968) sociodramatic play is motivated by the need of children to model adults in their environment in their thoughts, feelings, actions, and reactions, and to view themselves as other persons and act accordingly. Through symbolic dramatic and make-believe play, children of this age project and enact behaviors that are forbidden to them in real life. In this type of play, children reconstruct frightening or painful situations, unbearable to them in reality, and put them into manageable form. Hospitalized children often find themselves in both frightening and painful situations. For this age group, as well as some older children, symbolic and pretend play is an avenue for coming to terms with the reality of difficult situations. Not all young children are able to play at the developmental level one might expect, and some of these differences may first be noted when symbolic play emerges. Children with developmental disabilities, whether physical, mental or emotional, may play in atypical ways. Children with special needs, such as those with Down Syndrome, hearing impairments, or autism may not engage in symbolic play at the level or intensity as more typicallydeveloping children (Mindes, 2015; Slade & Wolf, 1994). If a basic socialcommunicative system is in place, varying patterns and rates of symbolic play tend to emerge. If this communicative system is not in place, the processes of symbolization are atypical and disordered. Cultural background, race, gender and socioeconomic class may all impact how children play. Such factors affect type of play roles and props selected, the contact patterns demonstrated within children’s play, the status of play relationships, identified play themes and rituals, and the language reflected during play (Ramsey, 2015). Children from cultures that are less technologically advanced and those from lower socioeconomic classes play

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in ways that reflect the lack of technology. Although earlier research indicated that children from lower socioeconomic classes, and less developed societies, played at less sophisticated levels of play, more recent studies show that factors such as culture and poverty may only produce variations in structural features of play, such as play themes and content. However, features such as “sociality of play, elaboration of language, and imagination” ( Johnson, 2015, p. 28) tend not to differ across cultures (Ramsey, 2015). Recent research, reported by the Association for Childhood Education International (ACEI), found that children who engage in complex forms of sociodramatic play, compared to non-players, display greater language skills, better social skills, more empathy, greater imagination, and a stronger understanding of the communication of others (ACEI, 2016). Similar research indicates that complex sociodramatic play can be facilitated through education that includes active, hand-on activities, open-ended creative play, caring human relationships and teachers who set the stage for play in a way that encourages children to stretch beyond their comfort zones ( Johnson, 2015; Ramsey, 2015). Smilansky (1968) suggests that the parental role and the system of social intercourse inside the family have an impact on children’s abilities to engage in increasingly complex symbolic play. Higher levels of developmentally appropriate symbolic play may be fostered when parents and other caregivers reinforce imitation by teaching a step-wise, versus a global, approach to mastering independent activities, offer explanations of rationales supporting parental behaviors and roles, and institute active listening and responding (Smilansky, 1968).

Play Development of School-age Children School-age children exhibit a growing concern with having things appear “real” during their dramatic play. Often, the group work and social interaction involved in planning play become the focus rather than the play itself. This shift forms the basis on which a competitive spirit in play, apparent in competitive play and games-with-rules, develops during the elementary school years. The regular development of social interaction experienced by children aged seven and older brings a gradual decrease in, and, finally an end to symbolic play (Piaget, 1962). This decrease in children’s symbolic play is linked to general development and active participation in other areas to which play activity is transferred. Thus, the play of elementary-age children moves from the central role of assimilative learning of early childhood to the less central role of accommodative learning. During the concrete operational stage of cognitive development, children’s thinking becomes more orderly, more structured, and

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more logical (Piaget, 1962). As a consequence, the play of school-age children will be more realistic and rule-oriented and will reflect a developing need for order. Complementary role games, such as construction projects, puppet shows, word games, chants, and competitive role games, such as card, board, and computer games, as well as organized physical games, become a major component of the play of school-age children (Bergen, 1987; Bergen & Fromberg, 2015). Acceptance by peers becomes of great importance to this age group, and play often reflects a strong need to belong. Although the composition of a school-age peer group may be variable with changes made on a week-to-week basis, the peer group will reflect definite, and often rigidly held, rules. Differences of any kind may not be tolerated, and members of the group excluded, if the rules are not rather arbitrarily accepted (Dodge, 1983; Murphy, 2008). The Eriksonian need for industry can also be seen in play of school-age children as they demonstrate to themselves and others that they are competent, have talents and skills, and abilities (Erikson, 1963; Weissman & Hendrick, 2014). Even though Erikson was not speaking specifically of play when defining Industry versus Inferiority in the Eight Stages of Man, the ego-building sense of mastery that can be seen in the process of play activities, such as producing crafts, building forts and the producing of “products,” is clear.

Adolescents As adolescents and, ultimately, adults move from concrete operations to thinking in formal operations, play’s outward manifestations change and become miniaturized, socialized, and abstracted (Bergen, 1987; Steinberg, 2010). This is seen through doodling, daydreaming, symbolic board games, and participatory and non-participatory sports. The adolescent’s quest for acquisition of skills and development of individual talents reflect this growth of self-awareness and need for identity clarification. Csikszentmihalyi (1979) describes this adult-like play in terms of flow. Play becomes the training ground for a more adequate adult life, (i.e., living at optimal capacity, p. 275) and includes specific activities such as browsing the Internet, watching television, listening to music, hanging out with friends, shopping and playing video games. Research shows that adolescents’ moods are most positive when they are engaged in structured leisure activities (“play”) than at any other time including when in class or during unstructured leisure activities (e.g., spending time with friends, playing video games). Structured leisure activities typically involve peers who continue to play a crucial role in adolescents’ development of identity, autonomy, intimacy, sexuality and sense of achievement (Steinberg, 2010).

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Play as Learning Among those who view play as learning is Fredrich Froebel, the nineteenth-century educator who gave status to play during the kindergarten movement. Froebel stated that play needs to be cherished and encouraged for it is in free play that children reveal their future minds (Froebel, 1887). In the beginning of the United States’ nursery school movement in the early 1900s, play began to be accepted as a legitimate educational activity and as a potential tool for learning (Bergen, 1987; Lifter, Foster-Sanda, Arzamarski, Briesch & McClure, 2011). Maria Montessori observed children’s play and developed an activity-based program known as the Montessori Method (Montessori, 1973; Wolf, 2005). Montessori’s program involves children playing and manipulating materials in ways that have true meaning in their lives. During the twentieth century, play came to be viewed along a variety of dimensions. For example, in the previously-discussed work of Jean Piaget, play is viewed as a tool that aids in intellectual growth. He described play as assimilation where children assimilate or solidify their present knowledge through play activities. Children distort reality to fit their own present knowledge. In other words, they incorporate new material into already existing cognitive structures. Children use the process of assimilation when they decide that a box is not a box, but a space ship capable of interplanetary travel. While play is not synonymous with learning in Piaget’s cognitive theory, it can facilitate learning by consolidating newly learned behaviors (Hughes, 1999; Lifter, Foster-Sanda, Arzamarski, Briesch & McClure, 2011). Living and writing at the same time as Piaget was the Russian psychologist, Leo Vygotsky (1962), who described play as a valuable component of young children’s cognitive development and as the leading facilitator of children’s ability to think abstractly within the social-cultural and historical settings of children’s worlds. Vygotsky suggested that Piagetian theory sometimes ignored the larger social context and was limited to his “special child milieu,” and, therefore, was not a universal phenomenon. Unfortunately, Vygotsky died almost 50 years before Piaget, and the intellectual debate that could have been possible between these two giants of developmental theory never occurred. Play, however, was the cornerstone of cognitive development for both Piaget and Vygotsky. As children play, they build images and products that simulate reality. Piaget calls this “adaptation.” This process enables children to construct their own knowledge in present time. Vygotsky sees this process as a future-oriented phenomenon. Play moves children into the “zone of proximal development” which takes them along an oscillating continuum into higher levels of thinking (Fromberg, 2002). The “zone of proximal development” is Vygotsky’s term for the distance between what

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children can do without help and what children can do through interaction with skilled helpers. It is within this zone that children’s potential for new learning is strongest (Fabes & Martin, 2001). Brian Sutton-Smith, a contemporary researcher of children’s play, maintains that play is the comfortable environment in which children learn to solve different kinds of problems. When they are faced with the more complex reality of the world, they are able to apply the learning that took place during play (Sutton-Smith, 1979). This relationship between play participation and general adaptation is a way of learning (Pellegrini, 1995). Play is one condition for learning that children can control. Quantitative, physical, social and representational knowing are separate strands of learning mastery in young children (Fromberg, 2002). Given that the human brain works in connected and integrated ways, effective teachers weave these strands into activities organized around children’s dynamic themes of play. As an example, a primary tool of the stress-coping model for child life specialists is the “teaching” of basic information about a condition or impending procedure to children and families (Wolfer, Gaynard, Goldberger, Laidley & Thompson, 1998). A possible objective of such teaching is to provide children with a developmentally appropriate understanding of an upcoming event. Play is the vehicle through which children can best internalize new information. The use of dolls or stuffed animals and manipulation of the potentially threatening equipment in a “playfully serious” manner are ways that can help children process the new material. Through play, children are actively engaged in mastery whether via cognitive accomplishment or in the sense of control and of “knowing” one’s environment (Loftin & Wilkins, 2016). Play is the primary communication tool for children, an intrinsic motivator that allows for the natural integration of meaning, process and mastery for a developing child (Banbury, 2016; Ryan, Shelly & Powers, 2017).

Play as Therapy A psychoanalytic interpretation of play suggests that young children use play as a medium for self-expression that can reduce anxiety caused by internal conflict. It has been suggested by many theorists that play serves as a neutralizing medium by which young children manipulate traumatic or anxietyinducing situations in an attempt to gain mastery over the event (Axline, 1969; Csikszentmihalyi, 1975; Erikson, 1959; Freud, 1928; Moustakas, 1959). We can think of this track of therapeutic play having its beginnings in the psychoanalytic theory of Sigmund Freud (1856-1939) and his daughter, Anna Freud (1895-1982). According to psychoanalytic theory, play allows children to explore unwelcome feelings or socially unacceptable thoughts via a familiar and comfortable medium, without the fear of adult disapproval.

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Anna Freud (1928) began using play to establish therapeutic relationships with her child patients. During the same time period, Melanie Klein (1932) proposed using play as a direct substitute for verbalizations during children’s therapy sessions. Whether children were emotionally disturbed or not, Klein felt that play was the natural medium of expression for young clients. From Klein’s point of view, play was the childhood equivalent of free association. Erik Erikson’s views on play also reflect the psychoanalytic perspective. Erikson (1959) suggested that play provides young children with a way of safely processing difficult experiences and restoring a sense of mastery over these situations. Why is play so essential for understanding the thoughts of children? Over the years, psychologists have provided several answers to this question (e.g., Axline, 1969; Landreth, 1982; Moustakas, 1959; Schaefer & O’Connor, 1983). Some of these are: 1. Play allows children to communicate feelings effectively and naturally. 2. Play allows adults to enter the world of children with mutual recognition, acceptance, and temporary power-sharing. There is less reason for children to feel threatened by an adult. 3. Observing children’s play leads to adult understanding. 4. The pleasure of play allows children to relax and, therefore, anxiety and defensiveness are reduced. 5. Play allows children to release feelings that might be otherwise difficult to express openly. It allows them to use play materials in aggressive, hostile ways without fear of reprisals. 6. Play allows children to develop social skills that might be useful in other situations. 7. Play allows children to try out new roles and experiment in a safe environment using a variety of problem-solving approaches (Ray & McCullough, 2016; Stagnitti & Cooper, 2009)

The non-directive relationship approach to therapeutic play emphasizes the therapist’s role in providing an environment in which children feel accepted. The therapist communicates feelings of warmth and reflects children’s feelings, giving them the time and permission to lead the way through therapy. Basic to this approach is the assumption that children have within themselves the motivation and ability to initiate positive changes in their lives (Axline, 1969). Although child life specialists use play to achieve a number of varied goals, using play in a true therapeutic manner includes three main objectives: (1) to establish rapport, (2) to promote observation and collect useful data, and (3) to interpret behaviors and understand how children are making sense of their healthcare (stressful) situation (Esman, 1983; Hubbuck, 2009). Child

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life specialists often use therapeutic play to also meet these objectives: • • • • • • • • • • • •

Optimize development and meet holistic needs of children Promote relaxation Divert attention Facilitate socialization Enhance parent/family-child interactions Prepare children and families for healthcare procedures Reduce distress, sadness, fear, boredom and other feelings associated with illness, injury and healthcare. Increase realistic understanding of healthcare situations. Normalize the healthcare environment. Facilitate effective coping and emotional well-being. Enhance expression of feelings. Increase a sense of safety, control and security (Hubbuck, 2009; Tonkin, 2014).

The play materials necessary to accomplish these goals should be simple, lend themselves use in many ways, be open-ended, and allow for expression of feelings. Examples would be drawing paper (not coloring books), crayons and markers, play dough or modeling clay, blocks, dolls, puppets, and cars and trucks. Other types of toys, equipment, or craft materials are used to fulfill different play objectives for children depending on their needs and developmental age. For hospitalized children, the efficacy of play is enhanced through the use of familiar, developmentally appropriate toys and activities that foster security, control and emotional support, as well as toys that are relevant to children’s medical conditions and aid in the “work of worrying” (Kampe, 1990; Tonkin, 2014). The symbolic material that emerges from play sessions can offer child life specialists clues about different aspects of children’s inner lives (Irwin, 1983; Parson, 2009). Through observing children’s play, and actively listening to their stories, whether they are fantasy based or grounded in the world of reality, child life specialists have access to children’s worries, wishes, conflicts, and the defenses that are being used. During the process of pretend play, children demonstrate their own views of themselves and others, including the roles they and the people around them may assume. Children also reveal, via play, how they struggle with or avoid conflict. All of these observations allow specialists to better understand children’s usual way of viewing the world, their habitual reasoning and thinking patterns, including intellectual capacities and problem-solving abilities (Irwin, 1983; Mechtel & Stoeckle, 2017). It is assumed that psychologically healthy children are able to use play to organize, articulate, and master those aspects of life that would otherwise cause strain, and that play is the medium through which children’s inner

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worlds can be seen and better understood. However, some children do not easily engage in play or may totally stop playing (Cordier & Bundy, 2009). Children who have experienced overwhelming stress or trauma, either sudden or continuing, may find ordinary play resources insufficient (Bolig, Fernie, & Klein, 1986; Mainemelis & Ronson, 2006). There are also children who may be developmentally or cognitively deficient in particular areas that would restrict play from fully developing, specifically in language development and symbolic representation. Children may experience regression or fixation in both the form and content of their play, or children’s environments (human or physical) may be deficient in factors that nourish and encourage symbolization (Irwin, 1983; Mindes, 2015; Orr, 2003). To facilitate therapeutic play, adults may need to provide raw materials and facilitate the use of these materials, directly or indirectly, as a co-player (Smilansky, 1968; Hewes & MacEwan, 2006). According to Bodrova and Leong (2015), adults are needed to provide a context within which children’s meaningful play can flourish. To be effective, adult intervention must allow opportunities for children to be emotionally involved in the play and facilitate resolutions to the issues children demonstrate in the play (Kampe, 1990). This requires knowledge of child development and the impact of psychic stressors faced by children in traumatic and unfamiliar situations. This does not negate the value of families, medical personnel, and others playing with children in healthcare settings. It does say that the role of child life specialists, in assessing anxiety, determining coping capabilities, and planning therapeutic play opportunities, becomes more demanding. The connections between these approaches to play, theoretical and developmental, were stated very succinctly by Petrillo and Sanger (1980). The authors observed that play was an activity that involved reason, imagination and attention on one hand, and motivated feelings on the other. The challenge for child life specialists is linking these elements, during observation of children’s play, so that the status of mental development can be interrelated with the emotional state. Oremland (2000) describes these connections as “play partnerships.” She also suggests the essence of the play partnership, as demonstrated by child life specialists, cannot be systematically described in existing research, but evolves as each individual, ongoing relationship progresses. EXPANDED PARADIGMS OF PLAY To this point, chapter content has reflected more traditional paradigms of play as discussed in the literature. The remainder of the chapter presents additional paradigms and different ways of looking at play as related to child

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life professionals. These expanded alternatives are certainly not suggested as substitutes to those that form the foundation of child life specialists’ play interactions with children, but are offered as additional ways to view a core aspect of specialists’ professional role. The use of ritualistic modes of play (i.e., play that offers children cathartic release under guidance) will be addressed in terms of flow, comfort, and hope. In the process of considering additional paradigms of play, opportunities arise to expand one’s knowledge base, discover new aspects of personal growth, and enrich interactions with children, thus creating more effective child life specialists.

Play as Flow Mihaly Csikszentmihalyi (1997), a psychologist and play researcher, found that those individuals who get the most pleasure from play enter into a mental state that he calls “flow.” This is a state in which people are fully in the moment, totally consumed with their playful pursuits and intrinsically rewarded by spontaneous joyful feelings that accompany these experiences. Flow is a state of self-forgetfulness, the opposite of rumination and worry. Instead of being lost in nervous preoccupation, people in flow are so absorbed in the experience at hand that they lose all self-consciousness (Henricks, 2015). This view of play as offered by Csikszentmihalyi (1997) is composed of different qualities of experience. Csikszentmihalyi argues that play is too often thought of as something a person does, rather than something a person feels or experiences. In contrast to many other play researchers, he has chosen to study playfulness as a phenomenon, rather than play as an activity (Henricks, 2015).

Characteristics of Flow Csikszentmihalyi (1997) maintains that an extremely high degree of concentration is, perhaps, the chief characteristic of flow. Action and awareness merge, and the perception of time expands or compresses for the player. During the experience of flow, there is also a general feeling of control; a feeling of influencing whatever is happening, and a merging with the environment or process. The experience of “flow” can be momentary or long lasting, and during this time the brain “quiets down” in the sense that there is a lessening of cortical arousal. This means that the brain is working very efficiently and the person is relaxed, yet focused, during flow. When the brain is operating at peak efficiency, as in flow, there is a precise relation between the active areas of the brain and the demands of the task (Thomson & Jaque, 2016).

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When children experience flow, they are living at optimal capacity, they are actively engaged in the present and they are facing life with feelings of control and opportunity. It can be argued that mastery in any area is spurred on by the experience of flow, that the motivation to get better and better at something, be it playing the violin, dancing, or boarding, is at least in part, to stay in flow while doing it. The state of flow creates a compelling, highly motivating feeling of mild ecstasy that seems to be a by-product of the heightened focus that is a requisite of flow (Henricks, 2016). Csikszentmihalyi maintains that activities that are either too difficult or too easy, as determined by each individual, are seldom considered play. In order to be play, an activity must ordinarily be difficult enough to be interesting, but not so difficult that it is impossible. Often the challenge is clearly defined, as in card or board games. In the case of pretend and physical play, the challenge is open-ended, as much up to the player as is the solution. Play is at its best when the challenge nearly matches the skill of the individual. As long as a reasonable challenge exists, the activity is apt to be considered play (Csikszentmihalyi, 1997). This condition is depicted in Figure 1. When the opportunities for action (i.e., the challenge of the activity or situation) are perceived to overwhelm the player’s capabilities, the resulting stress is experienced as anxiety. The state of flow is felt when the opportunities for action are in a balance with the player’s abilities or skills. The experience then has a feeling of purpose and selfcontrol. When one’s skills or abilities are greater than the opportunities for using them, a state of boredom results, which can fade into anxiety when the ratio between skills and opportunities become too large (Csikszentmihalyi, 1975). Flow, as play, is always voluntary and very individually defined. It can be one of many kinds of experiences: social, kinesthetic, imagining, reading or observing (Thomson & Jaque, 2016). Hence, the same activity for one person can be play and yet not be play for another. For example, what a 2-yearold considers to be play might be considered boring for a 6-year-old. Similarly, an activity may feel like play at one time for an individual and not feel like play at another time for the same individual, such as when a child’s brain is working less efficiently because of nervousness or fatigue. Given the characteristics of flow experiences reviewed here (i.e., intense concentration, merging of self with the environment and the activity/process, voluntary and rewarding nature, decreased awareness of problems and an ideal balance between tension and boredom), flow can be considered a form of escape (Thomson & Jaque, 2016). However, Csikszentmihalyi (2000) questions whether play as flow can be considered totally outside of ordinary reality. He maintains that an experience is not defined as play “because it sus-

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Figure 1. Model of the Flow State. Source: Adapted from Csikszentmihalyi (1975).

pends or evades the rules of reality but because the players freely accept the goals and rules that constrain the actions, knowing full well that he or she need not play” (Csikszentmihalyi, 1981, p. 19). Csikszentmihalyi also calls attention to the fact that play does not ignore reality. It is always about things that exist in reality, although it usually involves a change of perspective on the part of the participant to affect a temporary transformation of some form (e.g., child playing the role of the nurse, or taking the part of the mother in separation play). Hence, play should always be taken seriously. Flow and Child Life Practice. Children who cope with disability, chronic illness, frequent healthcare, or are recovering from some other form of trauma, need and desire avenues of escape such as that derived from flow experiences. When working with children, it is possible to watch the phenomenon of flow unfold before our eyes. For example, observing a young patient challenging oneself to place a cast on a doll, watching a child learning to “pop wheelies” in a wheelchair, or seeing a preschooler intently recreating a recent separation experience with family figure dolls, can reveal children immersed in a state of flow. One might question whether children engaged in these forms of play truly pursue them for the purpose of experiencing flow. It is possible to explain the motivation of children who are coping with stress to engage in

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play for reasons other than to experience flow. As previously reviewed in this chapter, we know that child life specialists utilize play to benefit children for a variety of reasons. It is also possible that children may sometimes play simply to immerse themselves in the experience of flow. Young patients may seek out play experiences to escape from worries, to become one with the activity, lose themselves in the moment at hand, and forget for brief amounts of time that they are ill, injured, or otherwise stressed. One can often observe a fine balance between tension and boredom in children’s play experiences. For example, “Can I get the cast finished before it dries?” “How far can I get the wheels off the ground before I begin to fall backwards?” “How close to reality can I portray the separation experience before I feel anxious?” As Csikszentmihalyi (2000) has commented about other behaviors that are considered flow experiences, play that focuses on “serious,” real-life themes (e.g., illness, healthcare, and other traumas) has inherent in it some degree of tension, yet lacks the “worry” (that might end the play) since “it is just pretend.” Children engaged in play as flow appear free of the problems that had so recently haunted them, even though the context or theme of their play is quite serious, such as reenacting a medical procedure, engaging in separation play with a child life specialist, or playing in a wheelchair in which one has been confined. When observing such play, one can also observe the intensely focused attention of children and the manner in which they become one with the activity. It is in the course of such serious play that children are apt to be entirely focused on the activity, and least aware of the environment and activities taking place outside of the play experience (Gaynard, 2015; Oremland, 2000). This demonstrates the all-consuming aspect of play that Csikszentmihalyi (2000) maintains is central to the experience of flow. As is also characteristic of flow, children tend to find these play experiences rewarding and pursue them on a voluntary basis prompted by intrinsic motivation. This is true even when children are engaged in adult-guided play, for it is never maintained by child life specialists unless the process provides pleasure and enjoyment for children (Burns-Nader & Hernandez-Reif, 2016; Gaynard, 2015). Flow and the Healthy Self. Supporting and facilitating flow experiences with children can also enhance the awareness of the “healthy self,” which is essential for children who are sick, injured, disabled or traumatized (Tonkin, 2014). Often, children’s healthy parts are buried under physical or emotional symptoms, hidden behind overwhelming feelings of helplessness, or trapped in unhealthy or disabled bodies (Orr, 2003). Facilitating flow experiences via play helps children to engage in dynamic interactions with the body, mind and spirit that can rebalance the asymmetry created between ill-

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ness (physical or mental), disability and health (Hubbuck, 2009). Children are able to connect with their healthy selves while finger painting in response to music, “dancing” with their eyes, noses and heads to their own unique rhythms, or moving their wheelchairs through the challenges of an obstacle course. In each of these peak experiences, they are reclaiming and expressing parts of themselves that continue to give them pleasure; rediscovering portions of themselves that cause delight. This can be extremely meaningful and empowering for children who may have lost touch with their healthy parts (Olson-Morrison, 2013; Tonkin, 2014). The physical and emotional effects of illness, disability, trauma and treatment can be children’s worst enemies in their struggle to maintain a continuous sense of identity with their previous selves. By entering into the all-consuming state of flow, children can lose their self-consciousness, enjoy being one entity in body, mind and spirit, and experience a sense of overall wellbeing (Olson-Morrison, 2013; Orr, 2003). The focus is changed from the unhealthy or different self, which often demands uneven attention in the lives of the children with whom we work, to the healthy self. This provides children with an increased awareness of their capacity to respond positively to others, their environment, and themselves—to create, relax and find joy in their beings. Facilitating playful flow experiences that lead to feelings of wholeness can promote a connection with children’s healthy parts once again (Thomson & Jaque, 2016; Sourkes, 1995).

Play as Comfort All humans need, and seek out, places of comfort, and we all need to return to our places of comfort on a regular basis to regroup and heal (Landreth, 1994). This is particularly true when one is stressed. On a daily basis, a place of comfort for adults may be something as simple as a favorite rocking chair or a soak in a hot bath. On a larger scale, a place of comfort might be a mountain cabin tucked away from the busy, crowded city life. Activities also provide individuals places of comfort, as when children are calmed by watching a favorite video over and over, or one finds solace in long, solitary walks. One’s place of comfort can focus on highly idiosyncratic needs, and, therefore, be quite unique. However, what all places of comfort have in common is that they provide individuals with a sense of safety because it is impossible to feel comfortable if we don’t first feel safe (Crenshaw & Van Hollander, 2012). The need for places of safety and comfort, specific to each person’s needs, is clearly illustrated in the children’s book, The Kissing Hand (Penn, 1993). In this story, a mother raccoon is preparing her child to enter school

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for the first time. The young raccoon worries about missing his mother while at school all day. The mother reassures her child that he will be fine without her, that it is natural for children to leave their mothers and go off to school on their own. The mother devises a creative plan to support her child in his transition from home to school. As the mother raccoon tucks her child in bed on the eve of his first day of school, she takes one of his hands and places a kiss on the inside of his palm. The mother raccoon then closes her child’s fingers tight around the kiss and explains that when he thinks of her or misses her, he is to place his palm next to his cheek. In doing so, the young raccoon will know that his mother’s love is always close at hand and he will feel comforted. Just as the mother raccoon created a unique way for her child to return to a place of comfort while at school, child life specialists create avenues for children to return to places of comfort when we facilitate their playful pursuits. Play is one of the few places of comfort that children can return to on a regular basis during times of stress. Play provides children a place where they can restore themselves, a place that has healing potential, a place of safety.

Intrapersonal Aspects of Comfort Play During play, children connect with themselves finding comfort not only in the process of play but, also, in the grounding of self in a familiar, safe activity. This intrapersonal function of spontaneous play can enable children to explore, resolve conflicts, master situations, and understand mind, body and a world on their own (Milteer & Ginsburg, 2012; Gitlin-Weiner, 2015). Carl Jung, an early twentieth century psychologist, maintained that children have within themselves the ability to heal, if provided an appropriate template to do so (Allan, 1988). Since it is such a universal place of safety and comfort for all children in almost all circumstances, play creates an ideal template for children to heal themselves. Some play theorists and researchers maintain that play “represents a ‘safe-haven’ for children to learn about themselves . . . and to acquire skills and knowledge that will assist them throughout their lifetimes” (Coplan, Ooi, Kirkpatrick & Rubin, 2015, p. 103). Even in extremely harsh environmental contexts, such as concentration camps, the Japanese American internment camps during World War II or in dismal orphanages and workhouses, children have sought play opportunities in imaginative, creative and expressive ways (Barnes, 2015). Children have universally, and in the direst of circumstances, sought refuge, relief and pleasure in the play they created. The reasons why children continue to create playful experiences, alone and with others, in the face of extensive stress and challenge, are numerous

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and will vary depending on which theories are applied to the play behaviors. However, perhaps one reason children display the irrepressible need to play, even in the face of extreme adversity, is the intrapersonal aspect of play that compels children to return to a place of safety and comfort where they can regroup and heal themselves. An additional value of the intrapersonal aspect of play, is that it meets a basic need to “do something” rather than remaining idle. Action in itself is soothing and can be a stress reducer for all individuals regardless of age. It gives one something to do rather than merely waiting passively for events to happen; it feels more effective and soothing than random, uncontrolled behaviors or thoughts, and is a more effective coping mechanism (Dissanayake, 2000; Warner, Koomar & Westcott, 2009). For example, we rhythmically tap toes, drum fingers, and wiggle various body parts as ways of relieving impatience, energy, boredom or worry. Even non-human animals tend to use action to shape and express feelings of anxiety or despair as they pace back forth in cages, in a seemingly endless action of “doing something” rather than remaining idle (Dissanayake, 2000; Gaynard, 2015). For children, soothing action usually takes the form of play because it is children’s most familiar, comfortable medium. Play is often the only place of comfort that children are able to bring into healthcare settings, and keep with them on a continual basis to confront the stresses of everyday life when in hospital. In addition, the intrapersonal aspect of play allows children to engage in activities and behaviors that they can control, which is essential for children feeling overwhelmed by emotions and events (Clark, 2003; Hubbuck, 2009). When child life specialists facilitate opportunities for play, they are creating places of comfort with children that support them in sharing and containing feelings of worry, despair and anxiety. As children become engaged in verbal, physical or imaginative play, their feelings are shaped and expressed, via play activities and behaviors, and thus made manageable.

Interpersonal Aspects of Comfort Play Children can also connect with others in the process of play if they desire. This interpersonal aspect of play leads to relationships serving as places of comfort (Koller, 2008; Gitlin-Weiner, 2015), as is illustrated in another children’s book, The Little Prince (Saint-Exupery, 1982). In this story, the Little Prince comes from another planet to earth and meets the fox who begs the Little Prince to develop a relationship with him so the fox can teach the Prince the importance of “ties.” As the fox discusses his desire to develop a relationship with the Little Prince, the fox refers to his safe, cozy burrow where he can hide when the fox hears the footsteps of hunters. In this way,

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the fox’s burrow provides him a physical place of comfort where he can be safe. The fox tells the Little Prince that if he develops a relationship with the fox, the Prince’s footsteps will be heard differently from those of the hunters, that the tie between the Prince and the fox will call the fox out of his burrow, to the safety and comfort of their relationship. The story of the Little Prince and the fox illustrates how interpersonal play relationships can provide us with places of comfort (Landreth, 1994; Ryan, 2009). As children develop ties with supportive adults, via play, children are presented with opportunities to create new safe places. Through play relationships, children are able to grow in a context that is familiar and comfortable. Children are respected, met at their level, listened to, and engaged with, not just accepted, but also embraced without judgment. Play relationships can thus provide an additional template that children can use to heal themselves. Just as the fox tended to hide in his burrow, fearful of the dangers presented by the hunters, the children with whom child life specialists work also tend to hide from the potential dangers of healthcare experiences, or the recurrence of traumatic events. Sometimes the hiding is quite literal, as the following case indicates: Jared, a 4-year-old patient, was found by a child life specialist hiding under a chair in the Medical Imaging Department. Jared was repeatedly whimpering, “I don’t want any more needles,” while his mother sat next to him desperately trying to coax Jared out from under the chair. After the child life specialist quickly established rapport with Jared’s mother, the specialist got on her knees and quietly explained to Jared about how she could help him make the MRI easier. During the conversation, Jared’s mother and the child life specialist casually played with the toys in her basket. After a short period of observing their play, Jared reached out from under the chair and grabbed a toy. Before long, Jared was out from under the chair and fully engrossed in inspecting the variety of toys in the specialist’s basket; the play relationship had been initiated. Soon, a full, age-appropriate psychological preparation for an MRI was underway. Similar to the ties between the fox and the Little Prince, Jared heard different “footsteps” from the child life specialist and began to trust, via the play relationship, that a safe, comfortable place was being created. Jared was then able to come out from under the chair to more effectively cope with the challenges confronting him.

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Relationships During Play. Sometimes the hiding that children exhibit to help themselves to feel safe is not as concretely expressed as that observed with Jared. At times, children hide behind emotional bravado, denial, anger, or withdrawal. However, the establishment and maintenance of a play relationship can be as effective in helping these children find a place of safety and comfort. Another example is Cecelia. Cecelia was a withdrawn 8-year-old with Down Syndrome who was scheduled for her first clinic visit at the hospital. On arrival, the mother registered at the reception desk of the clinic and told the child life specialist that Cecelia was in the lobby with her father and would not budge. The specialist took a backpack of toys and walked with Mom to the lobby where she found Cecelia on the floor in a corner. Cecelia refused to look at the specialist even after rapport with Mom and Dad had been developed. To initiate a play relationship with Cecelia, the specialist decided to try a distal approach to provide Cecelia some extended physical space to assess the safety of the situation. The child life specialist asked Dad to sit next to Cecelia and to roll and bounce balls back and forth with the specialist. After a bit of ball play between Dad and the specialist, they noticed Cecelia watching them. The specialist then began rolling the ball so it would gently bump Cecelia’s body. Dad would show Cecelia the ball and then roll it back. Gradually, Cecelia began pushing the ball back to the specialist with her foot and then, as the child life specialist began rolling the ball so Cecelia had to reach with her arms to get it, Cecelia became quite engrossed in the play. The specialist began inching toward Cecelia until they eventually sat face-to-face moving the ball between them. Once again, the safety and comfort of the play relationship was initiated, and Cecelia was coaxed out of her familiar hiding place of withdrawal to explore, with the support and guidance of the child life specialist, playful ways to cope with her fears. The theoretical value of play relationships is emphasized by some play therapists who maintain that the play space created between children and therapists supersedes the value of the play content. According to these therapists, the relationship supports children in doing their own processing and problem solving, and in pursuing the play things and themes that will best meet their needs (Winnicott, 1971; Henricks, 2015). The relationship between the therapist and child is an honoring process that supports the child in finding meaning in the experience (Galligan, 2000). It is a working relationship that is also warm, respectful, and connected with feelings of liking between the child and therapist.

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Other play therapists maintain that the safety children experience in the play relationship is the key component to any successful intervention and that such a relationship can enhance a positive sense of self and minimize children’s vulnerability to the effects of trauma (Gitlin-Weiner, 2015). This often allows children to generalize the safety of the play relationship to other relationships, helping children create an increased number of safe places in their lives (Crenshaw & Van Hollander, 2012; Pender, 2015). The therapeutic play relationship can also provide children an opportunity to learn selfforgiveness and absolve inappropriate guilt. Child life specialists can help children trust in their own innocence involving their illnesses via statements such as, “You didn’t make asthma happen to you,” and “A bad thought did not make you sick.” This release of guilt often fosters a trust of self that is claimed by many to be the foundation of hope (Fulton & Moore, 1995; Valle, Schubner & Suldo, 2006).

Play as Hope According to Greek mythology Pandora was created by Zeus as the first mortal woman and presented to Epimetheus to become his bride. As a wedding gift Zeus gave Pandora and Epimetheus a beautiful carved box forbidding the couple from ever opening the box. Pandora, who had been bestowed with a strong curiosity, became consumed with thoughts about what was kept inside the box. Eventually, temptation overcame restraint, and Pandora opened the box. In a flash, out poured a stream of ghostly figures containing all the curses of the world—disease, poverty, illness, death and evil. Immediately Pandora slammed the lid shut, but it was too late—she had already released the curses to forever plague the world’s population. The entire contents of the box had escaped, except, Pandora discovered, for one small beautiful item that lay on the bottom of the box. . . . Hope. Pandora released Hope and it fluttered from the box, touching and healing the wounds created by the curses she had previously unleashed. You see, Zeus had known that without Hope, mortals could never endure all the curses of the world. Today, Hope still remains in humanity to heal even in the darkest of times. (adapted from Groopman, 2005)

Importance of Hope Hope is about possibility, about the future, about expectations and often coexists with uncertainty. It is a potent and positive human faculty that assures us that the future is open. Hope provides a passion for the possible

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and is considered by many to be the strongest driving force of humans in regard to bringing about change and igniting the spirit within us to continue in spite of overwhelming challenges. According to hope theory, the successful pursuit of goals elicits positive emotions, and the failure to attain a goal results in negative emotions and ineffective coping behavior (Brussat & Brussat, 1996; Valle, Schubner & Suldo, 2006). We all have a “hope history” based on current and previous life experiences, personal beliefs and our faith system (Frankl, 1972; Grossoehme, 1999; Nash, 1990). Hope is developmental and has trait-like characteristics (Pearson, 2008). Many of us confuse hope with optimism, but as Groopman states, “Hope does not arise from being told to ‘think positively’ or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. . . . Hope is a path to a better future . . . hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion” (2005, p. xiv). Testimony to this are numerous accounts of people in World War II concentration camps whose survival seems to have rested on their ability to have a symbolic form of hope that they carried with them, a kind of portable, imaginative skill, such as reciting poetry or telling stories. Mathematicians and poets were two groups that seemed to have a unique ability to survive in these camps. Perhaps it was because they had a set of clearly ruled and structured symbolic forms that they could use to transform the camp experience into make-believe play experiences revolving around hope. They had periods of story-telling, riddling, poetry reciting, the retelling of familiar myths and other forms of imaginative play that allowed hope to remain alive for these survivors (Sutton-Smith, 1979). Our vital need for hopeful fantasies is further underscored by research indicating that when individuals lose hope (i.e., loss of a compelling, meaningful story about the future) that death is not far behind (Groopman, 2005).

Hope and Resilience In recent years there has been a growing acceptance of the concept of hope as it relates to resiliency and the importance of this concept in children’s development. Many children who are exposed to dangerous environments and to threatening life events continue to make positive adaptations to such stresses. By definition, resilient individuals possess the ability to spring back, rebound, successfully adapt in the face of adversity. They develop social competence despite the occurrence of stressful experiences and major assaults on the developmental process (Luther, Cicchetti & Becker, 2000). Competence is demonstrated in the face of a known risk such as the presence of a disability, natural disaster, or a life-threatening chronic illness (Tonkin, 2014).

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Recent research indicates there are a variety of internal and external characteristics common to resilient children, and one of the factors that most of these children and youth share is a sense of hope. Authors use different phrases or terms to refer to this characteristic. These include not only “hope” but also “a sense of purpose and future” (Garmezy, 1991); “a sense of control of one’s destiny and optimism” (Mandleco & Peery, 2000); “positive cognitive appraisal” (Stewart & Yuen, 2011); “taking initiative in one’s own life and believing in one’s own effectiveness”; “positive future expectations”; “expression of hope in fantasy” (Alvord & Grados, 2005); and a “positive outlook” (Masten, Morison, Pelligrini, & Tellegen, 1990). Many, if not most, of the children and family members with whom child life specialists work, can be classified as being “at risk” in regard to their physical or psychosocial well-being. This population is in need of support from others to nurture and facilitate the development of resilient characteristics so these individuals are able to confront the stresses inherent in their lives and rebound with successful adaptation. The use of fantasy, make believe and pretend play provide children opportunities to express and share their hopes with others, and can potentially support children in the establishment and maintenance of resilient beliefs, attitudes and behaviors. Fantasy Play. Fantasy, make-believe, pretend are all terms describing play that is present in all human societies (Dissanayake, 1992). It is a universal. This type of play is built on the foundation of symbolic play discussed earlier in this chapter. The literature on fantasy play reflects numerous schools of thought regarding the purpose and value of this form of play. Ethologists maintain that the imagination is important in the healing process, and that one’s fantasies positively add to the quality of life (Dissanayake, 2000). Others have suggested that children engage in fantasy play because it broadens the range of potential behaviors, enhances the possibility of survival in an ever-changing environment, and provides the behavioral flexibility essential for insightful problem solving (Brown, 2009; Nourot, 2015). Psychodynamic theorists and practitioners maintain that fantasy play is a reflection of children’s lives, a symbolic expression of their unconscious conflicts and anxieties, as well as an emotional release and a way to resolve fears and heal (Henricks, 2015). Findings of one study that explored the impact of fantasy play on the anxiety of chronically ill children found that the fantasy activity of children had a positive effect on reducing distress and recommended the incorporation of imaginary activities into the therapeutic interventions of healthcare professionals ( Johnson, Whitt, & Martin, 1987). Vygotsky suggested that even young children are capable of reasoning in a theoretical manner, particularly when engaged in fantasy play (Thomas, 1985). He maintained that entering the pretend play mode enables young

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children to approach situations in an “as if” fashion and to consider experiences not only in the here and now (the concrete reality) but to entertain theoretical ideas. In his theory of cognitive development, Vygotsky outlined features that he viewed critical in defining make-believe play. One of these characteristics is the creation of imaginary situations that permit children to grapple with wishes that are not yet realized (Bodrova & Leong, 2015). Research exploring Vygotsky’s assertions (that in pretend play children sometimes think and behave in a manner well beyond their age) supports the claim that young children are able to consider numerous potential possibilities in a theoretical manner (Ashiabi, 2007; Bodrova & Leong, 2015; Nourot, 2015).

Hope and Fantasy Play Vandenberg (1986) suggests that an additional way of looking at fantasy play is to view it as children “playing with hope.” Vandenberg posits that perhaps children are constructing a basis for hope that may change their lives just as adults do via mental fantasy play. Common adult fantasies include imagining an upcoming vacation, winning the lottery, escaping the daily drudgery, and other “day dreams” that facilitate our more positive moods. Hence, fantasy play, whether merely imagined, or eventually played out, is the very stuff of life for both children and adults. According to Vandenberg (1986) the major difference between the hopeful play of children and adult fantasies is that children’s imaginings are made public via dramatic play or expressed aloud in stories and personal monologues. As adults, most of us would be embarrassed if routine daydreams were made public. However, when younger, all of us probably expressed hopes for our future lives and roles via such public displays. Singer (1994) describes the fantasies of adults and the imaginative play of children as a process for “sustaining hope and effort,” and maintains that make-believe play of children (e.g., a 4-year-old playing she is Superman, or pretending a doll can talk) can be regarded as a fundamental precursor of the full-blown adult imagination. Through imaginary play, children take on an attitude toward the possible, explore a range of potential futures, or in effect, travel through time and space to direct a better, more hopeful childhood (Nourot, 2015). Many times, the problems children confront leave them feeling hopeless. They may not be able to think of possible solutions to the struggles with which they live. Through the use of sociodrama, actual solutions to problems can be enacted using physical movements, props, mental actions and mindbody interactions. This can be observed as child life specialists support children in reenacting healthcare experiences during which children have pre-

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viously been the passive recipients. The action of sociodrama can facilitate the creation of previously unconceived possibilities, which can lead to the expression and containment of feelings, more effective problem solving and coping, the reduction of distress, and the development of more hopeful future images (Goff & Torrance, 1991; Gonzalez & Bell, 2016) Consider the experience of a 4-year-old, in an inpatient setting, who, due to the distance the family lives from the hospital, and the fact that her mother has three other children at home, rarely receives visits from her parents. The 4-year-old is focused on playing with a bin of animal families in the playroom with a child life specialist. The child has selected a baby giraffe from the bin and weaves a story aloud about the giraffe looking for her mommy. The child moves the giraffe around the room manipulating the giraffe to peek around corners, in cupboards, under tables and chairs, and any other place “Mommy” might be found. During the child’s play, the child life specialist suggests that the giraffe might be experiencing feelings similar to those of other children who can’t find their mothers (e.g., fearful, sad, mad), and receives verbal and nonverbal confirmation from the child that the baby giraffe is experiencing such feelings. The specialist also suggests reasons that the giraffe can’t find its mommy (“Perhaps Mommy had to go home to take care of the giraffe’s sisters”). After looking all over the playroom in vain, the young patient returns to the bin where the rest of the animals reside. The child holds the giraffe above the bin, and looking up at the specialist asks in a woeful manner, “Is there a mommy in there for me?” (blurring the boundary between the giraffe and herself). Then, in the next instant, the child dives into the bin with the baby giraffe and pulls out the mommy giraffe squealing with delight, “Here is my mommy! Here is my mommy!” The play is concluded with the child playing the mommy’s role expressing much love and concern for the baby and reassuring the young giraffe that she is very greatly missed at home. As the child life specialist and patient return to the child’s room, the specialist reminds the patient that giraffe mommies always know where to find their babies, even when the babies are in the in the hospital. This fantasy play appears to illustrate this patient’s strongest hopes: to be happily reunited with her mother; to be certain that her mother still loves her, even when separated for long periods of time; and, that she is very much missed by the family at home, all of which are realistic, wishful possibilities giving rise to true hope. As the child life specialist facilitates this form of make believe play, the young patient has an opportunity to act out and ex-

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press her feelings of worry and despair, and then to develop a more positive image of the future and share her fantasy of hope. It is clear there is a need for child life specialists to facilitate the fantasy play of children for all the reasons previously reviewed in this chapter. When fantasy play is also viewed as a form of hope creation for young patients, it becomes imperative that the development and maintenance of such a vital characteristic be a central focus of child life specialists. Thus, the opportunities for patients’ imaginative play experiences need to be maximized by child life professionals to support children in establishing hope and developing resilience as they cope with illness, injury, healthcare, and other life stresses. The child life specialist’s own professional curiosity and willingness to share children’s thoughts and pretend play can open troubled children to hopeful images via the world of fantasy. By such an approach, we can support children who are sad, lonely and despairing, in transforming a seemingly hopeless future into a world of innumerable possibilities (Alvord & Grados, 2015; Pearson, 2008; Valle, Huebner & Suldo, 2006). CONCLUSION The theories and research reviewed in this chapter are presented according to various play paradigms. It is important to realize that these are artificial conceptual categories imposed on the subject of play to facilitate an understanding of the different approaches that may be employed by child life specialists. However, in reality, the play engaged in by children usually reflects more than one, and sometimes many, of the paradigms presented in this chapter. Therefore, the provision of play opportunities may simultaneously benefit children in numerous ways. Play experiences may concurrently provide children with a place of enjoyment and comfort, facilitate gains in problem solving behaviors and development, encompass an experience of flow, offer an opportunity to express feelings, and foster a sense of fantasy and hope. Play provides child life specialists rare opportunities to understand children’s worlds and allow a flow of communication when other forms of interpersonal connection are difficult or impossible. Perhaps most importantly, a playful attitude toward life allows us to keep in touch with our inner selves while we deal with the realities of our world. If we can keep this “flow” of play and work, we may be better able to help children in our care to authentically experience their own lives.

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Galligan, A. C. (2000). That place where we live: The discovery of self through the creative play experience. Journal of Child and Adolescent Psychiatric Nursing, 13, 169–176. Garmezy, N. (1991). Resilience in children’s adaptation to negative life events and stress environments. Pediatric Annuals, 20, 459–466. Gaynard, L. (2015). Play as ritual in health care settings. In D. Pronin Fromberg & D. Bergen (Eds.), Play from birth to twelve: Contexts, perspectives and meanings (3rd ed., pp. 349–359). New York: Routledge. Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R., Laidley, L. N. & Redburn, L. (1998). Psychosocial care of children in hospitals. Rockville, MD: Child Life Council. Ginsburg, K. (2006). The importance of play in promoting healthy child development and maintaining strong parent-child bonds. Pediatrics, 119(1), 182–191. Gitlin-Weiner, K. (2015). Clinical perspectives on play. In D. Pronin Fromberg & D. Bergen (Eds.), Play from birth to twelve: Contexts, perspectives and meanings (3rd ed., pp. 361–373). New York: Routledge. Gnaulati, E. (2013). The therapeutic use of rough-and-tumble play. Play Therapy, 8(4), 20–23. Goff, K., & Torrance, E. P. (1991). Healing qualities of imagery and creativity. The Journal of Creative Behavior, 25, 296–303. Gonzalez, C. L., & Bell, H. (2016). Child-centered play therapy for Hispanic children with traumatic grief: Cultural implications for treatment outcomes. International Journal of Play Therapy, 25(3), 146–153. Groopman, J. (2005). The anatomy of hope: How people prevail in the face of illness. New York: Random House. Groos, K. (1914). The play of man. London: W. Heinemann. Grossoehme, D. H. (1999). The pastoral care of children. New York: Haworth. Hall, G. S. (1921). Youth: Its education, regimen and hygiene. London & New York: Appleton. Henricks, T. S. (2015). Play as experience. American Journal of Play, 8(1), 18–49. Henricks, T. S. (2016). Reason and rationalization: A theory of modern play. American Journal of Play, 8(3), 287–324. Henniger, M. L. (2013). Teaching young children (5th ed.). Boston, MA: Pearson. Hewes, J., & MacEwan, G. (2006). Let the children play: Nature’s answer to early learning. Early Childhood Learning Knowledge Center. Lessons in Learning. Canadian Council on Learning. Retrieved from www.ccl-cca.ca Hubbuck, C. (2009). Play for sick children: Play specialists in hospitals and beyond. Philadelphia: Jessica Kingsley Publishers. Hughes, F. P. (1999). Children, play and development. Needham Heights, MA: Allyn & Bacon. Irwin, E. C. (1983). The diagnostic and therapeutic use of pretend play. In C. E. Schaefer & K. J. O’Connor (Eds.), Handbook of play therapy (pp. 148–173). New York: John Wiley & Sons. Johnson, J. E. (2015). Play development from ages four to eight years. In D. Pronin Fromberg, & D. Bergen (Eds.), Play from birth to twelve: Contexts, perspectives and meanings (3rd ed., pp. 21–30). New York: Routledge.

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Rubin, K. H., Fein, G. G., & Vandenberg, B. (1983). Play. In P. H. Mussen (Ed.), Handbook of child life psychology: Social development (pp. 693–774). New York: John Wiley. Ryan, K. Shelly, J. L., & Powers, D. (2017). A multidisciplinary model for treating complex trauma in early childhood. International Journal of Play Therapy, 26(2), 111–123. Ryan, V. (2009). Playing for healing and growth: Exploring theory and practice in non-directive/child-centered play therapy. In K. Stagnitti & R Cooper (Eds.), Play as therapy: Assessment and therapeutic interventions (pp. 187–204). Philadelphia: Jessica Kingsley Publishers. Saint-Exupery, A. (1982). The little prince. San Diego: Harcourt Brace Jovanovich. Schaefer, C. E., & O’Connor, K. J. (1983). Handbook of play therapy. New York: Wiley. Singer, J. L. (1994). The scientific foundations of play therapy. In J. Hellendoorn, R. van der Kooij & B. Sutton-Smith (Eds.), Play and intervention (pp. 27–38). New York: State University of New York Press. Singer, J., & Singer, D. (1979). The value of imagination. In B. Sutton-Smith (Ed.), Play and learning (pp. 195–218). New York: Gardner, Press, Inc. Singer, D. G., & Singer, J. L. (2015). Fantasy and imagination. In D. Pronin Fromberg & D. Bergen (Eds.), Play from birth to twelve: Contexts, perspectives and meanings (3rd ed., pp. 378–386). New York: Garland Publishing Co. Slade, A., & Wolf, D. (Eds.). (1994). Children at play: Clinical and developmental approaches to meaning and representation. New York: Oxford University Press. Smilansky, S. (1968). The effects of sociodramatic play on disadvantaged preschool children. New York: Wiley. Sourkes, B. A. (1995). Armfuls of time: The psychological experience of the child with a lifethreatening illness. Pittsburgh, PA: University of Pittsburgh Press. Spencer, H. (1873). Principles of psychology. New York: Appleton-Century-Crofts. Stagnitti, K., & Cooper, R. (2009). Play as therapy: Assessment and therapeutic interventions. Philadelphia: Jessica Kingsley Publishers. Steinberg, L. (2010). Adolescence (9th ed.). New York: McGraw Hill. Stewart, D. E., & Yuen, T. H. (2011). A systematic review of resilience in the physically ill. Psychosomatics, 52(3), 199–209. Sutton-Smith, B. (Ed.). (1979). Play and learning. New York: Gardner, Press, Inc. Sutton-Smith, B. (1982). A history of children’s play. Auckland, NZ: New Zealand Council for Education. Sutton-Smith, B., & Kelly-Byrne, D. (1984). Idealization of play. In P. K. Smith (Ed.), Play in animals and humans (pp. 305–321). Oxford, England: Basil Blackwell, Inc. Thomas, M. R. (1985). Comparing theories of child development. Belmont, CA: Wadsworth, Inc. Thompson, R. H., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas, Publisher. Thomson, P., & Jaque, S. V. (2016). Exquisite moments: Achieving optimal flow in three activity-based groups regardless of early-childhood adversity. American Journal of Play, 8(3), 345–361.

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Tonkin, A. (Ed.). (2014). Play in healthcare: Using play to promote child development and wellbeing. New York: Routledge. Valle, M., Huebner, E., & Suldo, S. (2006). An analysis of hope as a psychological strength. Journal of School Psychology, 44, 393–406. Vandenberg, B. (1986). Mere child’s play. In K. Blanchard (Ed.), The many faces of play (pp. 115–120). Champaign, IL.: Human Kinetics Publishers, Inc. Vygotsky, L. S. (1962). Thought and language. Cambridge, MA: M. I. T. Press. Warner, E., Koomer, J., & Westcott, A. (2009). Arousal regulation in traumatized children: Sensorimotor interventions. Paper presented at International Trauma Conference, Boston, MA. Weissman, P., & Hendrick, J. (2014). The whole child (10th ed.). Boston, MA: Pearson. Wicklegren, I. (1993). It’s not just a game. Current Science, 78, 4–5. Winnicott, D. (1971). Therapeutic consultations in child psychiatry. London: Hogarth. Wolf, A. D. (2005). Montessori insights for parents of young children. Baltimore, MD: Parent Child Press. Retrieved from www.parentchildpress.com Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L. N., & Thompson, R. H. (1998). An experimental model of a child life program. Children’s Health Care, 16, 244– 254.

Chapter 9 PSYCHOLOGICAL PREPARATION AND COPING JOY GOLDBERGER, RICHARD H. THOMPSON, AND ANNE LUEBERING MOHL There was a child went forth every day, And the first object he look’d upon, that object he became, And that object became part of him for the day or a certain part of the day, Or for many years, or stretching cycles of years . . . These became part of that child who went forth every day, and who now goes, and will always go forth every day. Walt Whitman his chapter addresses the psychological preparation of children and families and the facilitation of their coping responses when confronting potentially threatening medical events, episodes, and environments. In this chapter, we review relevant theory and provide a framework for approaching this important component of care. As we proceed, we will encounter three children, their families, and the staff members who attempt to prepare and support them. Ana is a four-year-old girl who will require ureteral reimplants. The child life specialist meets Ana and her mother in the surgeon’s clinic. In addition to the predictable issues of typically-developing four-year-olds, Ana has recently experienced distressing diagnostic procedures including a VCUG. Daniel is a seven-year-old boy in acute respiratory distress. The child life specialist in the emergency department hears his screams before he has a chance to meet him personally. As he enters the room he sees Daniel fighting as vigorously as he is able while staff members attempt to place an IV. Daniel’s

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father is pleading with his son to “be good” while he assists staff in trying to hold Daniel on the treatment room table. And finally, Jason is an elevenyear-old boy in a coma in the intensive care unit. His prognosis is poor. Jason’s parents are unsure whether his eight- and fourteen-year-old brothers should be told just how sick Jason is, and have not brought them in to visit. INTRODUCTION AND OVERVIEW Each of these children and families is faced with substantially different circumstances. However, each is likely to benefit from support and opportunities to enhance coping. The goal of psychological preparation is to increase children and family members’ sense of predictability and control over potentially overwhelming life experiences, allowing them to proceed in these situations with a resulting sense of mastery and with the lowest possible level of distress. This, in turn, may contribute to the optimal emotional adjustment of children and families to hospitalization, healthcare, illness, or other potentially stressful events. Emotional readiness, or sense of being as “prepared” as possible to face impending situations, can be fostered by: • helping individuals more accurately understand the circumstances and experiences they face • helping them understand, identify, practice, and implement options and strategies they may use to better proceed through the experience • helping individuals organize their emotional experience to make meaning of the events. Ideally, the process of preparation includes support at all phases of an event in which a child and family may be challenged: before, during and after. Timing, availability of child life staff, and ability of parents and staff of other disciplines to provide support may influence the amount of direct care offered to an individual child and family. In addition, circumstances, such as the child’s level of distress or the lack of time prior to an event or procedure, may dictate the relative weight that is given to enhancing understanding and facilitating coping. For example, longer lead time before an event and calm circumstances allow for a thorough approach to assessing needs and planning and rehearsing for the upcoming event. When events are imminent or in progress, efforts to provide brief explanations of components of the event as they unfold and to facilitate coping may be more prominent. The process of providing or enhancing psychological preparation can be initiated at varying times and contexts with children and families. It may

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begin as soon as one knows an event is to happen (advance preparation), during the actual event (emotional support and facilitation of coping), and may even be continued after the event has concluded. After an event, a sort of debriefing, often called “post-procedural play,” might be the only option for a child already in a state of crisis; however, it is ideal for all children to process events that may have taxed their coping resources and to “prepare a memory” that may serve them well in subsequent situations (Solnit, 1984). In addition, support and coping options can be introduced during times of crisis, even if prior “preparation” has not been an option. While arguably no longer preparation in the sense that the child and family has not planned and rehearsed in advance, support during times of crisis or through post-procedural play can be important components of preparing for the future. An important component of the role of the child life specialist in these contexts is to address issues such as: What made it easier? What could have made it easier? What made it harder? What would you like us to do differently? For Ana and her mother, the child life specialist has adequate time to assess their potential vulnerabilities and to plan together for the impending surgery. The child life specialist is aware that thoughts and feelings about past difficult experiences in healthcare will influence responses to the upcoming surgery and, therefore, will need to be explored in preparing for the new experience. There is no time to explore past experience with Daniel and his father, or to learn about Daniel’s preferences and interests. The child life specialist must make a decision about whether to intervene in the midst of current struggles, or to offer medical play to “work through” the experience after the procedure is over. Although time is of the essence, the child life specialist has time to learn from Jason’s parents about their beliefs and concerns regarding the needs of Jason’s brothers. As they are overwhelmed, and this is a dilemma with which none of them have any experience, Jason’s family needs support to envision and carry through a plan of action. OVERVIEW OF THE STRESS-COPING FRAMEWORK AND RELEVANT LITERATURE Of all of the interventions used by child life specialists, none has received more research attention than psychological preparation. The overwhelming

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conclusion from this body of literature is that preparation for medical encounters has positive benefits for children and their families, a conclusion that has been reinforced by recent reviews (e.g., Perry, Hooper & Masiongale, 2012; Capurso & Ragni, 2016). A more detailed discussion of research on preparation may be found in Chapter 3 of this volume. This research, and the corresponding variety of clinical approaches reflected in it, have been shaped by theoretical frameworks that guide child life practice. In this section we provide an overview of a predominant theoretical framework guiding practice, the “stress-coping framework” of Richard Lazarus and his colleagues (Lazarus & Folkman, 1984; Lazarus, 1999). We will further describe how the practices and approaches used in the process of preparation are congruent with this model, citing research that supports the effectiveness of their use. It should be noted that the guidance provided by the research literature regarding preparation, both here and in Chapter 3, is not exhaustive, continually changes, and leaves many important questions, such as the relative effectiveness of specific approaches and the optimal timing of preparation, unanswered. The actions child life specialists take are often bound by the reality of the circumstances faced, as the scenarios in this chapter illustrate. Decisions made regarding preparation should be based on clinical experience in light of the best theoretical and empirical evidence that is available. Following principles of evidence-based practice, child life specialists should make use of resources from ACLP, as well as other sources, to keep abreast of new theory and research and to apply it accordingly. The final sections of this chapter demonstrate how one’s knowledge of theory and research can be applied to work with children and families.

The Stress-Coping Framework As practicing child life specialists well know, children and the members of their families are unique beings and may respond to seemingly similar, potentially threatening circumstances in markedly different ways. Some sail through a procedure or event, while others become incapacitated. The challenge to the child life specialist is to recognize and understand these differences and attempt to tailor interventions to support coping and ultimately reduce the degree of distress experienced. The stress-coping framework of Lazarus and colleagues recognizes this—that not all people respond to the same set of potentially stressful circumstances in the same manner, with some experiencing extreme distress, while others are relatively undisturbed. This variation is explained, according to the framework, by the complex relationship that occurs between the potential stressor, such as a medical con-

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dition or event, and the individual’s perceptions of, or appraisals about, the stressor. Psychological stress is considered to be the product of a “relationship between the person and the environment that is appraised as taxing or exceeding his or her resources and endangering his or her well-being” (Lazarus & Folkman, 1984, p. 19). The degree of distress one experiences in the face of potentially disrupting events is the product of a pair of “appraisals” made by the individual. One makes a “primary appraisal” about the nature of the potential threat. In this appraisal, the question asked is, “Am I in trouble?” The individual might appraise the potential threat as irrelevant, as benign or positive, or as in some way stressful. In a “secondary appraisal,” the individual asks, “What, if anything, can I do about this?” (Lazarus & Folkman, 1984, p. 31). In other words, what options do I have to cope with this event or circumstance, and what is the likelihood that these efforts will be effective? It is the combination of these appraisals that results in the degree of distress one experiences. One person may appraise a situation, such as impending surgery, as highly threatening, yet manageable given available coping resources. Another may view the circumstances as being of a lesser threat, yet still experience psychological stress if coping resources are perceived as being limited or ineffectual. “Coping,” within this framework, is viewed as, “cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, p. 141). Children may give themselves comforting messages or may actively deny that an event is to occur, both of which would be considered cognitive coping efforts. On the other hand, activities such as exercising prior to an examination to release tension, holding still during a procedure, or practicing useful behaviors in advance may be viewed as behavioral coping efforts. The inclusiveness of Lazarus’ definition of coping has resulted in conflicting interpretations of the framework. For example, some have concluded that anything one does in response to a potential threat is to be considered coping. However, this is not the case, for Lazarus specifically excludes reactions and responses that are, to use his term, “automatized” and, therefore, require no effort and do not represent attempts to manage the situation. The distinction between these automatized responses and “coping” is difficult to draw. Rudolph, Dennig, and Weisz (1995) describe the distinction by saying that, “Any response that reflects a spontaneous internal or behavior reaction to stress, rather than a deliberate attempt to cope, is referred to as a stress response” (p. 329). Even with this definition, the difference between coping and automatized stress responses is hard to pinpoint. As Rudolph et al. note, a child’s crying prior to an injection may represent either a coping

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response, designed to relieve tension in the child or elicit emotional support, or as a spontaneous “stress response” (p. 329). In practical terms, the distinction is more academic than actual. Certain responses, whether considered coping strategies or stress responses, run counter to the demands of the situation and to the goals one has for managing the perceived threat. Though Lazarus does not make value judgments about specific coping strategies, he does note that some efforts may not serve the individual well. For example, he suggests that “denial” may be a very effective strategy at certain points in an illness, but not for the individual who is experiencing chest pains in the early stages of a heart attack. The same would hold true for children. For example, denial that one really needs a dose of insulin would be counterproductive and dangerous for a child on a sleepover with friends. Similarly, the child who thrashes uncontrollably during a procedure may be intentionally doing so in an effort to cope, refusing to “give in” and hoping to avoid the experience altogether. Nevertheless, this choice of coping strategies may prolong the stressful situation and require firmer restraint, which may increase the pain or discomfort experienced and delay necessary care. According to the framework, the process of making appraisals and of coping is dynamic, constantly changing, and may be influenced by one’s past experiences, positive or negative, as well as changing circumstances within the environment. Because of this, child life specialists or other healthcare professionals are well-positioned to affect the coping process within the two levels of appraisal specified by the model. First, the primary appraisal may be influenced by changing the nature of the circumstances to make them less threatening, which may involve alterations in the environment or modification of policies (e.g., ensuring that a procedure is done in comforting surroundings and that policies allow parents to be present). The primary appraisal can be further influenced by providing the child with information about the potentially stressful circumstances. This will enable the child to make an accurate appraisal regarding the question, “Am I in trouble?” based on the reality of the situation rather than misconceived fantasies. In addition, the child life specialist may influence the secondary appraisal (“What can I do?”). This can be done by helping the child to identify, practice and implement strategies that are compatible with the demands of the situation and that are perceived by the child as effective.

Components of the Preparation Process The individual components of the preparation process used by child life specialists, and affirmed by the research literature, are congruent with the stress-coping model, as reviewed in the following sections.

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Providing Information The primary material for making an assessment of potentially threatening circumstances is the information one has about them. Some of this information may be obtained indirectly, through signals given off by the environment, conversations overheard, or perceptions of the worry of caregivers. On the other hand, information may be given directly to children through deliberate explanations of upcoming events. Due to the state of their cognitive development, children are particularly prone to weave together the information available to them through whatever sources to assess their circumstances as more threatening than the reality holds. A primary goal of the process of preparation is to enhance the child and family’s understanding of the procedures through the presentation of information about the circumstances they face. The early research on preparation, summarized by Vernon, Foley, Sipowitz, and Schulman (1965) was based on the premise that “psychological upset” observed in children during or after hospitalization or medical care is due in part to the unexpectedness and unfamiliarity of events they encountered. By providing children with information about procedures, it was posited (and demonstrated in the research reviewed by Vernon et al.) that this upset could be reduced. If viewed in terms of the stress-coping model, providing information allows children to make an accurate appraisal of the circumstances they face. Although the early research largely focused on “procedural” information (i.e., providing basic descriptions of the nature of events), it was soon recognized that further attention to the manner of presentation, language used, and types of information conveyed, would enhance preparation efforts. Young children are concrete thinkers who have difficulty absorbing abstract information and who learn best when given opportunities for active involvement with the material presented (Piaget, 1962). Purely verbal descriptions, therefore, are less likely to be effective than explanations supported by props, pictures, and other visual displays that depict upcoming events and invite children’s interaction and manipulation. Subsequent preparation efforts have routinely incorporated such materials with positive results (see, for example, Brewer, Gleditsch, Syblik, Tietjens, & Vacik, 2006; Kain et al., 2007). In addition, attention to the use of language is critical so that it is non-threatening and age-appropriate (Gaynard, Wolfer, Goldberger, Thompson, Redburn, & Laidley, 1990). The child’s understanding of explanations, and in turn the nature of one’s primary appraisals, may also be enhanced through incorporation of “sensory” information—that is, the conveying to children through descriptions and demonstrations the sensations that they will see, feel, hear, smell or taste

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(e.g., the sounds of a cast cutter for orthopedic cast removal, or the smell of an alcohol wipe prior to a blood draw). The use of sensory informational approaches is now routinely incorporated into preparation activities with positive effect (Dahlquist, Gil, Armstrong, DeLawyer, Greene, & Wuori, 1986; Kennedy & Riddle, 1989; Siegel & Peterson, 1980, 1981).

Providing Models The information children take in about an event is not always didactic in nature and may be influenced by their observations of people and activities in their environment, either through incidental events or deliberate presentation. Arising out of the work of behavioral psychologists (e.g., Bandura, Grusec, & Menlove, 1967) was the use “modeling” techniques. In this approach, children are presented with a model (typically on film or video) who is facing stressful circumstances comparable to that of the child. This approach holds that the viewing of a model who encounters and manages stressful circumstances is likely to increase the probability that the target child will adopt the same behaviors and, therefore, more successfully handle the event. The effectiveness of this approach has been demonstrated for specific procedures including injections and anesthesia induction (Vernon, 1973, 1974), as well as for the more generalized experiences of hospitalization (Melamed & Siegel, 1975). In recent years there has been less direct attention to modeling approaches per se in the research literature. Nevertheless, in practice the presentation of models continues through the use of video presentations and print or electronic preparation materials that relate information about medical events using children in the demonstrations. From a stress-coping perspective, the use of such models may affect both appraisals, by providing the patient with additional information about the nature of the experience to be encountered (primary) and by demonstrating how a “model” child successfully encounters an impending threat, in the process introducing effective strategies the child may adopt (secondary).

Involving Parents An important source of information to the child about the potential threat of circumstances are parents. Children, particularly young children, are highly dependent on their parents, especially so when facing challenging events. The presence or absence of parents, as well as parents’ own levels of comfort and understanding, can affect the appraisals their children make regarding those circumstances. The absence of a parent during a critical period may signal a greater threat to the child. The presence of a parent who is

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uninformed, unwelcomed, uninvolved or anxious may also increase a sense of threat. In such cases, the child may make primary appraisals of greater threat. Conversely, the presence of parents who are confident, knowledgeable and supportive can positively influence this appraisal and may also contribute to the child’s secondary appraisal that a challenge can be successfully met. Preparation activities must bear these effects in mind, fully incorporating parents in the process. For example, as noted in Chapter 3, current literature regarding parent presence during anesthesia induction indicates that when parents are prepared for the experience, their own anxiety decreases, as does that of their children. In addition, involvement of parents in preparation increases their own levels of satisfaction and confidence (Bailey, Bird, McGrath, & Chorney, 2015; Wang, Maranets, Weinberg, Caldwell-Andrews, & Kain, 2004; Chan & Molassiotis, 2002; Zuwala & Barber, 2001). Parents who are given adequate information and support can also play an instrumental role in enhancing their child’s understanding of events and coping activities (Fortier, Blount, Wang, Mayes & Kain, 2011), Melnyk et al. (2004) found that an experimental program designed to enhance maternal coping during and after their child’s hospitalization did, in fact, result in more positive psychosocial outcomes; moreover, their children had more positive behavioral outcomes, even up to a year after discharge from the hospital. Giving parents an active role to play in assisting their child through a difficult medical procedure may be especially useful (Blount, Davis, Powers, & Roberts, 1991). Butler, Symons, Henderson, Shortliffe and Spiegel (2005) observed that actively involving parents, “seemed to counter the helplessness, distress, and anxiety that may come from observing one’s child’s discomfort and resistance” (p. 84). The positive effects of involving parents in the preparation of their children allows them to reinforce information and practice coping apart from the preparation session, a practice that may be especially useful when there is a long lag time between contact with the family and the planned procedure, when a child will be receiving home care, and when repeated procedures are expected.

Facilitating Coping Behaviors One element of the preparation process specifically targeted toward the child’s secondary appraisal (i.e., “What can I do?”) is instruction in “coping skills.” This form of intervention uses cognitive strategies to alter behavioral reactions and patterns, helping the child identify and practice techniques for coping with specific procedures and events. Among the strategies introduced

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through this approach are relaxation techniques, referred to by some as “distraction” (e.g., deep and regular breathing or “blowing the feeling away”), selection of and concentration on an alternate focus (e.g., paying attention to a visually intriguing material or an imagined pleasant event or setting), and comforting self-talk (reassuring oneself that all is proceeding well and that the event will be over soon). Typically, more than one such technique is presented so that children have control over selection of the method they prefer. Instruction in coping skills has been successfully incorporated into preparation interventions with a wide variety of patients, including those in the emergency department (Gursky, Kestler, & Lewis, 2010) or undergoing MRI tests (Durand, Young, Nagy, Tekes, & Huisman, 2015).

Stress-Point Preparation In practice, any of the techniques discussed above, including instruction in coping strategies, is seldom used in isolation. Instead, a constellation of approaches is adopted, with varying weight given to a particular component based on the circumstances of the individual and the assessment of the child life specialist. One such approach, rooted within the stress-coping framework, is stress-point preparation, which addresses both primary and secondary appraisal (Wolfer & Visintainer, 1975, 1979; Visintainer & Wolfer, 1975; Wolfer, Gaynard, Goldberger, Laidley, & Thompson, 1988). In stress-point preparation, each of a series of stress points (episodes or events during a healthcare encounter that are likely to be appraised as threatening) is identified. Children and their families are prepared for each stress point using a combination of interventions, including the presentation of information through play-based activities and rehearsal of coping responses to be used. For each family, preparation is ideally conducted by a single individual, who may also be present during a given stress point to provide support. This approach was found to be effective in each of the studies conducted by Wolfer and colleagues, including the Child Life Research Project sponsored by the Association for the Care of Children’s Health (Wolfer et al., 1988).

Experienced Patients A substantial number of patients come to medical events with prior experience, either because of a chronic illness or previous acute medical care. As the stress-coping framework suggests, past experiences may affect current appraisals and, in turn, children’s responses to care. Research confirms this, indicating that children with prior experience may be more sensitive to medical events even very early in life (Taddio, Goldbach, Ipp, Stevens, & Koren, 1995; Taddio, Katz, Ilersich, & Koren, 1997; Taddio, Shah, & Gilbert-

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MacLeod, 2002), and that the nature of their experience may affect their responses to preparation (Ellerton & Merriam, 1994; Faust & Melamed, 1984). Child life specialists must seek information on past encounters and incorporate this knowledge and information into preparation for subsequent events. As part of a dynamic process that undergoes continual reexamination, stress-coping appraisals are subject to modification for the better over time. Even among children with prior negative medical experiences, preparation may produce positive effects ( Jay, Elliott, Ozolins, Olson, & Pruitt, 1985).

Post-procedural Evaluation Although it is not always recognized, post-procedural follow-up, during which aspects of the past event are discussed, is a form of preparation for similarly stressful future experiences. According to Solnit (1984), it is important for a child to be supported in “preparing a memory” that will serve as a foundation for the future—affecting their future appraisals. The research of Chen and colleagues (Chen, Zeltzer, Craske, & Katz, 1999; Chen, Craske, Katz, Schwartz, & Zeltzer, 2000; Chen, Zeltzer, Craske, & Katz, 2000) supports this idea. Among pediatric cancer patients experiencing a series of three lumbar punctures, those children who were debriefed by a therapist following the first procedure, and again prior to the second, held fewer exaggerated memories of the negative aspects of their event, and experienced less anxiety during their subsequent procedures (Chen et al. 1999).

An Additional Perspective on Stress and Coping: Overwhelming Stress and its Impact on the Brain Recent research has added to the body of knowledge about how memories of repeated or traumatic events are retained, even from a very early age. While not intervention-based, this body of information lends support from a neurophysiological perspective to Lazarus and Folkman’s (1984) theoretical model on which stress-point preparation is based and can also inform how we choose to emphasize components of psychological preparation. Although it is often assumed that infants and young children will not remember early traumatic events such as painful and frightening medical experiences, more recent work informs us that these events may indeed have an impact. Infants who have undergone painful procedures, such as circumcision and heel sticks, within the first days of life have been shown to react with more crying to subsequent routine immunizations (Taddio et al., 1995, 1997, 2002), and even to react with more facial grimacing during cleansing prior to immunization (Taddio et al., 2002). Other research indicates that

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infants remember traumatic experiences (Fivush, 1998; Gaensbauer, 1995, 2000, 2002, 2004; Gaensbauer & Jordon, 2009), specifically traumatic medical experiences (Peterson & Parsons, 2005; Peterson & Rideout, 1998), even from the first months of life. Although verbal recall of difficult medical experiences becomes more fluent and accurate over the second and third year (Peterson & Parsons; Peterson & Rideout), Gaensbauer presents case studies of children who experienced traumatic medical and non-medical experiences before they were verbal and who spontaneously acted them out with play materials even years later (1995, 2000, 2002, 2004; Gaensbauer, Chatoor, Drell, Siegel, & Zeanah, 1995). Clearly, experiences that very young children find to be overwhelming have the potential to remain with them for some time. Refinements in technology in recent years have allowed researchers to examine the impact of single and of repeated overwhelming painful events. There is evidence from both human research and animal research that replicates pediatric medical experience that exposure to traumatic and repeated painful procedures leads to actual changes in brain structure and neurochemistry (see Goleman, 1995; Rothschild, 2000; and DeBellis et al., 1999 for reviews). Repeatedly causing pain in a single rat pup paw, as a parallel to infants’ experiences with repeated heel sticks, has been demonstrated to result in significantly overdeveloped afferent neural pathways from that specific anatomical structure (summarized in Gaensbauer, 2002). Children and adolescents who were maltreated and subsequently diagnosed with posttraumatic stress disorder (PTSD) were found to have detrimental changes in brain structure and size, as well as problematic behavioral, emotional, cognitive, and psychological symptoms (DeBellis et al.). Perhaps most compelling is the summary of the components of situations that lead to PTSD, and how that corresponds closely with the stress-coping and psychological preparation model. Goleman (1995) summarizes the components and process leading to PTSD to include heightened sensitivity for fear responses at the neural level, or, in the language of the stress-coping model, sudden primary appraisal of extreme threat. In addition to the perception that the situation is extremely dangerous or threatening, the person feels overwhelmed, powerless and helpless, and feels unable to escape, change, or cope with the event. This extreme sense of danger, combined with the perceived inability to escape or cope, leads to a sudden shift of thinking from the higher order cortical areas to the primitive, lifesaving responses in the brain’s limbic system. This survival mode leads the brain to secrete neurochemicals that construct more vivid, powerful, and pervasive memories and responses. These strongly engraved pathways also include more details than memories of more typical and manageable situations. Any

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component of these highly developed pathways that recur, even isolated and in another context, can easily trigger re-entry into the state of high alarm and sense of danger. These features are commonly recognized in veterans of war, now safely at home, who “relive” horrifying events that are triggered by a single sound or sight, or in victims of automobile accidents, who can experience a powerful memory-response at the sound of a car door slamming (Goleman, 1995). Clinically, many adults report heightened anxiety, for example, at the aroma of alcohol or hospital disinfectant, with flashbacks to their own frightening childhood experience. This work supports the concepts of the stresscoping and psychological preparation model: providing information to affect the primary appraisal; providing language to help the child and family continue to respond from the cortical centers of the brain; and most importantly, affecting the secondary appraisal by helping the child and family plan and rehearse what they can do to manage, control, and therefore optimally cope with the potentially overwhelming event. APPLYING THEORY TO PRACTICE: THE PROCESS OF INITIATING PREPARATION Knowledge of the appropriateness and effectiveness of various approaches to preparation, gained through the literature, serves as a guide to child life specialists as they plan the most appropriate approach to the preparation process. The range and depth of a practitioner’s interventions are enhanced by experience and intuition. At the same time, responsible professionals realize that one’s practice should be accompanied with lifelong learning and awareness and inclusion of evidence-based practice. Professional practice includes continued education through ongoing reading of the current literature, participation in professional workshops, and clinical supervision that includes self-awareness and personal reflection, all of which promote the integration of personal and professional responses. Practitioners should be self-motivated in seeking sources of new information and seeking feedback about areas of future clinical growth. Sharing clinical stories and outcomes, as well as reflecting on past and current research, that can inform practice, and getting feedback should be rewarded. It is important to facilitate a departmental process (or groups of solo practitioners) who can provide respectful clinical supervision and integration of new learning and theory. Steps in this planning process include collaborating with members of the team, gathering basic information, assessing the demands of the situation, assessing individual variables, determining the focus of care, influencing ap-

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praisal through a variety of means, facilitating coping strategies, and reevaluating appraisal and coping, each of which is discussed in the following sections.

Involving Team Members Child life specialists must rely on assessment skills and teamwork for integrating the multiple factors that converge in the experiences of children and families. Assessment and collaboration facilitates decision making regarding for whom and how intervention will be provided most meaningfully. Preparation and implementation of coping strategies is ideally a collaborative effort. Interdisciplinary communication and understanding enhances this collaboration. Optimal care is delivered when parents or other caregivers are primary members of the child’s caregiving team. They are the best resource for understanding the child’s past experience and what has been useful or disruptive in the past, as well as current needs and expectations. They will know how expectations and coping plans will resonate with their child. They are likely to be available to a child across the range of caregiving settings. Certainly, their caring is the deepest. Parents’ perceptions of issues and needs (as well as children’s responses) ideally guide the nature of supportive care. Thus, the role of child life is to support parents, whenever possible, as leaders in the delivery of support to their children. Some parents may be unsure of their role, and may need welcoming and guidance to participate along with the other members of the team. Others may have personal emotional or health issues or practical matters that make their presence erratic or unlikely. Nonetheless, their presence is what children desire most. Understanding the roles, tasks and beliefs of others is an important foundation of collaborative work. Collaborative work in turn promotes an environment in which the goals of psychological preparation, optimal coping and sensitivity to individual needs can be built. As in all facets of child life care, learning from others is as important as teaching. Fellow members of the healthcare team are in an ideal position to provide information about the aspects of care or procedures that are the most challenging for other children and families. Whenever possible, child life staff should request formal or informal in-services about the procedures that children will experience. It is ideal to arrange in-services as techniques and equipment are newly developed. However, this is not always feasible for all procedures, particularly in settings where many different procedures are performed or when different healthcare providers may vary in their techniques. Child life specialists must balance the demands of staff members’ roles while intervening for the optimal psychosocial care for the child. Child life

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care should reflect respect and understanding of the experience, knowledge and beliefs of other members of the team. While concisely conveying relevant information regarding coping preferences and plans, child life staff should avoid making promises that others will have to keep. It is important that child life staff be certain to offer only those coping options that will truly be available to children and families. Questions related to other members of the healthcare team for the child life specialist to consider include: • Are parents empowered to be central to their child’s coping? • Are all team members empowered to be appropriately involved in nurturing and supporting the child? • Can one person serve as designated coach for the child so that there is less overwhelming and extraneous discussion and fewer commands to the child? • Are we communicating and documenting what we know of children’s preferred coping strategies, and enabling others to facilitate their use? What form of communication will be most effective? Ana The child life specialist working with Ana in the specialty clinic has a close working relationship with the clinic team. Another child life specialist works in the pre-surgical area. Ana’s mother will be her most consistent support and will be essential in carrying through consistent information and coping strategies. Issues and coping plans will be in the form of written communication between the child life specialists as well as documented in a formal chart note. Daniel In addition to his father, the caregiving team involved with Daniel includes a technician, a pediatric nurse and a resident in adult emergency medicine. In the busy emergency department, there are many demands on their time. Each varies in the amount of training they have had in child development or in their experience and interest in working with children under stress. The nurse and the technician have tried their best to support and comfort Daniel, know the child life specialist and are likely to respond to his recommendations. However, the child life specialist must form a quick alliance with the doctor who is frustrated with the child’s protracted distress and difficult IV access. Like the others, this doctor has

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tried his best with very good intentions. However, he is not only sleepdeprived, but also discouraged that his usual efficient skill is not meeting with more success. Like all involved, he has other emergency situations to which he must attend. Also, the physician is not familiar with the skills that the child life specialist has to offer, and may prefer adult patients who do not have the presence of an intermediary, such as a parent, watching over interactions or skills. Jason Staff members working with Jason vary in their comfort level in interacting with siblings when a patient is dying. Some have strong feelings about including all members of the family; others are more reticent. Some staff members believe that parents should make an informed decision about the ways of including siblings while some believe that parents should not be “pushed”. The child life specialist will collaborate with Jason’s social worker and bedside nurse as she learns from and processes options with his parents. She will also learn if a member of the clergy is involved.

Gathering Information In addition to collaboration with members of the healthcare team, it is important that the child life specialist gather information that is relevant to the circumstances. This information ideally will guide the content of the care that will follow. Accurate information about sensory cues, sequence of events, and the timing and duration of procedures is important for several reasons. By conveying appropriate aspects of what might be foreign and frightening, child life specialists help children and families become familiar with the unknown, thereby decreasing distress and positively influencing their primary appraisal. Information helps in predicting potential stress points. Plans that are appropriate to the event, to the child and family, and to the staff involved can be made based on the information that has been gathered. Whenever possible, the child life specialist should learn what the child and family already understand and expect. This information about individual variables is a crucial component of providing care. Ana The child life specialist working in the specialty clinic has learned through experience and teamwork with the surgeon about the sequence of events

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and the environment in which they will take place. However, it is impossible to predict who will provide Ana’s anesthesia care; that information can be gathered on the day of surgery. Thus, most, but not all, of the impending events can be helped to be predictable. Daniel In the emergency room, the child life specialist has little time to learn about Daniel’s history or about the preferences of the resident attempting to start the IV. Most pressing questions include learning if any specific coping strategies have been introduced, and if Daniel’s father and the team are amenable to supporting Daniel in other ways. Jason The child life specialist needs to gather more information about the parents’ perception of how Jason’s siblings are understanding the current situation, what the children have been told about Jason’s illness, and the parents’ desires for attention and support for the children at home. She needs to learn from the social worker and the nurse what has already been discussed with Jason’s parents. She needs to learn more from the medical team about the predicted course of Jason’s illness. Last but not least, she must ask questions to assess the parents’ current emotional ability to consider options and approaches to involving Jason’s brothers at this time.

Assessing the Demands of the Situation In healthcare settings or any other context in which child life specialists practice, there are challenges to child and family coping that are inherent in the situation. Experience in a given work setting helps highlight these potential stress points. A useful question may be, “Which components of this experience are likely to tax or exceed any child or family’s coping resources?” (see Table 1: Examples of Situational Stressors). Some of these stressors may be unavoidable, while others can be influenced by either case or class advocacy (see Thompson & Stanford, 1985, for a discussion of this). The sterile fields, technical equipment, medical supplies and bright lighting that may be required to ensure a safe and efficient procedure may be overwhelming for any child (or adult for that matter) and may be intensified for children and families who are already stressed and fearful. They may be particularly difficult for children with preexisting sensory sen-

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Table 1 EXAMPLES OF SITUATIONAL STRESSORS • • • • • • • •

• • • • • • • • • • •

Separation from familiar caregivers Unfamiliar environment Unfamiliar caregiving routines, even if not frankly painful Painful and invasive procedures The need to stay still for an extended period of time or during a challenging point in care New diagnosis Life-threatening illness Transition points in chronic conditions (e.g., first hospital admission for a child with a chronic illness that has been managed at home; new need for assistive devices for mobility; need for stronger medications) Simultaneous or rapidly occurring contact with numerous unfamiliar adults Transitions to new settings (e.g., placement in foster care, transfer to a different unit within the hospital or to a rehabilitation setting) Altered physical appearance or ability to function Exposure of private body parts Waiting times Lack of privacy Isolation Dealing with the unknown Conflicting or unclear information about diagnosis, prognosis or care Change in treatment plans or discharge date if hospitalized Loss

sitivities. It may be difficult if not impossible to alter these necessary conditions. In any setting, and particularly with young children, restraint may be necessary during many procedures. However, positions and techniques that are both more comfortable and also more comforting may alter the unavoidable stress of being overwhelmed and feeling helpless. See Stephens, Barkey, and Hall (1999) for useful alternatives to traditional methods of restraint in these situations. The situational stressors may include being surrounded by a number of strangers in a setting that is strikingly unfamiliar and intimidating particularly in teaching hospitals. Most children or adults surrounded by strangers who are talking, perhaps about them but not to them, or about entirely unrelated topics, would find the situation intimidating and demanding of coping resources. A child life specialist might work to modify the environment or caregiving protocol for a child who is uniquely and outstandingly overwhelmed (e.g., requesting a limited number of caregivers for a child with previous traumatic experience in a similar situation who remembers that “being sur-

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rounded” was one of the worst parts of that past difficult experience; collaborating with the caregiving team to be specific and conscious of what is being spoken when a child has a visual impairment and is unusually sensitive to sound). If it becomes evident that most, children and families share a certain stressor, the child life specialist might collaborate with the team to alter some aspect of caregiving (e.g., allowing children to keep underwear on until anesthesia has taken effect). Perhaps the most challenging situation to address through class advocacy is the presence of parents during procedures when staff may fear that parents will lose control. This condition, as well as those described above, is potentially modifiable. However, without effort and planning, these challenges will remain. Ana Ana will be waiting in a surgical setting. She will encounter many stressors that are predictable and universal for children having this surgery. For example, she will meet many people wearing surgical scrubs, caps and masks. She will need to wear a hospital gown. She will be hungry. She may have to wait for a while in the pre-surgical waiting area or in the “holding room” outside the operating room. She is likely to have multiple people checking her vital signs. Ana may have a premedication to drink. She and a parent will go to the operating room where they will find themselves surrounded by more people, strange furniture and a great deal of surgical supplies on shelves. She may receive her induction by mask, by IV, or even by injection, a decision that will be made by the anesthesiologist on the day of surgery. When she wakes up, she will be receiving oxygen and humidified air by facial mask. Ana will have an incision with staples or stitches, an IV, a Foley catheter, several other drainage tubes, and possibly an epidural catheter for pain control. All of these will require examination and care from both physicians and nurses. She may go home with one or several tubes. Thus, Ana, like all children having this procedure, will have to deal with an unfamiliar environment and a rapid sequence of contacts with numerous unfamiliar caregivers, unfamiliar caregiving routines, painful and invasive procedures, and postoperative care in which private parts of her body may be exposed. Daniel Daniel is surrounded by unfamiliar adults who are giving him suggestions and instructions. They are pinning Daniel down, despite his ardent

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struggles. The room is filled with all sorts of equipment. He is experiencing the pain of the needle. He will be required to keep the IV in place as well as to wear oxygen and monitoring equipment. The unexpected need for hospital care, unfamiliar environment, multitude of staff, visible array of unfamiliar medical equipment, the need to stay still, and, pain are among the many situational stressors for Daniel. Jason Neither Jason’s family nor physicians predicted the sudden worsening of his illness. The intensive care unit staff and setting are both unfamiliar. Fear and anguish about Jason’s illness have made it hard for them to attend to any other facet of life. Jason’s appearance has changed due to medications and to the difficulties that his body is having with basic functions. Visitors to Jason’s bedside see not only Jason, but also neighboring patients on ventilators who are attached to a great deal of monitoring equipment, a variety of IV tubing and pumps, and with a range of other drainage tubes and orthopedic devices. They hear the sounds of monitors and numerous alarms. The bedside is crowded with equipment and people, and there is little room to move. Thus, while needing to make decisions with the high likelihood of life-long impact for all involved, Jason’s family must also contend with the situational stressors of the unfamiliar and emotionally-charged environment, new caregivers and caregiving routines, the ambiguity of dealing with the unknown, Jason’s changed appearance, changed prognosis, and the likelihood of his death.

Assessing Individual Child and Family Variables Each child and family brings strengths and potential vulnerabilities to challenging situations (see Table 2: Examples of Child and Family Strengths and Vulnerabilities). Thus, child life specialists consider how the situational and individual variables intersect. Developmentally, physically, temperamentally and spiritually, what capacities do the child and family have to interact with the environment? How do the challenges of the situation interface with the normally occurring developmental challenges of each stage? Has a past difficult experience sensitized this child and family to the current experience? Questions such as this lead the child life specialist to predict stress points, as well as to prioritize care in a busy work environment.

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Table 2 EXAMPLES OF CHILD AND FAMILY STRENGTHS AND VULNERABILITIES • • • • • • • • • • • •

The child and family’s degree of familiarity with and trust in staff Past experience with similar situations The child’s general ability to cope with previous stressors The child’s cognitive and developmental capacities Issues related to temperament and resilience Self-esteem Current physical status Current emotional state Sensitivity to pain Familial, social and spiritual support Cultural beliefs that impact upon the situation at hand General beliefs about healthcare providers and hospitals (or, in other settings, beliefs about the legal or welfare system, for example) • Goodness of “fit” with the interactional style of staff • Distance from home, with the resulting impact on ability of significant people to visit, increased cost for travel and meals, and other associated stressors • Parental ability to cope with stress.

Ana Ana, at age four, is bound by egocentric thought. She is likely to perceive pain and illness as punishments for something that she has thought or done. Her preoperational cognitive abilities will impact the quantity of information that she can keep in sequence. Because of concrete thinking, syringes used for IV medications may evoke distress as she may associate syringes with injections and thus with pain. She is likely to be engaged in the struggle that Erikson characterized as “Initiative vs. Guilt.” At this stage, the powerful urges to master bodily functions and activities of daily life with independence make the need to be passive in response to care a particular challenge. It is developmentally predictable that she has questions, curiosity, concerns and awareness regarding genitalia; the Foley catheter and its care and the alteration in her ability to urinate may arouse age-specific anxieties. It is likely that she makes use of fantasy, particularly to make sense of the unknown, and that she has difficulty distinguishing fantasy from reality. Past frightening and painful procedures have raised her fear and distrust of healthcare professionals. Her mother is attentive and thoughtful, but unsure of herself in the hospital setting. Ana’s mother reports feeling “haunted” by subjecting her daughter to the highly distressing VCUG. Her mother states that Ana is

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a very active child, and that she is concerned about how Ana will tolerate the sedentary time after surgery. The child life specialist is aware that there are many potentially overwhelming components for this child having this procedure at this point in her life. Despite advance notice about the surgery, the need to work through past experience and to accommodate Ana’s cognitive capacities and anxiety when addressing healthcare issues place constraints on the number of issues that can be addressed in a single play session. Given that surgery is several weeks away, the child life specialist must assess what issues can be addressed at what time. Daniel At age seven, Daniel is likely to still make use of fantasy to fill in gaps in his understanding of events; however, he should be able to distinguish fantasy from reality. Mastering challenges successfully contributes to the sense of “Industry vs. Inferiority.” The child life specialist is concerned that Daniel will interpret his overt distress as a public display of his weakness and that he will imagine that his peers would have handled it better than he did. He is at an age where many children do not like to address feelings directly and may be concerned with what is “fair.” Daniel has received his primary care in a busy clinic where he has not formed any alliance with healthcare professionals. Thus, they are easily seen as “bad guys.” His peers at home and at school would value “fighting the bad guys” and tales of bravado in persisting in a fight. The child life specialist has no way of knowing at this time that Daniel is struggling with school and beginning to compare himself unfavorably to peers. His teacher is concerned about his language skills, and he has a poorer than average ability to use language to interact with others. The current situation may contribute to his sense of frustration in communicating effectively. While present and doing his best to modify his son’s behavior, Daniel’s father is primarily punitive. The child life specialist assesses that Daniel’s father could be assisted to have a more active role in comforting Daniel and in engaging Daniel in coping behaviors, but that he may feel uncomfortable doing so in the presence of hospital staff. The child life specialist is concerned about the memories that Daniel will carry into the future, particularly given the chronic nature of respiratory problems for many children. He is also aware that in Daniel’s current emotional state it will be a significant challenge to engage him in new behaviors to facilitate efficient conclusion of the procedure.

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Jason Jason’s parents are deeply religious and have told his brothers to pray for Jason. They are praying for a miracle and believe hospital staff to be too pessimistic about Jason’s prognosis. Thus, they have not wanted to tell Jason’s brothers that doctors think that Jason probably will not survive. The child life specialist recognizes the value of hope in the parent’s ability to cope, but is concerned about how Jason’s siblings are making sense of the situation. She wonders about what the boys are imagining as well as what they are overhearing from phone calls, in the conversations of the adults caring for them, as well as from their friends from school and church. She wonders if they are alone with their fears and fantasies. In addition, the child life specialist is concerned about the long-range implications for a family about keeping difficult things secret. Were Jason’s brothers to visit, stress points for them likely would include seeing the changes in Jason, Jason’s inability to respond, the amount of equipment they would see, knowing what to do during a visit in that context, and dealing with the lasting memories of seeing Jason in that condition. Both boys may have guilt that they haven’t prayed hard enough or often enough, or have feelings about their prayers being unanswered. In addition, an eight-year-old may fear “catching” something terrible and that something he did caused Jason to get so sick. A young adolescent may have thoughts and feelings about being watched or judged. There are many individual child and family variables. All involved have never faced the death of someone so young in their family. While in general they have had supportive relationships with previous healthcare professionals, they barely know the staff in intensive care. Their extended family and clergy are involved but as they live quite a distance away, they are minimally present. They are articulate and communicate well with those who enter their world. For Jason’s parents, specific stress points are likely to include introducing the subject of how very sick Jason is, ways of answering their boys’ questions, and meeting the needs of all their children. If the parents elect for the brothers not to visit, stressors for the boys are likely to include feelings related to being excluded, the lack of opportunity to say goodbye, and fantasies of Jason being in pain or receiving adequate care.

Using Assessment of Needs to Determine the Focus of Care All of the above factors converge into the child life specialist’s assessment of what needs to be offered to each child and family. It can be difficult for the child life specialist to balance ideal care with what is realistic and possi-

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ble. A reality of most child life roles is that there is more to do than can be done. Ultimately, the task is to sort through the multiple variables and address the most pressing priorities. Given the demands of the events and the constellation of variables that the child and family bring, two questions may be helpful. First, what components can be influenced so that the child and family will have as good a memory or experience as possible? Second, if there can be but a few goals, what would the priority goals include? Ana Ana is a high priority to the child life specialist because she has had a difficult past experience and is at an age that makes her particularly vulnerable to the impending surgery, and because this surgery would pose challenges to coping in any child. The child life specialist will discuss with Ana’s mother the possibility of an additional play session to provide preparation in a manner that Ana can accommodate given her age and attention span and her tendency to become easily distressed. The child life specialist will introduce play that the mother can continue at home. In this way, they have the opportunity to use play to process past experiences. Separate play sessions will address the experiences that Ana will encounter with pre-surgical testing and on the day of surgery. Daniel For Daniel, the child life specialist decides to intervene in the treatment room and focus on “things to make this easier” for Daniel as well as for his father and for the doctor and others involved. The child life specialist will make a point of framing the roles of the emergency department staff as doing things in the way that is the fastest and easiest for children and explore any possible avenues for forming alliances, even under these highly charged conditions. He will engage Daniel’s father in specific roles of providing comfort as much as he is able. If time and Daniel’s condition permit, he will also provide post-procedural play to address Daniel’s perceptions, particularly the impact of the experience on Daniel’s selfconcept, and to plan “what will make it easier” if Daniel ever needs this kind of medicine again. Jason Discussing options for and ways of including his brothers, as well as sharing information about the potential effects of not including them, may

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help Jason’s parents to begin to open doors for their increased presence. Included among the goals is for the child life specialist to suggest phrases that other families have found helpful that will indicate that Jason is gravely ill, but will still allow for a measure of hope, enabling more honest communication among family members and inclusion of Jason’s brothers in a way that will have the most positive outcome and the least traumatizing memory. The child life specialist will facilitate this process along with the social worker and Jason’s bedside nurse. Clergy may be involved, as well. PROVIDING PREPARATION WITH PLANNED COPING Once a child and family’s needs for preparation have been assessed, the task of the child life specialist is to provide information that will make events seem as predictable as possible, and realistically influence children’s and families’ appraisal so that they have adequate coping resources to manage the impending events. Simultaneously, it is ideal to plan and actually rehearse ways to cope with the anticipated stressors. This active rehearsal is at the heart of psychological preparation. The goal of this process is to influence the child and family’s confidence in their ability to manage the situation. Practice assists coping behaviors to become vivid, familiar and accessible in advance of the situation. In order to engage in these behaviors, many children and families need coaching during the actual procedure.

Providing Information and Influencing Appraisal As described earlier, thoughtfully presented information can influence children’s and families’ primary appraisal of their ability to manage impending events. The goal is to help make an otherwise unknown situation seem familiar and predictable, and for all involved to make the assessment (“appraisal”) that, even if challenging at times, the event indeed will be manageable. Information can also help identify any parts which may be difficult and, thus, should be practiced. Certainly, the need for information varies based on numerous factors. For example, the need for information differs if the child life specialist is interacting with children before, during or after an event. Expressive and receptive language, the ability to sequence information, and other developmental capabilities influence the style of the interaction. Additionally, coping styles lead some children to want to gather information in advance, while the same amount of information may raise the distress of another child. Thus,

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quantity and style of information should be individualized to match the individual variables of each child. Before an unfamiliar event, it is useful to help make sensory experiences and sequence of events predictable. Information should include sights, sounds, odors, tastes and tactile sensations that the child will consciously experience. Whenever possible, the child life specialist can compare these with similar situations that the child has already mastered. As soon as young children have the cognitive and motor capacities to imitate routine tasks (around fourteen months of age in typically developing children) it is useful to actively expose them to play that familiarizes them with upcoming events. For children who are cognitively capable but have temporary or permanent challenges with motor skills, this play can be offered vicariously on their behalf. Infants in their first year of life can explore and become familiarized with equipment and hospital garb and can play games such as peek-a-boo if separations will be involved. Unfamiliar situations and the presence of strangers are a predictable stress point for very young children. Components of psychological preparation with planned and rehearsed coping can be included in interactions designed to familiarize and promote coping in the presence of unfamiliar people and elements. A child or family with past experience in a setting may have a lesser need for additional information. However, they may have a greater need to talk or play through what has happened in the past and to interpret those experiences. Moreover, the information they have about past experiences may be useful, helping them to understand the parts they can master or control, as well as the parts that might be done differently in the future. Play or discussion may also reveal fantasies and misperceptions that need to be addressed. Indeed, the balance of the information exchange should be what child life specialists learn from children and families rather than what child life specialists teach them. There may be little time for exchanging information when intervening in the midst of a challenging circumstance or crisis. Most useful will be questions geared to assess the parts of the experience that are hardest for the child and family at that particular moment, and information about effective strategies to apply immediately. Ana During play about the VCUG, the child life specialist will want to learn what Ana remembers the most, what was hardest for her, and why she thought it happened (particularly searching for the fantasy and egocentric thinking common for children Ana’s age). She will also be attentive

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to the language Ana uses to describe her experience. The child life specialist explains that they will use play to understand how things usually go to minimize difficult surprises. Interventions will emphasize how this is different than before. They will play about waiting in the small room, answering questions, blood pressure and temperature like in her doctor’s office, changing into hospital pajamas and getting medicine so that she won’t feel her operation. Daniel The child life specialist asks Daniel what parts are hardest for him. He says the needles, and everybody holding him down. The child life specialist asks Daniel to draw a picture showing a boy having an IV started. The child life specialist notes that the size of Daniel’s representation of the needle is larger than the entire child in the drawing. In the little time remaining, the child life specialist hopes to address both appraisal and planning for future similar situations. Time is limited, and all may not be possible. At first, they explore what it’s like to be a child feeling a needle, and they also compare together the size of a real needle and the tip of a pen. They wonder together which is the tiniest and joke about whether anyone could even be able to read it if someone wrote his name with the point of the needle. Next the child life specialist asks Daniel and his father if they want to learn things that many children have said make the part with the needle easier. He also asks Daniel which way he thinks it will go more quickly: if he is moving, or if he is very still. Suspecting that Daniel still will need help holding still, they quickly explore Daniel’s preferences for where people should stand while helping his arm to be very still. He asks Daniel’s father what he thinks is the most helpful. The child life specialist lets the doctor know that these things should make it easier for everyone. Jason With Jason’s family, the child life specialist uses questions to explore the advantages and disadvantages of a visit and of conveying the severity of his illness. Examples of the questions include: What do you think your boys are imagining? How do you think it will be for them if they are not included? What are you most worried about if they were to see Jason now? Are you interested in hearing some ways that families have talked about difficult times in a manner that still leaves room for hope? Her goal is not to convince, but to help make things as manageable as possible for all, given the difficult circumstances.

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Attention to Language As we provide information to children and families, the language that we choose can significantly influence appraisal. The language used in play and discussion is also likely to become the language used to recall the event. Confusing terms and jargon abound in a healthcare setting. Words that are unfamiliar (e.g., vital signs, VCUG, catheter), that sound like other familiar words (e.g., dye vs. die, PICU vs. “pick you”), that are harsh (e.g., medicine that will burn or sting, “shoot” an x-ray) and that have more familiar meanings (e.g., “stool” collection; lie on the “table”; “broken” arm; send you to the “floor”) may increase confusion and raise anxiety. Conversely, familiar and “soft” terms may positively influence children’s and families’ primary appraisal of the situation. This has been described in greater detail by Gaynard, Wolfer, Goldberger, Thompson, Redburn and Laidley (1990). The goal in selecting language is to account for a child’s developmental level, incorporate familiar terms, make choices that are “the softest language that is honest,” and to be aware of unfamiliar terms that the child is likely to overhear. Ana In processing her experience with the VCUG, the child life specialist talks about the place in Ana’s body where her “pee” (Ana’s family word) comes out and the tiny tube to help the “x-ray medicine” go in. While playing about surgery, the child life specialist uses terms such as “medicine sleep that makes it so that your body won’t feel anything” for the state of being under anesthesia; “tiny opening” for incision; “medicine water” for IV fluids; “tiny tubes to help her pee come out while her body rests” for the stents and suprapubic tubes; and “very sore at first, then better and better each day” to refer to the postoperative pain. Daniel In the Emergency Department, the child life specialist remarks that it is sort of odd that people in hospitals sometimes call beds “tables” He is careful to refer to the IV catheter as the tiny tube, the Betadine as brown soap, and the arm board as a sort of hand-holder. Jason Jason’s family seems comfortable with phrases such as “the nurses and doctors are using everything they know, but still Jason’s body is very, very sick” and we are “very worried” as bridges to talking about the

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severity of his illness. The child life specialist asks the parents how they think it would be for the boys to keep their worries to themselves. The parents are encouraged to ask Jason’s brothers what things they are thinking and worrying about the most, and the child life specialist explores with Jason’s parents their concerns about opening up that topic. Together they rehearse some possible responses. They are assured that the child life specialist, social worker, chaplain, nurse or physician, alone or in combination, could be present to help them with this discussion if they would like. They are given recommendations for terms for what the boys would see at the bedside, such as “a machine to breathe for Jason,” “tubes called IVs for medicines, blood tests and food,” “different beeping sounds from machines that help the nurses and doctors know when he needs more medicine or if other things need help” and “other machines that monitor his heart beating and his breathing.”

Tools that Facilitate Preparation Tangible tools can assist in the task of conveying information about sensory experience and sequence of events. Photographs, dolls and actual or pretend medical equipment can enhance the degree to which an unfamiliar situation is made more predictable. It is ideal to have a range of materials for use in preparation. Child life specialists often choose dolls and puppets to enable children and families to form a concept of a sequence of events, as well as to rehearse coping behaviors. Multimedia can be used to help make an unfamiliar setting or experience become recognizable. Digital and print sources have important roles. Audio and video recordings can be used to acquaint people with unfamiliar and potentially overwhelming sounds. The most direct means of becoming familiar with aromas and manageable physical sensations such as cool alcohol wipes or bandages is to use the actual equipment. Real equipment that is proportionate to the size of a doll used in the preparation is also ideal for making healthcare equipment familiar.

Choosing and Using Dolls and Puppets Vinyl dolls with appropriate anatomic features are typically most useful for play about healthcare with toddlers and very young preschool children. For play in preparation for broader issues, like separation from families or moving to a new location, figures of people or animals or anything that can be grouped as having the characteristics of a family can be used (mommy, daddy, baby, grandmother, etc.). For purposes of prevention of the spread of infectious disease, cloth dolls and stuffed animals are not safe to be shared

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among children. Blank cloth dolls, as described by Gaynard, Goldberger and Laidley (1991), are ideal for preparing children for healthcare procedures, as they allow the use of real needles and can be used to rehearse positions that the child will need to assume. Additionally, children can keep these dolls, which permits repeated play and rehearsal as the child desires. The dolls can be used as puppets in the sense that they become a vehicle through which the child speaks. The child’s own stuffed animals may be vested with emotional meaning, so may not be the best choice for medical play, particularly if preparation may affect the appearance of the stuffed animal. Using blank cloth dolls avoids altering or unnecessarily “hurting” something that already seems real to the child. Puppets and puppet shows have long been used in preparation. Children will often express thoughts and feelings through puppets that they might not express directly. Puppets can be helpful in guiding children to use new coping strategies. Puppet shows, in which children are passive recipients of information, may not be as useful for preparation as the more active participation involved in using dolls for dramatic healthcare play. Scripted puppet shows for groups of children cannot be individualized for past or upcoming individual experiences. Ana A blank cloth dolls will be used for Ana to describe her past experience as well as to prepare for the upcoming surgery. Her mother can support Ana through this play at home, monitoring and addressing feelings and misperceptions as they arise. Daniel Daniel will be offered a “hospital doll” to work through his thoughts and feelings after the IV is placed, and to rehearse what would help if he is ever in that situation again. Alternatively, puppets would be useful and appropriate tools for Daniel to put words to his experience. Jason If their parents elect to further involve Jason’s siblings, they will be provided with a blank cloth doll to which they can be guided to attach all the equipment that they will see. Jason’s teenage brother may just watch or may choose to help his younger brother. Additionally, the child life specialist is aware that blank cloth dolls can become powerful memory objects, regardless of Jason’s health outcome.

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Using Photographs and Videos Visual materials can be invaluable in helping children and families gain a sense of an unfamiliar setting. Photographs should be clear and vivid, and one should consider carefully the following when using them: • the amount of detail to show in each photograph without being overwhelming • that the child is adequately covered • that the affect displayed by the child and staff is appropriate • the perspective of the camera • the images represent diversity in age, gender and race, if children and parents are used as models • the diversity of staff, if they are included in photographs • that the most likely stress points are represented. Photographs can then be used for planning and rehearsing coping strategies • that written text is minimal. The child life specialist can then adapt what is conveyed to individual developmental age, emotional needs and past experience of the child and family involved. In general, carefully chosen photographs are a valuable tool. They can be particularly useful when child life specialists and other staff do not speak the same language as a child and family. Child life specialists should carefully consider what materials such as photographs, digital sequences, and videos help children and families project themselves mastering their future healthcare experience. Many photo albums, digital and printed books are developed with text, layout and decorations that are designed to appeal to a specific age group, which invariably limits their appeal for children of other developmental ages. Texts often are too wordy for any but the most patient of children. Child life specialists should consider what presentation will best serve the children and families and provide the greatest amount of flexibility. Additionally, digital sequences and photo albums in the hands of anyone without sufficient training may become a tool for didactic teaching or simply reading, rather than an interactive tool that emphasizes planning and rehearsing coping strategies and eliciting individual children’s fears, fantasies and misconceptions. Images combined with simple phrasing may help avoid that. An example might be: “Here is a picture of the operating room. What things do you notice first? This girl wanted to sing her favorite song while she’s in this room. Other kids want to look at a picture while they’re falling asleep. What would you like to do?”

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Video can also be used to acquaint a child and family with a setting. They offer a realistic view of another child in that setting, yet they have limitations. For example, in using filmed modeling, the procedure and events must closely resemble the situation that the child will encounter, and the model must be one to whom individual children can identify as being like themselves. Thus, a video used in preparation for surgery would need to account for the many individual variables such as mask or IV induction of anesthesia, outpatient and inpatient recovery, and postoperative experience such as the presence or absence of incisions and drainage tubes. Staff members need to be attentive to the use of video and ensure that discussion and rehearsal of coping strategies are included for each child and family. Ana Photographs will be available for Ana and her mother to view including the pre-surgical waiting area, doctors and nurses in surgical scrubs, the “bed on wheels” that children ride on the way to their surgery, the lights on the ceiling that they will see as they ride down the hallway, the holding area outside the operating room, and the actual operating room. If Ana’s attention span is limited, the child life specialist may choose to use just a few, such as the waiting area, the staff in scrubs, and the operating room. Daniel Daniel’s own images are important after his ordeal. The child life specialist asks Daniel to draw a picture of what it was like for him while he was getting his IV. Jason Intensive care unit staff has an iPad with clear photographs of equipment available on the unit. In addition, photographs of Jason are offered to Jason’s parents to help his brothers be ready to see how he currently looks and to know what they will see at his bedside. If they choose to visit, additional pictures will be taken of them to keep at Jason’s bedside. Finally, pictures of each of them with Jason will be taken to help them process and hold on to this important memory.

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Real Equipment versus Facsimiles In order to become familiar with a potentially overwhelming situation, children and parents are helped if they actively acquaint themselves in advance with the unfamiliar equipment. As with all other components of the process of psychological preparation, the use of equipment is intended for familiarization, active rehearsal of coping strategies, and appraisal of the situation as manageable. They do not need to see or handle equipment that they will not feel or see. Whenever possible, equipment chosen should be in proportion to their doll. It is more important that the equipment facilitate the perception for the child that they can handle the situation than the equipment be technically accurate. A neonatal nasogastric tube might make a better doll Foley catheter than might an actual Foley catheter, which would be very large in proportion to the doll. Tubing cut from tiny butterfly sets can portray postoperative drainage tubes. Particularly useful and intriguing for children is the use of “doll medicine” for doll IVs. This can be made by withdrawing half the fluid from a bottle of normal saline or sterile water for injection and replacing it with food coloring. This is useful not only for conveying the image of having a number of medicines from which to choose, but also for the members of the healthcare team to quickly and easily differentiate the doll IV from the child’s actual IV. With children for whom any actual equipment is too threatening, commercial toy equipment can be used to help play through the impending events. Again, the focus is on finding tools that will enable the events to be predictable and to plan and rehearse coping strategies. Ana A tiny neonatal nasogastric tube serves as a catheter for Ana to use when playing about the VCUG. A real stethoscope and neonatal blood pressure cuff are used to admit her doll to the pre-surgical area. A neonatal anesthesia mask is used for her doll, and a child-sized mask is available for Ana and her mother to try. Tubing cut from tiny butterfly needles are taped to Ana’s doll where her postoperative tubes will be located, and they tape “medicine water” (doll IV) to the dolls arm. If Ana’s attention span will allow, they will add “doll medicine” to the doll’s IV.

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Daniel The child life specialist quickly shows Daniel and his father a small (24 gauge) IV catheter, and asks them if they know that the doctor will gently slide the needle out once the tube is in just the right place in his vein. Jason If Jason’s brothers are able to visit, they will be given a chance to understand what is happening with Jason through play with a child life specialist. They may place electrodes on a doll for monitoring equipment, an NG tube to keep the doll’s stomach empty, an endotracheal tube (cut to be appropriate in size for the doll) to help the doll breathe, and an IV to give him medicines. In this instance, the child life specialist will allow the brothers to add numerous “doll medicines” in the IV to convey the message that they are trying everything that they know. PLANNING AND FACILITATING COPING Clearly defined coping strategies can influence the child and family’s appraisals of their ability to manage impending events. As soon as potential stress points have been identified, it is imperative to ensure that children and families have available to them coping strategies that will minimize their distress. The operant questions to ask in planning care include: What will make this take the least amount of time? What will make this take longer? What can we influence so that the child and family will take from this challenging situation an enhanced sense of competence? When playing through stressful events with children, it is important that the ideal coping behaviors be actively rehearsed. For example, if wiggling during a procedure would increase the need for restraint or sedation or prolong the time of the procedure, then it is crucial to have children rehearse staying still and plan what they will do if they feel like moving. The child might teach a doll by demonstrating to the doll how to stay still and teach the doll to blow if he or she feels like wiggling. If an anesthetic cream is going to be used to numb the area of an injection or IV start, it is important to let a child unfamiliar with the concept of numbness learn through experience what it means so that he or she can come to trust that it will work. Ideally, this should be done in advance, at home, in a familiar or neutral hospital or clinic room, or during a play session. The child could have tiny amounts of cream placed in one or two places and have the opportunity to explore the

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sites and compare the difference between the pressure which will still be felt and the pain which should no longer be present.

Recognizing Naturally Occurring Coping Styles When making choices about how much information to include and what kind of coping strategy to select, it is helpful to the clinician to recognize a child’s natural preferences. One framework for conceptualizing coping styles has described people as either vigilant or avoiders. Someone who is classified as vigilant may articulate anticipatory anxiety, ask questions, and tend to make emotional or task-oriented plans to deal with stressful situations. Someone with an avoidant style is more likely to engage in efforts to postpone or avoid acknowledging the event for as long as possible. These styles may influence how much information and rehearsal the individual can tolerate. However, even children who prefer to avoid impending events need enough information to orient themselves to the events and rehearse a strategy for the situation that is potentially overwhelming to them. Planning and rehearsing an alternative focus may provide a benefit for many children and families (Smith, Ackerson, & Blotcky, 1989). There is some evidence that children with a preferred coping style of avoidance are at greater risk for responding with difficulty to medical procedures (Peterson & Toler, 1986; Melamed & Ridley-Johnson, 1988; Blount, Davis, Powers, & Roberts, 1991). Thus, it is important that all children and families are provided both with core reference points that lend order and predictability to the procedure, as well as with a means of support or a strategy that has been rehearsed to disengage and shift focus if that becomes desirable. Coping styles are not rigid; they can change each time a person faces a new stressor, or even the same stressor at a different time. Children may not be able to generalize the use of a previously learned strategy to a new context without support. Coping styles may change over the duration of an illness as children grow developmentally, become more or less secure in the environment, have adjustments in their understanding of the stressor, and develop a coping history and repertoire. Coping styles may also be altered by factors such as exacerbations and progression of medical condition, by changes in psychosocial support, or a wide array of other factors. Ana Ana’s mother has learned that Ana does best with a little information fairly close in time to the event. She needs some warning and time for questions. However, too much information, or information given too

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much in advance, seems to raise Ana’s distress. Ana’s mother must balance this with her personal tendency to gather information and engage in some anticipatory worry, as well as her desire to protect Ana from difficult stressors. They decide to start using picture books to begin talking about hospitals a week prior to surgery but to postpone more specific preparation until a day or two before the actual surgery. Daniel Daniel’s past history includes distress with routine medical care. He typically plays vigorously in the waiting area, acts as if nothing is going to happen, then becomes overwhelmed during exams and immunizations. His distress in this unknown medical situation made it difficult for him to process new information. Jason Jason’s parents report that their older son typically worries frequently before exams in school or other stressful situations. His tendency has been to focus on events and ask a great deal of questions, although this diminished as he entered adolescence. Jason’s younger brother is reported to be currently more active than usual, and is not asking any questions at all. Although family has believed that this younger brother is doing fine, as they talk together they realize that his activity is likely a sign that he is avoiding the overwhelming nature of his fears and fantasies. Both boys need some relief along with some information about what is happening and how they can choose to be involved.

Selecting and Rehearsing Coping Strategies Coping strategies are the specific efforts to manage stressful demands (Lazarus & Folkman, 1984). They may be external, observable behaviors or internal processes such as thoughts. It is optimal to pair coping strategies with potentially overwhelming events in a timely manner. A child life specialist must be familiar with a broad range of strategies, but offer a child and family a more focused selection of potential strategies from which to choose, allowing the flexibility to plan different strategies for different parts of the procedure. For example, children may want to focus their attention on an intriguing object during the initial phases of a procedure such as having an IV placed, but count and blow for the part with the needle. The strategies offered should combine properties that are appropriate for the child’s per-

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sonality, interaction, developmental level, family beliefs and attitudes as well as the situation. Children seem to do best when they have a few solid skills on which to rely (Worchel, Copeland & Barker, 1987). A summary of coping techniques or strategies, many of which have been discussed in this chapter, appears in Table 3. These strategies are categorized by the predominant modality used in a given approach. Techniques categorized as sensory rely on sound, touch, or movement to enhance the child’s coping capacities. Cognitive approaches include those that help reframe or refocus thoughts from negative to positive, while behavioral approaches introduce behaviors that that are compatible with the successful completion of the threatening event. Combined cognitive-behavioral approaches are often among those employed in formal research, as described in the Cochrane Collaboration (Uman, Chambers, McGrath, & Kisely, 2007). Included among these strategies are some that involve what is commonly referred to as “distraction.” There is an important distinction between the standard terminology of distraction and the more specific descriptor of “choosing an alternate focus.” With distraction, there is the implication that Table 3 EXAMPLES OF COPING STRATEGIES FOR PAINFUL PROCEDURES Sensory NB: This may function either as an alternative cognitive focus, to provide child’s sensory receptors with positive input to counteract the pain, or a combination of both

Positioning

-Holding, such as on a parent’s lap, offers a focus away from the procedure, and facilitates the ease of a procedure -Swaddling, for young infants, to provide physical security

Movement

-rocking or patting

Soothing Touch Massage

-coursework recommended in infant massage

continued

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Table 3—Continued Thermal regulation -hot packs, heating pads, warm blankets -cool cloths, cold packs and ice packs

Cognitive

-positive touch, massage or thermal regulation may also become a cognitive strategy when a child or adolescent is encouraged to focus their attention on the positive feelings

Music

-music that provides comfort to infants has certain properties, such as steady tempo that is at a similar rate to infant’s ideal target heart rate (to hopefully entrain at a physiological level), or that replicates intrauterine experience -parent singing familiar lullaby can be ideal for infants and toddlers -toddlers and older children can choose to sing a song with a parent or other adult -hymns can be particularly comforting for some children -can become an alternate focus (cognitivebehavioral strategy) or method of timing (cognitive strategy) -music for preschool and young school-age children may have either soothing or humorous qualities -music that is chosen by older school-age children and teens may be disconcerting to adults; headphones should be used

Conscious choice of alternate focus (sometimes called “distraction”)

-utilizes cognitive skills to focus attention away from painful or stressful event -may choose to perform a cognitive task such as counting, reciting the alphabet, reviewing spelling words or a vocabulary list -may choose to focus attention on another body part; sensory strategy may facilitate this -may choose a humorous task, such as selecting a favorite joke from a joke book or telling silly stories -may be comforted by family anecdotes -may prefer to listen and assign selected adult(s) to tell stories or jokes, or otherwise do the talking -useful visual materials on which to focus include such items as intriguing books, “magic wands”, kaleidoscopes continued

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The Handbook of Child Life Table 3—Continued -Gameboys, videotapes and other electronic devices useful for older children and teens -virtual reality is a more all-encompassing alternate focus that may tap into sensory and behavioral strategies as well Thought Stopping Self-Instruction

Therapeutic Storytelling

Intellectualization

Reframing

Spirituality or prayer

-Positive, continuous, encouraging self-talk to stop negative thoughts and promote reassurance and self-control -can help if child or teen writes positive statements on an index card -books, often with metaphoric content (classic example: The Little Engine That Could) or offering avenue of emotional escape -individually invented stories with metaphoric content with successful resolution of a similar dilemma -scientific knowledge and information seeking to remove the emotion from the procedure -may be child’s natural approach to new situations -if provided by staff in service of coping, should have goals of (1) positive impact on appraisal and anticipatory anxiety, (2) formal and concrete link between practice and procedure to impact appraisal of predictability and progression of events, and (3) include not only information about sequence of events, timing and duration, but also what activities and behaviors on the child’s part will be most helpful -rethinking past experience perceived as difficult in a new light with attention to thoughts, actions that may have been overlooked but were helpful -led by family member or clergy of family’s choice -some children and their families have found comfort in singing hymns, reciting psalms and otherwise engaging in prayer continued

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-may appear as explicit ritual (anointing of the sick) or implicit (conversation about meaning and suffering) Humor

-interventions may be facilitated by funny videos, joke books, a Humor Cart, child planning simple practical jokes, or commercial materials such as silly string

Imagery

-multisensory experience using imagination and as many senses as possible -uses an image that is comforting and brings a sense of security -guided imagery led by a person other than the patient; older children with preexisting experience may use an audiotape; -REQUIRES TRAINING.

Hypnotherapy

Behavioral

-REQUIRES TRAINING AND SUPERVISON -utilizes patient’s imagination skills -may encourage patient to transform or dissociate from painful event -“magic glove” and “pain switch” are two useful strategies

Relaxation Techniques –Blowing –Deep breathing

-controlled breathing, both deep rhythmic and shallow panting, is effective to increase oxygenation and peripheral blood flow. -“blowing the feelings away,” “blowing to help your veins be full,” or “blowing to help your muscles be loose” also can be useful cognitive focus during procedures -bubbles and party blowers can be useful for younger children -older children can understand the physiological response and do well with coaching; can be compared to using Lamaze for childbirth

—Muscle relaxation

-rehearse voluntarily tightening then relaxing various muscle groups -may want to focus on tightening then relaxing entire body at once, or focus on specific body parts

continued

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The Handbook of Child Life Table 3—Continued -for general relaxation, may start at toes and work upwards with “tighten and relax” exercise Desensitization

-child maintains adaptive coping behaviors in a stepwise manner increasingly approximating the actual events -may include exposure to actual equipment and locations -can be useful in rehearsing for MRIs, radiation treatments, etc. -medical play and art-and-craft activities with medical equipment offer additional opportunities for desensitization

Modeling

-child is shown videotape or photo album of another child mastering the same experience -model must go from a state of similar anxiety to mastery -age, gender and race of model important in having patient relate to model as credible

the caregiver is active in choosing a device for distracting and in controlling the child’s attention while events unfold behind the child’s back. With alternative focus, more respect is implied about the child’s active participation in selecting and implementing the strategy. Additionally, in communications with other disciplines, the phrase “supported a child’s use of a planned alternate focus” reflects more skill on the child life specialist’s part than does the phrase “provided distraction.” Interestingly, the literature about preparation in pediatrics typically includes a host of articles reporting results of “preparation” during which the sole intervention is a tightly controlled form of distraction. It is not surprising that results of such research are variable and typically only weakly effective. According to the theoretical foundation and orientation of the child life profession, distraction is never in and of itself preparation and certainly not considered psychological preparation. The work of child life includes far more focus and intention on children’s and families’ active roles and choices, as well as range, flexibility, and skill on the part of the child life specialist. Although this chapter has focused primarily on medical events, the practice of selecting, planning, and rehearsing coping strategies is more broadly applicable to any context in which child life specialists may work. Many of

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the techniques identified in Table 1 have been used in the non-pharmacologic management of pain, either alone or in conjunction with pain medication (Brown, 1996). Nevertheless, they may be similarly useful in other stressful circumstances. Just as strategies can be identified and rehearsed for coping with pain or an impending procedure, so, too, can they be applied to other stressors that children face, such as visiting with critically ill relatives, dealing with teasing, confronting the world in a body altered by injury, or facing long-term separation from a family member. For example, when visiting critically ill family members, it may help to anticipate the most difficult parts and rehearse what the child might do or say at the bedside. Children can be helped to plan the songs they will sing or select the artwork they will display. They can be helped to talk about the happy memories they will always have of the person. For children returning to school with an altered body, they can be helped by rehearsing in advance what they will say or do if other children stare, tease or question them. For a child being sent to a new foster care placement, it may be useful to plan with them what they will think and do when confronted with unfamiliar routines and with missing their parents at vulnerable times such as bedtime. This may include positive self-talk and may be assisted by pre-recorded messages or pre-selected books with metaphoric themes that enhance comfort and hope for a desired outcome.

Post-Procedural Evaluation Preparation is not a linear process with a defined beginning, middle and end. Child life specialists engage with children and families at many points in their stressful experiences. Child life specialists have the opportunity to make a positive impact, whether first contact with a child and family is in a treatment room in the midst of a procedure, on the day of surgery after a child has already accumulated pre-surgical diagnostic experiences, in an outpatient clinic at the time of diagnosis, or in any other context in which child life works with children. It is important to learn from children and families their perception of what has helped, what has made it harder in the past, what they believe may make things go more easily in the future. Similarly, after a child life specialist has facilitated the use of new coping strategies, the perceived efficacy of these interventions should be evaluated whenever possible and adjustments made in planning for future similar situations. Postprocedural healthcare play, verbal debriefing and observation all play a role. In this manner child life can help children and families to create some distance from past difficult circumstances and support the sense of confidence that they will be able to cope effectively in the future.

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Ana In play sessions during the post-operative time in the hospital, one of the child life specialist’s primary goals was to learn about Ana’s assessment of the events, and her self-concept in coping with those events. Post-operatively, Ana was more eager to engage in healthcare play than she had been prior to surgery. In fact, it was typically the play in which she was most interested. Although initially her play as “Nurse Ana” was notably directive and included scolding, within days her tone softened and her “nursing care” was essentially nurturing in tone, with lots of reassuring messages to her doll-patient that she was doing the best job that she could do. When the child life specialist asked directly at different points if she and “Nurse Ana” had told the doll the right things about surgery, if they had left out some things that were important, or if they should have described things differently or used different words, Ana was alternately thoughtful and silly. She replied that there were too many people in the room where she got the medicine to help her sleep, that too many people came into her hospital room, and that people asked too many questions. Later, she said that she was more than “very, very sore” when she woke up. She did not appear to be holding back other responses, but did not offer a lot of other words to give better descriptions to help other dolls or children. Ana’s mother remained interested in taking an active role in assisting with her daughter’s adjustment. They decided that her mother would help Ana make a story book about Ana’s experience for other children who might need an operation, with advice about what helps the most. Although Ana started that project eagerly, she soon turned to the more novel playroom activities. The child life specialist reassured Ana’s mother that this typically is a good sign that a child has mastered the stressful parts and is ready to turn her attention to a fuller range of play. She asked Ana’s mother to let her know if there were any changes in Ana’s coping with the challenges of hospital care and routines. When her day of discharge approached, the child life specialist made one request of Ana and her mother: Even if they did not write any of the other pages in between, to write a last page of the story of how Ana would remember her own story of the hospital. Ana said that she had been scared and did not want to have any operation, but that she was brave, and her mommy and her nurse always helped her feel better. She ended by saying that she was going to be a nurse for children when she grows up and take care of real children and their dolls.

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Daniel Daniel seemed exhausted after his IV was eventually placed. Knowing that his self-concept as a “big boy” may have been vulnerable due to his protracted crying, and that his father may have shared that perspective of how “big boys” should behave, the child life specialist chose for the first post-procedural intervention to compile a list of all specific behaviors in which Daniel had engaged that were brave and that helped make the difficult time go more smoothly. The child life specialist printed out a certificate noting Daniel’s bravery, and included on the award that bravery was doing something difficult, even if it was a painful or frightening thing to do. Daniel’s father seemed apologetic about his son’s expressions of distress, but with encouragement he was also able to help supply examples of times that were particularly difficult during which Daniel did his best. Daniel’s father and the child life specialist also remarked about the strength and agility that Daniel used to try to protect himself, and how these same skills are helpful in his everyday life, such as in sports and keeping his father on the move. Daniel was sleepy and irritable, and attempts at learning from him what he did that he thinks made the IV placement easier and what he wished he could have done differently were met with shrugs and indifferent grunts. He did agree to make a quick drawing of what it was like to have the IV placed. He drew himself and others as scribbles but made clear drawings of very large syringes, much larger in scale than the scribble people, but drawn with developmentally appropriate skill and attention to detail. He wanted to tear up the drawing afterwards. The child life specialist left a note in Daniel’s chart regarding his concerns about Daniel’s self-concept after the protracted struggles during IV placement. He also left an email for the child life specialist on the unit to which Daniel would be admitted recommending post-procedural play when Daniel was more rested. He suggested discussion and evaluation with both of Daniel’s parents about concerns related to school performance and its impact on Daniel’s self-concept, and recommended that Daniel’s family also be referred to social work to ensure that they were positioned to make the best use of community resources. Jason Following through with Jason’s family is more difficult, as there are intense and complex immediate short-term, as well as a lifetime, outcomes. Jason’s parents discuss with the child life specialist and social worker

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about word choices that might open a discussion, and agreed that in the big picture they wanted theirs to be a family in which any topic, even the most difficult, could be discussed. Their pastor arrived and prayed with them, searching for the right path for Jason’s two brothers. As was the hospital’s customary practice, a designated staff member kept in contact with the family for the first weeks following Jason’s death and with regularity for at least the first 25 months after his death. The family was also invited and came to the hospital’s annual memorial service for the children who had died in past years. When asked what gave them comfort and what could have been handled differently, the family reported that they appreciated being respected for their wishes in regards to Jason’s final days. Solnit (1984) notes that a child’s “past” or experience serves as preparation for the present and the future. Whether there is careful advance preparation or whether the child was faced with a sudden crisis, the memories become fabric of the child’s personality, identity and style of coping with life’s stressors for years to come. When we prepare children, we help them not only to master an immediate challenge, but also to bring forth a coherent personality and sense of self into the future. These became part of that child who went forth every day, and who now goes, and will always go forth every day. Walt Whitman REFERENCES Bailey, K., Bird, S., McGrath, P., & Chorney, J. (2015). Preparing parents to be present for their child’s anesthesia induction: A randomized controlled trial. Anesthesia and Analgesia, 121(4), 1001–1010. Bandura, A., Grusec, J. E., & Menlove, F. L. (1967). Vicarious extinction of avoidance behavior. Journal of Personality and Social Psychology, 5, 16–23. Blount, R. L., Davis, N., Powers, S. W., & Roberts, M. C. (1991). The influence of environmental factors and coping style on children’s coping and distress. Clinical Psychology Review, 11, 93–116. Brewer, S., Gleditsch, S. L., Syblik, D., Tietjens, M. E., & Vacik, H. W. (2006). Pediatric anxiety: Child life intervention in day surgery. Journal of Pediatric Nursing, 21, 13–22.

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Brown, R. T. (1996). Introduction to the special series on pain: Refuting clinical folklore. Children’s Health Care, 25, 237–251. Butler, L. D., Symons, B. K., Henderson, S. L., Shortliffe, L. D., & Spiegel, D. (2005). Hypnosis reduces distress and duration of an invasive medical procedure for children. Pediatrics, 115, e77–85. Capurso, M., & Ragni, B. (2016). Psycho-educational preparation of children for anaesthesia: A review of intervention methods. Patient Education & Counseling, 99(2), 173–185. Chan, C. S., & Molassiotis, A. (2002). The effects of an educational programme on the anxiety and satisfaction level of parents having parent present induction and visitation in a postanaesthesia care unit. Paediatric Anaesthesia, 12(2), 131. Chen, E., Craske, M. G., Katz, E. R., Schwartz, E., & Zeltzer, L. K., (2000). Pain-sensitive temperament: Does it predict procedural distress and response to psychological treatment among children with cancer? Journal of Pediatric Psychology, 25, 269–278. Chen, E., Zeltzer, L. K., Craske, M. G., & Katz, E. R. (1999). Alteration of memory in the reduction of children’s distress during repeated aversive medical procedures. Journal of Consulting and Clinical Psychology, 67, 481–490. Chen, E., Zeltzer, L. K., Craske, M. G., & Katz, E. R., (2000). Children’s memories for painful cancer treatment procedures: Implications for distress. Child Development, 71, 933–947. Dahlquist, L. M., Gil, K. M., Armstrong, F. D., DeLawyer, D. D., Greene. P., & Wuori, D. (1986). Preparing children for medical examinations: The importance of previous medical experience. Health Psychology, 5, 249–259. DeBellis, M. D., Keshavan, M. S., Clark, D. B., Casey, B. J., Giedd, J. N., Boring, A. M., Frustaci, K., & Ryan, N. D. (1999). Developmental traumatology Part II: Brain development. Biological Psychiatry, 45, 1271–1284. Durand, D. J., Young, M., Nagy, P., Tekes, A., & Huisman, T. A. G. M. (2015). Mandatory child life consultation and its impact on pediatric MRI workflow in an academic medical center. Journal of the American College of Radiology: JACR, 12(6), 594–598. Ellerton, M. L., & Merriam, C. (1994). Preparing children and families psychologically for day surgery: An evaluation. Journal of Advanced Nursing, 19, 1057–1062. Faust, J., & Melamed, B. G. (1984). Influence of arousal, previous experience, and age on surgery preparation of same day of surgery and in-hospital pediatric patients. Journal of Consulting and Clinical Psychology, 52, 359–365. Fivush, R. (1998). Children’s recollections of traumatic and nontraumatic events. Development and Psychopathology, 10, 699–716. Fortier, M., Blount, R., Wang, S., Mayes, L., & Kain, Z. (2011). Analysing a familycentred preoperative intervention programme: A dismantling approach. British Journal of Anaesthesia, 106(5), 713–718. Gaensbauer, T. J. (1995). Trauma in the preverbal period: Symptoms, memories, and developmental impact. Psychoanalytic Study of the Child, 50, 122–149. Gaensbauer, T. J. (2000). Psychotherapeutic treatment of traumatized infants and toddlers: A case report. Clinical Child Psychology and Psychiatry, 5, 1359–1045.

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Gaensbauer, T. J. (2002). Representations of trauma in infancy: Clinical and theoretical implications for the understanding of early memory. Infant Mental Health Journal, 23, 259–277. Gaensbauer, T. J. (2004). Telling their stories: Representation and reenactment of traumatic experiences occurring in the first year of life. Journal of Zero to Three: National Center for Infants, Toddlers, and Families, 24, 25–31. Gaensbauer, T., Chatoor, I., Drell, M., Siegel, D., & Zeanah, C. H. (1995). Traumatic loss in a one-year-old girl. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 520–528. Gaensbauer, T. J., & Jordan, L. (2009). Psychoanalytic perspectives on early trauma: Interviews with thirty analysts who treated an adult victim of a circumscribed trauma in early childhood. Journal of the American Psychoanalytic Association, 57, 947–977. Gaynard, L., Goldberger, J., & Laidley, L. (1991). The use of body-outline dolls with hospitalized children and adolescents. Children’s Health Care, 20, 216–224. Gaynard, L., Wolfer, J., Goldberger, J., Thompson, R., Redburn, L., & Laidley, L. (1990). Psychosocial care of children in hospitals: A clinical practice manual from the ACCH child life research project. Bethesda, MD: ACCH. Goleman, D. (1995). Emotional intelligence: Why it can matter more than IQ. New York: Bantam. Gursky, B., Kestler, L. P., & Lewis, M. (2010). Psychosocial intervention on procedure-related distress in children being treated for laceration repair. Journal of Developmental and Behavioral Pediatrics, 31(3), 217–222. Jay, S. M., Elliott, C. H., Ozolins, M., Olson, R. A., & Pruitt, S. D. (1985). Behavioral management of children’s distress during painful medical procedures. Behavior Research and Therapy, 23, 513–520. Kain, Z. N., Caldwell-Andrews, A. A., Mayes, L. C., Weinberg, M. E., Wang, S. M., MacLaren, J. E., & Blount, R. L. (2007). Family-centered preparation for surgery improves perioperative outcomes in children. Anesthesiology, 106, 65–74. Kennedy, C. M., & Riddle, I. I. (1989). The influence of the timing of preparation on the anxiety of preschool children experiencing surgery. Maternal-Child Nursing Journal, 18, 117–132. Lazarus, R. S. (1999). Stress and emotion: A new synthesis. New York: Springer. Lazarus, R. S., & Folkman S. F. (1984). Stress, appraisal, and coping. New York: Springer. Melamed, B. G., & Ridley-Johnson, R. (1988). Psychological preparation of families for hospitalization. Journal of Developmental and Behavioral Pediatrics, 9, 96–102. Melamed, B. G., & Siegel, L. J. (1975). Reduction in anxiety in children facing hospitalization and surgery by use of filmed modeling. Journal of Consulting and Clinical Psychology, 43, 511–521. Melnyk, B. M., Alpert-Gillis, L., Feinstein, N. F., Crean, H. F., Johnson, J., Fairbanks, E., Small, L., Rubenstein, J., Slota, M., & Crobo-Richert, B. (2004). Creating opportunities for parent empowerment: Program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics, 113, e597–607.

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Perry, J. N., Hooper, V. D., & Masiongale, J. (2012). Reduction of preoperative anxiety in pediatric surgery patients using age-appropriate teaching interventions. Journal of Perianesthesia Nursing, 27(2), 69–81. Peterson, C., & Parsons, B. (2005). Interviewing former 1- and 2-year-olds about medical emergencies 5 years later. Law and Human Behavior, 29, 743–754. Peterson, C., & Rideout, R. (1998). Memory for medical emergencies experienced by 1- and 2-year-olds. Developmental Psychology, 34, 1059–1072. Peterson, L., & Toler, S. S. (1986). An information seeking disposition in child surgery patients. Health Psychology, 5, 343–358. Piaget, J. (1962). Play, dreams, and imitation in childhood. London: Routledge. Rothschild, B. (2000). The body remembers: The psychophysiology of trauma and trauma treatment. New York: Norton. Rudolph, K. D., Dennig, M. D., & Weisz, J. R. (1995). Determinants and consequences of children’s coping in the medical setting: Conceptualization, review, and critique. Psychological Bulletin, 118, 328–357. Siegel, L. J., & Peterson, L. (1980). Stress reduction in young dental patients through coping skills and sensory information. Journal of Consulting and Clinical Psychology, 48, 785–787. Siegel, L. J., & Peterson, L. (1981). Maintenance effects of coping skills and sensory information on young children’s responses to repeated dental procedures. Behavior Therapy, 12, 530–535. Smith, K. E., Ackerson, J. D., & Blotcky A. D. (1989). Reducing distress during invasive medical procedures: Relating behavioral interventions to preferred coping style pediatric cancer patients. Journal of Pediatric Psychology, 14(3), 405–419. Solnit, A. J. (1984). Preparing. Psychoanalytic Study of the Child, 39, 613–632. Stephens, B. K., Barkey, M. E., & Hall, H. R. (1999). Techniques to comfort children during stressful procedures. Advances in Mind-Body Medicine, 15, 49–60. Taddio, A., Goldbach, M., Ipp, M., Stevens, B., & Koren, G. (1995). Effect of neonatal circumcision on pain responses during vaccination in boys. Lancet, 345, 291–292. Taddio, A., Katz, J., Ilersich, A. L., & Koren, G. (1997). Effect of neonatal circumcision on pain responses during subsequent routine vaccination. Lancet, 349, 599–603. Taddio, A., Shah, V., & Gilbert-MacLeod, J. K. (2002). Conditioning and hyperalgesia in newborns exposed to repeated heel lances. JAMA, 288, 857–861. Thompson, R. H., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas. Uman, L. S., Chambers, C. T., McGrath, P. J., & Kisely, S. (2006). Psychological interventions for needle-related procedural pain and distress in children and adolescents (Review). Cochrane Database of Systematic Review. Vernon, D. T. A. (1973). Use of modeling to modify children’s response to a natural, potentially stressful situation. Journal of Applied Psychology, 58, 351–356. Vernon, D. T. A. (1974). Modeling and birth order in responses to painful stimuli. Journal of Personality and Social Psychology, 29, 794–799.

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Vernon, D. T. A., Foley, J. M., Sipowitz, R. R., & Schulman, J. L. (1965). The psychological responses of children to hospitalization and illness. Springfield, IL: Charles C Thomas. Visintainer, M. A., & Wolfer, J. A. (1975). Psychological preparation for surgical pediatric patients: The effect on children’s and parents’ stress responses and adjustment. Pediatrics, 56, 187–202. Wang, S., Maranets, I., Weinberg, M. E., Caldwell-Andrews, A. A., & Kain, Z. N. (2004). Parental auricular acupuncture as an adjunct for parental presence during induction of anesthesia. Anesthesiology, 100(6), 1399–1404 Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L. N., & Thompson, R. (1988). An experimental evaluation of a model child life program. Children’s Health Care, 16, 244–254. Wolfer, J. A., & Visintainer, M. A. (1975). Pediatric surgical patients’ and parents’ stress responses and adjustment. Nursing Research, 24, 244–255. Wolfer, J. A., & Visintainer, M. A. (1979). Prehospital psychological preparation for tonsillectomy patients: Effects on children’s and parents’ adjustment. Pediatrics, 64, 646–655. Worchel, F. F., Copeland, D. R., & Barker, D. G. (1987). Control-related coping strategies in pediatric oncology patients. Journal of Pediatric Psychology, 12, 25–38. Zuwala, R., & Barber, K. (2001). Reducing anxiety in parents before and during pediatric anesthesia induction. AANA Journal, 69(1), 21–25.

Chapter 10 PROGRAM ADMINISTRATION AND LEADERSHIP JANET N ELMS CROSS, TONI F. M ILLAR, AND J ERRIANN MYERS WILSON If your actions inspire others to dream more, learn more, do more and become more, you are a leader. John Quincy Adams hild life programs offer services to mitigate stress and anxiety and to promote positive coping, growth and development for children experiencing emotionally challenging and painful encounters. A child life program may consist of one person, multiple individuals, or a staff of more than 50 people. Programs may be organized as self-directed work groups or diseasebased teams, or they may operate using a centralized model. Whatever the organization of the program may be, it is important that its structure be in alignment with the overall goals of child life programming—that is, it should contribute to advancing the clinical excellence and quality of services offered to and for pediatric patients and families across the healthcare system. The goal of this chapter is to examine best practices in the administration of child life programs in medical settings in the United States and Canada. In it, we discuss program leadership and structure, staffing models for delivering care, supervision, professional identity and growth, orientation and training of staff, interns, and volunteers, program accountability, financial strategies, program development and evaluation, and the potential roles of the child life leaders in patient experience and patient engagement. For more focused information on application of these topics in one-person child life programs or those in alternate settings, see Chapters 11 and 17, respectively.

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Models for leading child life programs vary widely. The individual or individuals responsible for managing the day-to-day and overall function of child life programs perform under many titles. Designations such as director, manager, supervisor, coordinator, leader, and lead child life specialist are all applicable (Child Life Council, 2003). In this chapter, the term leader will be used to designate any of these roles. Titles are organization specific, and those used to designate child life leaders in a given healthcare setting should correspond with equivalent levels of supervision and management responsibility in other disciplines. This structure creates a parallel status with other disciplines and thus enables child life to contribute to organizational planning and decision making. The majority of child life programs have an identified central leader who is a certified child life specialist responsible for administrative aspects and supervision of clinical practice of child life services. In some settings, administrative responsibilities for child life programs are shared with leaders of other departments. This may occur where child life specialists are assigned to work with teams in medical units or programs such as hematology/oncology, cardiology, or the emergency department. This is often called reciprocal or matrix management. Under this arrangement, the child life leader must collaborate with other departments to ensure quality service. The child life specialist in the assigned unit reports to the nurse manager or another professional on the service in addition to having the child life leader as a supervisor. The child life leader may be responsible for making certain that the staff members maintain professional standards, while the nurse manager supervises the day-to-day work. Some child life leaders are expected to fill a part-time clinical role as part of the requirements of their job description or, in other instances, may substitute for absent staff members. Roles of child life leaders often consist of general responsibilities determined by the institution. These include developing an environment and culture consistent with organizational mission, vision and values, achieving financial targets in support of business goals, maintaining regulatory agency requirements, and creating and nourishing effective communication and relationships with all hospital service departments. Managing and monitoring customer service and satisfaction, developing and maintaining positive public relations with community agencies, schools and the medical community, and implementing programs built upon evidence-based practice are also important tasks for child life leaders. Child life leaders are responsible for developing the capability and competence of individuals and teams, and they must promote The Association of

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Child Life Professional’s Standards of Clinical Practice and Child Life Competencies. Additionally, leaders of child life are responsible for working to enhance program integration across institutions and health systems, creating new programming areas and opportunities, and providing ongoing education for medical and healthcare professionals as well as students. In 1985, the American Academy of Pediatrics (AAP) issued the first formal position statement concluding that child life services make a difference in pediatric care. This statement, now in its third edition (AAP 2014), acknowledges the acute impact of child life services on pediatric care. Child life leaders should possess the ability to articulate effectively and diplomatically the vision of patient- and family-centered care and the need for attention to the unique challenges children and families experience in healthcare settings (see Chapter 6). Education and advocacy information should be shared both with medical and healthcare professionals and with families consuming child life services. As Rollins, Bolig and Mahan (2005) note, “Children in all healthcare settings will benefit if these [AAP] recommendations are followed. However, because of cost implications, this expansion is only likely to occur if families as consumers understand the importance and impact of psychosocial support for their children and the child life specialist’s ability to provide such support. Great efforts must be undertaken to educate families and healthcare professionals about the role of the child life specialist as an essential member of the child’s healthcare team” (p. 523). As previously mentioned, child life leaders are responsible for developing the capability and competence of their staff. According to the Clinical Supervision Statement of the Child Life Council (2008), Clinical supervision is operationally defined as a formal process based upon a clinically-focused professional relationship between the practitioner and supervisor to support and enhance the quality of care for patients and families. Clinical supervision enables individual practitioners to develop knowledge and skill and to assume responsibility for their own practice; it is central to the ongoing process of professional growth and learning. In child life practice, clinical supervision is seen as a means of encouraging therapeutic competence, critical thinking, and reflective skills. (p. 2)

Supervision can take place individually, or as a peer group. Peer group supervision has become popular, as “this approach supports peers as they meet and learn from each other through the sharing of professional experiences, and by reflecting on practice issues. Responsibilities are shared, and the role of facilitator rotates among participants” (Kuipers, Pager, Bell, Hall, & Kendall, 2013, pp. 391–392). Clinical supervision is an evidence-based practice that can help child life programs grow and strengthen the compe-

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tence of the staff. However, the type of supervision provided must be aligned with the vision of the program and include the engagement of the staff to be successful.

Organizational Structure Just as management of child life services varies widely, so do reporting configurations. Child life programs and their staff members may report to any of a myriad of departments, including hospital administration, nursing, patient and family services, behavioral health, program teams, and individual patient care units. Regardless of the hierarchical structure of the organization, the successful development of child life programs relies upon, and is enhanced by, effective collaboration between the child life leaders and their respective administrators. Regularly scheduled, individual meetings with the administrator responsible for oversight of the child life program are beneficial. Such meetings help the administrator to better understand the program, to articulate the program’s mission and value to boards and executive committees, and to make informed financial decisions that affect the program. Opportunities for education, program development, and support can result from these face-to-face interactions. Teamwork across all departments is vital in today’s healthcare environment. Both hospital administrators and national regulatory bodies recognize the value of interdisciplinary cooperation. The participation of the child life leader with other professionals on the management level in areas of program development and implementation improves pediatric care by integrating developmental expertise and accelerates understanding and involvement of child life in overall care of patients and families. This group effort is an indication of excellence in professional and departmental management for the child life service. In addition, alignment with and contribution to the organization goals are realized. MANAGEMENT FUNDAMENTALS

Mission, Vision, and Values Guiding principles of organizations, institutions, and professions are based on missions, visions, and values. The Association of Child Life Professionals (ACLP) has developed mission, vision, and value statements that guide and support the work done by child life specialists (Association of Child Life Professionals, 2015). The mission statement of the organization helps promote success and productivity by describing the overall goals of the profession of

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child life, as well as the rationale for its existence (e.g., reducing stress among children and their families). The vision statement of ACLP describes the tasks that are to be accomplished by the profession (e.g., that child life specialists will continue to provide therapeutic services) and is created and adhered to by members of the group. The values statement delineates the fundamental principles or beliefs of the profession (e.g., that play is essential for children, and we are committed to providing opportunities for play). The mission, vision, and values influence our daily work by establishing standards for performance and specifying operating principles (e.g., the importance of advocacy for the rights of children). Healthcare institutions in North America are required by The Joint Commission (TJC) in the United States and the Canadian Council on Health Services Accreditation (CCHSA) in Canada to have a mission statement in place (www.jointcommission.org and www.accreditation.ca). Given this, it is essential for individual child life programs to create mission and vision statements, compatible with those of the institution, to define the scope of practice, guide work tasks, set goals, and affect continuous quality improvement and performance management. Manuals of operational guidelines should be maintained by individual child life programs and should contain the statements of mission, vision, values, as well as a written service plan describing the scope of the program’s service (e.g., the range of services available, areas covered, hours of service, and guidelines for day-to-day management and special programs offered). This manual is an important tool in promotion, development and consistent practice in the program.

Operational Guidelines Policies, procedures or operational guidelines are recommended for most organizations and are mandated for healthcare institutions by the United States and Canadian accrediting agencies. Policies define the rules for a program and should always be adhered to without variation. The hospital may develop policies that guide development of the practice of the institution. For example, a hospital may develop policies regarding toy washing with input from child life and other experts including infection control that guide the development of the policy for the institution. Procedures are more specific and provide systematic direction for staff in carrying out tasks required by policies in a consistent manner. Operational guidelines provide more general direction for the operation of units and programs and are often open to interpretation to best meet needs of patients, families, and staff. Policies, procedures, and operational guidelines are designed to be consistent with the program’s mission, vision, values, and operating principles

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and provide a structure for critical thinking about daily work. They provide guidance for staff and expectations for performance, thereby promoting more consistency in the program practice. Policies, procedures, and operational guidelines are helpful to child life specialists in managing day-to-day operations and in advocating for patient- and family-centered settings and a sensitive psychosocial culture. In most cases, the hospital or healthcare agency has established administrative and clinical policies for the institution. The child life program operational guidelines are designed to be compatible with, and to complement, those of the institution. Effective guidelines are developed for child life programs when patient and family needs, safety issues, program operation, continuous quality improvement efforts, and available resources are analyzed. Typical categories of policies, procedures, and operational guidelines include those related to clinical practice, patient care, quality improvement, financial management, safety and infection control, and program administration.

Staffing Models Child life staffing should be compatible with the hospital’s care delivery model. A care delivery model is a system or structure within a healthcare setting that determines the placement of patients on particular patient units or areas. Although the nature of this system is not typically under the control of child life, understanding the model is imperative to distribute resources most efficiently and effectively. For example, inpatient care units may be set up according to ages, acuity levels, and/or diagnoses. Organization of patients by age (e.g., infants, school age, and adolescents) or acuity levels (e.g., general care, intermediate care, intensive care) is not unusual in large pediatric settings. Institutions may also choose to cohort some patients by diagnoses. Grouping by diagnoses occurs when all inpatients with similar diseases are placed together (e.g., cardiology, orthopedics) or when inpatient and outpatient facilities are adjacent (e.g., hematology-oncology). Changes in healthcare have greatly expanded the use of outpatient and day treatment programs and increased patient volume in ambulatory services. This increased use of ambulatory services in hospitals and clinics requires thoughtful planning for allocation of child life services. Most children arrive at the hospital or clinic with little or no advance preparation for surgical and procedural events and have the potential for their first healthcare encounter to be unanticipated, painful, and misunderstood. The preventive philosophy of child life suggests that child life services be available early in children’s experience. Decisions about where and when to provide child life services require careful information gathering, analysis and evaluation. Focusing child life

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services where they are most needed is an evolving task for child life leaders and programs. As the landscape of healthcare changes, it is important to periodically assess the focus of care within institutions. Staffing and scheduling of child life services are dependent upon multiple factors and require constant monitoring and assessment. The basic factors that should be considered in staffing decisions are the psychosocial needs of patients and families, the volume of patients, the level of acuity and vulnerability of patients, and the number of child life staff available. The psychosocial needs of each patient population should be analyzed. Units or areas caring for vulnerable, high-risk populations often take precedence for child life staffing. Children in these settings have a high emotional acuity or severity level. The child life leader should assess the emotional acuity of the patients and create staffing patterns accordingly. The Psychosocial Risk Assessment in Pediatrics (PRAP), a tool developed by a team at Cincinnati Children’s Hospital, may be useful in making this assessment (https://www.childlife.org/resources/prap). Factors recommended by the CLC that may be considered in making staffing decisions include the following: • noting concentrations of the most challenging procedures and most vulnerable age groups; • categorizing the relative severity of illness and amount of time spent interfacing with healthcare setting; • estimating the degree to which illnesses or treatments are likely to be unexpected or unfamiliar to the child and family, thus leaving them poorly “equipped” and more likely to be overwhelmed or traumatized by events; • identifying families who will be most helped by additional resources; • striving for continuity of care; and • recognizing the priority and mission of the institution. (Child Life Council, 2005) The volume or numbers of patients cared for in different areas is a factor that helps determine how child life staffing decisions are made. Increase or decrease in the need for clinical child life interventions, and increased or decreased use of the playroom by patients are examples of points to consider when creating a staffing plan. The use of day treatment programs and ambulatory services again must be considered. It is also crucial to consider levels of expertise in staffing and whether a child life assistant may expand coverage. Child life specialists must have a minimum of a bachelor’s degree, and have attained their certification, earning the credentials identifying them as a Certified Child Life Specialist

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(CCLS). An associate’s degree (or a diploma from a community college) in a child development or a related area is often required for the child life assistant (Child Life Council, 2002). The child life assistant traditionally works in collaboration with a child life specialist and may manage a playroom or waiting room play area with supervision from the specialist or child life leader. This pairing arrangement allows for extended coverage of child life services at a lower cost, but maintains clear role delineation. The recognition and understanding by the medical team of the clinical expertise a child life specialist provides may influence the assignment of child life staff. The effective, efficient, and appropriate use of child life staff and child life designated areas is an important factor. On a unit where medical, nursing, and auxiliary staffs clearly understand the role child life plays, the specialist becomes an invaluable resource. Areas that present challenges with understanding and integration of child life services may make them more difficult to deliver. Child life can use a variety of alternative staffing patterns to meet demands for increased staffing. The child life leader develops a staffing plan based on hours of service needed, volumes, types of child life skills that are required, number of staff positions (full-time equivalents or FTEs) available to accomplish the work, vacation coverage, and availability of on-call or backup support within the system. It is important to consider the needs of the unit when deciding if staff will be present in a part-time versus full-time capacity. For instance, a pre-surgery unit may need a child life specialist 6 a.m.–1 p.m. To maximize child life coverage, the child life leader may exercise flexibility to create a position for a staff member to work on two units. For example, a NICU child life specialist may provide backup coverage during daytime hours to an individual trauma or emergency case when regular child life trauma coverage is not available. Leaders may also have opportunities to utilize job sharing, part-time, PRN or per diem arrangements, depending upon their human resource guidelines. Most often, child life is staffed similarly to social work, chaplaincy, and other psychosocial support departments. They are not on site 24 hours, seven days a week, but may be on-call to cover evening and weekend hours. Accreditation regulators in the United States are beginning to challenge discharge planners and social workers to adhere to standards that provide patients equal access to their services 24 hours a day, seven days a week. Child life may be called upon to respond to this need in the future. The use of staff available on an on-call basis may also increase the variety of services offered by a program. The nature of the on-call position varies among programs. It may refer to a child life specialist who is available twenty-four hours for any child life responsibility, or one who may be called upon

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after hours for specific purposes, such as bereavement support or preparation for surgery or procedures. When implementing an on-call system, it is important that staffs in other departments are fully educated about the nature and operation of the system. The child life leader should also be aware of union regulations, if applicable, and the potential sacrifices staff members must make when on-call is provided. In making decisions about the use of this additional staffing option, the child life leader must balance the needs of areas that might otherwise go without child life services and the impact of providing those services on child life staff members’ satisfaction. In addition to planning which areas should receive child life coverage, it is important to consider ratios of child life staff to patients that will provide safe and effective care. These ratios should provide for day, evening (to the extent needed), weekend, and holiday coverage, and should take into account the average bed occupancy of the areas served. The Child Life Council (2002, 2005) has outlined a number of issues to consider in establishing the staffing ratios. A partial list includes age of patients, diagnosis of patients (e.g., factors of mobility, technology dependence), presence and impact of other caregivers, number of patients usually isolated, and presence of children with long-term, chronic or terminal illness. A unit with infants, technology-dependent patients, or isolated children might necessitate a smaller child life specialist-to-child ratio, while a unit that is adolescent or care-by-parents based might tolerate a larger ratio. There is no established ratio for outpatient areas to date. RECRUITMENT AND HIRING The child life leader has responsibility for hiring, supervising, and developing staff. Interviewing and selecting the strongest candidates are vital aspects of the process. Having a clearly written, accurate job description as a basis for beginning the hiring process is imperative. The job description should be heavily based on the Child Life Competencies and the Standards of Clinical Practice (Association of Child Life Professionals, 2017) and tailored to the individual unit or healthcare situation. This will guide the human resources department in its initial identification of eligible applicants and is useful to the child life leader in the ongoing process of supervision. Human resources department personnel ensure that minimal position eligibility requirements have been achieved. In some institutions, they may also secure references and internship evaluations. Interview questions should be based on the job competencies and include behavior-based interview questions to evaluate knowledge, experi-

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ence and potential performance on the job. Behavioral-based questions may ask candidates either to describe how they have addressed a past, specific circumstance or how they would approach a hypothetical situation if encountered in the future. According to Levashina, Hartwell, Morgeson and Campion (2014), these two types of questions yield valuable information predictive of job performance and both should be used in interviews. Many times, child life and multidisciplinary team members are included in a peer interview process. The Studer Group, a highly respected organization used by healthcare institutions to achieve optimal results in patient care, recommends peer interviews to “determine cultural fit” of interviewees (www.studergroup .com). It is essential to clarify in advance, however, that the child life leader will evaluate the candidate’s level of knowledge and skills and has the authority to make the final decision.

Professional Identity The professional identity of the child life specialist continues to grow stronger and be more clearly defined, both within and outside the profession. The stature of the child life professional and the understanding of the role have increased for several reasons. First, the role of the child life specialist has been outlined in the Child Life Competencies of the Child Life Council (Child Life Council, 2011), and is periodically reviewed and updated by the Association of Child Life Professionals. In addition, a formal process for certifying child life specialists by standardized exam has been established. The competencies describe the minimum level of practice expected of a child life specialist in the areas of patient and family care, teaching, and administration. For each competency, the required knowledge and skills are addressed. The competencies are reviewed regularly to ensure they reflect advances in healthcare and the child life profession. Attaining the professional level of Certified Child Life Specialist (CCLS) is extremely important for the child life specialist. Child life programs require it as a condition of employment, either at the time of hire or within one year. The certification process for the child life specialist, which had its beginnings in 1986, is now based on a validated objective examination covering knowledge, comprehension, and concrete application of the theory of child life work. Eligibility requirements for the exam are posted on the ACLP website and are updated to reflect current academic and clinical requirements. The exam is taken concurrent to, or following, the conclusion of the student’s clinical and academic commitments. The content for the exam is constantly reviewed and updated through the joint efforts of seasoned child life professionals and a qualified testing firm to guarantee that the test will

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continue to be an effective tool for measuring entry level competency for child life specialists entering the profession. The Candidate Manual describes not only the application process and eligibility requirements, but also includes sample questions and other important information (www.childlife .org). As psychosocial, humanistic care providers, child life specialists help children and families experience optimal healthcare outcomes. In this work, child life specialists encounter numerous challenges related to the nature of the work they do and the perceptions of their work by others. Recognition for this work helps to affirm pride, engagement and competence. The Association of Child Life Professionals, formerly known as the Child Life Council, established March as “Child Life Month,” during which internal and external stakeholders, such as hospital leadership and other medical staff, the media, pediatric patients and their families, celebrate child life specialists. As with many in the healthcare professions, child life staff members often feel like they do not have the time or resources to meet adequately patient care needs. Staffing constraints contribute to excessive workloads for many child life specialists in both small and large programs. This typically allows time only to work with the highest priority patients. In addition, relationships with patients and families are demanding because of the enormous pressures, pain, and lifestyle changes that families encounter during a healthcare experience. Training about professional boundaries and therapeutic relationships helps contribute to maintaining a positive morale of an individual child life specialist or a child life team. Many healthcare professionals struggle with establishing parameters for building relationships with patients. It is essential for the child life specialist to reach and maintain a balance within the context of patient- and family-centered care that is positive and professional without being one of over-involvement with a family. Enmeshment can lead to distress for the child life specialist. In addition, the blurring of professional lines between staff and families can be confusing and detrimental for families and patients and may encourage an increased dependency on the child life caregiver. An additional challenge frequently faced by child life specialists relates to the pay scale. In 2012, ACLP conducted a salary survey for child life professionals. The average annual salary for a child life specialist with minimal leadership duties was $42,720. Although a more recent ACLP survey has not been conducted, dialogue amongst child life leaders reveals that the average salary has increased only minimally. The employment market for child life specialists remains small as the supply of certified child life specialists signif-

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icantly exceeds the demand for and number of child life specialist positions available. The Association of Child Life Professionals (ACLP) continues to examine and evaluate these challenges to best support the profession. Until the supply and demand is more balanced, salary levels are unlikely to show significant increases. Child life leaders monitor each of these issues or challenges and use a variety of strategies to address them. One option available to the leader includes the use of team-building exercises including staff retreats. Staff development programs that include opportunities for clinical advancement, discussed in the next section, are also helpful in promoting professional identity. Policy clarification, the use of ACLP Competencies, and clearly stated job responsibilities and descriptions assist in clarifying role ambiguity often experienced by child life specialists.

Clinical Advancement One way of recognizing the work and accomplishments of child life specialists, as well as building their skill and experience, is through the establishment of formal clinical advancement systems, used by an increasing number of child life programs. These systems provide opportunities for career development within child life programs and recognize child life specialists who demonstrate a high level of clinical skills. It contributes to increased job satisfaction and better staff retention. In addition, an advancement program will help ensure higher quality services for children and families. A typical approach to formalizing clinical advancement involves the establishment of a child life career ladder (Brown & Redelheim, 2003; Gander & Varhola-Hadley, 2000). This is among the most common approaches to providing opportunities for the promotion of staff within medium and large child life programs. It is often structured with two or three steps or career levels, which are designated correspondingly as Child Life Specialist I, II, and III (CLS I, II, and III). In a typical career ladder system, the level of CLS I is reserved for new hires with at least a bachelor’s degree who meet the minimum level competencies for a new child life specialist. During their initial year of employment, they are expected to achieve professional certification while continuing to develop competent child life clinical skills. The CLS II level is achievable for a certified child life specialist after a designated period of employment and successful demonstration of core competency protocols. A letter of agreement outlining specific goals to be met may be generated or an application for promotion and portfolio presentation may be required. The CLS II accepts additional responsibilities in the program, for example, with child life interns, new hires, committee work, or utilizing skills

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that are more advanced with children and families. The CLS III level, attainable after a designated period of employment and, in most cases, the completion of a master’s degree, also includes a rigorous and formal application process including journal reviews, letters of recommendation, and further evidence of expert clinical skills as shown through video, medical record documentation, and oral presentations. Child life clinical advancement systems often mirror those of nursing, social work or other professions at a given institution. Advancement applications are reviewed by the child life leader, and an interdisciplinary review committee, and the applicant’s portfolio and presentation is evaluated based upon previously established criteria. Evaluation of clinical practice levels occurs annually at a minimum. Additionally, larger child life programs have implemented career ladder systems incorporating one or more mid-level child life supervisory positions that may be bid on by members of the child life staff. The child life leader, peer groups, and multidisciplinary team members interview the child life applicants who have submitted bids and then, using the team’s feedback, the child life leader chooses the most appropriate candidate. A pay increase often accompanies the promotion. This is among the most common approaches to providing opportunities to increasing effectiveness of supervision. Extra responsibilities come with the promotion (e.g., supervisory work, preceptor or mentor role, educational presentations, and program development). There may be a limited number of places at each level or the levels may be open to all who meet the requirements. ORIENTATION AND TRAINING FOR STAFF AND OTHERS While healthcare organizations are required to provide general orientation for their new employees, opportunities should be provided for orientation and training beyond the traditional offerings of the human resources department. Development and refinement of child life skills and competencies should be ongoing for the betterment and advancement of the individuals within the child life program, and for the program as a whole. Orientation and continuing education opportunities also contribute to the continued professionalization of staff and are critical to improving job satisfaction, capability, and retention (Stanford, 1980).

Orientation for Child Life Staff Orientation to a child life program for new staff members varies within institutions, but generally includes an introduction to common elements or

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components of the program and the institution. The human resources orientation includes an overview of the institution’s organizational structure and general resources. Orientation manuals often include past annual reports, important principles, policies, and procedures discussed, such as patient- and family-centered care practice, performance improvement, infection control and safety issues, and the use of electronic health records. Child life program orientation should occur before the staff member assumes patient care responsibilities. It should include the scope of service provided by the program, an overview of program resources for the position the staff member is entering, and the supervision process. In addition, the new employee should become familiar with all units of the institution and be given a thorough orientation to the assigned unit or population. The Joint Commission (TJC) mandates that staff members have completed orientation checklists on file that include each of these elements. As supervision models differ among child life programs, all staff should clearly understand the program’s direct reporting structure and accountability practices. Supervision of professional practice and clinical skill may occur by direct observation, review of documentation and statistics, and customer and peer feedback. Some programs have adopted a mentoring system to allow new staff to have a non-supervisory colleague to meet with on a regular basis. Egan and Song (2008) indicate that formal mentoring may benefit participants psychologically, in addition to increasing their job satisfaction, their commitment to the organization and their perception that the organization is a good fit for them.

Training and Development for Child Life Staff Ongoing training is presented at staff meetings, in-services, and child life rounds or staff retreats. Staff meetings are usually held on a weekly or biweekly basis for 60 to 90 minutes. Agendas, posted ahead of time, should include items that child life leaders need to communicate and issues that the staff must address as a group. This gathering provides a forum for discussing operational issues, planning necessary tasks (e.g., developing new guidelines, or reviewing and setting goals), and shared governance. All staff members are expected to attend the meeting if on shift, and minutes are recorded, as required by TJC. These minutes serve as an informational source for those not able to attend and are required reading for all staff members, with each held accountable for this knowledge. The recording and review of minutes helps off-shift staff to keep informed and documents group decisions. Child life rounds, “huddles,” and child life in-services offer a venue for patient discussion and care plan communication. They also serve as a forum for child life staff members to share, through presentation, their areas of expertise (e.g., case studies, or journal reviews).

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A staff development day or retreat is a meeting that involves the entire staff and may be held once or twice a year. The strength of a retreat is that it is often held off-site, lasts an extended period of time (i.e., a half-day or whole day), and provides an ideal setting for work and team building in an interactive framework. It should have a carefully planned agenda with items that can be realistically accomplished within that period. A retreat appears to be a luxury, but is a very effective way for a child life staff to work on projects, reinforce team building, and focus on building a foundation for positive morale. Having meetings away from the hospital sometimes causes concern among staff members that patients will be left without coverage. Nevertheless, retreats should be attended by all members of the program to enhance clinical skills, promote quality programming and professional growth. Members of the child life team should also be provided with opportunities to attend hospital and professional training or workshops (e.g., pediatric grand rounds, or topics related to child life practice, such as pain management or bereavement). Encouragement to present on topics of child life expertise, either in the hospital and community, or regionally and nationally, should also be included in plans for staff development. Another opportunity for members of the child life team to promote staff development is through “shared governance.” Porter-O’Grady (2012) suggests that interdisciplinary shared governance can be used to create a dynamic staff-leader partnership and framework for an effective organizational structure. This approach promotes nimble management, collaboration, shared decision making and accountability for improving quality of care and safety, and for enhancing work. Shared governance as a method of decision making has become standard practice for many departments in healthcare settings and offers helpful strategies for both use and recognition of the unique knowledge and skill of child life specialists

Orientation and Training for Child Life Interns Child life internship programs exist as a part of many child life programs across the continent and offer a variety of educational experiences. As part of the process of selecting students, the child life staff and prospective interns should interview one another to ensure that their goals, needs, and expectations are congruent. The Association of Child Life Professionals has developed standards for internships that lead to uniformity in structure and content. Orientation for interns should include many of the facets that are covered in the orientation for new staff. Interns should attend pertinent parts of the hospital orientation for new employees. Clinical training, as identified in the ACLP’s Clinical and Academic Standards, is the core of the internship experience (http://www.childlife.org/certification/students). It includes on-

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going educational opportunities throughout the internship that cover the subject material of the Child Life Competencies and the Standards of Clinical Practice and is regularly reviewed and updated. Additionally, lectures by, or meetings with, staff members outside the child life field will enhance content for the interns. The ACLP has begun an accreditation process for child life clinical internship programs to ensure that internship requirements are consistent in every child life program. Internship requirements should include routine journal entries and other written assignments such as case studies, developmental assessments, and behavioral observations. Proficiency in clinical skills, including assessment, planning, providing interventions and evaluation, is also required. Ongoing evaluation during the internship is imperative. Collaboration with university/college supervisors ensures clear, consistent communication between child life staff, students, and learning institutions. Child life programs set standards for supervisors of child life interns. Internship supervisors should be carefully chosen and should have demonstrated skill in supervision. In addition, they should receive ongoing education and support through seminars and student supervision meetings. Effective child life internship programs incorporate feedback from interns in evaluating and setting goals for student internship.

Orientation and Training for Volunteers Volunteers who prefer to work with children in healthcare settings are usually selected in tandem by the hospital volunteer services department and the child life program (Kiley, 1992). In addition to playing a role in the orientation of volunteers, the central volunteer department usually manages recruitment, screening, suitability, recognition, and dismissal of volunteers. The institution typically is responsible for part of the orientation that includes mandatory information (e.g., policies related to standard or universal precautions and confidentiality), and may also offer child-related information, particularly if it is a children’s hospital. The child life staff provides information specific to the program’s needs using a volunteer manual, job descriptions, and an on-site orientation. Other information includes discussion of the responsibilities of volunteers, age-specific competency information and tips for approaching children and parents, therapeutic relationships and professional boundaries, infection control policies, safety measures, and the importance of play. Orientation to the site is also important as it gives the volunteers opportunities to locate essential supplies, meet personnel, and familiarize themselves with the needs of the children and families. Ongoing training is of benefit to volunteers, helping them improve their working skills and providing them with positive reinforcement for their work. For further

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information on orienting and engaging volunteers, see the American Hospital Association’s publication on engaging volunteers. Periodic evaluations of volunteers are required by TJC and will serve as useful tools for both the volunteers and the child life staff. Volunteer roles are diverse. They may share time individually or in groups with patients and families, or implement recreational programs such as playroom supervision, assisted animal therapy, special events and parent activities. Volunteers should be considered as members of the interdisciplinary team, sharing observations and providing feedback to child life staff.

Supervision Effective supervision ensures child life leaders maximize staff and student potential. While there are many models of supervision, quality supervisory relationships are built upon trust, confidentiality, support, and empathic experiences. Constructive feedback, safety, respect, and maintenance of strategies for physical, mental and emotional health are qualities inherent in efficient supervisory relationships (Petrila, Fireman, Fitzpatrick, Hodas, & Taussig, 2015). Because supervision is a joint experience, both the supervisor and the supervisee share responsibility for the process, although it is ultimately the leader’s role to guarantee that this happens. Supervision begins on the new employee’s first day of orientation with the discussion of the job description and continues on a regular basis thereafter through direct observation and discussion of clinical work. The process followed in a particular program may vary in terms of mechanics of the system (i.e., the actual person providing supervision), style (i.e., the evaluation tools used), and in the number of people supervised (Lee & Catagnus, 1996). Hawkins and Shohet (2000) describe three components of supervision, these being educative, supportive, and managerial. The child life leader works in each of these domains, teaching staff members about skills, encouraging and supporting their therapeutic work, and providing them with feedback about the quality of their work. Hawkins and Shohet further emphasize the importance of supervision, noting that, “We believe that, if the value and experience of good supervision are realized at the beginning of one’s professional career, then the ‘habit’ of receiving good supervision will become an integral part of the work life and the continuing development of the worker” (p. 4). Supervision between the child life leader and child life staff can occur either in one-to-one meetings or in small groups. The advantages of the former are apparent in terms of the individual attention that can be given to the staff member. Group sessions, on the other hand, offer greater efficiency of time for the supervisor, peer support for staff, and shared staff feedback for each other. The child life leader may help staff prepare for the supervision

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session by asking them to prepare an agenda of projects, committee work, challenges of difficult patients, interdisciplinary work, and the use of varied teaching techniques. This approach to structuring supervision helps the staff member to build self-evaluation skills and insight. The mid-year and annual performance appraisals or evaluations, important parts of the supervision process, are structured, two-way exchanges with responsibility for the appraisal shared between the supervisor and the supervisee (Hawkins & Shohet, 2000). It is suggested that employees complete a self-evaluation of their strengths and weaknesses to share with their supervisor. This may be supplemented with confidential appraisals from peers and other team members, a progress report on personal and professional goals for the year, and observations made by the supervisor. The tools used in evaluations (e.g., job description, performance review sheet, competency assessment forms) are part of the supervision process that are prescribed by the institution and are strongly influenced by expectations from the The Joint Commission (TJC) and the Canadian Council on Health Services Accreditation (CCHSA). Many institutions use a combined job description and evaluation tool based on the organization’s mission/values and goals, as well as expected standards of behavior and indicators of performance. Healthcare institutions may establish a system of one manager supervising all child life staff members, a number that may range from one to forty, while others may appoint sub-supervisors, such as senior child life specialists or lead child life specialists. This latter method of supervision is a kind of peer supervision, which has the advantage of dividing the supervision load and insuring attention that is more individual. The disadvantages of this model of supervision can be inconsistencies occurring among the several peer supervisors, who may also have differing level of management training. Usually these supervisors also have clinical responsibility, allowing them one-quarter to half of their time for supervision. Now more than ever, child life leaders, as well as other leaders, should be aware of generational preferences. Kapoor and Solomon (2011) state that “employers must identify the separate characteristics of each generation present in their workplace. Further, employers must foster a work environment that aids productivity for every generation; they must give their employees the information and skills needed to understand the generational characteristics of their co-workers to create understanding among employees” (p. 308). It is also helpful to focus on the results employees produce rather than how they get it done if variation is acceptable. Leaders can help ensure success by not ignoring the differences of each generation characteristics, but engaging in education to learn best practices in multigenerational management.

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Child life assistants require special supervision by virtue of the nature of their job description. They should receive not only formal direction from the child life leader as part of the institution’s performance management process, but also may expect candid feedback from their partner child life specialist or the child life team. In some settings, the child life specialist partner is responsible for the supervision and evaluation of the child life assistant. PROGRAM GROWTH AND DEVELOPMENT Program evaluation is one way to ensure constant growth of the child life staff and program elements and to reinforce the program’s mission and vision (Brown, 2003). The Association of Child Life Professionals has published the Program Review Guidelines, which is a useful tool to evaluate components of child life programs or the program as a whole. In addition, ACLP has a well-established, fee-based program review service that institutions can use to assess their child life program. ACLP deploys trained child life consultants who spend a few days at the institution and provide a written assessment, which helps the child life program recognize their strengths and address gaps in service, staffing ratios, efficiency in utilization of staff, and student programs. Information obtained through the review process, in turn, helps child life programs compile annual reports, establish annual goals, and develop three- to five-year plans, each of which plays an important role in communicating child life successes and advocating for growth and sustainability of programs. Child life programs and/or components of the program, such as nonsedate procedures or sibling support programs, can be evaluated in a variety of ways. All of these require the use of resources of time, expertise, personnel, or financial support. Evaluations help identify what works or does not work in a program, as well as the effectiveness of the strategies that are used (Thompson, 1992). Evaluation methods may utilize satisfaction surveys, data collection and analysis, continuing quality improvement processes, research, or cost/benefit analyses. The latter is a method that compares the monetary value of the benefits derived from a service (the investment) versus the costs of providing the service. This is very popular in the business community and is a strong way to present evaluation information to administrators (Thompson & Stanford, 1981).

Institutional Standards Organizational goals and structure require child life programs to meet standards in performance and service provision. Hospital or institutional

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policies and procedures provide many of these guidelines for establishing goals and maintaining accountability. Departments of performance management or continuous improvement require child life, as well as other services, to maintain levels of accountability. Each organization has its own risk management department or program, with unique reporting processes and committees. Huber (2000) defines risk management as “an organization wide program to identify risks, control occurrences, prevent damage and control legal liability. Risk management is a process whereby risks to the institution are evaluated and controlled” (p. 628). Child life contributes to this effort in important ways. Safety should be of highest consideration as child life programs plan, design and staff play and activity areas, as well as implement child life interventions. With expertise in child development, child life can proactively influence these institution safety standards and guidelines, thus increasing the effectiveness of risk management. The Joint Commission has integrated the use of outcomes and other performance measures into the accreditation process (Huber, 2000, p. 615). Outcomes for child life specialists refer to the consequences of an intervention or interaction. For child life programs, participation in the TJC accreditation process often provides the opportunity for showcasing effectiveness of child life interventions and programs, as well as the integration of child life into interdisciplinary care. Because of the special attention that TJC pays to developmental care, there are benefits to child life program participation, as well as to the overall institution, in the accreditation survey. The process gives affirmation of the contribution child life makes to developmentally appropriate patient care. Standards relevant to child life are compiled in the existing Guidelines for the Development of Child Life Programs (2005). The Canadian Council on Health Services Accreditation (CCHSA) is the accrediting organization in Canada. Similar to TJC, their mission is to promote excellence in the provision of quality healthcare and encourage the efficient use of resources in health organizations. Both accrediting agencies are forces that can influence trends in healthcare practice depending on the focus of their system of evaluation. A priority for each regulatory agency is education of healthcare professionals about best practices for safe, efficient, effective patient care. Another agency that mandates accountability in the United States is the Center for Medicare and Medicaid Services (CMS). This federal agency, formerly known as the Health Care Financing Administration (HFCA), is located within the United States Department of Health and Human Services. It operates the Medicare and Medicaid programs and, with the Health Resources and Services Administration, runs the Children’s Health In-

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surance Program (CHIP), a program that is designed to extend healthcare coverage to 8.9 million uninsured children in the U.S. (www.medicaid.gov /chip/chip-program-information). In addition to the administration of these programs, CMS conducts research on the effectiveness of various methods of healthcare management, treatment, and financing. It also assesses the quality of healthcare facilities and services and takes enforcement actions as appropriate (www.cms.gov). For programs in the United States, CMS surveys require child life leaders to collaborate with other leaders in their institutions in developing and enforcing standards and in measuring and improving outcomes of care. The CMS survey results are reflected in an institution’s ratings and quality/safety data, which are publicly reported. The survey data focus on matters such as nurse/doctor communication, overall cleanliness, hospital acquired infections, and mortality rates. These ratings directly affect how much financial reimbursement the institution will receive for Medicare and Medicaid patients. Therefore, an institution’s financial stability is directly correlated to these ratings. Child Life leaders must be aware of and understand these ratings, so that they can ensure their child life program’s goals align with and contribute to their institution’s strategy to achieve excellence. In addition to TJC and CMS requirements, most states in the United States have inspection requirements for healthcare institutions. These requirements tend to focus on safety, cleanliness, and maintenance of records. FINANCE AND BUDGET Child life leaders play a major role in developing, as well as managing, budgets. Daily child life experiences provide some of the tools necessary to understand budgetary needs and allocation of resources. It may be necessary also for the child life leaders to estimate the cost of personnel and other expenses in relationship to some standard within the hospital when establishing a budget.

Sources of Funding Child Life programs are financially supported by a variety of sources, influenced by the global financial climate at any given time. Child life program budget dollars may come from the operating budget of a hospital, other sources such as grants, endowments, donations, auxiliary organizations, telethons, or a combination of these resources. It is widely perceived that resources from a hospital budget indicate a strong base of support for a child

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life program from an institution. In times of fiscal constraint and/or reduction of hospital department budgets, and with the advent of value-based purchasing, some administrators take an opposing view regarding the importance of financially supporting child life programs. They suggest that child life programs should instead rely on outside resources, such as donors. However, in times when the economy is struggling for fiscal stability, charitable organizations and private donors may be struggling themselves, and be less able to provide consistent support to a child life program. It is important for child life leaders to collaborate with departments such as marketing, nursing, or development, in order to be proactive in creative finance plans. Child life leaders must be able to effectively articulate the cost effectiveness of child life, as suggested by Wolfer, Gaynard, Goldberger, Laidley, and Thompson (1988), communicating that significant decreases in anxiety and distress for children and parents, and more speedy return to normal activity levels, occur when child life is effectively utilized. While more research in this area is needed, evidence supporting the fiscal advantages of child life is emerging, particularly in regard to facilitation of medical procedures. Michael Scott et al. (2016) suggest that payers would likely achieve significant cost savings by subsidizing child life in high volume pediatric radiation therapy centers in the United States. The goal is to generate and maintain stable and reliable funding for the program. There are a number of creative ways to support the funding of child life services. Following are three examples that have been successfully implemented in some healthcare settings. First, consideration of financial support from a program team, such as the oncology/hematology or emergency department, is an option. The program team may have some flexibility in spending personnel dollars because they have a larger pool of resources from which to work, and they may choose to fund a child life specialist with funds set aside for patient care staff use. Although the funding ultimately comes from the same institutional income, spreading of staff full-time equivalents (FTEs) over multiple cost centers may protect FTEs in the central child life budget. In other institutions, identification of specific aspects of programming likely to appeal to selected donors is helpful in securing grant funding for programs such as sibling support groups, bereavement, or equipment (Blum, 1996; Browning, 2001). Development and fund-raising teams are helpful in locating these outside donors. A third possibility involves reimbursement of child life services, for example, requesting payment for services provided in non-hospital settings or by billing adult hospitals for interventions provided for the children of adult patients.

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Allocation of Budget Staff salaries and fringe benefit expenses typically make up 85 to 90 percent of the total child life program budget. Child life does contribute to value, which is part of the decision third-party payers and families make when they seek the care of children at an institution. Child life services should be included in the hospital operating budget as an essential part of hospital-based pediatric care. Advocacy for financing of child life services should occur at the facility, community, state, and federal levels (AAP, 2014). Usually, the cost of financing child life programs is absorbed as an administrative cost of the hospital and is supported by the daily bed rate (or per diem). Budget categories other than personnel include equipment (toys and games), expendable art/craft materials, office supplies, funds for travel and conferences, telephone, printing, computers, dietary supplies, books and journals, teaching materials, and miscellaneous expenses. Monetary donations to child life programs are managed in a variety of ways. There may be a special donation account established within the child life budget, or the funds may be assigned to a central fund account. Child life specialists should understand their budget allocations for materials and toy purchases. Systems for semi-annual or quarterly toy orders help manage the budget. Expenditures may be based upon volumes of patients, usage of supplies, and acuity of the patients served. PROGRAM DEVELOPMENT Child life programming in inpatient, outpatient and other settings provides both developmentally appropriate play as a normalizing activity and psychological preparation as a tool to assist children and their families in understanding and coping with healthcare-related procedures. In addition to play and preparation, however, there are a variety of program possibilities that can enhance the recreational and therapeutic offerings for children. These have been grouped into categories of special events, internal programming, and external programming.

Special Events Special events offer numerous values for children and their families. They provide distraction and diversion from healthcare-related procedures, which may be painful and uncomfortable, and also provide fun and education, contributing to a more familiar environment. Additionally, many child life programs have found that implementing special events from the com-

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munity helps create positive relationships with those outside the hospital. The providers of special events may be local businesses, colleges and schools, grateful parents, fraternal or philanthropic organizations, and celebrities and sports figures, all of whom may be potential donors and supporters of the child life activities. Special events may also include individuals who want to provide entertainment or holiday-related activities. Special events and holidays often require a significant amount of child life staff attention. Not all activities proposed by the outside individuals are appropriate for the pediatric population. As a first step, it is important to create a system that works well for child life and for the donors of the activity. Putting into place a structure that effectively screens visitors and programs will ensure quality events. Consideration of the of type of entertainment or visitor, costumes they may wear, group size, interactions with patients, food restrictions, religious content, and media should occur when screening and scheduling special events and accepting donations (Thompson & Stanford, 1981). Child life programs have created various methods of handling the responsibility of coordinating special events. This includes the distribution of responsibilities among all child life staff; designation of one child life specialist to screen, schedule, and coordinate all activities; or the assumption of this responsibility by other departments such as volunteer services or community outreach.

Internal Programming The special events listed in the previous section might occur only once. Child life programs across the continent have created and collaborated with numerous special programs and projects for patients and families. These offer enrichment on an ongoing basis. Some of the programs are within the pediatric setting, while others occur in settings within the community. The list that follows enumerates a few ideas that may complement the program offered by the child life staff. Animal-assisted Therapy Programs: Therapeutic programs, usually endorsed by the national Delta Society, which encourage the use of carefully selected and trained dogs to visit children at bedside or in an open space (www.petpartners.org). Camps: Day and overnight traditional camp settings for patients, siblings, and families with chronic or life-threatening illness. Closed-Circuit Television: An internal-only TV system that offers a range of subjects including educational videos, shows featuring special guests such as sports stars, and live game shows like Hospital BINGO. Family Resource Center: A combination of a children’s library and a family resource section with books, videos, pamphlets, and on-line research

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about medical, developmental, bereavement, and disability issues. Some Family Resource Centers have a health librarian, often a nurse, who is able to work with the medical staff to ensure that information provided to patients and families is accurate and reliable. Outdoor Play Deck or Summer Garden: Outdoors play spaces or gardens, on rooftop or the ground, for play and relaxation and coordinated by the child life staff. Preadmission Tours: Developmentally appropriate tours for patients, siblings, and families, which include a visit to the areas a patient will experience, medical play, and a question-and-answer session for children and parents. School: Educational activities provided by institution-supported schoolteachers, teachers from the local school system, or volunteer tutors. School Re-entry: Programs to help classmates of patients who have experienced a chronic illness or a life-altering change to the body, such as cancer or burns. Sensory Room: A Multi-Sensory Environment or a dedicated room/space designed to block out noise, control space, temperature and lighting. It is an artificially created venue that utilizes multi-sensory equipment to stimulate the senses and promote pleasure and/or feelings of well-being. Sibling Play: An environment offering supervised care for siblings of hospitalized children and ambulatory patients, enabling parents to spend time with the patient and providing siblings with an opportunity to deal with healthcare related topics. Sibling Support: Programs dedicated to the life-long and ever-changing concerns of brothers and sisters of individuals with special health, developmental and mental health concerns.

External Programming Many charitable organizations serving hospitalized children in North America have fashioned exciting programs that can be brought into pediatric settings to enhance the quality of the experience. They provide services ranging from donation of free electronic equipment to providing song writing or computer network services to granting wishes for ill children. The list that follows is not inclusive of all of the programs available, but is a representative sample: Beads of Courage: Programs designed to support and strengthen children and families coping with serious illness. Through the program, children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path (http://www.beadsofcourage.org/pages/about.html).

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Caps for Kids: A program which provides hats autographed by athletes, entertainers and other notable celebrities to children, adolescents and young adults who have lost their hair due to cancer or other medical treatments (http://www.capsforkids.org/). Chemo Duck: A program which provides a cuddly, stuffed yellow duck dressed in blue hospital scrubs with a port or central line catheter, an educational coloring book, a DVD explaining the program and access to information to help families organize their lives during cancer treatment (http: //www.chemoduckstore.org/). Child’s Play: An organization that seeks to improve the lives of children in hospitals and domestic violence shelters through support from the video game industry (http://childsplaycharity.org/). Coalition for Quality Children’s Media: An outreach program providing free, child-friendly videos and CDs (www.kidsfirst.org). Coopers Troopers: A program that provides “caring and courage kits to siblings of children diagnosed with cancer. The kits help to recognize the struggle siblings and their caregivers have, and to elevate siblings so they know they are loved and important to their family” (http://www.coopertrooper .org/the-courage-kit/). Famous Fone Friends: An organization comprised entirely of volunteers whose purpose is to connect seriously ill and hospitalized children with celebrities through phone calls and customized videos (www.famousfone friends.org/). Game Changers: An organization that focuses on improving quality of life for children, their families and caregivers by delivering video games and toys, hosting unique gaming events to connect patients and the gaming community, offering meaningful services directly to patients and staff in hospitals and awarding financial aid and college scholarships. Microsoft ‘CLICK’: In partnership with Children’s Miracle Network Microsoft, provides the “Child Life Interactive Computers for Kids (CLICK) program benefiting patients and designed to improve the patient experience through the power of play and connectivity to the outside world” (https: //www.microsoft.com/en-ca/trending/enterprise/click-launch-brings-hospitalized-children-the-power-of-play). Reach Out and Read: A pediatrician-initiated literacy program, involving residents and child life staff giving children a prescription for an age-appropriate book on well-child visits with the potential accumulation of 10 books by the time they reach six years (www.reachoutandread.org). Ryan Seacrest Foundation: A non-profit organization dedicated to inspiring today’s youth through entertainment and education-focused initiatives facilitated through the implementation of broadcast studios in Children’s Hospitals (http://ryanseacrestfoundation.org/).

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Sabriya’s Castle of Fun Foundation: A program providing a portable, selfcontained, audiovisual entertainment unit (www.sabriyascastle.org). Sib Shops: A sibling support project focusing on training of staff to provide peer support and education within a recreation context for siblings of children with special health needs (www.chmc.org/department/sibsupp). Songs of Love Foundation: An organization providing one-of-a-kind songs for hospitalized and homebound children through the volunteer efforts of singers, songwriters, instrumentalists, and technicians (www.songsoflove .org). Starlight Children’s Foundation: A foundation whose mission is to bring joy and comfort to hospitalized children and their families. Starlight coordinates programs supported by volunteer groups providing local activities within and outside the hospital including Fun Centers and PC Pals (www.starlight .org). Teammates for Kids: A non-profit organization cofounded by Garth Brooks and Troy Aikman that partners with professional athletes, corporations, foundations, celebrities, and individual teammates to help children in the areas of health, education and inner city. They work in a number of ways, from supporting Child Life Zones to sports and recreation for inner city children (https://teammatesforkids.com/). Wish-granting Organizations: National organizations such as Make-AWish (www.makeawish.org) and others granting wishes to critically ill, terminally ill, and sometimes chronically ill patients.

Patient Experience and Engagement A final consideration in program development is patient experience and engagement. Healthcare is changing quickly and the patient experience is at the forefront of these changes. Hagood (2017) notes that, “In the shift toward value-based care, patient expectations are changing. Patients are starting to exert their power as consumers by making more demands on the healthcare provider-patient relationship. They want higher standards of care, more information about their treatment, more involvement in decisions about their care and transparency of cost and performance data to help inform their choices” (p. 1). As mentioned in Chapter 6, child life leaders often have the opportunity to promote and utilize patient engagement strategies and positive patient experience through their roles in achieving patient- and family-centered care. Clear understanding of patient satisfaction tools and feedback, along with the actions and processes that impact patient experience and engagement, enhance the child life leader’s ability to advocate for and drive efforts in this arena.

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CONCLUSION Through efficient program management and careful attention to program fundamentals, child life leaders are able to establish the foundation for effective child life programs. Commitments to staff growth and development, as well as implementation of clear, concise accountability plans by child life leaders, are important components of a thriving program. Finally, creative funding and appropriate allocation of fiscal resources by child life leaders is crucial in the administration of successful child life programs. Although the attributes of child life programs may vary, the most crucial elements remain constant: to ensure quality services to patients and families, and to maintain professional competency and consistency of programming. Child life leaders must keep informed about healthcare trends and ensure that child life services are forward looking and innovative. REFERENCES ACLP. (2017). Psychosocial Risk Assessment in Pediatrics. Retrieved from https: //www.childlife.org/resources/prap Percelay, J. M., Betts, J. M., Chitkara, M. B., Jewell, J. A., Preuschoff, C. K., & Rauch, D. A. (2014). Child life services. Pediatrics, 133(5), e1471–e1478. American Hospital Association. ( January 2017). Engaging health care volunteers to pursue the triple aim. Retrieved from: http://www.aha.org/content/17/17engagingvolunteerstripleaim.pdf Blum, L. (1996). The complete guide to getting a grant. New York: John Wiley & Sons. Brown, C. (2003). Program review guidelines. Rockville, MD: Child Life Council. Browning, B. (2001). Grant writing for dummies. Indianapolis, IN: Wiley. Child Life Council. (2003). Directory of child life programs in North America (13th ed.). Rockville, MD: Author. Child Life Council. (2005). Guidelines for the development of child life programs. Rockville, MD: Author. Clinical Supervision Position Statement, Clinical Supervision Position Statement of the Child Life Council Submitted by: Child Life Council Clinical Supervision Task Force, Chris Brown, MS, CCLS Director, Child Life and Family. Approved by the Child Life Council Executive Board August 2008 Egan, T. M., & Song, Z. (2008). Are facilitated mentoring programs beneficial? A randomized experimental field study. Journal of Vocational Behavior, 72(3), 351– 362. Hagood, C. (2017). Health care process improvement: Knowing the difference between a set of tools and a system of improvement. Press Ganey Associates, Inc. Retrieved from http://www.pressganey.com/docs/

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Hawkins, P., & Shohet, R. (2000). Supervision in the helping professions (2nd ed.). Buckingham, England: Open University Press. Huber, D. (2000). Leadership and nursing care management. Philadelphia: W. B. Saunders Company. Kapoor, C., & Solomon, N. (2011). Understanding and managing generational differences in the workplace. Worldwide Hospitality and Tourism Themes, 3(4), 308– 318. Kiley, A. (1992). Volunteers in child health: Management, selection, training and supervision. Rockville, MD: Child Life Council. Kuipers, P., Pager, S., Bell, K., Hall, F., & Kendall, M. (2013). Do structured arrangements for multidisciplinary peer group supervision make a difference for allied health professional outcomes? Journal of Multidisciplinary Healthcare, 6, 391–397. Levashina, J., Hartwell, C.J., Morgeson, F.P., & Campion, M.A. (2014). The structured employment interview: Narrative and quantitative review of the research literature. Personnel Psychology, 67, 241–293. Lee, J., & Catagnus, J. (1996). Supervising and managing people. Philadelphia, PA: Energize, Inc. Porter-O’Grady, T. (2012). Reframing knowledge work: Shared governance in the postdigital age. Creative Nursing, 18(4), 152–159. Petrila, A., Fireman, O., Fitzpatrick, L. S., Hodas, R. W., & Taussig, H. N. (2015). Student satisfaction with an innovative internship. Journal of Social Work Education, 51(1), 121–135. Rollins, J., Bolig, R., & Mahan, C. (2005). Meeting children’s psychosocial needs across the healthcare continuum. Austin, TX: Pro-Ed. Scott, M. T., Todd, K. E., Oakley, H., Bradley, J. A., Rotondo, R. L., Morris, C. G., ... & Indelicato, D. J. (2016). Reducing anesthesia and health care cost through utilization of child life specialists in pediatric radiation oncology. International Journal of Radiation Oncology • Biology • Physics, 96(2), 401–405. Stanford, G. (1980). Now is the time: The professionalization of child life workers. The Journal of the Association for the Care of Children’s Health, 8, 55–59. Studer Group. (2010). The nurse leader handbook: The art and science of nurse leadership (pp. 81–87). Gulf Breeze, FL: Fire Starter Publishing. Thompson, J. (1992). Program evaluation within a health promotion framework. Canadian Journal of Public Health, 83 (Supplement 1), S67–S71. Thompson, R., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas. Wolfer, J., Gaynard, L., Goldberger, J., Laidley, L., & Thompson, R. (1988). An experimental evaluation of a model child life program. Children’s Health Care, 16, 244–254.

Chapter 11 ONE-PERSON CHILD LIFE PROGRAMS TERESA A. P. SCHOELL s the child life profession expands, stretching to reach an ever-increasing number of children in an ever-increasing variety of venues, child life specialists often find themselves launching and maintaining new programs with a staff of one. Despite the prevalence of these one-person programs, the field lacks significant research on them. Child life professionals launching new one-person programs must often look to peers or broader research in adjacent fields, applying their findings to the child life setting. International organizations such as the Association of Child Life Professionals, or local bodies such as Child Life of Greater New York’s “small programs” group, provide strong opportunities for solo child life specialists to support each other programmatically and psychosocially.

A

I grew more as a professional in one year of running a one-person program than I did when I spent three years in a large department. It’s a truly amazing experience, but it isn’t for everyone. —K. Raymond Regardless of the setting, or the type of clinical work, running a child life program alone can be exciting and complicated work, with unique challenges, frustrations and truimphs. Any child life specialist considering creating or running a one-person program would do well to engage in careful self-reflection and research before diving in. I am lucky in that I have several years of professional experience in larger programs prior to taking on this role, which has helped me. Being a one-person program can feel very isolated, and can open the door for bad 346

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habits to form, especially in areas such as professional boundaries and scope of practice. —B. Broxterman Solo child life work can feel isolating and overwhelming, but provides extraordinary opportunities to build skills, knowledge, and capacity in child life practice. The most common type of child life program consists of a team of child life specialists working together, often within a children’s hospital. Of the 511 child life programs listed in the Association of Child Life Professional’s Program Directory in March 2016, most fell into this category. However, beyond this classic model there are an abundance of small programs, as well as programs in alternative settings. Among these, one-person programs appear most frequently. In fact, of the total of 511 child life programs across the world, 113 (22%) include only one full-time equivalent (FTE) child life specialist. As such, these programs have a major effect on the provision of child life services across the globe. While many of these programs have been established since 2005, others stretch back as far as 1970. Of these 113 programs, 14 are in Canada, 2 in Argentina, 1 in Guatemala, and the remainder in the United States. Just over half (58%) of one-person programs reside in adult hospitals serving pediatric patients. Children’s hospitals-within-a-hospital and freestanding children’s hospitals make up the second and third most common settings (20% and 15% of the total, respectively). The rest are found in community and medical specialty settings, including facilities such as long-term care/ rehabilitation centers, specialty clinics unaffiliated with a hospital, pediatric or dental offices, private practice, sibling support programs, bereavement support programs, medical specialty camps and child advocacy centers. With such variety in settings comes a variety of supervisors, often individuals themselves with little or no familiarity with the child life field. Many solo child life specialists report to nurses, doctors, or other medical practitioners based on where their department is housed, while others report to administrators, support service personnel, or even executive leaders. In the case of those solo child life specialists in private practice, they report to themselves! BEFORE YOU START As the child life field evolves and the requirements for certification potentially move towards Master’s degrees, students will find opportunities

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for greater breadth and depth in their academic preparation. Increasingly rigorous standards for internship programs also bring students additional opportunities for developing hands-on skills. Child life students should strongly consider seizing every opportunity to shadow one-person programs, never knowing where their career might lead. Whether this opportunity comes through an internship or is independently negotiated, seeing one-person programs first-hand will provide students and professionals considering this type of child life work the best exposure and insight into the day-to-day realities of a one-person program. In addition to these shadowing opportunities, those considering solo work should reflect on several other facets of preparation as well.

Expanding Your Toolbox While most academic programs provide knowledge in and application of child development, theoretical frameworks, and foundations of research, and some include classwork in medical terminology, anatomy and physiology, fewer cover administrative work in significant depth. A one-person child life program requires the solo child life specialist to not only provide the full scope of child life clinical services, but also to carry the administrative work of the program. These duties include tasks such as budget management, policy writing, interfacing with hospital administration, managing a cost center, preparing for regulatory visits, and serving on inter-departmental committees and projects. Solo child life specialists often find themselves serving in formal educational capacities, ranging from the conducting of unit-based inservices to the creation of educational posters for hospital teaching days, or even presenting at grand rounds for audiences of a hundred or more healthcare team members. Many internship programs include theoretical design projects for students, such as the redesign of a playroom, the creation of a pre-op surgery tour program, or the construction of a hospital-wide needle-pain management plan. However, interns rarely have the opportunity to launch these larger projects, and thus these remain mostly theoretical exercises. For practical limitations of time and resources, interns rarely shepherd such projects through the necessary chain of reviews, approvals, buy-in, funding, rollout, training, and stabilizing that are required to make a lasting change. Seasoned professionals and experienced child life leaders find this process challenging, despite years engaging in this type of work already under their belt. And yet, the solo child life specialist faces not just one, but many challenges of this nature. Trailblazing requires copious amounts of energy, advocacy, perseverance and finesse. This is not to say that a new graduate cannot accomplish

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these things. In fact, some of the field’s leading voices in solo work did just that! Often the most successful have a set of skills far beyond that which an entry-level curriculum might provide. To expand the skills and knowledge at their disposal, child life students and professionals considering solo work can enrich their administrative toolbox by taking elective classes in hospital administration, policy writing, grant writing, and budgeting. If the child life student/professional’s academic preparation did not already include it, coursework in medical terminology, anatomy and physiology, body systems, and medical ethics can enrich their understanding of the medical side of child life practice. Most child life specialists rely on mentors within their facility’s child life department to support the expansion and enrichment of their skill set in their early career. The solo child life specialist, however, must rely on self-development strategies, seek mentors outside of the profession within the new institution, or connect with child life mentors at other facilities. When trailblazing a child life path, the ability to understand and use strong medical knowledge and terminology can increase utilization of child life services and visibility, as well as respect for the child life specialist. Beyond classwork, the opportunity for self-education is nearly endless. Emily Murray, who launched the child life program at Harlem Hospital Center (Harlem, NY) in 2011, recommends reading a selection of books about medicine and hospital management to better understand hospital priorities and build knowledge in departmental operations and administrative skill (personal communication, January 12, 2016). In the midst of preparing administrative and teaching skill sets for solo work, those considering working in a one-person child life program must also remember to assess their clinical skills. High quality internship programs provide students with extensive opportunities to practice diverse hands-on skills, most often in at least two different clinical settings. Typically, these are within large children’s hospitals staffed with robust child life teams. In these settings, child life specialists often specialize in a particular clinical area, in contrast to the experience of most solo child life specialists. Additionally, in large programs the newly hired child life specialist has a team of mentors and peers to assist them as they adjust to the new role. This often includes a system of formal mentorship and training, an analog of which the solo child life specialist will lack. An exception exists for the solo child life specialist assuming the role of an outgoing child life specialist with a planned transition period. All this adds up to the solo child life specialist needing a robust and diversified set of clinical skills to tap into as they cover multiple areas, as well as the self-education and self-discipline skills to gather and master any skills missing from their toolbox.

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A Little Introspection Is Required Beyond the technical skills, there are some vital psychosocial-emotional considerations that significantly impact running a one-person child life program. Solo child life work can come with a tremendous workload and psychosocial burden leading to feelings of isolation, futility, and loneliness. On the other hand, the triumph of seeing the program come together, the impact the work brings to the lives of children and families, and the role child life can play in shaping a facility’s culture can lead to feelings of joy, accomplishment, and tremendous professional satisfaction. Before embarking in solo child life work, whether taking over an established practice, or forging a new one, child life specialists must assess themselves with a keen and honest eye. For those who find strength and support from participation in an active peer group, solo work may pose a bigger challenge. Solo child life specialists can forge alternative peer groups with other healthcare professionals at their facility, or with child life specialists at other facilities, but the reality of a one-person program includes coping without regular, direct interaction with someone in the same profession. Coming to this new position, I don’t have anyone automatically in my back pocket. I don’t have anyone that absolutely gets where I’m coming from, why I did something the way I did, what my role truly entails. —K. Pulford Kelly Pulford, who launched a one-person program at Maple Grove Hospital (Maple Grove, MN) after several years in a larger program, found the transition rough at times, but an amazing benefit to her career (personal communication, December 31, 2015). As the only child life specialist in a given facility, the solo child life specialist must accept the reality that the reporting structure will consist entirely of individuals who are not child life specialists themselves, and often have little to no experience with child life services. In a best-case scenario, the solo child life specialist reports to a leader with deep engagement who sees great value in what child life brings to patients, families, and staff. Often solo child life specialists are supervised by committed individuals who are nevertheless drawn in many directions, and often have little relevant knowledge or experience to form the foundation of the relationship. This can leave the solo child life specialist and his or her supervisor having to experiment with existing models for interaction that may or may not be ideally suited to child life. Many one-person programs require the child life specialist to possess high levels of self-supervisory skills, leaving one to build, administer, and grow the program with little supervision or guidance.

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Learn from people who used to be in your role and find co-workers on your team who can be child life advocates. Running your own program is a challenging but amazing experience and the needs/supports you require as a solo position are different than if you are part of a team. —K. Raymond Across all programs, through all solo experiences, flexibility remains a core concept necessary for success. The solo child life specialist must consistently demonstrate elasticity in practice in both the clinical and administrative spheres in order to succeed. Whether blazing the trail for a new child life program, or stepping up to the helm of an already established program, the reality is that the program will continuously evolve. Flexibility to change and adapt the program and practice to meet the ever-changing needs of the facility is mandatory for the continuation and growth of the child life program. WHERE TO START? Child life professionals taking over an established one-person program can build on the foundation laid by their predecessors. For those beginning from scratch, however, considerable foundation must be laid to prepare the emerging child life program to crawl before it can walk.

Find Some Allies As the child life field grows and expands into new arenas of service, the opportunity to introduce child life services to new facilities continues to grow. Across all venues, introducing child life services to a new facility requires allies. Allies are key individuals within the facility, usually with welldeveloped networks of connection and influence. For an aspiring child life trailblazer, finding strong allies to speak on behalf of the potential new service is a vital and necessary first step. Without voices of advocacy and support from within the facility, child life specialists will find themselves struggling to gain buy-in and establish a strong initial presence. Consider allies as a foot in the door. With good reason, many professionals listen more keenly to their professional peers. That is, doctors listen to doctors; nurses listen to nurses. When professionals share similar education, training, and practical experience, as well as work towards the same goals with the same challenges and very similar toolboxes, it is only natural that they should value each other’s opinion as having particular insight into any given situation. Having allies in a variety of key professions and areas

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within the facility sets the stage for having valued voices speaking on behalf of a potential child life program throughout the institution. Potential allies can come from a wide variety of professions within the facility. The influence and supportive voice of individual allies often matter more than the capacity in which they serve. When launching a one-person program at Rochester General Hospital (Rochester, NY), this chapter’s author relied on key administrative allies, including the Chief of Pediatrics and the Chief Nursing Officer. Benjamin Broxterman, who began his program at Stormont Vail Health (Topeka, KS), found allies among the physician group, several of whom had worked with child life specialists in children’s hospitals in the past (personal communication, December 31, 2015). Belinda Thayn worked in tandem with her husband, a physician. While he and Castleview Hospital (Price, UT) negotiated his new physician position, she approached the hospital’s chief executive officer (CEO) to introduce the idea of adding child life to their service line. Fortunately, the CEO brought experience with child life services from a previous setting, making him a receptive audience for Thayn’s child life proposal (personal communication, December 11, 2015). Great places to look for allies include: • Administration—department chairs, nursing administration, and executive leadership. • Providers—doctors, nurse practitioners, and physician assistants, especially those with previous experience working in a clinical setting with child life. • Nursing—nurse managers, floor nurses, and nurse educators. Again, look for nurses with previous experience partnering with child life specialists. • Financial—staff in the development office, and grant writers. Once identified, allies can help facilitate a high-quality needs assessment. They can help gather key pieces of data (e.g. average pediatric census and length of stay) and recommend areas throughout the facility that would benefit from child life services. Allies can connect the child life specialist with key stakeholders likely to support the proposal and pinpoint current topics that hold keen interest to executive leadership (e.g. patient satisfaction and quality improvement). Additionally, allies may possess insight into possible roadblocks that the child life specialist might encounter.

Assess the Needs One of the first skills taught in most child life internship programs is how to assess the needs of a pediatric patient. Multifaceted and complicated, pa-

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tient assessments require practiced skill, a solid foundation of relevant developmental theory, and research into patient experiences that inform their current and future coping skills. Assessments of potential facilities for introducing child life services are equally complicated. Researching the history, vision, and mission of any given facility makes an excellent first step. Insights into the facility’s culture and goals also serve as vital pieces of information. Next up is assessment of the pediatric census for volume, distribution, frequency and needs. Within the facility, where do children receive care? The assessment must look beyond the pediatric units and treatment centers to areas where children pass through. For example, if the program proposal will focus on placing child life services in the pediatric emergency department, it should also examine ancillary areas that these children may visit. This may include radiology where children undergo a variety of scans or imaging procedures. When focusing on services for an outpatient clinic, the child life specialist must investigate the pathway of the pediatric patient. Do they get blood work drawn in the clinic? Or, does staff send the children to a phlebotomy draw station elsewhere in the facility? For less traditional settings, consider the various points of contact and need. If the goal is to provide child life services in a funeral home, contact points may include speaking with families by phone, or in planning visits, well before meeting the children who may attend a funeral service. Regardless of venue and the pathways of the children served there, some basic information should feature prominently in any service proposal. How many children will benefit from the introduction of a child life program? Ideally, this number can be generated from census data (e.g., number of patients, average length of stay) accessed by allies within the facility. Without allies to access this concrete data, the child life specialist must create the proposal using estimates, which carries far less impact. When examining the pediatric census, consider distribution as well as total number. Each of these scenarios constitutes “an average of twenty children per day” but generates very different child life staffing needs: • “The inpatient unit has 20 beds, and the unit typically runs at full capacity year round.” • “Our health system has four outpatient campuses. Each of those sees about five kids per day, closed on weekends.” • “We hold a pediatric clinic day once every two weeks, with about 280 kids seen each time.” • “The inpatient unit usually has five kids at any given time, two to three pediatric surgeries per day, seven or eight in the nursery, a couple in urgent care, a couple kids come to visit parents in the ICU, and we occasionally have a kid show up in our adult emergency department.”

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Based on census data and distribution, the child life specialist can consider a variety of staffing patterns. For facilities with small, intermittent needs, perhaps the way to start is with an “as needed,” or PRN, position, that would allow facility staff to call in the child life specialist as the need arises. I think my hospital was initially concerned with having enough work for me. As time has gone on, I am becoming more and more involved in things and expanding the network of people that know they can ask for my help/input. —B. Thayn Covering multiple institutions may provide a solution for low-census facilities, though the child life specialist must remain cautious of underestimating demand. When Laila Ramji first launched her program at Mattel Children’s (Santa Monica, CA), she worked only two days per week, shared between two campuses. This soon increased to three days per week. By year two, Ramji’s position transitioned to full-time work, covering just one campus (personal communication, January 21, 2016). If the facility primarily serves adult patients, such as an adult community hospital with a small pediatric census, consider targeting child life services towards the children of adult patients at end-of-life, or with life-limiting-conditions, as a way of supporting a full-time child life position with only a part-time pediatric census (Kean, 2010). Next, look at patient satisfaction and staff satisfaction. Without allies in the facility, gathering this type of data can range from difficult to impossible. Does the facility gather formal patient/customer satisfaction data? Many healthcare facilities use a third-party vendor to gather satisfaction data using standardized questions. By reviewing the questions used on the surveys, the child life specialist can identify key areas that child life has the potential to impact, such as parent perception of staff’s concern for the child’s comfort during procedures. Larger facilities may also use a third-party vendor to measure staff satisfaction, engagement, and culture. Leaders will look to focus on key areas from this staff feedback, and may view child life services as a way to help meet these needs. If staff report having insufficient training and tools for working with pediatric patients, the introduction of a new service to support pediatric patients and staff may be most welcome, indeed! Beyond census and numbers, understanding the flow and function of the clinical units the child life specialist hopes to serve is a required component for any successful program proposal. Whether the anticipated staffing pattern covers one clinical area or multiple, meeting with unit leaders early on can provide valuable insight and buy-in while creating a proposal. This can also help the child life specialist identify additional potential allies! When meeting with department leaders, in addition to confirming census informa-

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tion, the child life specialist should ask about the function, flow, and culture of the unit. Are there staff members with experience working with child life specialists at previous facilities? Would they welcome child life to their unit? What are the goals of the clinical unit? What challenges does the team face when working with children? How can child life help address these needs? What roadblocks might exist for the introduction of child life services into this unit? In addition to meeting with unit leadership and assessing needs at the clinical unit level, the child life specialist should also meet with an ally at a facility level, to assess the larger picture and how it will fit into a program proposal. Beyond confirming the census size and distribution of pediatric patients throughout the facility, ask about the needs for children of adult patients. Learn about the facility’s culture, goals, mission, vision, and values. How will child life fit into this framework? How will it help the facility to meet its goals? What can child life contribute towards the facility’s vision? Where does administration see the biggest needs? What benefits are they most interested in? What roadblocks do they foresee for the introduction of a child life program? During this process, the child life specialist may discover that the answers to some questions may differ at the unit, versus the facility level. This dichotomy can provide valuable insight to the child life specialist in understanding the culture of the facility. Other helpful factors to assess include the various methods and personnel the facility currently uses to meet the psychosocial needs of children. Are there organizations or individuals that donate toys for pediatric patients? Who organizes and distributes these? Does the facility offer special events around holidays? Does the facility receive special visitors, such as professional athletes, caroling groups, or superheroes? Who organizes and supervises these visits? Does the facility offer any community outreach events? Who runs those? Does the volunteer office provide volunteers to play with children? For clinical needs, do they have a pre-surgery tour program in place? Perhaps a perinatal loss program? Or, a new sibling class? Who provides these services? The employees who have provided the fun activities for children, organized special events, and handed out toys for years may welcome the introduction of a child life program as an addition to the psychosocial supports available to the children they serve, or they may view child life as redundant, unwelcome, or even as competition. Knowing the key players, and proactively nurturing positive relationships with these key players, can help the solo child life specialist to cultivate allies instead of roadblocks. Finally, while assessing the facility for the potential introduction of child life, get to know what competition for funding and space may also exist.

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Have other child life specialists proposed programs here in the past? What roadblocks did they face? Is another child life specialist also currently proposing a child life program for this facility? Does the facility have other programing or services that might be perceived by leadership as overlapping or similar to child life services, such as recreation therapy, play therapy, or “play lady” volunteer positions? If so, the proposal will need to proactively speak to the difference between these services and child life, to demonstrate the unique value of a child life specialist on staff. Most often, funding constitutes the greatest roadblock to launching a child life program. Competition for funding priority can come from many sources that have little or nothing to do with psychosocial supports for children, such as capital campaigns, building expansions, or converting an entire health system to an electronic medical record. About a year after I launched the child life services program, I created a proposal to add a second child life specialist position. It was a beautifully crafted proposal, rich in metric data, proved value, and demonstrated need. Too bad my timing was awful! At the same time I submitted my proposal, the hospital was gearing up to convert everyone to an electronic medical record (EMR). For the next two years, the EMR became the leviathan that devoured all funding. I had to wait until that whole process was complete before I could try again. —T. Schoell

Find Some Funding Once the assessment shows a genuine need for a child life program, the next step is to secure funding. Here, the child life specialist’s knowledge of budgeting, cost centers, and hospital operations really shines. This is a key time to rely on the aforementioned allies. In an ideal world, every medicalrelated facility that serves children would prioritize and fund a well-staffed child life program. Until that becomes the standard of care across all venues, it often falls to the child life specialist to find the funding needed to launch a new program, and sustain it through its initial years. There are really only two ways to fund a child life program. Either the money comes from the hospital budget, or it comes from donated funds. There are pros and cons to each, and some creative ways to combine them. Many one-person programs run on a combination of both. To fund a program through hospital budget requires a solid foundation of knowledge in how facility budgeting works. This includes writing program budgets, navigating the budget approval process, managing the budget and

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reporting on its use. For covering salary and benefits, hospital funding provides a much higher degree of security for the child life specialist’s position. Once created, approved, and in place, the child life specialist must renew the budget each year, but the position—the individual’s job—exists in the hospital budget. Though not guaranteed, each year’s new budget can use the previous year’s budget as a template, helping to smooth the process, and hopefully maintain the security and continuation of the child life program. Careful awareness of the facility’s fiscal cycle, including when the fiscal year begins and ends, and when budget proposals for the next cycle come under consideration, can help the child life specialist optimize the timing of the proposal. Donated funds are the other primary method for funding a child life program. These funds can come from a variety of sources, including grants, gifts, and endowments. Grant money comes from charitable organizations, for the support of specific projects, and is generally not renewable long-term. With only a few exceptions, the facility must possess formal standing as a 501(c)(3) non-profit organization in order to qualify for grants. Accessing grant money requires a well-constructed proposal, usually submitted in response to a request for proposal (RFP). Finding the right match, that is which grant opportunity matches the project, increases the chances of having a proposal selected for funding. Grants operate on their own unique time line. Grant funding isn’t like other funding. You have to wait for the RFP, then put together your proposal, submit it during the assigned window, then wait for the designated response time to find out if you got the grant. If you’re picked for funding, you still need to get signed off by administration and the hospital’s legal team before you can start spending the money. ‘Grant Time’ can mean a whole year to go from idea to spending. —C. Fisher Professional grant writers bring a host of skills and experience to this process. Hopefully, the facility the child life specialist plans to work with employs a professional grant writer, like Carol Fisher, who secured the startup grants for the child life program at Rochester General Hospital (Rochester, NY) (personal communication, March 22, 2016). When meeting with allies within the facility, the child life specialist can ask about a facility grant writer, and request an opportunity to meet. This step, though, should only be taken with an official invitation from a facility leader. Without the administrative support for a potential child life program already established, it would waste both the child life specialist’s and grant writer’s time to meet and discuss

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grant-funding opportunities for a new program. It would also be a significant breach of protocol. A grant writer employed by the facility is paid to work on facility projects, and to attempt to access their expertise and assistance without the approval of facility leaders would be poor manners, and likely to alienate potential allies. For a child life specialist not yet employed by the hospital to pursue grant funding could be a little risky, because the hospital could get the grant money, and then decide to hire someone else. —C. Fisher If the services of a professional grant writer are not available, then the child life specialist can undertake the writing of grant proposals. Several books and websites offer guidance and instruction on this process. Under no circumstances, however, should the child life specialist apply for a grant on behalf a facility without explicit, written permission and approval from the facility they hope to work with. A grant proposal is, in essence, a proposed contract to complete the project if selected for funding. If a child life specialist submits a proposal to launch a new program, receives funding to do so, but does not have buy-in from the facility, the specialist will be unable to complete the project, will need to return the funding, and in doing so will have created much ill-will from both the facility and the granting agency. There are a couple caveats to using grant money to fund a new child life program. First, grants are highly competitive, often with overall funding rates of 20% or less. Second, even if selected for funding, grant givers typically fund self-contained projects for one-time needs. Very rarely will grant givers annually renew a grant for ongoing needs, such as salary. Much like a doctor might order a one-time bolus of intravenous fluids to help a dehydrated child, grants help fulfill a one-time need for child life services. Most large institutions have a major gifts office, sometimes called a foundation or development department. For smaller organizations, a single individual may handle these duties as a primary duty or as an ancillary responsibility included in another position. Whomever the facility uses for this capacity, these professionals work with individuals in the community with a desire to make monetary donations. Oftentimes donors are wealthy philanthropists in the community making charitable cash gifts, either as one-time events, or as part of an ongoing giving plan. Other times, this may be an endof-life gift, such as a lump sum designated in a will to go to the facility upon a person’s death. The development office can help identify and work with donors with interest and resources sufficient to support child life services in a more sustainable way. Note that salaries or other major program compo-

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nents funded in this way remain much more vulnerable compared to programs funded through a hospital’s budget. The donor need only have a change of mind or experience a change of circumstances, and the funding dries up. At best, this leaves the development office and the child life specialist scrambling to find alternative funding, and at worst, could lead to the immediate dissolution of the child life program. Among the charitable funding options, endowments stand out as the gold standard for long-term financial security for a child life program. An endowment requires a very large sum of money to create, but then generates a renewable source of funding. The gifted money creates the base of the endowment, called a principal, which is never spent. Instead, that money is invested to create a sizable interest income. It is the interest, and never the principal, that becomes the funding for the child life program. While a wonderful aspiration, the substantial funding needed to create an endowment makes this extremely hard to accomplish. Roughly speaking, about $10,000 of endowed principal is required to generate $500 in interest over the course of a year. While child life salaries vary, most positions would need a principal endowment of at least $1,000,000 to generate enough interest to pay salary and benefits for a single child life full-time position. While difficult to obtain, an endowment offers the very best financial security for the child life program, as it is self-renewing, unending, and specifically earmarked for that purpose. When the original principal amount is gifted specifically to fund the child life program, the facility cannot reassign that endowment to another use without violating the terms of the gift. Essentially, an endowment creates ongoing funding that can be used for no other purpose, thus funding the program and protecting its continued existence all at the same time. Given the size of a donation needed to create an endowment, few child life specialists will find this a viable option for starting a child life program. However, every small child life program should work towards this ideal as a way of protecting the long-term sustainability of their program. Broxterman, from Stormont Vail Health (Topeka, KS), often partners with his hospital’s development office to give talks and presentations for donors and prospective donors about the child life program and the work that he does with children and families. This method of partnering with development staff highlights the opportunity to fund specialty services that impact family-centered care. It also brings the child life program highly valuable visibility with individuals who may be seeking programs to fund . . . or endow! Donations are variable, grants uncommon, and endowments extraordinarily rare. Given this, in most circumstances the child life specialist will do best to first pursue facility funding for the new program, and fall back on donor funds only after exhausting facility-based options. That being said, there are some creative

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ways to combine these options. Many one-person programs work from a combination of hospital funding and charitable gifts. The most common combination finds the salary and benefits for the child life specialist covered under the hospital’s budget, while the materials budget for the program comes from donors. Some examples include Dignity Health Medical Center’s (Red Bluff, CA) solo child life specialist, Elizabeth Welch, who reported receiving facility funding for salary, though the department in which it was housed moved several times over her seven years there (personal communication, December 13, 2015). Also, Kelly Raymond, who took over a previously established one-person program at Nanaimo General Hospital (British Columbia, Canada) worked with a combination of facility and philanthropic funds to support her program (personal communication, December 11, 2015). The hospital covers my salary and benefits, but there is no budget for materials. I get as much stuff as I can through in-kind donations, and then fill in the gaps by purchasing the materials I need with money from our Foundation account. We are very lucky to have generous community support, so that the balance in the Foundation account is high enough that it generates enough interest to cover most of the materials I need to order. In a way, it works like a little mini-endowment. —T. Schoell One of the most powerful ways to combine the hospital budget and donated funds is to use grant funding to launch the program and leverage its transition into the hospital budget. Carol Fisher, grant writer for Rochester General Hospital (Rochester, NY), did just that at the request of the Chief of Pediatrics in 2009. Grant proposals led to step-down funding in which the new child life specialist’s salary would be 100% grant funded during the first year, 50% the second year, and 25% the third year. This step-down grant required a commitment for hospital budgeting to step up their funding over the course of the three years. This method used the grant funding to provide much needed financial support to the child life program in its first few years, as it proved its value to the hospital, and then eased the transition of the salary commitment over to the hospital budget in stages. Whether funding through grants, donations, endowments, or hospital budget, there are several things to keep in mind when creating a program proposal. The proposed budget must include salary, benefits, and money for necessary materials. The child life specialist should also consider including funding for professional development in the form of webinars and conference attendance. Unlike some of the more robustly staffed professions such

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as nursing, local options for continuing education and professional development hours for child life specialists can be few and far between. Most local options are, at best, tangentially related to child life work. Accessing regional and national educational opportunities geared specifically towards child life specialists is necessary in order to maintain fluency with the newest advances in research, knowledge, skills, and tools in the child life profession.

Get it in Writing Creating a program proposal, having it accepted, and securing funding can create extraordinary enthusiasm and momentum. The child life specialist and facility might find themselves carried away by this momentum, however, and enter into an employment contract without the usual scrutiny prospective employers and employees should give to the hiring process. In most circumstances, the child life specialist who creates the proposal is also the child life specialist hired by the facility to launch the new program. But this does not always have to be the case. Medical facilities typically have a human resources team to shepherd the hiring process, who will ensure the facility engages in its usual standards of research, interviewing, and due diligence. For the child life specialist, though, celebrating the acceptance of the proposal, it might be tempting to skip the details and dive headlong into the new position. After all, the purpose of the proposal and all the work put into it was to create one’s own child life job, right? A moment of caution, reflection, and investigation, however, is merited. Once the facility accepts the proposal and creates the new position, the child life specialist should consider that prospective job with the same scrutiny and reflection with which one would consider any other child life job offering. Perhaps, given the trailblazing nature of the new position, a slightly higher level of scrutiny may be merited. Just as the child life specialist will blaze new trails clinically once in the job, the hiring process and startup will also be new ground. Before accepting the position, the child life specialist should ask to see the facility’s finalized job description in writing, and review it carefully. Hopefully, the proposal includes a well-written job description, detailed and relevant to the program the child life specialist hopes to build (see the Association of Child Life Professional’s Resource Library for sample job descriptions). The inclusion of a job description sample in the proposal, however, does not guarantee that the facility’s human resource department will utilize it as written, or at all. Without taking the time for this step, the child life specialist may face an annual review at the end of the first year, only to find that the job description looks nothing like the work actually done during the first year of the program.

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Additionally, the child life specialist should ask about office and storage space. When introducing a new role into a medical facility, these details sometimes get overlooked, only to result in a scramble on the child life specialist’s first day. This can result in the child life specialist being assigned an office far from the assigned clinical area or with no office space at all. Storage space, too, should be addressed in the planning stage. As most child life programs rely on donations of toys, games and crafts (the bulk of which arrive during the winter holiday season), quality storage space can empower the child life specialist to store and distribute the donations in a more equitable manner throughout the year. This storage space may be bundled with office space and may be far from clinical areas. If that is the case, having small areas of storage in relevant clinical areas allows the child life specialist to keep time-sensitive tools, such as procedural support materials or bereavement kits, readily available for use when an urgent need arises. Finally, a written, detailed, proposed budget is one of the foundational cornerstones of a program proposal. This provides facility personnel with a fiscal framework in which to consider the proposal. Additionally, including a detailed budget in the proposal provides the foundation for an approved budget to use when actually starting the program. Having this budget in writing and approved before accepting the job and starting the program can provide much needed protection by eliminating potential bumps in the road before they ever have a chance to create problems. . . . It is imperative to have/be granted some sort of operating budget as part of the deal for starting the program. It should be given to you your first day of employment and be non-negotiable. It is incredibly hard to start a program with nothing. —K. Pulford If the proposal is approved without a line-item budget, consider creating one that specifically lays out the details of how much money will be needed for startup materials such as teaching dolls, and on-going materials needs such as craft supplies, and where that money will come from. This should be documented in writing, and signed by the relevant key stakeholders before accepting a position with the facility. Likewise, if utilizing grant funds to launch a program with a planned transition to hospital funds, that plan should be specifically written out and signed by the relevant key stakeholders (see Figure 1).

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PROPOSAL CHECKLIST • Identify key allies, including meeting with unit leadership as well as facility leadership • Needs assessment for the facility, including census size and distribution • Proposed staffing pattern, including clinical units to be served and additional services such as education of healthcare team members • Written job description and potential reporting structure • Request for office/storage space • Line item budget, including º Salary/benefits º Continuing education (i.e., conference/webinar funding) º Startup materials (i.e., teaching dolls, procedural support materials) º Ongoing materials needs (i.e., craft supplies, bereavement books) • Potential philanthropic supports, including a transition plan for any grant-funding portions to facility-funded with a concrete timeline

Figure 1.

Making it Work Whether launching a new program following an extensive program proposal and approval process, or taking over a pre-established program, the solo child life specialist can anticipate a variety of triumphs and challenges along the way. When breaking ground as the first child life specialist in a facility, the solo child life specialist faces the exhausting reality of repeatedly introducing child life services to novel audiences, including nurses, providers, and administrators. Not only must solo child life specialists prove their value as unique practitioners, but they also represent the program and the profession to their colleagues. The child life specialist assuming the role from an outgoing child life specialist in an established program can face similarly exhausting challenges, though of a slightly different nature. Instead of trailblazing, the incoming child life specialist may face the challenge of constant comparison to the previous child life specialist. The new child life specialist may choose to run a very similar program or a very different one, but the natural human tendency for comparison will occur. Whether staff loved or loathed the previous child life specialist, the struggle to differentiate self and practice represents a challenge equal to any proposal design work. Time management issues also prove to be a constant and pervasive obstacle for the solo child life specialist to overcome. Fortunately, the assessment and prioritization skills learned in child life internship translate well to the operation of a one-person program. When learning clinical prioritization,

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child life students practice gathering relevant data such as patient and family information, psychosocial stressors, and medical variables. Based on this data, they prioritize which patients will most need services that day, which can have their needs met in other ways, and which patients can manage the day with no interventions at all (Koller, 2008). These same skills can translate to the assessment and prioritization of a facility’s child life needs. After gathering data on census, distribution, the practices of medical staff, the receptivity to child life services, and other psychosocial supports available, the solo child life specialist can then prioritize the focus of child life clinical services, patient and program advocacy, education, and which projects to tackle first. For example, consider a facility with high pediatric censuses in both the emergency department and surgical center. If the emergency department serves as the region’s top trauma center, bringing many high needs patients to the department on a regular basis, this would make the department a higher priority for focused child life services. Likewise, if the surgical center enjoyed a robust pre-surgery tour program run by the nurses, an extensive pre-surgery play area, and a long-standing practice of supporting parental presence for induction, the need for child life services in this department may become a lower priority. Key elements needed to make any one-person program function effectively, efficiently, and sustainably include maximizing clinical impact, expanding reach, participating in program and patient advocacy, attending to administrative and financial details, gaining buy-in, and preventing burnout.

Maximize Clinical Impact More than any other component of the one-person program, the clinical work must take center stage. When introducing the value of child life services to medical and administrative staff, seeing child life in action is the single most effective method for communicating value and impact. In any oneperson program, the child life specialist should look to maximize not only the amount of time spent in clinical care, but also to maximize the impact of that clinical work. Don’t JOAT. A jack of all trades ( JOAT) is a master of none. Unless in a small, focused setting, such as a dental clinic or medical camp, the solo child life specialist will find multiple touch points throughout the facility with pediatric patients. The temptation to try and meet the clinical needs of all areas with pediatric patients, while understandable, can quickly lead to an unsustainable model.

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Don’t spread yourself too thin. It is very easy to want to do everything, and say yes. But it is important to do one or two things really well. —I. Man Rather than providing high quality services to a few key areas, the JOAT brushes the surfaces of the needs in all areas, but never stays long enough to truly make an impact in clinical practice, build relationships with medical teams, or forge a lasting change in the culture of the unit. The net result of a JOAT practice is multiple medical teams with an overall impression of “Sure, child life is great . . . when we have it. But we see kids all day long, seven days a week, and child life is here for about 20 minutes every other Tuesday.” Quality and quantity may be viewed as two opposing teams in a game of tugof-war, and it falls to the solo child life specialist to bring these opposing forces into balance. Set yourself up for success by starting small. Choose three or four key jobs, get really comfortable with them, and then slowly start adding more responsibilities once you have mastered those three to four key areas. Spreading yourself too thin is unsustainable and will eventually lead to burn out! Trust me . . . this is coming from experience! —K. Raymond Expanding the quantity of clinical areas covered, at the cost of quality coverage, leaves the child life program looking nonessential. By decreasing the quantity of areas covered and increasing the quality of the services provided (i.e., quantity of clinical hours of coverage provided as well as the number of patients in the department served) the medical teams in these select areas can begin to see the true impact of child life clinical services. JOAT practices can also create unrealistic expectations with leaders and administrators. By covering several areas each day, solo child life specialists communicate through their actions that one child life specialist is enough to meet the needs of all the pediatric patients in the facility. If the one-person program is in a small clinical setting, such as a pediatrician’s office or a funeral home, this might very well be the case. However, for the majority of oneperson programs, which are in community hospitals, this is not the case at all. As word spread through our facility that I am available, the number of consults to areas other than my assigned units has increased exponentially (over 70 in less than 6 months). This is in addition to a number of management/administrative duties. . . . This creates a drain on my

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time and resources, and I often feel like these activities reduce the number and quality of interventions to my assigned areas. —B. Broxterman One child life specialist attempting to meet the clinical needs of the inpatient unit, newborn unit, outpatient clinic, radiology, day surgery, and emergency room is an unsustainable pattern. From the perspective of hospital administration, however, if one child life specialist is doing all that, why hire a second one to help? Explore Staffing Patterns. With only one child life specialist, the options for staffing patterns are nearly endless. Different patterns will work best in different facilities to meet clinical needs, balance the clinical and administrative duties of the child life specialist, and synergize with the child life specialist’s need to support work-life integration. Some facilities may hire the child life specialist with a specific schedule in mind, while others will leave it to the specialist’s discretion to set the best schedule. Except in a few rare cases, no particular schedule will present itself as the obvious and only choice. By using deliberate communication, clear expectations, and offering anticipatory guidance, the solo child life specialist can create the opportunity to try out a variety of staffing patterns to see what will work best. Meeting with unit leadership or attending a shared governance meeting can allow the child life specialist to access the preferences of the medical team regarding child life coverage. Whatever needs each clinical unit has, the best way to find out what they want is to ask. Once the needs and preferences are identified, the child life specialist can assemble a set of trial schedules. Whether staff love or loathe the results, knowing that it is a trial pattern lasting a set number of weeks will encourage them to gather their thoughts and input to share with the child life specialist, facilitating changes and improvements to the pattern. In child life as elsewhere, one can rarely please all people. Communicating that trial patterns are designed to maximize the most effective use of child life services across departments can help soften any disappointments in light of the collaborative nature of the services. The message of collaboration the child life specialist sends to medical staff by gathering, valuing, and utilizing their input regarding child life staffing patterns can support buy-in, relationship building, and good will. Set Some Clinical Goals. The temptation to take on a lot of very worthy projects can quickly lead to a deep imbalance between time devoted to clinical work and everything else. In partnership with the child life specialist’s supervisor, the child life specialist can set a specific clinical goal regarding what percentage of time will be spent in clinical care over a specified time period. This might be 90% of each day, or 65% of each week, or three weeks

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out of each month. Much like scheduling patterns, some trial periods to pilot any prospective standard goal allows the child life specialist and supervisor to gather data regarding effectiveness and results, and adjust the goal accordingly. By setting the expectation upfront, that is to try out a goal for a set number of months then revaluate, the child life specialist creates structured opportunities to revisit any goals that prove untenable, overly ambitious, or insufficiently motivating. Additionally, tracking clinical time provides a foundation for measuring productivity, a core component to leveraging metric data to support and grow the child life program. Productivity is a key component to measuring return on investment (ROI), a common concept in the administrative realm. Gathering and utilizing metric data will be covered in greater detail below. Learn to Say No! Over time, the medical staff will build familiarity and trust with the child life specialist, the program, and the child life profession. The time and energy the child life specialist puts into building relationships with the healthcare team will pay off in increased consults, increased impact in the treatment room, and increased appreciation of child life’s role on the healthcare team. This, however, can also lead to an ever-increasing demand on the child life specialist’s time, attention, and energy. Medical staff may begin to turn to child life for an accelerating volume of projects, committee work, and clinical needs. For some solo child life specialists, their reputation may exceed the limits of their practice, leading to staff bringing inappropriate pediatric problems to the child life specialist for resolution. While additional opportunities to bring a child life perspective to facility committees and to impact the care of children and families are to be valued, one child life specialist can only do so much (Dier, 2014). As the sole member of the child life team, the child life specialist must learn to say no to clinical, administrative, educational, and project requests that disrupt the delivery of high quality services, derail the balance of clinical and administrative work, or exceed the scope of child life practice. Utilizing a balance of collaboration and limit setting, the child life specialist can set boundaries while building relationships. For example, if asked to babysit siblings during a family meeting, the child life specialist may pull in resources to meet the need, such as a volunteer or student, while advocating for the value of child life’s participation in the family meeting process.

Expand Reach Avoiding the dilution of clinical impact by allowing the quantity of coverage areas to overshadow the quality of services provided is the heart of forging a strong and sustainable one-person child life program. In balance with this imperative, however, is the need to demonstrate the high value of

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the program and its necessary inclusion in the care of children and their families. Solo child life specialists have many opportunities to expand their reach and increase their impact within their facility, without sacrificing the core clinical work. Get Used to Public Speaking. The solo child life specialist will encounter a wide variety of opportunities to share knowledge, skill, and insight with diverse audiences, from medical staff, to administrative teams, to students and volunteers. While these educational opportunities can take away from clinical time in the short run, the positive impact on staff interactions with children and families can make the trade-off well worth it. In many facilities, solo child life specialists cover at least two clinical areas, and carve out part of their practice for administrative duties. But, even if the child life specialist were to devote a full forty hours each week to clinical care, all in just one unit, that would still add up to participating in only a small portion of the care provided there to children and their families. For example, consider coverage in the pediatric emergency department. Even if the child life specialist were to spend 40 hours each week in the department, seeing patients and providing child life interventions, that is only 40 hours out of the total 168 hours that the department sees children each week. That is less than 25% of the time! With no additional child life specialists to assist in clinical coverage, the need for the solo child life specialist to share knowledge and skills with front line medical staff becomes virtually mandatory. While countless opportunities for education through modeling and in-the-moment coaching will present themselves during clinical care, structured classroom, lecture, and in-service settings allow medical staff to focus their full attention on learning the material presented by the child life specialist. The range of topics and skills to teach will vary based on the facility, units served, patient needs, and staff interest. I feel it is a huge responsibility to educate staff in better practices when it comes to pediatric patients. . . . I will constantly be educating, reminding and modeling for staff. It is great when I finally see a staff member using softer language, see an anesthesia provider let a child sit up for induction, or see a nurse help a parent use a position for comfort during a procedure. —B. Thayn Training for medical team members in the fundamentals of child development and supportive language can help enhance the developmentally supportive aspects of the medical team’s patient interactions. This can lead to higher patient and family satisfaction, increased compliance with medical

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exams and treatments, and decreased demands for child life interventions to address misconceptions and fears in the medical setting. In larger facilities, where the solo child life specialist will provide clinical services to only some of the units seeing pediatric patients, trainings for staff in the other pediatric areas can help bring child life insights and techniques to their practice. Some solo child life specialists receive requests to train other teams in child life techniques, such as teaching the phlebotomy teams the value and use of comfort positions, the post-anesthesia unit therapeutic games to increase oral fluid intake, or ICU nurses, sibling visit preparation techniques. For others, like Meghan Kelly from the Children’s Hospital at Montefiore (Bronx, NY), a bi-directional workshop model combines the best of teaching with relationship building. In this model, a collaborative approach to learning has members from both professions prepare and present information to the other (personal communication, April 6, 2016). We do all of our in-serving in a way that promoters dialogue rather than ‘us’ teaching ‘them’ . . . (they) prepare a 15–20 minute presentation for us on their service and considerations in practice they want us to be aware of, like EEG techs explaining why they see it as important to have patients lie down, or anesthesia explaining the actual effects of each type of sedation analgesic vs. amnesiac, and then we do the same. This way it is a dialogue of teaching and everyone has an equal voice. —M. Kelly Ideally, a facility will provide sufficient child life specialists to meet all these needs, for all children, throughout all the days of the year, but for a one-person child life program, that is not possible. Training medical staff in some of the simpler child life techniques is well worth the time and effort. In addition to raising developmental skill sets in facility staff, these types of training also raise visibility of the child life program and help demonstrate a more diversified and wide-reaching value for the program. Make the Most of Volunteers. Most medical facilities have at least a small volunteer program, while others have a large and robust volunteer workforce. By recruiting, training, and managing child life volunteers, solo child life specialists can greatly enhance the reach and impact of their programs. Build a strong volunteer program. If you have volunteers that you can depend on/trust to provide developmental play in a playroom or at a bedside, you can then take the time to walk away from the floor, eat lunch, do administrative work. —I. Man

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Volunteers can provide normalization play in the playroom, waiting room, and at the bedside. This service can be especially helpful to provide hours of play for children restricted to their room due to isolation precautions, and unable to visit the playroom for group or solo play. Likewise, for children who must remain at a medical facility for days on end with little to no family support, having well-trained volunteers to provide daily psychosocial support and normalizing play can transform their experience. By having these time-intensive needs for normalization play and developmental support play met by well-trained volunteers, the solo child life specialist salvages much needed time to focus on therapeutic play as a tool for teaching, building coping skills, easing anxiety, and providing procedural preparation and support. Ivana Man at Harlem Hospital (Harlem, NY) relies heavily on a robust volunteer team to support her patients’ normalization needs (personal communication, January 20, 2016). By providing volunteers with child life training in meeting developmental and normalization play needs, the volunteers become an extension of the child life program. This can elevate the perceived value of the program in the eyes of medical staff and administrators. Lastly, volunteers can help with some of the day-to-day material needs of the child life program, such as assembling craft kits and cleaning toys. Share the Stuff. All child life specialists wish to be valued by members of the healthcare team for their skills, not their stuff. While some tools, such as the child life specialist’s procedural support kit, belong only in the hands of the child life specialist, many of the tools—the toys—need not be kept under lock and key. Many child life specialists will position themselves as the gateway to the “fun stuff” as a way of leveraging access to patients and a role on the healthcare team. “Your patient is bored? Wants to play? Call child life!” The downside to this strategy, however, is numerous consults and pages for simple toy runs. For the solo child life specialist especially, this can become a problematic and time-consuming reality. When covering multiple areas, taking a trip from one department to another to retrieve craft supplies can feel frustrating and unproductive. By sharing access to the toys, games, and crafts with the medical team and volunteers, the child life specialist will free up time to focus on clinical needs requiring child life expertise. All members of the healthcare team (including volunteers) should have access to the storage areas where toys, crafts, games, and prizes are kept, so that they may access them for patients as needed. Ideally, each clinical area that cares for children should have a library of reusable, washable toys that patients and siblings can play with. In preparation for full staff access to the toys, the child life specialist can develop a policy on toy cleaning, check out, and storage. Staff members who access the toys should also participate in the tracking, cleaning, and care of these valuable resources. Craft projects can be

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prepared ahead of time in bags with the materials, tools, and instructions needed to complete the project. Considerable staff time and effort is spared by prior assembly of craft kits, with the secondary benefit of cost conscious utilization of craft materials. Pre-made craft kits need not be confined to structured, directed, projects. Kits with a variety of craft supplies with no structured directions make wonderful choices to promote loose-parts and child-led craft play, with all the associated benefits. Prize boxes, for those clinical areas that use them, can function the same way. While the solo child life specialist may carry the responsibility of acquiring the small toys that staff can use as rewards for patients following procedures, a volunteer (or other team member) can more efficiently accomplish the daily task of restocking and organizing that prize box or cupboard. Any daily task that a team member, paid or volunteer, can complete without the specialized training of a child life specialist can and should be delegated whenever possible, freeing up child life specialists to concentrate on the work that they are best trained to perform. For more specialized items, such as procedural support tools like lookand-find books, glitter wands, bubble machines, and spinning lights, the solo child life specialist may consider making these tools available to a select group of medical staff following training in child life techniques. Again, remember that most solo child life specialists will never have a staffing pattern allowing them to participate in every procedure, with every pediatric patient. Providing the training and tools to medical staff that must perform pediatric procedures without the support of the child life specialist can increase the reach and impact of the child life program. The solo child life specialist can use access to a kit of procedural support tools to leverage staff attendance at training in psychosocial supports for pediatric procedures (Schoell, 2016). Make Over Some Spaces. Hopefully, any facility serving children will include dedicated play spaces, whether in the form of playrooms, outdoor play spaces, or designated waiting rooms. These areas, when well designed and implemented, provide ample opportunities for normalization play for pediatric patients and their siblings. For facilities that lack dedicated play spaces, or have play spaces lacking in high quality design and materials, the solo child life specialist can extend one’s reach and impact by investing the time and funds to make over these spaces. When excellent play spaces provide the normalization play needed for patients and families, the child life specialist can focus time and energy in the procedure room, on therapeutic activities, and medical education play. Creating, or revamping, a treatment room can likewise extend the reach and impact of the child life program. Treatment rooms provide dedicated

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spaces for painful and invasive procedures for pediatric patients, and help young children differentiate between “safe spaces,” such as their assigned room or playroom, and “procedural spaces,” where they may experience needles or other unpleasant medical necessities. Facilities that have treatment rooms consistently utilized by medical staff may appreciate an upgrade to the treatment room’s décor and procedural support tools. For facilities that have the space but tend not to use it, a makeover of the treatment room can make the space more inviting for staff and patients alike. Combined with training on the purpose and value of the treatment room, in conjunction with a well-written policy that is supported by unit leadership, the treatment room makeover can help drive a shift in unit culture to make its use standard practice. For those facilities without a treatment room, the process must begin with demonstrating the value of the space and practice. This may be a quick and easy sell to leadership, or a strenuous uphill battle. Common barriers to the building of a treatment room include dedicating highly valuable real estate on the medical unit, funds to build and decorate the space, and the time needed to train staff on the importance of utilizing the treatment room for painful and invasive procedures. While makeovers for playrooms, waiting rooms, and treatment rooms can be costly (both in terms of funding and the solo child life specialist’s limited time and energy) the payoff can be well worth it. Grant opportunities to fund such makeovers may be available through a variety of local, regional, and national organizations. Solo child life specialists can partner with their facility’s grant writer or development office, or may pursue grants themselves if their facility permits it. As with any project that will require significant effort, planning, or funds, the child life specialist should always partner with unit leadership before beginning, to ensure that such a project aligns with unit goals and plans.

Advocacy Child life specialists frequently find themselves in the role of advocate. For the solo child life specialist, the need for advocacy in clinical work, as well as the administrative realm, comes up often and regularly. An individual working in a one-person program needs to be willing to stand and advocate for children. Speaking up creates change. When I see something that can improve I make sure I let department heads know. Being ready with research always helps! —B. Thayn

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This need exists on multiple levels, such as advocating for a preschooler’s use of a comfort position, a unit policy to ban medical treatments from taking place in the playroom, or a facility-wide expansion of the child life team to increase clinical coverage. In addition to advocating for the psychosocial well-being of pediatric patients and their families, solo child life specialists must also advocate for themselves and their programs. Advocacy work can become emotionally draining for a solo child life specialist. While professional boundaries can provide a barrier to compassion fatigue that leads to burnout, there are fewer protections to the psychosocial wear and tear the child life specialist endures when advocating for change of practice with the healthcare team. Like-minded team members may meet requests for change with enthusiasm, while others respond with outright hostility. I have had to endure so many comments (both to my face and behind my back) about what I am and what I do. . . You’ve got to learn to let them roll off your back and move on. . . . Because letting the comments get to you and reacting to them, is going to burn your bridges, not strengthen them. —K. Pulford A thick skin and a commitment to persevere serve as protective barriers for the child life specialist while advocating in a less than receptive setting. Especially in facilities encountering child life concepts for the first time, the solo child life specialist must often begin advocacy work with the foundation of recognition of the child life specialist as a valid member of the healthcare team. From this foundation, the solo child life specialist can then advocate for the psychosocial needs of children and families.

Attend to Financial and Administrative Details One of the more complicated and under-anticipated realities of a oneperson program is the need for the solo child life specialist to serve as both clinical practitioner and administrative leader. Even in a program of one, administrative duties must be addressed on a regular basis. Depending on the supervisory and reporting structure in place, solo child life specialists may find themselves virtually supervising themselves and their program, or they may work closely with another to manage administrative duties and make program decisions. Most will fall somewhere in between these two extremes. Regardless of which administrative duties are managed by the solo child life specialist, and which by the supervisor, it serves the child life specialist well to remain engaged and cognizant of policies, budgeting, grants, materials management, metrics, and productivity.

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Policies and Other Official Documents. Well-written official documents must be strongly grounded in research and theory and supported by administrators and leaders. These documents can support cultural changes within a facility, provide support and protection alike for new practices, and carry forward the adoption of the advancement of evidenced-based practice. With the introduction of a child life program comes the need for the creation, approval, and roll out of many new policies. Some may affect only the child life specialist, such as a policy on therapeutic play activities involving needles, while others will impact the practice of all members of the healthcare team, such as a policy on the utilization of comfort positions. The solo child life specialist will create some policies almost entirely alone, such as playroom programing policies, while others may require collaboration with many professions throughout the facility, such as a toy cleaning policy that requires collaboration with the infection prevention team, environmental services, volunteer services, and nursing. The solo child life specialist must establish a breadth and depth of understanding regarding the institution’s approach to official documents. These may include any combination of policies, practices, and guidelines, each with their own distinct process for creation, approval, and use. Once familiar with the facility’s structure and use of official documents, the child life specialist can then gather what policies and other documents already exist and review how they stack up to the developing child life program. Mindful of the need to build collaboration and relationships within the healthcare team, the solo child life specialist should move gently and with discretion before attempting to alter or eliminate existing policy. To begin, the child life specialist can reach out to those that wrote (or own) the current policy and request a meeting to discuss how the new child life program can support the policy’s initiative or advance it with further research, insight, or practices. Before proceeding with changes or the creation of new documents, the solo child life specialist must learn the facility’s process for creation, alteration, and updating of policy documents. The child life specialist’s supervisor can often provide guidance in this process, or connect the child life specialist with a mentor to help instruct them in these initial efforts. When creating policy, procedures, and guidelines, the child life specialist must remain mindful of intellectual property laws. It is unethical, at best, and potentially illegal, at worst, to share the documents that one creates as an employee of a hospital. Intellectual property laws are there for a reason, and even if another facility has the document that you need, they may not be permitted to share it. —E. Murray

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Typically, documents created by employees become the intellectual property of the facility, and may not be shared with outside individuals without express permission from leadership. This restriction goes both ways. While it might save the solo child life specialist significant time and labor to receive copies of policies and procedures from child life colleagues at other facilities to use as a foundation for creation of their own policy, this may not always be feasible. Some child life professional organizations, such as the Association for Child Life Professions, have sample policies available to members for use in the creation of policy and procedure documents of their own. Budgeting and Grants. Without proper fiscal support for both initial startup funding and ongoing operational costs, no child life program can function smoothly or effectively. Funding must cover salary and benefits at the very least, and ideally will include funds for material needs as well. . . . Continually advocating for the need for hospital funds to provide basic child life services is key. It helps the hospital to have some ‘skin in the game’ as well as levels the playing field between CL and other disciplines. I have had success comparing our supply needs to areas such as physical/occupational therapy. —B. Broxterman Each facility will have unique processes for the creation and management of budget. Many large facilities, such as community hospitals, utilize compartmentalized budgets (such as cost centers) to organize financial needs by unit. Smaller facilities, such as specialty clinics or private practices, may have less cataloged methods of managing budgetary needs. In some cases, the facility may use budget management software to keep all cost centers and programs consistent in reporting, managing, and submitting requests related to budgets. Whether the child life program receives its own cost center, or more commonly gets rolled in to a previously existing one, the child life specialist needs to quickly develop a strong understanding of the facility’s process for creating and managing budgets. The person in the role of a one-person program must have an understanding of hospital operations and basic accounting abilities (i.e., keeping up a budget, balancing the budget, spreadsheet management, etc.), as well as a solid grounding in writing grants. —E. Murray Some solo child life specialists will take the active role in purchasing materials and managing the program budget, while others will use this knowledge

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to inform collaboration and interaction with one’s supervisor or other team members who manage the program’s budget. Regardless of what system the facility may use, the child life specialist must keep immaculate, detailed, and current records while practicing complete transparency in how funds are utilized. Whether reporting to administration and leadership on the use of facility funds, or reporting to grant givers and donors on the use of philanthropic funds, the child life specialist must be able to account for every penny spent, and speak to the value of the materials or services purchased with the money. Materials Management. When it comes to meeting the material needs of the child life program, oftentimes “in-kind” donations (items such as toys, as opposed to cash donations) from community members and organizations make up the bulk of the toys and craft supplies that the program has to offer pediatric patients and their families. For most programs the bulk of in-kind donations arrive within a few weeks’ span, during the winter holiday season. The child life specialist must then arrange to sort, store, and distribute these materials in such a way as to ensure sufficient materials remain available to pediatric patients throughout the year. This requires deliberate planning and sufficient storage space. Through careful development and management of relationships with in-kind donors, solo child life specialists can increase the donor base and thus increase the volume of in-kind donations. By tracking the quantity and quality of in-kind donations, and the increase in these donations with the stewardship provided by child life, the child life specialist can help to demonstrate added material value brought to the facility by the child life program. There will inevitably be material needs that cannot be met through inkind donations. To meet these needs, the child life specialist must be able to purchase specific items to order. The process for this will vary from one facility to another. The specialist’s supervisor can help to provide training and guidance in a facility’s specific process. Regardless of what process the facility may use, knowledge of hospital operations can be extremely useful in helping to empower the solo child life specialist in managing this process. As mentioned previously, including a materials budget in the initial proposal for the child life program can help to pave the way and ensure that a materials budget is available for use by the child life specialist. Clear communication and anticipatory guidance provided for supervisors, leadership, and administrators can help prevent confusion and miscommunication regarding the difference between in-kind donations and specific needed materials. . . . I may have created a monster. Because I have not gotten the funding I have needed to get this program off the ground, I have had to be

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creative in my acquisition of goods: toys, distraction items, teaching materials, etc. I have worked my tail off and gotten some large donations and a small portion of the things I need. My management at my hospital sees that I am able to get my own things, so why should they spend any of their budget on a child life budget when I’m capable of pounding the pavement to get the things I need. They don’t see that I don’t have specific tools that I need, they just see that I have a lot of “stuff.” —K. Pulford Metrics and Productivity. Nearly all professions within the healthcare team must demonstrate their team members’ productivity and value with a quantitative method. For many professions, productivity measurements are tied to insurance reimbursements and often take the form of the number of patients seen. For child life specialists however, services are not currently tied to insurance. For some one-person programs, productivity may be measured based on the percentage of work hours spent in clinical care, while other programs measure the number of patients seen, services provided, or hours of clinical coverage by unit. The Association of Child Life Professionals (ACLP) introduced a new standardized productivity metric in early 2017. The ACLP hopes this Capacity for Patient and Family Impact (CPFI), and the accompanying program database, will grow to become a standard in the field, as well as a rich resource for benchmarking. Whether instructed to do so by a supervisor or not, the solo child life specialist would do well to measure productivity and other key metrics on a regular basis. This metric data can then be used to not only report on productivity, but also on the scope and impact of the child life program throughout the facility. Accurate metric data also enriches future program and grant proposals, demonstrates staffing needs, and reports on the use of facility and philanthropic funding. Metrics can be used to highlight the scope and impact of the child life program and celebrate its milestones (Schoell, 2013). Some electronic medical records provide tracking tools for measuring basic metrics including the number of patients seen, services provided, and staff productivity. However, most electronic medical record systems require setup from a technical representative to initiate and customize this function. For the solo child life specialist, a team of one, the facility may not see sufficient value in the cost required to do this. When electronic tracking is inaccessible or unavailable, the solo child life specialist can track these metrics manually, and record them on a spreadsheet for future reference. Though tracking metrics takes a few extra minutes each day, having the data available is well worth the effort and demonstrates that assessment and professionalism are an important part of the program.

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Gaining Buy-In Patient- and family-centered care, at its very best, requires a collaborative effort on the part of all members of the healthcare team. The introduction of a child life specialist onto the healthcare team requires patience, perseverance, and considerable buy-in. While the successful integration of child life will depend in part on the attitudes, beliefs, and openness of the medical team, the child life specialist can consciously and deliberately manage many aspects of this process. Oftentimes during the initial stages of introducing child life into a facility, medical staff first learns to value child life through the material resources they provide for patients and families. This may include new toys for the playroom, activities for a waiting room, or the tools and toys the child life specialist brings to the procedure room. With time, patience, and consistent reinforcement, the child life specialist can help medical staff to value child life for the skills, and not the stuff, they bring. Meanwhile the ability to provide highly desired toys and tools for pediatric patients could gain some initial goodwill and buy-in from the medical team. Seeing Is Understanding. Explaining the concept of child life interventions to medical staff that have never seen a child life specialist in action can be complicated at best, and near impossible at worst. For many members of the medical team, seeing child life in action serves as the most effective and lasting method for comprehending the value and purpose behind the interventions provided by child life specialists. For many child life specialists blazing a trail in a new facility, establishing the value of child life interventions begins with a single clinical moment. When medical professionals share similar education, training, and experience, they often view new initiatives and other changes from similar perspectives. Once the solo child life specialist gains the opportunity to demonstrate the value of child life interventions with one or two medical team members, those team members then, in turn, can serve as ambassadors for child life. The child life specialist can watch as nurses spread the word among their peers about the value of the services provided by the child life specialist. Additionally, when colleagues use the healthcare facility for their own children, they have an opportunity to see the benefits of child life interventions firsthand from the perspective of a parent. After starting, word quickly spread through the hospital by staff who had brought their children to have surgical procedures done and had first-hand experience seeing what I could do. I have been able to be involved in more areas of the hospital because of this. —B. Thayn

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This can have a great impact on the team member and may increase the understanding of the value of child life services. Playing Nicely with Others. Whether taking over an established practice, or introducing child life services for the very first time, the need to build relationships with members of the healthcare team is foundational to success for the one-person program. Playing nicely in the healthcare sandbox with members of the other professions is not only courteous, but also smart. Especially in programs where child life is being introduced for the first time, medical staff who have worked at the facility for a long time may feel threatened or anxious about the introduction of a new professional, and a new professional role, to the team. Consider, for example, the perspective of a senior pediatric nurse who has worked on the inpatient pediatric unit for the last twenty years. Now the hospital introduces a new role, the child life specialist, to address the psychosocial needs of the pediatric patients. For this nurse to feel threatened or displaced is not entirely unreasonable. After all, she has been caring for pediatric patients without the assistance of a child life specialist for the last two decades. Does this new change mean that unit leadership believes her incapable of meeting her patients’ psychosocial needs? Does this new addition to the team reflect dissatisfaction with her past performance? Will this new person usurp the “fun” parts of her job, like handing out toys and comforting frightened children? The solo child life specialist can alleviate these natural concerns by fostering collaborative and nurturing relationships with pediatric medical staff. Rather than offer early criticisms for practices that undermine coping in the pediatric patient, the new child life specialist can focus praise on those aspects of practice that reinforce positive development and coping, and save suggestions for changes in practice for farther down the road when more rapport and relationship has been built between the disciplines. Likewise, the new child life specialist need not monopolize the fun tasks that medical staff previously enjoyed. Rather than bring a toy to a child as a reward following a difficult medical procedure, the new child life specialist can select a toy and bring it to the nurse to deliver to the patient. This allows the nurse to participate in that joyful moment with a patient and saves the nurse the time of going to the toy cupboard and selecting an appropriate prize. This simple practice does nothing to undermine the work of the new child life specialist, while it can earn considerable rapport with the nurse. Likewise, not all touch points within the facility where a child life specialist can dive in are necessarily areas where they should do so. For example, the day surgery unit may have a very well-constructed and successful pre-op tour program run by the nurses, or the phlebotomy center may have a team of draw specialists who have acquired additional training for supporting pediatric patients. While the child

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life specialist would likely have meaningful and helpful contributions to make in these areas, it is worth considering the relative benefit of giving credit where credit is due by applauding the wonderful work already in place and focusing efforts on other areas within the facility that may require more urgent support. Without fail, the child life specialist will eventually confront a territory battle within the healthcare facility. Rather than engage in a struggle for perceived supremacy, the child life specialist can sidestep these conflicts that consume time and energy in the most unproductive way possible. Just as child life specialists look beyond the outwardly exasperating behavior of a patient to the coping crisis underneath that informs the patient’s behavior, the child life specialist must look to the underlying reasons behind any aggressive territory battles. While easier said than done, cultivating the practice of recognizing underlying emotions of anxiety, competition, and insecurity can help the child life specialist to avoid a battle. Without an engaged rival to fight, conflicts may flare then quickly fade. For those times when this is not the case, the solo child life specialist may find insight and support by turning to a supervisor or ally on the team. An experienced supervisor may offer unique insight into the culture of the unit and strategies for interacting successfully with particularly challenging individuals. Especially for child life specialists transitioning from an internship or job at a larger facility specializing in pediatric care to a smaller facility, the solo child life specialist must prepare for some differences in facility culture and practice. What may serve as a daily practice and standard of care in a large pediatric facility, such as use of anesthetic creams before needle procedures, may not be the case in a facility with a smaller, more episodic pediatric census, and more limited resources for the training and advancement of pediatric staff. In such a setting, the new child life specialist must avoid the temptation to launch immediately into a plethora of suggestions for changes in policy and practice, and balance the need for change with the importance of building trust and respect with new colleagues. Beginning such conversations with a desire to understand can help strengthen new rapport. Rather than starting with a suggestion to change needle policy, the child life specialist can begin by asking the team how the current policy regarding needles was developed, and what reasoning lead to the choice not to use a topical anesthetic. Being Part of the Team. In larger facilities, with more sizeable child life staffing, “my team” typically refers to the other child life specialists that serve in various areas throughout the facility. The solo child life specialist must adopt a more expansive concept of the term, however, and carve out a place for themselves on other teams within their new facility. This may mean forging relationships with social workers, nurses, providers, or others who pro-

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vide specialty services. The best fit, and a welcoming team, will vary from facility to facility. It may even vary from one unit to another within the same facility. No matter where, how, or among whom solo child life specialists find their teams, they must nurture that relationship. The child life specialist may accomplish this through participation in staff meetings, unit councils, team service projects, or social events. For those solo child life specialists serving in multiple clinical areas, they may develop membership in more than one group, finding and building relationships in multiple areas. This belonging and membership will help to facilitate integration on the team and ease the child life specialist’s access to clinical care opportunities. Membership and belonging on a team also provide much-needed psychosocial support to the solo child life specialist in daily practice. For many solo child life specialists, the first step in building relationships and cultivating memberships begins with a willingness to prove themselves useful to their new teammates. While passing meal trays, changing diapers, and answering call bells may fall outside the job description of the child life specialist, this does not preclude the solo child life specialist from doing these activities. Lending a helping hand to others on the unit, especially during times of high census or low staffing, communicates through their actions the child life specialist’s determination to be part of the team and meet the needs of patients and families. Sometimes it’s okay to do other things outside of your role/responsibilities; working in a one-person program is all about team work within your multidisciplinary team. . . . I have answered many a phone ringing at the desk, or stopped to help a nurse or an aide complete a task. —K. Pulford Much like taking a moment to answer a call bell, the child life specialist can earn the goodwill of colleagues by showing a team-minded willingness to help out with small projects and requests that go beyond the typical work of a child life specialist. For example, the nurse manager of a unit may want help with creating a bulletin board with staff photos and names. This does not fall under the description of the child life specialist, but the child life specialist may have access to supplies and tools in the craft cupboard that would make quick work of this project. A modest amount of time spent on such assistive projects can earn considerable appreciation and rapport with key leaders. Unlike delivering a popsicle or warm blanket to a patient, however, these occasional projects and extra requests can quickly add up to a meaningful drain on the solo child life specialist’s time, and must be approached with a mindful common sense and, when needed, limit setting.

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The Value of Flexibility. Above all else, solo child life work requires a robust commitment to flexibility. Child life programs must evolve with the changing needs of the facility, the census, and the needs of the medical staff. From early changes during the startup phase of the program, to new variations farther down the road, the one-person program must remain flexible to meet the ever-changing needs of its environment or risk becoming obsolete. Meeting regularly with unit leadership can help the solo child life specialist gain insight into new priorities for the clinical unit, as well as updates for facility missions and goals. Child life specialists may also find it useful to survey unit staff such as bedside nurses, patient care technicians, and medical providers, from time to time to assess the child life program’s ability to meet the current needs of frontline staff. Oftentimes, the nurses and providers with whom the child life specialist works most closely have valuable ideas for change, such as adjustment of coverage hours, new services, or needed resources, but may feel hesitant to voice suggestions without invitation.

Preventing Burnout The risk of burnout is a constant companion of all practitioners in helping professions. Burnout occurs when compassion fatigue goes unattended. It can be exacerbated when professional boundaries crumble, professionals work outside their scope of practice, or sacrifice their work-life balance. Child life specialists running one-person programs may find the risks significantly higher due to increased opportunities for compassion fatigue, lack of peer and mentor support when facing challenges to professional boundaries, the unfamiliarity of other members of the healthcare team with the role and scope of practice of the child life specialist, lack of peer contact, and a wider array of demands. However, this does not leave the solo child life specialist doomed to a road of increasing compassion fatigue and eventual burnout. Far from it! With a mindful approach, strong boundaries, skilled limit setting, and a commitment to work-life balance, child life specialists can thrive at the helm of a one-person program. Compassion Fatigue. Compassion fatigue consists of the mental and emotional exhaustion that comes from the exercise of empathy and sympathy for patients and families. Members of helping professions, such as social workers, therapists, and school counselors may experience compassion fatigue. Members of the healthcare team, too, such as nurses, doctors, and respiratory therapists can experience compassion fatigue, especially in areas of high medical acuity, like intensive care units, emergency centers, and palliative care services. Child life professionals carry the risk of experiencing compassion fatigue from both fronts, through their role on the healthcare team and in their role as a helping professional.

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Medical professionals on the healthcare team treat patients’ pain proactively, knowing that once a child’s pain reaches higher levels, the team must then work harder and provide more intensive interventions to treat the pain. On the standard pain scale of 0–10, with 1–4 being “mild pain,” 5–7 being “moderate pain,” and 8–10 being “severe pain,” decreasing a child’s pain score from a nine to a six typically requires much more effort and intervention than to decrease a pain score of a four to a one. As child life specialists, we know that the psychosocial aspects of the pain experience contribute to this effect. Most especially, as the pain of children increases, their ability to utilize their coping skills decreases, leaving them to struggle more with their coping. This same phenomenon applies to the child life specialist facing compassion fatigue. When we address occasional moments of compassion fatigue, and utilize our skills in recognizing and treating the fatigue, we keep this natural phenomenon from growing and compounding. Unchecked, compassion fatigue experiences can build up in ever increasing layers of harm, until we find ourselves much like the child with a pain score of nine— overwhelmed, exhausted, and hurting too much to effectively use our coping skills. By addressing compassion fatigue proactively, solo child life specialists can manage periodic episodes of emotionally draining experiences without allowing them to compound into more lasting patterns that lead to burnout. Typically, for most helping professions, talking through emotionally charged experiences with professional peers (i.e., the death of a patient, frustrations with a particular medical provider, or a challenging clinical case that leaves the clinician feeling ineffective) provide most of the needed support. For child life specialists working within the context of a larger child life team, these peers come readily available, complete with similar training, background and experiences to fuel their empathy and support. For the solo child life specialist, equivalent support may be found among other helping professionals within the same facility, such as social workers, nurses, or educators. Ask for help, reach out to colleagues from both small programs and large programs, get to know your staff and put yourself out there. —E. Welch Local, regional, national, and international child life specialist communities and online networks, as well as a support network of friends and family, can provide additional help. As always, the child life specialist must remain acutely aware of privacy laws when talking with others. In addition to addressing acute events that can lead to compassion fatigue, connecting regularly with other child life specialists both locally and

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farther afield can help to combat more pervasive feelings of loneliness and professional isolation. Participation in local and regional educational events, social events, and service projects with other child life teams builds relationships that benefit the solo child life specialist both professionally and personally. Engagement in online forums with other child life specialists and attending child life conferences also provide valuable connection, education, and support. Connecting with a child life mentor, even remotely, for support and clinical supervision can also help. Likewise, engagement in a variety of self-care practices, from hobbies, to exercise, to vacation, can help to ameliorate the effects of compassion fatigue, and prevent burnout. Professional Boundaries. The first tool in the child life specialist’s toolbox to prevent compassion fatigue is well-constructed and actively fortified professional boundaries. The guidance of professional codes of conduct specific to the child life profession, combined with the clinical supervision of an experienced child life manager and peers, most often provides the support that newer child life specialists need to succeed in developing an understanding of professional boundaries (Child Life Council, 2002). But for a solo child life specialist, with neither immediately available child life peers nor managers familiar with child life practice, the development and maintenance of professional boundaries can prove somewhat trickier. One of the foundational components for strong professional boundaries is the understanding and acceptance of the reality that no child life specialist can be present for every patient, every time they are needed. This is true for child life specialists across all facilities, practices, and program sizes. It simply occurs more often in one-person programs because of the limited staffing. Solo child life specialists must assess and prioritize as best they can, accept the reality of a limited clinical reach, and detach from any associated guilt of “not being there” or “not doing enough.” Whether it is a particular child that lingers in the mind, an untackled project that wants for doing, or an entire clinical area that would benefit from child life services that must go without, solo child life specialists must place a strong barrier between the unmet need and their own heart and sense of self-worth. An unmet clinical need, a playroom project not yet begun, or a declined in-service opportunity do not indicate a lack in the child life specialist’s skills, engagement, or commitment, but may demonstrate a need for increased staffing. The ability to tell the difference will strengthen the child life specialist’s professional boundaries and empower his or her practice. Scope of Practice. When working with healthcare professionals with little or no experience with child life services, solo child life specialists may often find themselves in the role of educator for the rest of the healthcare team, explaining the role of the child life specialist, the services provided, as well

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as the reach and limitations of the child life scope of practice. Many child life trailblazers find themselves challenged with the need to teach, advocate, and repeat these efforts as they function on the healthcare team. While many child life specialists go into solo practice prepared to advocate and educate about all the wonderful interventions they can provide to assist pediatric patients and families, few realize just how much time and effort they will need to spend covering the limits of their scope of practice. Medical staff unfamiliar with child life services may mentally group child life along with social work, volunteers, or mental health providers. I once had a pediatrician ask me to provide play therapy for one of his patients. I tried to explain the scope of practice limitations, and what services I could, and could not, provide. He really seemed to struggle, telling me “play therapy . . . therapeutic play . . . it sounds like the same thing to me!” I pointed out that “intern” and “internist” also sound a lot alike. He laughed and agreed to accept what I was telling him. —T. Schoell In looking for solutions for their patients and families, well-meaning healthcare providers may turn to the child life specialist with requests for services outside the child life scope of practice, such as assisting a family with an application for financial support, babysitting an adult patient’s children, or evaluating a potentially suicidal patient for lethality risk. Not all requests will fall clearly within or out of the scope of child life practice, though some will. Consider, for example, a request to work with a school-aged child refusing to eat. Providing therapeutic play to facilitate emotional expression around the topics of food, eating, and cooking fall well within the child life scope of practice. However, identifying an underlying mental health diagnosis, oral aversion, or sensory processing issue that may contribute to the refusal to eat, require services that fall outside the child life scope of practice. When receiving a request to “work with” such a patient, the child life specialist much first recognize where the professional boundary lies, then articulate it to the healthcare team member, and do so in a way that nurtures the relationship between the medical provider and the child life specialist. While most child life specialists face similar challenges from time to time, regardless of setting or program size, the solo child life specialist will face it more often in a facility where medical professionals have limited experience with child life services. The burden of carrying this education and advocacy work, without child life peers to share it with, can prove challenging. Work-Life Balance. The final piece in the puzzle to prevent burnout is the vigorous commitment to maintaining work-life balance. The solo child life

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specialist must recognize and embrace the reality that work-life balance needs to be owned by the child life specialist, with complete autonomy. The misconception that work-life balance is one of the benefits provided by employers, to employees, robs the practitioner of incredible power. Child life specialists often find themselves advocating for their pediatric patients, and their developmental need to have some autonomy, agency, and control in their medical experience. The same is true of child life specialists in their work experience. And nowhere is this truer than in the daily life of a solo child life specialist. With no other specialist to “tag out” to, solo child life specialists may find their “work” overtaking their balance with “life.” This can stem from a wide variety of underlying reasons, most often a lack of strong professional boundaries, or a failure to self-advocate. Regardless of underlying cause, though, the lack of balance can only proceed with the implicit, or subconscious, consent of the child life specialist. This vital balance between focusing energy on work responsibilities and personal time contributes deeply and pervasively to the overall sustainability of the child life specialist’s practice, and thus the child life program itself. As with any other key component of the program such as clinical work and administrative duties, the solo child life specialist must take an active and primary role in maintaining work-life balance. One of the foundational steps in taking ownership of work-life balance lies in the clear distinction between work time and personal time. Most workdays, whether salaried or hourly, incorporate a meal break time. While these lunch breaks may occasionally serve as work-time, such as a lunch meeting, most days the meal break should serve as a sacrosanct silo of personal time. Whether 20 minutes, 90 minutes, or anything in between, if this break time is “off the clock,” then the child life specialist is “off the clock.” Whether the solo child life specialist spends this time quietly in the office reading a book, or meets up with friends in the cafeteria, that little island of personal time amidst a day of work time can provide a renewal of energy and perspective. To give into the temptation to check work email, return phone calls, or work on documents for a committee, violates the boundary between work time and personal time. This leeching of work into personal time is as destructive to work-life balance as the more commonly frowned upon counterpart of personal issues creeping into work time. While employers will often have practices and policies in place to address the use of work time for personal activities, it often falls to the individual employee to guard against the use of personal time for work activities. Establishing a clear boundary, in both directions, can help to maintain work-life balance and prevent burnout. Beyond lunch breaks, on a larger scale the total number of hours worked in a week can also affect work-life balance. For the solo child life specialist

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working in an hourly position who clocks in and out at the beginning and end of each shift, the facility’s payroll system will do much of the work of calculating total hours worked each week. Likewise, leadership will support the child life specialist to leave on time each week, to avoid the costly need to pay overtime rates for weeks exceeding forty hours. For salaried positions, however, the rules are often a bit looser, and employers may carry the expectation that salaried employees continue to work “until the job is done,” regardless of how this meets, and exceeds, forty hours a week. However, for a solo child life specialist in most medical settings, there is no clear indication of what “done” would look like, as clinical needs exist through the day and night shifts, every day of the year, and no other child life specialist exists to cover those needs. Along with claiming ownership to control their own work-life balance and clearly delineating work time and personal time, solo child life specialists can lay a strong foundation for balance by proactively limiting the number and scope of projects they take on in addition to their clinical and administrative duties. Whether looking to redesign a playroom, build a treatment room, begin a pain management initiative, restructure a volunteer program, start a family advocacy council, or any other endless number of worthy projects, the number of large scale endeavors the child life specialist could take on to improve the care of pediatric patients will vastly outnumber the time and energy that an individual will possess. Before taking on any new project, child life specialists must first consider whether they have space on their project roster for the new initiative and its relative merit in comparison to the other projects demanding attention. It is also worth noting that not all projects the child life specialist may pursue will find equal priority with other leaders and administrators in the facility. It can feel agonizingly frustrating to pour energy and effort into a project, only to find little support for it from other key stakeholders. For this reason, the solo child life specialist would do best to meet with other facility leaders to assess need, want, and support before beginning any new undertaking. Child Life Month, celebrated in March, can create one of the easiest traps of overextension for the solo child life specialist. Most often, child life specialists gain their first exposure to Child Life Month celebrations and activities in the process of completing volunteer hours, or during their child life internship. Especially on larger child life teams, child life specialists commonly take on a wide variety of projects to celebrate the month, including special activities with patients, in-services and trainings for medical staff to promote the role of child life in the hospital, and celebrations among the child life staff. For a solo child life specialist to attempt to recreate all the many potential fun and labor-intensive activities would require extensive

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time and energy. Despite good intentions, the effort incurred is out of proportion to the results achieved, and can lead to a dramatic imbalance between work time and personal time. No matter what activities and celebrations the solo child life specialist elects to engage in, it is best to keep it in proportion and scale to the reality of a one-person program. GROWING YOUR OWN PROGRAM For some one-person programs, a single staff member may be sufficient to meet the full scope of the clinical, educational, and administrative needs for that facility. However, the majority of one-person programs will require additional child life staffing to meet the full range of needs. This inevitably leads to an aspirational goal of growing the program to include a second, third, or even fourth child life specialist on the team. In some ways, increasing staffing to include a second FTE can be more challenging than getting approval for the initial position. During the initial proposal to launch a child life program, the solo child life specialist has only to prove the value of child life services as a profession, and the need for such services within the facility. Now, to add a second position the solo child life specialist must again demonstrate the value of child life services, prove a need for such services within the facility, and add the additional step of demonstrating that one child life specialist is insufficient to meet program and clinical needs. The first time I presented a proposal to add additional child life staff, I showed a graph of how many kids I see on the inpatient unit and in the emergency department. Everyone at the presentation seemed impressed by how many patients I was seeing . . . until I expanded the graph to show the full census. Turns out, my huge patient load was only 7% of the kids in the ED. That, more than anything, really drove home the need for more staffing. —T. Schoell Before beginning the work of proposing the addition of new staff, the solo child life specialist should ensure that all necessary steps to solidify the current program have been completed. For programs with philanthropic support for salary, addressing long-term goals should be a first step. Unless the child life program enjoys the rare bounty of a bottomless pool of philanthropic funding, the solo child life specialist should complete the steps to transition salary from philanthropic funding to full hospital budgetary support. Once the hospital routinely carries the salary and benefits for the child

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life specialist’s position in the annual budget allocation, the child life specialist can then direct philanthropic funds towards the launch of a second position. Making the case for a second child life position can be best accomplished through a combination of quantitative and qualitative data, and the inclusion of evidence-based practice and research support. Our surgery FTE [full time position] was initially funded through seed money from donor funding—we made the case for this with statistics and EBP [evidence-based practice]. —L. Ramji By utilizing the metric data measuring the number of patients served and hours of clinical coverage and comparing it with the total census of the unit, the child life specialist can quantitatively demonstrate the scope of unmet needs. The opportunity to collect endorsements from staff will flow naturally in the course of clinical care. As staff members witness the value of child life collaborations in their clinical practice, they can offer their written endorsement—spontaneously, or at the request of the child life specialist—to include in a staffing proposal. Purposeful cultivation of allies and networks through all levels of the facility can help to garner additional staff support. Hard numbers, key case studies and patient care stories, together with staff endorsements, can provide richness and depth to the staffing proposal. While research demonstrates the empirical effectiveness of child life work, the patient, family, and staff testimonials demonstrate the programmatic and mission value, and the metric data demonstrates the need. Like layers of a cake, expertly stacked, the case for additional staffing comes together with an ever-increasing momentum. In addition to increasing staffing within clinical areas currently served by child life, many facilities will have other areas with little to no child life coverage that might benefit from the addition of another child life specialist. The solo child life specialist can utilize consults to new clinical areas as a bridge to build relationships with staff in these new clinical areas, and demonstrate the value of child life services within that clinical setting. By tracking which areas show frequent or increasing quantities of child life consult requests, the child life specialist can demonstrate areas of additional clinical need. For solo child life specialists working with pediatric patients within a larger adultfocused community hospital, consults to provide support to the children of adult patients facing end-of-life or life-limiting conditions may not only provide them with a rich consult service, but also help connect child life services to the hospital’s larger focus on adult patients. Inevitably, balancing the work

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of meeting current clinical needs with a growing consult service can leave the solo child life specialist vulnerable to overreaching and finding oneself spread too thin. I am utilizing all of this data to advocate for growth of a child life team here, and I believe the climate of this facility is a good one for growth. If this was not the case, I am at a point where I would be looking at scaling back in order to focus more specifically on patient care. —B. Broxterman While consults provide a wonderful, tangible experience to medical staff in new areas on the value that child life can bring to their patients, families, and co-workers, these consults can, if left unchecked, consume the daily practice of the solo child life specialist. Careful attention to metrics and trends can empower the solo child life specialist to seize the cusp of these consult patterns, and leverage them into powerful evidence for the expansion of child life staffing. Even with clear demonstration of effectiveness, value, and need, requests for additional staffing may be declined for a wide variety of reasons. Most often, these are financial in nature, such as insufficient funding, or competing facility priorities. Fortunately, the ability to request additional staffing is not a once-in-a-career event, and the solo child life specialist may prevail with a combination of perseverance and good timing. CONCLUSION Be gentle with yourself on this learning curve. —K. Raymond Regardless of how the journey begins or how the details play out, running a one-person child life program can be an exhilarating and exhausting adventure. Rarely will the finished product match the initial vision, or the program look the same from one year to the next. Mistakes will be made along the way, and lessons learned, all of which will add up to increased knowledge, wisdom and skill. While not ideal for every child life specialist, forging a solo practice can bring the child life specialist unique joys, opportunities for growth, and a deep and abiding sense of professional accomplishment like no other.

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REFERENCES Dier, S. (2014). Redefining Professional Boundaries in Child Life Practice. Professional Resources Committee Blog. Retrieved http://community.childlife.org/p /bl/ar/blogaid=507 Child Life Council. (2002). Official documents of the Child Life Council. Bethesda, MD: Author. Child Life Council Resource Library. (2016). Child Life Job Descriptions. Retrieved from http://www.childlife.org/files/CLTKSampleJobDescriptions-childlife specialistLeadership.pdf Child Life Council Resource Library. (2016). Policy Creation Guidelines. Retrieved from https://www.childlife.org/files/CLTK%20Policy%20Creation%20Guide line.pdf Child Life Council Resource Library (2016). PowerPoint Presentations: Child life orientation for new medical team members. Retrieved from https://www.childlife.org /Resource%20Library/ChildLifeToolKit.cfm Kean, S. (2010). Children and young people visiting an adult intensive care unit. Journal of Advanced Nursing, 66, 4, 868–877. doi: 10.1111/j.1365-2648.2009 .05252.x Koller, D. (2008). Child Life Council Evidence-Based Practice Statement, Child Life Assessment: Variables Associated with a Child’s Ability to Cope with Hospitalization. Retrieved from https://www.childlife.org/files/EBPAssessmentStatement-Complete .pdf Schoell, T. (2016). Pediatric Procedures: Making it easier on the kids (and staff!). Retrieved from https://www.childlife.org/Resource%20Library/ClinicalPractice.cfm Schoell, T. (2013). The Magic of Metrics. Professional Resources Committee Blog. Retrieved from http://community.childlife.org/p/bl/ar/blogaid=340 Schoell, T. (2013). The Magic of Metrics Part Two: Story telling for maximum impact. Professional Resources Committee Blog. Retrieved from http://community .childlife.org/p/bl/ar/blogaid=362

Chapter 12 CHILD LIFE INTERVENTIONS IN CRITICAL CARE AND AT THE END OF LIFE LOIS J. P EARSON ntering the critical care environment for the first time is most often an overwhelming experience for families. For some families, placement on a critical care unit may be a planned admission following serious surgery. In other cases, a child’s condition may worsen on a general floor requiring transfer to an intensive care unit (ICU). For still other families, the admission to an ICU may be totally unexpected following the complicated birth of a new baby or the sudden illness or traumatic injury of a child or teen of any age. Regardless of the presenting circumstances, and based on a wide spectrum of coping styles and experiences, the critical care environment places unique stresses on the child and parent, siblings, and extended family. Child life programming plays an important and unique role in helping families cope with this highly technological and stressful environment.

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PARENTAL STRESSORS WITHIN THE ENVIRONMENT Several studies have identified the stressors that parents experience in the ICU setting (Miles, Carter, Riddle, Hennessey, & Eberly, 1989; Carnevale & Gaudreault, 2013; Mattsson, Arman, Castren & Forsner, 2014; Ames, Rennick & Baillargeon, 2011). These include: • Environmental stressors º Sounds of monitors, alarms, equipment º Visual stimulation of equipment, procedures, lighting 392

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º Observation of other patients º Procedures and surgical interventions conducted at bedside Communication stressors º Too much or too little information provided to parents º Few opportunities to ask questions º Inability to interpret staff behaviors Concerns about child’s physical appearance, behavior and emotional coping Alterations or deprivations in parenting role º Visiting policies º Participation in cares º Inability to hold infant or young child Concerns about well-being of other children in family

Looking at the critically ill child as a whole and unique being within the technologically-intense environment of an ICU presents the challenge. Mattsson et al. (2014) describe the concept of caring as being present when “providing expert physical care combined with fulfilling emotional needs and supporting daily parental care for the child in an inviting environment” (p. 336). Child life professionals, as part of the multidisciplinary team, play a significant role in preparing, educating and supporting the family’s ability to cope with the critical care setting. The presence of a dedicated child life specialist in the ICU environment helps to address the psychosocial needs of patients and families, as well as bring a balance to the highly technological medical environment (see Chapter 6, “Patient- and Family-Centered Care”). One of the most stressful changes for parents focuses on their role in the ICU. No longer parents of a well child, they become parents of the critically ill child, and many feel an overwhelming sense of helplessness (Ames et al., 2011). In this study, parents identified three important roles for themselves in the pediatric intensive care unit (PICU): 1. Being present and participating in the child’s care—providing comfort, talking with their child to reassure, and actively engaging in cares. 2. Forming a partnership of trust with the PICU team—sharing their expertise about their child’s cues and signs of discomfort; feeling cared for themselves by being offered comforts at the bedside or respite. 3. Being informed of the child’s progress and treatment plans as the person who knows the child best—knowing their child’s status and understanding the care being provided.

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All of these measures may help parents adapt to the PICU environment and moderate their emotional stress. One mother summed up the experience by saying, “I know a PICU is usually quite sterile but human feelings are not sterile and they really do count” (Latour et al., 201l, p. 320). The physical layout of the ICU adds stress for children and families in that the same open visibility that allows medical staff to be vigilant in monitoring patients also allows families to observe what is happening in nearby beds or other rooms. A study of parental coping in the PICU linked observed trauma, meaning distressing events that parents witness that are not directly related to their child, and the concept of meaning-making (Khanna, Finley, Jatana, Gouffe & Redshaw, 2016). That is, while the impact of observing another patient and family’s traumatic event in the PICU is distressing, Khanna et al. identified the potential for the experience to promote positive meaning making by invoking empathy and support for others in the PICU. When staff were able to provide information and reassurance without violating privacy (a suitable role for child life), parents were able to engage in reflection and personal growth concerning their own situation. In addition, Meert and Eggly (2016) found that parents in the PICU demonstrated increased empathy for other children and families by conceptualizing the experiences others were going through in comparison to their own. This empathy was noted by the present author when playing with a young patient in the PICU playroom. His grandmother burst into the playroom having run all the way from the cafeteria, stating, “I heard the code being called and knew that you would need to leave the playroom and go to that family just as you were with me when my grandson coded!” STRESSORS FOR THE PEDIATRIC PATIENT The physical environment of the ICU often leads to sensory overload for patients of all ages (Baker, 1984; Desai, Ng & Bryant, 2002). Research demonstrates that lighting has a profound effect on infants and children. Disturbances in blood pressure, body temperature, and sleep patterns are caused by a lack of day to night progressions. Similarly, sights and sounds of other patients, personnel, and equipment affect a patient’s senses. High noise levels affect sleep and breathing patterns. Finally, painful or disturbing touch has a negative impact on a child’s ability to cope. While environmental concerns need to be addressed by all caregivers in the critical care units, child life specialists may help to address these needs in developmentally appropriate ways. For the youngest infants, soothing music or tape recordings of a parent’s voice singing or reading may bring comfort

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while helping to block out more disturbing noises of a busy critical care unit. Quilts placed over isolettes reduce the amount of extraneous noise while providing diurnal lighting. For toddlers and preschoolers, videos may also encourage attention to familiar stimuli and distract a young child from observing the sights or hearing the sounds of surrounding patients’ treatments or responses. For the school-aged child or adolescent, videos can help keep attention focused within an individual’s room, while discouraging observation of activities taking place in other parts of the unit. Similarly, headphones may help a child or teen who has trouble resting within the PICU. Board (2005) interviewed school-aged children who were currently patients in the PICU, a different approach from most retrospective studies. She found that only 33% of the children remembered an intrusive medical procedure and most did not have specific recall of equipment such as monitors and ventilators. Three-fourths of the children reported crying or feeling sad, and slightly more also reported that they liked having someone to talk to, either family or staff. Carnavale and Gaudreault (2013) interviewed children and teens aged 3–17 years following hospitalization in the PICU. Children in this study were asked “what was it like?” Their responses were grouped into categories of discomforts they had experienced, which included fears and worries, hurt and pain, invasive interventions, and missing significant people. Their corresponding list of comforts included interaction with parents, visitors and friends, hospital staff, stuffed animals and a favorite blanket, as well as entertainment and play. For the patient who is awake and alert, child life programming is essential to reduce the stress of the ICU environment while promoting a sense of normalcy (Board, 2005). Even in the critical care setting, play is essential to meet the developmental needs of the recovering child and reduce the possibility of psychosocial upset. Play may be active for those children or adolescents whose medical treatment may require ICU monitoring but are still able to engage in developmentally appropriate activities. For the child who is critically ill, or for whom medical treatment and procedures are physically restricting, play may need to be more passive. At times, child life may play “for” a child and focus on themes that provide safe ways to express feelings of frustration or loss of control. Medical play is often a favorite activity of patients whose frequent treatments have become stressful, as the following example illustrates. A toddler had become increasingly resistant to his physical cares and treatments after being in the ICU for many weeks while awaiting a heart transplant. With his mother’s permission, the child life specialist provid-

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ed a doll for him to care for. He easily became engaged in suctioning, bathing and feeding “his baby” while at the same time becoming more cooperative with his own treatments. The doll also became the focus of preparation and role modeling of behaviors for new situations and medical interventions. Just as in a general unit, books, games, movies, and even video games can help to engage the child. Allowing choices encourages control and may help to motivate a child. In addition, child life specialists may use art and craft activities to encourage mastery and facilitate the expression of feelings. Activities may serve the secondary purpose of helping to decorate an ICU room to appear more childlike and hide more distressing aspects of the medical environment (Hart & Rollins, 2011). One ten-year-old boy who had become sick quite suddenly and was now ventilator dependent, refused to communicate for several weeks, despite attempts by staff to encourage various communication techniques. When the child life intern suggested decorating his room for Halloween, this patient suddenly became interactive and engaging. With each spider, pumpkin, and friendly ghost he made of paper and paint, he become more interactive. Soon he was communicating by writing and using a computer, two techniques he had refused before the art interventions began. As mentioned in the above example, the ability to communicate may present a significant challenge for patients in the ICU. Some patients may be alert but unable to verbalize due to the paralyzing effects of required drugs. Other patients may be fully awake but prevented from talking because of a new tracheostomy or dependence on a ventilator. Still other patients may simply be too sick to communicate or too frightened to attempt to respond. When alternative communication techniques are necessary, child life specialists may be active participants in the healthcare team’s plans for a particular patient. Mechanical speaking aids, communication boards, computer programs, writing assists, and hand and eye signals may be appropriate to meet specific needs. Yet it is often the creative work of the child life specialist that helps motivate the child to learn to use these devices and techniques through developmentally appropriate play or preparation. Collaboration with speech, physical and occupational therapists, and nursing may help to determine what methods would be most effective. A child may be more willing to use a specific speech tool or assistive device in the course of normal play activities than to answer medical questions posed by other members of the healthcare team.

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The issues of privacy are often most important for older school-aged and adolescent patients. Placing these patients in areas where there is less “traffic” may help a patient retain self-esteem and positive morale. Using movable screens in areas where visibility is higher is important, especially when nursing tasks are being done. Often the child life specialist remains more attentive to these privacy needs than medical staff concentrating on procedures. Similarly, it may be the role of the child life specialist to heighten awareness of particular developmental issues—for example, the child who is sedated but still sensitive to the sound of surrounding conversations or comments during treatment. An eight-year-old spent several months in the ICU after being severely burned in a fire, and because her mother spoke no English, many caregivers assumed that the child also did not understand English. The child life specialist who participated in her daily burn care with support and distraction techniques frequently reminded caregivers that she understood all of the conversation that took place at the bedside during these procedures. Meeting the developmental needs of patients within the ICU can be challenging when the predominance of equipment and treatments seems to take precedence. The role of the child life specialist as part of the healthcare team may be to advocate for policies and procedures that help address both medical and emotional needs. Scheduling care-taking activities and therapies may help a patient maintain control. A developmental care plan in the form of a dry erase board hanging prominently on the wall of each room can be helpful for children of all ages. It may be colorfully decorated with headings for the parent or child to fill in including, for example, the child’s nickname, names of family and friends, favorite comfort or distraction measures, likes, and dislikes. Information about comfort measures, such as use of a pacifier or favorite blanket for an infant may help a caregiver or volunteer to settle a tired or anxious patient. A thirteen-year-old girl, frequently admitted to the ICU for IV medications while awaiting a heart/lung transplant, makes it her first priority to fill out the developmental board herself, thus making sure that everyone who cares for her will be attentive to the psychosocial needs that are most important to her. As in other parts of the hospital, one of the ways to decrease the stress for patients and families is to provide preparation for changes that medical care or treatment may require within the ICU. The child who will awaken

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from surgery intubated or with a new tracheostomy needs to be prepared for changes in function and treatment procedures, as well as feelings. Preparation methods will depend upon the child’s coping behaviors and ability to interact, but need to follow the same principles as traditional procedural preparation. The child life specialist will most often need to create specific teaching and preparation tools for critical care work. A doll with a tracheostomy or ventilator, photographs of medical equipment, and preparation kits for particular procedures and treatments should be part of the child life specialist’s resources. Preparation programming will vary depending on the layout, policies, and procedures of the particular unit, the acuity of the patients placed there, and the demonstrated informational needs of the patient and family. In some hospitals, patients who are more responsive to preparation interventions may be placed on an intermediate care unit with the ICU being reserved for the most critically ill patients (see Chapter 9). For the child who has recovered sufficiently to be able to leave the ICU, child life may play an important role in easing the transition from one unit to another. Transferring out of the critical care unit is a stress point for families who have established a trusting relationship with caregivers and feel supported with the small ratio between patients and nursing staff. Conflicting feelings may result from the understanding that leaving the ICU means that their child is getting better, while experiencing a sense of abandonment and the loss of familiar and ever-present ICU nursing care (Colville et al., 2009). A brief tour of the new unit by a familiar child life specialist may help in emphasizing the positive aspects of the new placement for child and family. A well-documented psychosocial plan of care may be passed from one child life specialist to another to ease the transition and increase the child’s feelings of comfort in this new setting where play and developmental needs will continue to be met. Knowing how a child copes and what techniques are most helpful during particular stress points will also help the child and staff to work toward positive outcomes. In addition to preparation and support during a child’s stay in the critical care unit, and support for the transition to another unit, children and families may benefit from opportunities to visit the ICU after recovery. For a child to return to the unit and be greeted by familiar nurses, child life, and other staff who worked with him or her, gives the child and family the experience of having managed a potentially frightening experience in a positive way. Mastery of the experience may also include special attention to those areas that the child or family has identified as most difficult. In one pediatric hospital, transport team members often visit children who have been transported to the hospital emergently following a traumatic injury. Before discharge, the child and family may be invited up to the helicopter pad to talk

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with the crew and take photographs. This offers another opportunity for mastery for the child, while helping siblings sequence the confusing series of events surrounding a traumatic injury. SIBLING STRESSORS The hospitalization of a sibling represents a significant event in the life of a child, and the effects are compounded if the sibling dies or becomes permanently disabled. The bond between siblings develops before birth as a family anticipates the arrival of a new baby and the child prepares to become a big brother or sister. The sibling relationship most often lasts beyond the lifetime of the parents (Grollman, 1995). The illness of a brother or sister is considered to be one of life’s most stressful events (Pearson, 2005). Craft and Craft (1989) report that siblings of an ill child were most concerned about being separated from their brother or sister, worried over the illness, and feared the outcome. Siblings often feel jealous of the attention being given to the ill or injured sibling and may need reassurance that these feelings are normal (Bugel, 2014). Increased knowledge of family-centered care principles has helped to identify the importance of including siblings in caring for the child in the critical care setting (Lehna, 2010). Siblings of families experiencing the overwhelming stress of a traumatic event face unique challenges (Bugel, 2014). Siblings reported changes in family routines including care by multiple caregivers in the absence of the parents, increased responsibilities of home chores, altered sleep patterns, and daily scheduling changes. But positive changes were also reported indicating that siblings established a closer relationship with one another following a traumatic injury (Bugel, 2014). When asked what advice they had for hospital caregivers, siblings responded, “That we’re here too. Don’t forget us” (Bugel, p. 183). Themes of recognition and confirmation of their importance in the family were described by siblings. All the siblings in the study reported that they felt ignored by staff and that their need for information about treatment realities and plans for their injured sibling was insufficiently addressed. Child life specialists need to continually advocate for family-centered care, including sibling presence in the critical care unit. Speaking comfortably with parents under stress, answering not only parent but also sibling questions, and providing support for families to be together during stressful life events, may make a significant difference in a family’s ability to cope. For many families, the desire to have the family together is strongly felt, but the actual process of managing a sibling’s visit to the bedside of a critically ill, and

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perhaps unresponsive, child may be overwhelming. Knowing that the child life specialist has the necessary resources to implement the difficult task of preparation, while focusing on the emotional and developmental needs of both the patient and siblings, may facilitate family coping (Desai, Ng & Bryant, 2002). Child life specialists are skilled in creating teaching tools that address the important components of preparation in a developmentally appropriate format. Many of the same resources used to prepare the patient may also be used when preparing siblings, including educational photographs, medical equipment and play. Having a safe, child-friendly play space within or near the ICU for siblings and patients to engage in play activities encourages mastery. Siblings in Bugel’s study (2014) reported that engaging in recreational activities and entertainment, as well as therapeutic sibling group programming, made them feel welcomed and enhanced their feelings of inclusion. Davies (1999) has suggested interventions that may be helpful throughout the experience of a sibling’s hospitalization—interventions that may serve as a guide for best practice standards for sibling involvement: • Provide developmentally appropriate explanations to convey diseaserelated information to siblings; • Facilitate discussion of these feelings between parents and children when siblings are present; • Encourage phone calls, letter writing or videoconferencing if siblings are not present; • Remind family members to include school personnel and child care providers with information for additional sibling support; • Include siblings in child life programming as possible; • Provide group programming specifically for siblings in specialty units, such as oncology or NICU; and • Support parents in meeting the needs of their well children. THE DYING CHILD A child with a life-threatening illness, and the members of his or her family, may respond in many ways and demonstrate a range of differing behaviors. Doka (2014) describes a series of phases that a family experiences when a member is diagnosed with a life-threatening illness. In the initial phase, that of prediagnosis and diagnosis, a family may face feelings of stress that are as significant as in the terminal phase or at the time of death. How the family handles this first phase may be indicative of their subsequent fears, coping

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patterns, and information-seeking abilities. Doka refers to the time between the diagnostic or acute phase and the terminal phase of the illness, as the chronic phase. It is during this period that families realize the illness and treatment will be a continuing part of their family life. During this protracted and ill-defined phase, families may feel less supported by others and more isolated from social activities. When attention shifts from aggressive treatment to palliative care, decisions about quality of life and end of life demonstrate the realities of impending death (Doka, 2014). In reviewing these phases, one can easily identify areas that may be addressed by child life interventions. With consideration given to the developmental needs of each age group, child life specialists help a child in the acute and chronic phases to understand the disease itself and the implications of treatment. They may also facilitate the learning of coping styles to support the child through potentially painful procedures. Involvement in child life activities helps the child ventilate feelings and fears, while learning to integrate implications of the illness into daily routines and relationships with family members and peers. Finally, in the terminal phase of illness, child life specialists may help a child prepare for death by preserving self-concepts, maintaining relationships with family and friends, and expressing feelings and fears. Through expressive art, a dying child or teen may find comfortable and developmentally appropriate ways to say goodbye to important people in their lives (Pearson, 2005). Writing is a powerful tool for many to express sincere and intimate feelings in a safe format, whether it is done through letters, journaling, poetry, or email. For others, drawing, painting, clay, or other art media may provide unique opportunities for creative selfexpression (Hart & Rollins, 2011). The creative thinking of the child life specialist may more easily bridge limitations in physical abilities caused by weakness or pain. For example, making audio or video recordings for family or friends may be useful when writing is no longer possible. Often the assistance of a trusted staff person, rather than a family member, makes this task more manageable and helps protect close family members from the emotional difficulty that these tasks may represent. SUPPORTING THE DYING CHILD The importance of communication between the dying child and family at end of life is well documented in the literature (Bluebond-Langner, 1978, 2010; Sourkes, 1995). Doka (1995) writes that, “Keeping information from a child is not only futile; it is also harmful. It inhibits the child from seeking support, creates additional anxiety, impairs trust and complicates the child’s response to crisis” (p. 32).

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The parents of a six-year-old girl in the terminal phase of leukemia refused to talk with their daughter about her impending death. When the child began to draw pictures of angels, the child life specialist asked her permission to show the drawings to her parents. After viewing their daughter’s symbolic drawings, the child life specialist was able to facilitate discussion between parents and child about death. Children nearing the end of life have many concerns, but may need help to express these concerns and get answers to their questions. These questions frequently focus on fear of abandonment, fear of retribution, and fear of death or dying (Huntley, 1991). Child life specialists and other trusted members of the healthcare team play a key role in addressing these communication needs. Wolfelt (1996) developed guidelines, subsequently adapted by Broome and Rollins (1999), for enhancing communication and interventions with the dying child (see Table 1). The topic of talking about death with children with terminal illnesses is not without its contradictions. Despite the acknowledged advantages of communicating with children about their impending death, many parents choose not to do so. A study in the Netherlands interviewed 86 parents of 55 children who had died and determined that 64% had not discussed death with their child. Reasons included parents’ desire to protect their child from bad news, feelings of insecurity about their ability to talk with their child, lack of opportunities and/or the child’s refusal to talk (van der Geest et al., 2015). Three-fourths of the parents who did talk with their children reported positive feelings about the conversation, stating that it brought the family closer together, as well as reducing the child’s fear and encouraging their participation in funeral planning. The age range of children in this study was from 3 to 8 years. SUPPORTING THE DYING ADOLESCENT The developmental tasks of healthy adolescents focus on becoming independent, developing social networks, and preparing for careers and, perhaps, long-term relationships. In contrast, some critically ill adolescents may have a childlike body appearance and face a loss of sexual development. The adolescent may also be suffering debilitating physical effects of disease and treatment and feel a strong sense of unfairness in losing everything so close to attaining adulthood (Carr-Gregg, Sawyer, Clarke, & Bowes, 1997). Teenagers frequently choose to talk with a person with whom they feel comfortable. A child life specialist may often be the teen’s choice because of

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Table 1 GUIDELINES FOR INTERVENTIONS WITH THE DYING CHILD 1. Do not underestimate the child’s capacity to understand. 2. Create open communication, but do not force it. a. Listen first, then offer support. b. Provide honest information. c. Remember that it is okay to say, “I don’t know.” d. Answer only what the child wants to know. 3. Provide creative outlets for anger, such as art. 4. Follow the child’s lead. 5. Be honest with the child about impending death. 6. Allow the child time to say good-byes. 7. Permit the child to decide when he or she wants to share the pain of grief. 8. Remember the child may choose to protect the parent (mutual pretense). 9. Help the dying child to live. a. Make the child comfortable (1) Arrange physical setting for the child to be with family. (a) Create space for the child in family living area. (b) Plan family activities for the child to participate or observe. (c) Arrange for medical equipment only as needed. (2) Address pain control measures and methods. (3) Focus on keeping environment and routine child-focused as much as possible. b. Create special memorable moments. c. Continue some routine. d. Surround the child with people who mean the most to him/her. e. Help the child maintain peer friendships. Adapted from Wolfelt (1996). Reprinted with permission from M. E. Broome and J. A. Rollins (1999), Core curriculum for the nursing care of children and their families (p. 87). New Jersey, Jannetti Publications, Inc.

the trusting and supportive relationship that has been built. In addition, the non-medical role of the child life specialist may help to support this interactional relationship. Adolescents may choose to confide in someone whom they feel will be able to tolerate the overwhelming sadness of impending death. Conversations may be concrete or existential, with opportunities for the teen to express fears and anxieties. Listening requires the ability to “hear” both verbal and nonverbal cues (see Chapter 5). For adolescents who are entering the end-of-life stage, addressing the following developmental tasks is important: • Dealing with symptoms, discomfort, pain and incapacities; • Managing health procedures and institutional procedures;

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• • • • • • •

Managing stress and examining coping; Dealing effectively with caregivers; Preserving self-concept; Preserving relationships with family and friends; Ventilating feelings and fears; Finding meaning in life and death; and Preparing for death and saying good-bye. Adapted from Doka (2014).

Some adolescents may be more comfortable expressing feelings and thoughts through different creative outlets—music, writing poetry, or drawing, for example. With the support of child life, adolescents may write their will, plan their funeral, or make recordings for family and friends (CarrGregg et al., 1997; Foster, Dietrich, Friedman, Gordon, & Gilmer, 2012). They may also choose to make a list of friends whom they would like notified at the time of death. In addition, because adolescents have grown up with the Internet, they may find increased support in online blogs and personal websites (Doka, 2014). Adolescents need to know that their life has meaning, and peer relationships, either online or in person, contribute to that knowledge. SUPPORTING THE PARENTS OF A DYING CHILD OR TEEN Parental fears at the time of impending death focus on fear of abandonment or isolation, fear of failure in their role of parent and protector, and fear of coping with a child’s pain and death (Huntley, 1991). Supporting parents at this time is often hard for staff. Parents seek support, but know that absolute answers are not always possible. Interventions with parents should be specific and responsive to their expressed needs. Most important may be the ability to affirm parents as loving and capable of making good decisions (Huntley, 1991). In a study conducted by Weidner, Cameron, Lee, McBride, Mathias and Byczkowsk (2011), seven dimensions of end-of-life care were identified by parents as most important: • • • • •

Respect for the family’s role in caring for their child; Comfort—managing pain while still able to interact or play; Spiritual care; Access to care and resources; Communication—sensitive and compassionate sharing of information

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for parent and child; • Support for parental decision making; and • Caring and humanism—including bereavement support, the presence of familiar caregivers who viewed the child as a unique, whole being. Another factor of importance to parents is physical proximity (Falkenburg, Tibboel, Ganzevoort, Gischler, Hagoort, & van Dijk, 2016). Parents looking back to the time of their child’s death recalled as most significant those instances when they were able to touch or hold their child, or lie in bed with them, and most parents chose to participate in the physical cares of their child after death. The study concluded that physical contact at time of death helps parents express their sense of continuing bonds with their child. Another study looked at the roles played by healthcare professionals in the PICU and ways they could support parents in decision-making (Michelson, Patel, Haber-Barker, Emanuel & Frader, 2013). Roles were differentiated into three categories: directive, value-neutral, and organizational. Professionals performing directive roles were those making decisions and providing information, mainly nurses and physicians. The value-neutral roles were identified as that of being a family supporter and advocate. These roles focused on the emotional, spiritual, environmental, relational and informational family needs in a nondirective way. Child life specialists were included in this category as persons who provided nonjudgmental emotional support through conversation, listening, gentle touch and physical presence. The value-neutral role also encompasses providing for family’s environmental needs—for example, food, sleep, and quiet family areas. Finally, the organizational category includes the role of end-of-life care coordinator who organizes and executes tasks before, during and after the death. The professional in this role is responsible for talking with the parents about what may be expected in the dying process, engaging siblings in developmentally appropriate activities, providing memory-making opportunities, and addressing medical questions of autopsy or organ donation. While the medical discussion would be led by physicians, the other responsibilities of this role would be shared by social work, chaplaincy and child life, individuals who have established trusting relationships with the family in the time leading up to this point. Of particular note, child life is acknowledged in this framework as an integral member of the PICU team (Michelson et al., 2013)! The importance of legacy-making is well-supported in the research literature (Michelson et al., 2013; Foster et al., 2012). Memory books, hand and foot molds, art work, photos, songwriting, and videos offer families permanent memorabilia while confirming that the child’s life has meaning and will not be forgotten. Of the 77 teaching hospitals that participated in a survey of

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legacy-making activities, 97% offered such activities for families, with the child, family, and siblings included in these activities (Foster et al., 2012). Survey findings of this research indicate the positive effects of these activities for ill children and their families, encouraging communication about death while supporting coping. The research also found that encouraging and helping families to participate in such activities provides benefits to nursing staff who, after knowing and caring for a child for a long time, were therefore able to contribute to legacy-making activities. Foster et al. suggest that legacymaking may be meaningful, not just at the end of life, but rather throughout the disease trajectory. As Michelson et al. (2013) note, such interventions may well be facilitated by child life specialists. PATIENT INVOLVEMENT AND END-OF-LIFE DECISION MAKING To respect a child is to acknowledge the importance of his or her world and the relationships that are central to it. (Rushton, 1990, p. 207)

The role of children as decision makers in end of life care is complex, because they may not yet have developed life values or goals upon which such decisions would be made (Rushton, 1990). In addition, a child may not have reached the cognitive level to facilitate discussion in families facing critical illness or injury, or the illness or injury itself may have made the child incapable of participating in the decision-making process (Voss, 1999). Bluebond-Langner et al. (2010), well known for her book, The Private Worlds of Dying Children (1978), researched the involvement of children and teens in decision making about cure and treatment, and acknowledged the concept of “mutual pretense” as a significant obstacle in parent-child interactions. The concept is defined as “the knowledge of the poor prognosis by both parent and child, but admitted or addressed by neither.” Thus, difficult issues are avoided, and neither parent nor child breaks down when facing minimal odds of survival. Bluebond-Langner and her colleagues suggest a framework of “shuttle diplomacy” to facilitate a child or teen’s participation in decision making about treatment. Inherent in this approach is the concept that all parties will be listened to, but ultimately it is the responsibility of the parent to make the decision. Led by a physician, the process is invaluable in that it takes into account children’s vulnerabilities and abilities, the relationship between child and parents, and the complex medical and moral issues that families struggle with throughout the course of having a child with a lifelimiting illness. While the child may not concur with decisions about ongoing treatment or cares, the child will have been involved and, therefore, may be more accepting of the process (Bluebond-Langner et al., 2010).

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After years of treatment, multiple hospitalizations and the experience of observing the suffering and death of peers with similar conditions, adolescents with a chronic or life-threatening condition may possess a maturity like that of an adult (Weir, 1997). For older children and adolescents, decisionmaking involves participation of the parents and physician, but should also include the assent of the patient. The American Academy of Pediatrics (2016) states that assent requires: • Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition; • Telling the patient what he or she can expect with tests and treatment; • Making a clinical assessment of the patient’s understanding of the situation and the factors influencing how he or she is responding (including whether there is pressure to accept testing or therapy); and • Soliciting an expression of the patient’s willingness to accept the proposed care. In exploring adolescents’ wishes when treatment options have been exhausted, Knopf, Horning and Slab (2008) found that adolescents want honest and direct answers to their questions, but do not want to be the ultimate decision makers. They prefer parent and physician-led decision making, with the authors speculating that teens may have a greater understanding of the complexities of the issues involved than younger children. Parents report that after years of coping with their child’s chronic illness, they have had many opportunities to observe and sense what their teen’s preferences would be at end of life (Hinds & Kelly, 2010). For this reason, parents may not feel the need to speak directly with their adolescent at the time of decision making. Weir (1997) outlined practice guidelines for facilitating an adolescent’s responsible participation in decision making. These include: • Importance of communicating information throughout diagnosis, prognosis, evaluation, and treatment; • Comprehensible and compassionate communication; • Time for family to assimilate new information; • Opportunities for the adolescent to ask questions and respond to information, both with parents and privately with physician; • Support during emotional and physical stress; • Clarification that advance directives may be modified or reversed at any time; and • Nonjudgmental attitude demonstrated by all healthcare professionals.

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Hinds and Kelly (2010) summarize the complex factors of end-of-life decision making for physicians, parents, and patients to be relationship-based, suggesting a delicate blend of professional and personal involvement, in some cases beginning at the time of diagnosis and continuing to the end of life. Based on effective communication between staff and family members, a strong sense of trust built over time, and advanced knowledge and understanding of the child’s serious condition, leads to a bonding of parental and professional participation in end-of-life planning that provides support to families at the time of death and into the future of a family’s grief work. The role of the child life specialist in meeting the needs of a family at the time of death requires participation as a trusted member of a multidisciplinary team that may include medical staff, nursing, social work, pastoral care, bereavement staff and other disciplines. The work of supporting the immediate family, extended family, friends, and staff at the time of death requires a process of ongoing assessment and redefining of needs and concerns. Identifying a family’s needs for spiritual guidance, interventional activities for siblings, financial resources for funeral planning, or simply a cup of coffee and private time to grieve, becomes the work of the team, rather than particular individuals. Ongoing communication and collaboration will help identify the unique perspective and expertise of other members of the team, assuring that each family’s specific needs are met in a professional yet caring manner (Pearson, in press). SUPPORTING SIBLINGS OF A DYING CHILD The importance of siblings’ presence in the critical care setting has already been discussed. For the child who recovers and leaves the ICU, sibling involvement assists the family in coping and returning to normal routines and lifestyle with the least disruption in development and family functioning. When a child is not expected to survive, interventions with siblings become a priority for child life. While parents may realize the implications of escalating treatments or the declining medical condition of their child, children are less able to engage in anticipatory grief work and tend to believe in the sibling’s improved health until the downward spiral of illness is continually demonstrated (Davies, 1999; Weidner et al., 2011). The factor that may have the greatest impact upon a child’s ability to cope with the critical illness and potential death of a sibling is the degree to which he or she has been included in the illness and death experience (Davies, 1999; Weidner et al., 2011; Aschenbrenner, Winters & Belknap, 2012). Classic theoretical work on coping by Lazarus (1966) indicates that

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three important principles have direct impact upon a child’s ability to cope— direct action, predictability, and affiliation. Involving siblings directly may mean encouraging their presence in the hospital setting and allowing them to participate in developmentally appropriate cares or bedside activities. Predictability, defined as recognizing the outcome, allows siblings the ability to experience firsthand the inevitability of an impending death. Exposure to progressive sickness or weakness, for example, helps the sibling to understand the predicted outcome. In situations whereby a child is injured or suddenly becomes critically ill, a sibling’s ability to visit the hospital, learn of the event, and begin processing the severity of the situation may contribute to predictability, or the realization that a brother or sister may be dying. This principle helps define best practice standards when asked to assist in preparing siblings for an anticipated death. In the “Fetal Concerns Program” of one hospital, the child life specialist is often called upon to assist families with young children, when the prenatal diagnosis of a lethal anomaly changes the excited family’s preparations for the birth of a new baby. Lauren and Alicia knew that something was wrong at home when everyone stopped talking excitedly about the upcoming birth of John. With the support of child life, their parents were able to prepare the three and five-year-old siblings for the birth of the baby “who will be very, very sick when he is born.” This intermediate stage of preparation did not take away the family’s slim hope that prenatal tests might be wrong, but still began preparing everyone for the inevitable sadness that was to come. (Pearson, 1997) Finally, research by Davies (1999) supports the importance of siblings’ involvement and affiliation, indicating that siblings who are present with the family and extended family are better able to cope with a stressful event than those siblings who are not present. Siblings who do not have the support of family and are not present at the hospital often demonstrate greater emotional vulnerability and distress. In order to plan child life interventions for children facing the impending death of a brother or sister, it is necessary to identify a child’s cognitive understanding of death. Speece and Brent (1996) identified five components: • Universality—the understanding that all things must eventually die. • Irreversibility—once a physical body dies, it cannot come alive again. Younger children who have not developed the concept of irreversibility believe that death is temporary and reversible. Thus, a dead person may come back to life spontaneously or magically. For the young

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child, this concept is determined by questions about how a person who has died will eat, sleep, or perform other functions such as hearing or talking. • Nonfunctionality—the realization that when a living thing dies, all aspects of a living body cease to function. Children struggling with this concept question whether a dead person can eat or feel cold under the ground. The ability to differentiate between what is alive and what is dead defines this component. • Causality—includes both abstract and realistic causes of death, or internal and external factors. For younger children, causes of death may be unrealistic and blamed on bad behaviors or specific causes like guns, rather than factors such as illness or old age. • Noncorporeal continuation refers to the belief in an afterlife or some kind of communication that goes on after the death of the physical body. Parents struggle with how to communicate in ways that will help the child understand, whether they are trying to tell siblings about a dying brother or sister, or talking directly with a dying child. Talking to children using developmentally appropriate words and concepts is important for siblings to begin coping and integrating the experience of loss (Michelson et al., 2013), and child life specialists are best suited to lead these difficult discussions, while keeping the components identified by Speece and Brent in the forefront. Before beginning preparation of siblings for saying goodbye, it is important to assess the situation, expected outcomes, and wishes of the family for their other children. Many families are unable to determine whether or how to include siblings at the hospital or bedside of their dying brother and sister. With guidance from child life specialists, family members may be helped to acknowledge the appropriateness of their decisions. A parent may want the other children present, but receive conflicting opinions from other family members. To encourage siblings’ presence in the hospital as a first step allows an opportunity for the family to be together. Siblings may then decide if they wish to go to the bedside. When talking with children about the impending death of a brother or sister, it is important to address the developmental needs of each child, while role-modeling appropriate language and behaviors. Before beginning preparation for anticipated death in the ICU setting, it may be necessary to explain to parents the importance of specific language. To use the words “dying” and “dead” might be considered insensitive by some families unless prepared for the necessity of specific and age-appropriate wording. Children need to have

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explanations that are clear and concise and focus on physiological facts and happenings. It may be helpful to begin such preparation by asking the children what they think is happening. Hearing their explanation of the situation will help to plan the necessary intervention. Misconceptions may be identified and areas of clarification noted. When possible, it is important to explain the probable cause of death (e.g., a brain injury or heart condition) by contrasting it with the healthy state of the sibling’s own brain or heart. The brother or sister of a dying child is particularly vulnerable, and to be able to reassure them of their own safety is significant if at all possible. The environment in which sibling preparation takes place should be carefully considered. Knowing parents’ wishes about what will be said and who will say it should be discussed beforehand. Sometimes parents will consider themselves emotionally unable to say the words that the other child or children need to hear. Perhaps another relative will do the talking, or the child life specialist may facilitate the communication in the presence of people the sibling trusts. Children often do not remember who said the words, but they do remember on whose lap they were sitting at the time. Limiting the number of extended family members who are present will help the sibling to feel comfortable and encouraged to ask questions. During family conversation, it may also be necessary to acknowledge family beliefs that are beyond the child’s developmental ability to understand. The belief that baby sister will be cared for by great-grandma in heaven may be comforting to adults, but is too abstract for young children. Supporting these beliefs with more age-appropriate words may clarify explanations without contradicting a family’s belief system. It is especially important to identify family members who will be available to the child during the periods of acute sadness and emotional inaccessibility of the parents. To point out all the people who care about the sibling provides additional support. Also, identifying a particular family member who will be responsible for accompanying the child in to and out of the patient room is important, so the child is not lost in a large group of grieving adults. During preparation and bedside visits, physical touch and nonverbal comforts, as appropriate, will help the child feel supported. Finally, a child must be prepared not only for the sights, sounds, and smells of the ICU, but also for the emotions of the surrounding adults. Preparation for bedside visiting in the ICU should include discussion of the child’s potential participation in the events, rather than simple observation, if that is the sibling’s choice. For example, children should be prepared for what they might wish to do at the bedside. This might include, talking, singing, or praying with family members, touching the person if they wish to, or participating in simple caretaking routines. Clarifying what responses, if

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any, are to be expected of the dying child is important. Siblings need to have activities while at the bedside and between visits. Creating big brother or sister cloth dolls, memory bracelets, or blank journals will help a child begin the work of grieving in developmentally appropriate ways. The ability to engage in expressive art activities will also add a sense of normalcy in a setting where nothing feels familiar or comfortable to the child. When parents or siblings enter the ICU and notice a familiar comfort object at the child’s side, perhaps that particular object will be remembered more vividly than the number of machines or IV pumps surrounding the child’s bedside. An eight-year-old was being prepared to visit the bedside of her adolescent sister who had collapsed at a slumber party they had attended together. She shared with the child life specialist that although they were technically half sisters, they had declared their sisterhood by exchanging bead bracelets that had secret meanings to the two of them and made them real sisters. Nursing staff who had removed the bracelet earlier while inserting an arterial line might easily have overlooked this fact. The child life specialist was able to go to the bedside prior to the sibling’s visit to replace the bracelet so it would be obviously visible when she came to the bedside to say goodbye. When comfort objects are not available, especially when a child is dying from traumatic injury or sudden illness, it is possible to create mementos that help families in grieving. Giving a home-like quilt in which to hold their child at the time of death may provide family members with a sensory comfort that would not be the case with torn or stained personal objects of clothing, or the sterile whiteness of hospital linen. If siblings will be visiting, it may be possible to provide a small stuffed animal tucked in at the bedside of the dying child and then given to the sibling as a cherished personal keepsake. This helps to acknowledge the importance of each family member’s need for concrete objects as mementos to assist in initiating grief work. When Derrick and David’s two-year-old brother died after a lengthy stay in the PICU, both boys were present with the family. Each boy chose to help in creating a memory book about their brother. They chose a rainbow stamp pad to put a handprint on the front cover and a footprint on the back cover. While many family members said their goodbyes at the bedside, the siblings eagerly worked on writing and illustrating their memory books in the PICU playroom with the supportive presence of the child life specialist.

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PALLIATIVE CARE The provision of palliative care for children includes sensitivity to and respect for the child’s and family’s wishes. Palliative care includes the control of pain and other symptoms and addresses the psychological, social, or spiritual problems of children (and their families) living with life-threatening or terminally ill conditions. The goal of palliative care is the achievement of the best quality of life for patients and their families, consistent with their values, regardless of the location. American Academy of Pediatrics (AAP) Committee on Bioethics and Committee on Hospital Care, 2000 (p. 351)

This early statement by the AAP marked recognition of the emergence of a new specialty in the field of pediatrics—palliative care, which is both a philosophy and a program (O’Quinn and Giambra, 2014). Projected goals are to diminish suffering, provide holistic care for the child and family, enable informed choices, coordinate multispecialty care, and help children and families live to their fullest (AAP, 2000). Up until this time, the terms “hospice” and “palliative care” were interchangeable, with hospice firmly linked to cancer. With improved technologies and new drugs and treatment, the focus gradually changed to longer life expectancies and altered disease trajectories. The concepts of hospice and palliative care began to be differentiated with palliative care to be offered by the multidisciplinary team from time of diagnosis through bereavement, even when cure is a possibility (Stayer, 2012). The American Academy of Pediatrics statement on Palliative Care defines the concept as “seeking to enhance quality of life in the face of an ultimately terminal condition” (AAP, 2000, p. 351). It includes the control of pain and other symptoms, while addressing a broad spectrum of family and patient needs, also defined as achievement of the best quality of life consistent with a family’s values, regardless of the location of the patient (AAP, 2000). The foundation of palliative care rests on the following principles: • • • •

Respect for the dignity of patients and families; Access to competent and compassionate palliative care; Support for the caregivers; and Improved professional and social support for pediatric palliative care.

This broad concept focuses on a family’s identified quality of life based on each family’s unique set of values, wishes, and needs within the context of illness and treatment (AAP, 2000). The emergence of multidisciplinary palliative care teams in pediatric hospitals, alternative settings, and in homes,

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has greatly expanded the potential for child life professionals to match skill sets and competencies and to be integrated into this important work. Another critical care unit within most tertiary care hospitals, one where the application of palliative care programming is often a necessity, is the Neonatal ICU (NICU). An increasing number of child life specialists practice in this setting addressing the family-centered, developmentally supportive care needs of newborn infants and their families. According to a study by Smith, Desai, Sira and Engelke (2014), child life specialists listed their top three tasks in the NICU to be sibling support, palliative care bereavement support and family education. Stressors may be similar to those in the PICU including environmental aspects of overstimulating noise levels and lighting, and psychosocial factors affecting infant-maternal bonding (Smith et al., 2014). Psychosocial support, such as that provided by child life, has been proven to reduce stress and improve long-term outcomes while increasing maternal sensitivity and positive mood in infants (Ravn, Smith, Lendemann, Smeby, Kyno, Bunch, & Sandvik, 2011). Study respondents also listed developmentally appropriate play, procedural support, comforting positioning, and interventions to ease environmental stressors as crucial to the work of child life specialists within the NICU. The challenge suggested by Smith et al. is to provide skill-specific training for the work of child life in the NICU while increasing the integration of child life as part of the interdisciplinary team. CULTURALLY SENSITIVE CARE AT THE TIME OF DEATH Families from different cultures and ethnic backgrounds may have various rituals and ways to express feelings at the time of a child’s death. However, to divide families by culture into broad categories, as if all members of a certain culture believe the same thing and practice the same rituals, is inconsistent with family-centered care principles. It is generally recognized that great diversity now exists in many ethnic groups and children often represent a new and partially assimilated generation (Grollman, 1995). In addition, certain ethnic groups may have a long history of losses, including loss of homeland or native language, loss of traditions, and loss of homogeneous cultural family group. For these reasons, it is necessary to determine what each family’s cultural beliefs related to end-of-life care may be, especially if assertiveness in decision-making in relation to medical authority is not encouraged in one’s culture (Shapiro, 1994). McGoldrick et al. (2004) developed a series of questions to assist in determining family beliefs and cultural practices surrounding the death of a child.

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• What are the prescribed rituals for handling dying, the dead body, the disposal of the body, and rituals to commemorate the loss? • What are the beliefs about what happens after death? • What does the family believe about appropriate emotional expression and integration of loss experience? • What are the gender rules for handling death? • Are certain deaths particularly stigmatized or traumatic? Applying culturally-sensitive care principles to child life practice means developing the skills to engage the patient or sibling in appropriate anticipatory grief work within the norms for any culture. Respecting a family’s beliefs at the time of death requires that we approach families with sensitivity to determine their needs and wishes. It may be necessary to ask a family directly if the interventions that might be helpful for siblings are acceptable. To create handprints or photographs may be inappropriate in some cultures. Encouraging physical touch during closing rituals may also be contrary to religious practices. A family may have strict beliefs that define which family members are allowed to be present at the time of a death. One child life specialist spent several hours in the ICU playroom working with two school-age siblings whose younger brother was critically ill. When it became clear that this young child was not going to survive, a discussion took place between the child life specialist and the family spokesman, the children’s uncle, to determine the family’s wishes and cultural expectations. The uncle indicated that soon all of the women and children in the family would be sent home, and only the men would be present at the bedside at the time of the death. With this information, the child life specialist was able to engage the children in memory work and goodbye rituals, including making handprints, and drawing pictures to place at their brother’s bedside. While the children worked on their pictures, they readily shared stories of their brother and talked about their beliefs for life after death. Their final departure from the hospital was made easier by the memory work they were able to begin. Each child left the hospital with a blank book in which to write and illustrate the stories they had begun to share about their brother’s life. Being a trusted member of the healthcare team may help to facilitate the process of determining cultural norms and practices. Working closely with social services, pastoral care, and medical staff allows for a comprehensive and culturally-sensitive plan of care to be implemented.

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SUMMARY In the environment of the critical care unit, where equipment and technology are the focus of so many medical advances, there is an important place for psychosocial caring. A child life presence within the ICU, NICU or Intermediate ICU confirms the growing knowledge that developmentally appropriate activities help children master medical experiences, even when critically ill or injured. In addition, attention to the needs of parents and siblings supports family-centered care principles and promotes positive coping. To master a critical care experience with supportive child life interventions may mean less disruption in family function and a child’s normal development. In the most difficult circumstances, when a child is too ill or injured to survive, the ability to provide sensitive care at the time of death to every family, regardless of cultural beliefs, socioeconomic level, family values or even differences in coping styles, presents an ongoing challenge for child life practice. Because of our unique role and the close relationships, we are able to build with patients and families, we need to continually develop our knowledge base and competencies to engage in this most difficult work. We do know that our presence makes a difference, and it may be viewed as one of the rewards of this important work, that we are constantly given new gifts of understanding and compassion by listening to the families and children with whom we work. REFERENCES Aschenbrenner, A. P., Winters, J. M., & Belknap, R. A. (2012). Integrative review: Parent perspectives on care of their child at end of life. Journal of Pediatric Nursing, 27, 514–522. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. (2000). Palliative care for children. Pediatrics, 106(2), 351–355. American Academy of Pediatrics, Committee on Bioethics. Informed consent in decision making in pediatrics. (2016). Pediatrics, 138(2), e20161485. Ames, K. E., Rennick, J. E., & Baillargeon, S. (2011). A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit. Intensive and Critical Care Nursing, 27, 143–150. Bluebond-Langner, M. (1978). The private worlds of dying children. Princeton, NJ: Princeton University Press. Bluebond-Langner, M., Belasco, J. B., & Wander, M. D. (2010). “I want to live, until I don’t want to live anymore”: Involving children with life-threatening and lifeshortening illnesses in decision making about care and treatment. Nursing Clinics of North America, 45, 329–343.

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Board, R. (2005). School-age children’s perceptions of their PICU hospitalization. Pediatric Nursing, 31(3), 166–175. Bugel, M. (2014). Experiences of school-age siblings of children with a traumatic injury: Changes, constants and needs. Pediatric Nursing, 40(4), 179–186. Carnevale, F. A., & Gaudreault, J. (2013). The experience of critically ill children: A phenomenological study of discomfort and comfort. Dynamics, 24(1), 19–27. Carr-Gregg, M. R. C., Sawyer, S. M., Clarke, C. F., & Bowes, G. (1997). Caring for the terminally ill adolescent. Medical Journal of Australia, 166, 255–258. Colville, G., Darkins, J., Hesketh, J., Bennett, V., Alcock, J., & Noyes, J. (2009). The impact on parents of a child’s admission to intensive care: Integration of qualitative findings from a cross-sectional study. Intensive and Critical Care Nursing, 25, 72–79. Craft, M. J., & Craft, J. L. (1989). Perceived changes in siblings of hospitalized children: A comparison of sibling and parent reports. Children’s Health Care, 18, 42– 48. Davies, B. (1999). Shadows in the sun: The experiences of sibling bereavement in childhood. Philadelphia: Taylor and Francis. Desai, P. P., Ng, J. B., & Bryant, S. G. (2002). Care of children and families in the CICU: A focus on their developmental, psychosocial, and spiritual needs. Critical Care Nursing Quarterly, 25(3), 88–97. Doka, K. J. (1993). Living with life-threatening illness: A guide for patients, their families, and caregivers. Lexington: Lexington Books. Doka, K. J. (1995). Children mourning: Mourning children. Washington, DC: Hospice Foundation of America. Doka, K. (2014). Living with life-threatening illness: An adolescent perspective. In K. Doka, (Ed.), Helping adolescents cope with loss (pp. 15–29). Washington, DC: Hospice Foundation of America. Falkenburg, J. L., Tibboel, D., Ganzevoort, R. R., Gischler, S., Hagoort, J., & van Dijk, M. (2016). Parental physical proximity in end-of-life care in the PICU. Pediatric Critical Care Medicine, 20(30), 1–6. Foster, T. L., Dietrich, M. S., Friedman, M. D., Gordon, J. E., & Gilmer, M. J. (2012). National survey of children’s hospitals on legacy-making activities. Journal of Palliative Medicine, 15(5), 573–578. Grollman, E. (1995). Bereaved children and teens: A support guide for parents and professionals. Boston: Beacon Press. Hart, R., & Rollins, J. (2011). Therapeutic activities for children and teens coping with health issues. Hoboken, NJ: John Wiley & Sons, Inc. Hinds, P. S., & Kelly, K. P. (2010). Helping parents make and survive end of life decisions for their seriously ill child. Nursing Clinics of North America, 45, 465–474. Huntley, T. (1991). Helping children cope when someone they love dies. Minneapolis: Augsburg Fortress. Khanna, S., Finlay, J. K., Jatana, V., Gouffe, A., & Redshaw, S. (2016). The impact of observed trauma on parents in a PICU. Pediatric Critical Care Medicine, 17, e154– 158.

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Knopf, J. M., Hornung, R. W., & Slab, G. B. (2008). Views of treatment decision making from adolescents with chronic illnesses and their parents: A pilot study. Health Expectations, 11, 343–354. Latour, J., van Goudoever, J., Schuurman, B., Albers, M., van Dam, N., Dullaart, E., van Heerde, M., Verlaat, C., van Vught, E., & Hazelzet, J. (2011). A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units. Intensive Care Medicine, 37(2), 319–325. Lazarus, R. S. (1966). Psychological stress and the coping process. New York: McGrawHill. Lehna, C. (2010). Sibling experiences after a major childhood burn injury. Pediatric Nursing 36(5), 245–251. Mattsson, J. Y., Arman, M., Castren, M., & Forsner, M. (2014). Meaning of caring in pediatric intensive care unit from the perspective of parents: A qualitative study. Journal of Child Health Care, 18(4), 336–345. McGoldrick, M., Schlesinger, J. M., Lee, E., Hines, P. M., Chan, J., Almeida, R., Petkov, B., Garcia-Prieto, N., & Petry, S. (2004). Mourning in different cultures. In F. Walsh & M. McGoldrick (Eds.), Living beyond loss: Death in the family. New York: W.W. Norton & Co. Meert, K. L., & Eggly, S. (2016). Observed trauma in the PICU and parental meaning making. Pediatric Critical Care Medicine, 17(4), 375–376. Michelson, K. N., Patel, R., Haber-Barker, N., Emanuel, L., & Frader, J. (2013). Endof-life care decisions in the PICU: Roles professionals play. Pediatric Critical Care Medicine, 14(1), e34–e44. Miles, M. S., Carter, M. C., Riddle, I., Hennessey, J., & Eberly, T. W. (1989). The pediatric intensive care unit environment as a source of stress for parents. Maternal-Child Nursing, 18, 199–205. O’Quinn, L. P., & Giambra, B. K. (2014). Evidence of improved quality of life with pediatric palliative care. Pediatric Nursing, 40(6), 284–296. Pearson, L. J. (1997). Family-centered care and the anticipated death of an infant. Pediatric Nursing, 23, 178–182. Pearson, L. J. (1999). Separation, loss and bereavement. In M. R. Broome & J. A. Rollins (Eds.), Core curriculum for the nursing care of children and families. New Jersey: Jannetti Publications, Inc. Pearson, L. (2005). The child who is dying. In J. Rollins, R. Bolig, & C. Mahan (Eds.), Meeting children’s psychosocial needs across the health-continuum. Austin, TX: ProEd. Pearson, L. (in press). The child who is dying. In J. Rollins, R. Bolig, & C. Mahan (Eds.), Meeting children’s psychosocial needs across the health-care continuum (2nd ed.). Austin, TX: ProEd. Ravn, I. H., Smith, L., Lendemann, R., Smeby, N. A., Kyno, N. M., Bunch, E. H., & Sandvik, L., (2011). Effect of early intervention on social interaction between mothers and preterm infants at 12 months of age: A randomized controlled trial. Infant Behavior and Development, 34, 215–225. Shapiro, E. (1994). Grief as a family process: A developmental approach to clinical practice. New York: Guilford Press.

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Smith, J. G., Desai, P. P., Sira, N., & Engelke, S. C. (2014). Family-centered developmentally supportive care in the neonatal intensive care unit: Exploring the role and training of child life specialists. Children’s Health Care, 43(4), 345–368. Sourkes, B. M. (1995). Armfuls of time: The psychological experience of the child with a lifethreatening illness. Pittsburgh: University of Pittsburgh Press. Speece, M. W., & Brent, S. B. (1996). The development of children’s understanding of death. In C. A. Corr & D. M. Corr (Eds.), Helping children cope with death and bereavement. New York: Springer Publishing Company, Inc. Stayer, D. (2012). Pediatric palliative care: A conceptual analysis for pediatric nursing practice. Journal of Pediatric Nursing, 27, 350–356. van der Geest, I., van den Heuvel-Eibrink, M. M., van Vliet, L. M., Pluijm, S., Streng, I., Michiels, E., Pieters, R., & Darlington, A. (2015). Talking about death with children with incurable cancer: Perspectives from parents. The Journal of Pediatrics, 167(6), 1320–1326. Weidner, N. J., Cameron, M., Lee, R. C., McBride, J., Mathias, E. J., & Byczkowski, T. L. (2011). End-of-life care for the dying child: What matters most to parents. Journal of Palliative Care, 27(4), 279–286. Wolfelt, A. D. (1996). Healing the bereaved child. Fort Collins: Companion Press.

Chapter 13 WORKING WITH GRIEVING CHILDREN AND FAMILIES CHRIS B ROWN uring the last weeks, days or moments of a child’s life, and upon death, child life specialists have a unique opportunity to support children and families. As Towne (2001) notes, “Many (parents) seek someone who has been a trusted, constant influence in their child’s healthcare experience, someone who has helped them in previous difficult situations related to their child’s care. They look for someone who has knowledge of children and of their child as a unique individual. Often, child life specialists satisfy these needs” (p. 1). Even in cases where the family may not have previous familiarity, such as in an emergency department, the sensitivity, skills and non-medical role assumed by the child life specialist provide for effective and welcome assistance at the time of death and beyond. Grief is a complex process, significantly impacted by many variables including the nature of the death, support system availability, and cultural norms. When a death occurs in the hospital setting it often contradicts a strong healing culture and challenges the skills and resources of individual staff members. Bereavement support services will vary depending on setting, caregiver skills and attitudes, and allocated resources. Practices vary widely from hospital to hospital and even from unit to unit. The neonatal intensive care unit (NICU), for example, may have organized procedures for family involvement at the time of death such as making hand molds, cutting locks of hair, taking photographs, and sharing written information to support funeral arrangements. Resources and bereavement support procedures on a general medical unit, on the other hand, may be inconsistently offered or largely unavailable. Some hospitals employ bereavement coordinators or have established bereavement committees to organize services for families

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and for staff. Others have professionally facilitated bereavement support groups or formal parent-to-parent support networks. Child life specialists play an important role in assisting family members in their grief process. As noted earlier, they are often in a position to support siblings at the time of death or to provide adult family members with appropriate tools and information for communicating with and supporting children of different ages during the grief process. They also play an important role when a death occurs on an inpatient unit insofar as it impacts other patients and families. Child life specialists serve as integral members of an interdisciplinary team concerned with providing the most helpful and meaningful psychosocial services to families of children with life-threatening or fatal conditions, including bereavement support services. GRIEF AS A FAMILY PROCESS Grief is ultimately a family process, and it is within the family context that grief can best be understood and support be facilitated. According to Shapiro (1994), “Grief is a deeply shared family developmental transition, involving a crisis of attachment and a crisis of identity for family members, both of which have to be incorporated into the ongoing flow of family development” (p. 12). While recognizing the diversity in individual, family, and cultural responses to loss, family systems are regarded as crucial determinants of the healthy adaptation to loss (Walsh & McGoldrick, 2004). Walsh and McGoldrick recognize four tasks essential to family adaptation when a member dies: (1) shared acknowledgment of the reality of death, (2) shared experience of loss, (3) reorganization of the family system, and (4) reinvestment in other relationships and life pursuits. Extending the tenets of family-centered care (also described in Chapter 6) to bereavement support, interventional goals must be grounded in mutually beneficial partnerships among healthcare providers, patients, and family members. Several key elements of family-centered care can be applied to effective bereavement support services (adapted from Shelton and Stepanek, 1994): • Recognizing the family as the constant in the child’s life (for example, enabling parents to bathe and dress their child after death) • Facilitating family and professional collaboration (for example, including parents on bereavement and/or ethics committees) • Sharing complete and unbiased information between families and professionals in a supportive manner (for example, honest disclosure of

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•

•

• •

prognosis and shared decision making among child, family, and healthcare team) Recognizing and honoring cultural diversity, strengths, and individuality (for example, enabling culturally diverse rituals at the time of death) Recognizing and respecting different methods of coping (for example, offering multiple bereavement support services for families to choose from—such as memorial services, support groups, family library resources, and more) Encouraging and facilitating family-to-family networking and support (for example, facilitating parent and sibling support groups) Ensuring that services are flexible, accessible, and comprehensive in responding to diverse family-identified needs (for example, offering a variety of bereavement support services in the communities in which families live) PARENTAL GRIEF

It is understood that the relationship between a parent and child is the most intense of all human relationships—physically, emotionally, and socially—and that the death of a child appears to result in the most intense, complicated, and long-lasting grief (Rando, 1988). Rando suggests that it is necessary to understand parents’ grief in terms of their view of children as an extension of themselves and the hopes for the future that adults invest in their children. A major challenge to resolving parental grief is the assumption that the child will outlive the parent. The radical unnaturalness of a child’s death forces parents into an initial state of shock and denial (Shapiro, 1994). Parents who outlive their children often experience substantial “survivor guilt” and feelings of failure as a parent, for they have failed to protect their children from harm. Parents may hold themselves responsible for not producing a healthy child, passing on a genetic condition, or for any number of uncontrollable factors. In instances where the death was anticipated, parental grief may be lessened if the parents feel that they did “all they could” (Shapiro, 1994). In addition to the common reactions of shock and denial, some parents will experience intense anger. This anger may be directed toward the hospital or medical staff. Hostile behavior can make supportive presence by child life specialists and other staff particularly difficult, sometimes resulting in withdrawing of support or avoidance. The most important skills and behaviors of staff at this time are patience and empathy, recognizing that

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intense emotions are to be expected and that maintaining a supportive stance is more likely than withdrawal or confrontation to have the desired effect. SIBLING GRIEF Siblings typically spend more time together than with any other family member and exert a powerful influence in shaping one another’s identity (Davies, 2009). The death of a sibling signifies the loss of a playmate, a confidante, a rival, a role model, and a friend (Davies, 1995). It also results in profound changes in family dynamics and, at least for some time, parents may be so grief-stricken that they are emotionally unavailable to their surviving children. In a sense, the child not only loses a brother or sister but also his parents (Buckle & Fleming, 2011; Davies, 1995; Shapiro, 1994). According to Bowlby (1980), adult defenses almost always interfere with the child’s optimal mourning. This is due, he claims, to the fact that adults so often fail to provide children with complete and honest information about the death, along with their difficulty encouraging or coping with the child’s direct questions and emotional responses. Behavioral responses of children to the death of a sibling are widely variable and may include psychophysiological behaviors, such as aches and pains, sleeping difficulties, and changes in appetite. Increased anxiety, aggression, attention-seeking behavior, decreased ability to concentrate, social withdrawal and more are all seen as normal behavioral responses to the death of a loved one (Davies, 2009; Goldman, 1994; Wolfelt, 1996). Parents and other concerned adults can be reassured that virtually any response to the death of a loved one might be considered “normal” for a particular individual. If a child is engaging in behaviors that might harm himself or others, or if intense responses persist without softening over time, mourning might be considered “complicated” and warrant referral to a counselor (Wolfelt, 1996). While there are some similarities, it is understood that children grieve in some significantly different ways than do adults. Like adults, however, each child’s grief is unique. As discussed in the previous chapter, children’s cognitive development will influence their ability to understand the irreversibility, universality, and inevitability of death. In addition to the impact of development on initial understanding, as children age they will experience new perceptions and aspects of the loss. Generally speaking, children communicate more readily through play and other creative activities than through words. We can learn more about children’s understanding and response to events by watching and participating in their play or expressive arts than through conversation alone. Due to

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their limited capacity to tolerate emotional pain, children typically grieve in doses or sporadically. If at times the grieving child appears unaffected, such as playing or laughing with friends immediately following the funeral, this is seen as a normal defense mechanism. Children are likely to manifest grief on an intermittent approach-avoidance basis for many years (Rando, 1988; Webb, 2010). Attig (1995) points out that among a variety of vulnerabilities, children and adolescents are vulnerable to others’ intolerance of their grieving and to insensitive responses by peers. He explains that, “Not knowing what to do or say, peers may withdraw, avoid them, deal with them abruptly, make hurtful remarks, offer precious little comfort, or make them feel uncomfortably different or strange” (p. 54). Similarly, Wolfelt (1996) points out that children and teens may resist mourning due to unwanted feelings of being different from others. In addition, children, more so than adults, are reliant on those around them for help. Bereaved adults are able to seek support when it is not available, Wolfelt points out, while children who don’t have family or friends supporting their need to mourn are more vulnerable to long-term difficulties. In helping siblings grieve, and to help parents and others support a child’s grief process, it is important to understand the effects of age and cognitive development, cultural and familial influences, and other variables. We also must be aware of the significance of culture, religion, family and past experiences on our own beliefs and approaches to death and bereavement. Webb (2010) developed the “tripartite” model of assessing the bereaved child, which includes individual factors such as age or past experience; deathrelated factors such as the type of death; and factors related to family, social supports, religion and culture (Figure 1). These response variables should be incorporated into the child life specialist’s assessment of the child and family’s needs for psychosocial support and resources. It is felt that children can best manage their grief and continue healthy development if they are given accurate, factual information appropriate to their age and stage of cognitive functioning; if they are given ongoing freedom to express their many complex feelings about the illness and death; if they are included in family rituals such as the funeral; and if their caretakers continue to provide stable attention to their needs in a secure, consistent way (Shapiro, 1994; Wolfelt, 1983). How children are able to work through their grief is seen to depend primarily on how their parents and other adults behave and how able they are to reach out to and to support them. Child life specialists can offer guidelines and suggestions to parents and others who may be in a position to support a grieving child, such as extended family members, teachers and clergy (see Table 1 for suggested guidelines).

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Individual factors

Death-related factors

Age Developmental stage Cognitive level Temperamental characteristics

Type of death Anticipated/sudden “Timeliness” of death/preventability Degree of pain Presence of violence/trauma Element of stigma

Past coping/adjustment Home School Interpersonal/peers Hobbies/interest Global assessment of functioning DSM-IV-TR, Axis V

Contact with the deceased Present at death Viewed dead body Attended ceremonies Visited grave/mausoleum Expression of “good-bye”

Medical history Past experience with death/loss

Relationship to deceased Meaning of loss Grief reactions

Family/social/religious/cultural factors Nuclear family Grief reactions Extended family Grief reactions School Recognition of bereavement Peers Response to bereavement Religious affiliation Membership/participation Beliefs about death Cultural affiliation Typical beliefs about death Extent of child inclusion

Figure 1. Tripartite Assessment of the Bereaved Child Note: From Helping Bereaved Children (p. 33) by N. B. Webb, 2010, New York: Guilford Press. Copyright 2010 by Guilford Press. Reprinted by permission.

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• Spend time with children, explaining again and again what happened and answering their questions. • Share your own memories and feelings with children. • Use physical touch as a way of reassuring and comforting children. • Tell children how much the deceased child loved them. • Reassure children that it is not likely that anyone else (particularly the parents) will also die within the near future. • Encourage children to express their own feelings and thoughts in their own ways. • Continue to allow the child to have responsibilities around the house as a way of normalizing life. • Give simple directions or utilize reminder lists for things that need to be done (children, as well as adults, have a hard time remembering while they are grieving). • Encourage children’s involvement with their friends and peers. • Recognize that there are no magic words. Avoid saying, “I know how you feel.” • Avoid comparisons between the surviving children and the deceased sibling. • Let children know that feeling sad, angry, or scared is okay for adults and for children and that crying is okay (even for boys). • Allow laughter and fun times, which do occur in the midst of great sadness. Note: From “After a child dies: Helping the siblings” by B. Davies, in Hospice Care for Children (p. 212) by A. Armstrong-Dailey and S. Zarbock (Eds.), 2009, New York: Oxford University Press. Copyright 2009 by Oxford University Press. Reprinted by permission.

TASKS OF GRIEVING The concept that grief is expressed or experienced in stages has been explored and reinforced countless times in the literature. These widely accepted stages (denial, anger, bargaining, depression, and acceptance) were developed by Elisabeth Kübler-Ross (1969) based on interviews with 200 dying adults. Her research concluded that dying adults tended to progress through these stages as they advanced toward death. However, these stages were not intended to be universally applied to the grief process of individuals experiencing the death of a loved one, nor did the research conclude that to be the case. Tasks of grieving have been used in more recent conceptualizations of bereavement and in the goals of intervention, both for adults and for children. Thus, bereavement is not seen as falling into orderly stages or even into predictable phases. Instead, the grief journey can be seen as involving tasks to be accomplished. These tasks do not necessarily occur in a specific order, and can be reworked at various times depending on the needs and characteristics of the individual (Worden & Monahan, 2009).

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Early tasks are those that begin as soon as the child learns of the death. They involve the developing understanding of what has happened while protecting oneself against the full emotional impact of the loss. Middle-phase tasks include accepting and processing the loss, including the intense psychological pain. Late tasks include the integration of a new identity and continuing developmental progress (Wolfe & Senta, 1995). Incorporating several similar models (Fox, 2000; Wolfelt, 1996; Worden, 2009), the tasks of grieving include: 1. Understanding and acknowledging the reality of the death 2. Grieving or “feeling the feelings” associated with the loss 3. Commemorating or keeping alive the memory of the loved one; converting the relationship with the deceased from one of presence to one of memory 4. Adjusting to a life from which the deceased is missing; developing a new self-identity based on life without the loved one 5. Relating the experience of the loss to a context of meaning 6. Going on (e.g., going on with fun activities; developing loving relationships with others. This does not mean forgetting the person who’s gone.) These models all include cognitive tasks (for example, understanding what death is, understanding that a loved one is gone forever), emotional or affective tasks (grieving, feeling the feelings associated with loss, expressing emotions), and faith-based or future-oriented tasks (incorporating the loss in a way that allows personal growth and loving relationships with others, finding meaning, enjoying positive life-affirming experiences). Because these activities obviously take place over time, leading up to and following an experience with death, child life specialists in traditional hospital-based roles are rarely in a position to provide interventions that will support the sibling’s long-term progress toward reconciliation of their loss. They can, however, provide information and resources to family members, either before they’ve left the hospital or in follow-up communication. As illustrated in the previous chapter, interventions with siblings can support the child’s understanding of death and include initial grief expression activities. In some cases child life specialists are involved in ongoing bereavement support activities such as sibling support groups, memorial services, or educational sessions for extended family members. In these cases, activities and interventions should be consistent with the tasks of grieving identified above. Parents may struggle with decisions around how and to what extent to involve their other children in the circumstances surrounding their child’s death. This uncertainty will often lead parents to seek and respect the advice

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of the child life specialist. Webb (2010) advocates that children be permitted to have personal contact with the deceased, including at the time of death, viewing the body, attending ceremonies, and visiting the grave or mausoleum. Experts universally agree that children, even as young as preschool age, be prepared for all rituals and observations surrounding a loved one’s death and be given the choice to participate (Anderson, 1995; Grollman, 1995; Rando, 1988; Wolfelt, 2013). The rationale for this includes that: • Funerals serve to confirm and reinforce the reality of the death • Funerals are an important occasion in a family’s life (like weddings, graduations) and provide a framework for family support • Funerals are an important source of ritual, providing an opportunity to remember the loved one’s life and to say goodbye. As preparations were made to remove eleven-year-old Holly from life support following a motor vehicle accident, the child life specialist worked for several hours with her three siblings, ages four, six, and seven, preparing them to visit and say good-bye to their sister. Among the many conversations held with Holly’s insightful parents that day, the child life specialist suggested that the siblings be prepared for the funeral, including, for example, the presence of an open casket or the likelihood of people crying. Additional recommendations included that the siblings be accompanied by a close relative who could focus attention on their needs and remove any one of them from the room if need be, and that the siblings be given some role in the planning of the funeral. The parents and child life specialist discussed the funeral with the children, and they all agreed they wanted to attend. The child life specialist attended the memorial service at a nearby funeral home the following day. Upon arrival, the six-year-old sister ran to welcome the child life specialist and immediately asked her if she needed to go to the bathroom. A bit puzzled, the child life specialist reported that she did not, whereupon the child took her by the hand and showed her where the bathroom was located “just in case.” As it turns out, this was the “job” the child had chosen to perform during the visiting hours. The specialist was then escorted to the viewing room and was instantly approached by another sibling with a box of tissues, tearing several from the box and offering them to the specialist “in case you need to cry” (another “job”). All three siblings proudly took the child life specialist by the hand to stand beside the casket, pointing out several pictures and letters they had placed inside. The seven-year-old sister explained that she had chosen Holly’s clothes. The children’s parents ex-

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pressed much appreciation to the child life specialist for the time she had spent with the siblings and pride in their remarkable involvement in the entire process. CULTURAL AND RELIGIOUS INFLUENCES How individuals, families, and groups mourn—what they believe, feel and do—varies widely from person to person, family to family, and, certainly, culture to culture. There are approximately 200 countries worldwide, and thousands of distinctly different societies within—each with unique cultures, languages, religions, and much else (Rosenblatt, 2015). Different cultural traditions approach the following social and personal issues of bereavement differently: defining the relationship between the dead and the living, describing the nature of life after death, and enabling the social reconstruction of the ruptured relationships within family and community. Each culture defines the processes of bereavement and reconstruction in ways that are consistent with its beliefs regarding life, death, and an afterlife, emphasizing certain aspects of the broad range of human experience while diminishing the importance of others (Shapiro, 1994, p. 220). Cultural influences on how members of a family grieve include the meaning a death has for the group; the customs surrounding death and funerals; and family-life patterns, such as the lines of authority, the roles of various family members during periods of grief, and the amount of help available (Lawson, 1990). While there is considerable diversity within any ethnic or religious group, and it is important not to assume generalized cultural norms to the exclusion of individual beliefs and behaviors, it can be helpful to ascertain cultural influences on the bereavement process. A predominant culture of mourning in the United States, for example, is restrained and largely expected to be resolved quickly and quietly. For the most part, death is denied in this culture, not openly discussed and even considered a taboo subject. Public composure and what many experts would say is an unrealistically short mourning period represent “appropriate” or “expected” expressions of grief in much of American culture. On the contrary, individuals from other cultures may tend to express grief more openly or with more outward manifestation, such as some African Americans, Mexican Americans, and those from some Middle Eastern cultures. Rituals observed by members of certain ethnic or religious groups may challenge not only caregiver skills but also hospital policy and community resources. Various examples of death rituals can be found in the literature

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• A Hmong funeral may last up to ten days or more. Customs include bathing, dressing, the sacrifice and eating of a chicken and other animals, reciting of text, and prescribed roles for various family and community members (Bliatout, 1993). • Upon the death of a Muslim, Islamic tradition holds that the family must immediately turn the body to face Mecca; have someone sit nearby reading the Koran; close the mouth and eyes of the deceased and cover the eyes and face; straighten both legs and stretch both hands by the sides; announce the death immediately to all friends and family; and quickly bathe the body and cover it with white cotton (Gilanshah, 1993). • The Vietnamese strongly believe that death should occur at home, surrounded by family. Medical care may be sought at a hospital, but all efforts are made to get the person home before the moment of death (Truitner & Truitner, 1993). • There is a belief among Hindus that when death occurs, it is easier for the soul to depart if the body is placed on the floor (Laungani & Laungani, 2015).

and are as diverse as one would expect given the strong influence of culture on such practices. By reviewing the literature one may gain some knowledge of various beliefs and customs, but one cannot assume that every person who comes from a particular place, culture, or religion will believe or behave the same. The crucial task for any “helper” is to understand the cultural realities of the bereaved, not to fit what they do into a framework that makes sense to the helper (Rosenblatt, 2015). While recognizing the fact that differences exist within cultures as well as between cultures, and acknowledging the incomplete nature of these examples, Table 2 illustrates some culturally distinct customs related to death and mourning. As is the case in any work with children and families from a variety of ethnic, cultural, and religious backgrounds, the best way to determine cultural influences is to ask questions, listen, and adapt interventions to accommodate individual differences and needs. An openness and active acceptance of a broad range of reactions to death and grief behaviors will allow the child life specialist to respond appropriately and supportively despite individual or cultural differences. Literature, experts, and community resources can also support the healthcare team as they strive to provide culturally sensitive and appropriate care. CHILD LIFE SPECIALIST COMPETENCY DEVELOPMENT There is a good deal written in the bereavement literature suggesting caregiver skills and techniques helpful in working with grieving children

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(Brown, 2009; Goldman, 1994; Papadatou, 2009; Rando, 1984; Webb, 2010; Wolfelt, 1983; Worden, 2009). Most, if not all, of these skills are consistent with child life work in any setting and provide the basis for primary and advanced competency development.

Play Facilitation Skills A fundamental competency for child life specialists is the ability to provide opportunities for and facilitate “a variety of play, activities, and other interactions which promote self-healing, self-expression, understanding and mastery” (CLC, 2011, p. 11). As in supporting a child’s adaptation to the hospital setting or facilitating the expression of anger over a medical procedure, for example, play is a most appropriate means to support a young child’s grief work. Play and other creative activities provide opportunities for the expression of feelings in naturally therapeutic and developmentally appropriate ways. As children attending a bereavement support group played with PlayDoh®, mashing and pounding the clay to express feelings, Brian meticulously created a scene of cars, telephone poles, and ambulances. As the child life specialist sat closely by, supporting his animated reenactment, Brian smashed the modeling clay car and described his conception of the drunk driving accident that had taken his father’s life. The provision of play and other expressive activities to support children’s grief is primarily a facilitative role. As facilitator, it is generally the child life specialist’s role to allow and encourage the child to lead or direct the play. Using the example above, the child life specialist did not direct Brian to recreate his experience with Play-Doh; he determined for himself that this activity would support his own unique needs. She did, however, provide an emotionally safe environment for him to explore his experiences and feelings. Play also presents opportunities for the child life specialist to detect and clarify misperceptions or to therapeutically support the child’s grieving. As Maria played at the sand table, repeatedly burying a plastic female figure in the sand, she shouted down toward the buried figure, “Are you okay?! Can you breathe down there??” The discovery of Maria’s misconception allowed the child life specialist to clarify that when someone dies they no longer eat or breathe or hear. The sand table remained one of Maria’s favorite activities throughout her support group attendance.

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While therapeutic play and expressive arts facilitation skills are fundamental to virtually every child life specialist’s practice, the ability to design activities to support the grief process in particular presents some unique opportunities. Play therapy education and skills development are seen as greatly enhancing traditional child life training in working with children in crisis. A variety of specific activity ideas can be found in publications sited in this chapter, including Brown (2009), Helbert (2013), Lindholm and Schuurman (2007), Lowenstein (2006), and O’Toole (1989).

Communication and Therapeutic Response Skills Probably the most essential skills for supporting the grieving child, as can be argued for child life work in general, involve communication. The primary goals of communication are typically to convey information, and to receive information (including facts, feelings, perceptions). As child life specialists, we often think of our effectiveness as communicators with children to rely largely on our relationship building skills, our command of child development, and our abilities to convey information in a developmentally appropriate manner. Equally, if not more, important may be one’s active listening and therapeutic response skills. Therapeutic responses, also known as facilitative responses, involve a concentrated focus on the child’s inner process. During play the adult employs child-centered verbal and nonverbal responses such as reflection, tracking, returning responsibility (Landreth, 2002) and attending behaviors such as eye contact, tone of voice, rate of speech, facial expression, body posture, and proximity of involvement. These supportive techniques sustain the child’s own process, self-understanding, and mastery. Consider the following conversation with a grieving sibling during medical play: Child, dressed as a doctor, is engaged in medical play with a baby doll… The child life specialist is seated nearby, on the child’s level, and is attentive in posture, eye contact and tone of voice. Child: Quick, he needs an operation, his heart isn’t working! CLS: Sounds like an emergency . . . Child: Quick! His heart isn’t beating! Cut him open! CLS: The doctor is working very hard to help… Child: Nurse! Tell the parents their baby is very, very sick. CLS: ... the baby is very, very sick. Child: Get more doctors in here! Give the baby all the medicine we have!!

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CLS: The doctor thinks maybe more medicine and more doctors will help. Child: This is bad, it’s really bad. CLS: (nods silently) Child: I’m afraid it’s too late. The medicine is not helping. Nurse, tell the parents their baby is dead. CLS: The doctors tried very hard to help the baby, but the baby was very sick and he died.

Group Facilitation Skills Child life competencies include the ability to “design group process to meet individual needs” and to “utilize effective communication skills in the process of supporting children and families” (CLC, 2011, p. 7). The ability to effectively facilitate a peer support group, such as a cancer support group or a group for bereaved siblings, calls on a related but unique set of skills. Most child life specialists receive little to no formal training in areas such as group facilitation, phases in group development, or group interaction processes. Specialized training in the provision of bereavement support groups for children or for adults is highly recommended.

Advocacy and Collaboration Skills Another goal of child life specialists can be to respect and normalize the spectrum of children’s and family members’ grief responses and to provide support. Program development, interdisciplinary committee work, policy development, and the like are often necessary to create or maintain effective bereavement support systems for children and families. Child life specialists need to develop the skills necessary to participate as an active organizer, facilitator, or participant in such systems. Especially in small programs and in cases where formal systems (e.g., bereavement committees, palliative care services) do not exist, child life specialists may need to actively seek other staff members with similar goals or interests. While the need for major changes may seem daunting, manageable initiatives such as organizing a standardized process for condolence cards can be the beginning of wider systemic improvements or lasting program developments. One of the most difficult experiences for families was reportedly that of spending time in the hospital’s “viewing room,” located just outside the morgue on the second floor. With leadership from the child life specialist, a small work group was convened to determine ways in which the family’s experience could be improved. Ultimately, administrative sup-

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port and a modest resource allocation enabled redecoration of the area to include a rocking chair, wallpaper borders, boxes of “quality” tissues and artwork.

Self-Reflection Skills Effective caregivers need to be aware of their own feelings, beliefs, and values around illness, death and dying, and to process personal experiences (Rando, 1984; Sumner, 2009; Webb, 2010; Worden, 2009). Worden suggests that such self-reflection is essential for the caregiver to better understand the process of mourning, to reflect on what responses are likely to be helpful or not helpful, to identify unresolved grief issues in one’s own life, and to recognize one’s own limitations. This self-awareness also influences the child life specialist’s ability to develop therapeutic relationships within the context of effective, professional boundaries.

Implications for Training and Competency Development Wolfelt (1983) has developed a process model for helping children cope with grief whereby the “helper” brings his or her own knowledge, experience, personal traits and a genuine regard for children to the relationship with the grieving child. Wolfelt concludes that it is within the context of a caring relationship and the helper’s utilization of identified skills that the desired outcomes for the grieving child can best be achieved. The knowledge base suggested for working with grieving children is largely consistent with the training and expertise of child life specialists. For example, knowledge of child development, a family-centered approach, and skills in using play and other forms of communication with children are of paramount importance in effective bereavement support and are recognized competencies of the child life professional. Additional training and experience may be indicated in order for the child life specialist to understand common grief reactions of children and teens, to offer appropriate therapeutic responses, to facilitate the “tasks of grieving” discussed earlier, and to facilitate effective support groups. The adaptation and development of skills to meet the needs of special populations (e.g., developmentally delayed, culturally diverse, hearing or speech impaired) or special circumstances (e.g., suicide, murder, HIV, local or national tragedies) ought to be pursued. In addition, child life specialists should become aware of available resources and mechanisms for referral to other experts, such as in cases where suicidal thoughts or actions, chronic depression, eating disorders, drug or alcohol abuse, or inappropriate risk-taking behaviors are suspected.

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BEREAVEMENT SUPPORT SYSTEMS Several programs and practices can be identified that serve to support children and families, as well as the staff who work with dying or grieving children and families. In most cases child life specialists can and should be represented and involved in these supports, whether as leader, advocate, collaborator, teacher, or consumer. The development and availability of services for either families or staff members depend upon factors such as the number and types of deaths typical of the particular setting; the presence, number and expertise of certain professionals (as well as the level of interdisciplinary collaboration versus territoriality of these groups); the predominant philosophy and culture of the particular hospital or unit; and the allocation of resources. Over the last several years, child life services have been increasingly extended to emergency room and intensive care settings, including the NICU. Some hospitals now include a dedicated child life specialist or child life consultant on palliative care teams and home care services, while in other cases child life specialists are employed in organized community bereavement programs and support groups. The child life specialist role has evolved over time to the extent that the interdisciplinary team often relies heavily on their clinical skills in working with the sickest patients and their families, including regular and active participation at the time of death and leadership in unit-based or hospital-wide bereavement activities.

Family Support Systems In many pediatric healthcare settings, systems have been designed to support families at the time of a child’s death and/or for a time following the death. Typically, several disciplines are involved in such activities including nursing, pastoral care, social work, and child life. These practices vary widely, however, and often would benefit from further development, organization, or expansion. Examples include written information for families (such as information on autopsies, funeral planning, grief responses, community resources), legacy gifts or keepsakes (such as locks of hair, handprints or photographs), support groups, workshops, or memorial services, and follow-up mailings to families (such as sympathy cards, grief literature, invitations to hospital or community events). In addition to the facilitation of legacy-building activities prior to or at the time of death, child life specialists may be involved in activities pursued by community or family members to honor the memory of a child. Lewis and Hoy (2011) note that such activities are pursued in an attempt to establish the legacy of their loved one in the minds and hearts of current and

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future generations, and that these activities are “vital and necessary to many mourners as they negotiate the trajectories of their grief” (p. 319). Many organizations with such an intent have been created that benefit child life programs, either with financial support or in-kind gifts, at both the local and national levels. For example, the family and friends of a child hospitalized over the holidays conduct fundraising to provide gifts for hospital patients on an annual basis. In another case, a beloved teen is remembered by the designing and equipping of teen rooms in hospitals around the country. It is often the responsibility of the child life team, in collaboration with hospital foundations or others, to determine how best to facilitate these relationships. Although it can sometimes be challenging to manage expectations and resource commitments, particularly when grief is a primary motivator, a “win-win” scenario can often result. One of the most useful roles the child life specialist can play to support bereaved children and family members is the identification of appropriate resources. There are many excellent books, websites, brochures, and community resources available—too numerous and too variable for a family to navigate at a time of great shock and grief. The child life specialist should be familiar and up-to-date with the best resources to meet various needs, and provide for the timely and appropriate dissemination of such resources for families as well as other professionals. Short annotated bibliographies are essential if families are to easily take advantage of available resources. Having specific materials available, for example in a family resource library or as a timely gift, demonstrates a true commitment to sensitive, responsive care. The strength of a multifaceted approach to family support services is that the families, and even individuals within a family, can choose which type of service will best meet their unique needs. Some will participate in and appreciate an ongoing support group while others will more readily take advantage of an annual memorial service or an online support network. Depending on circumstances surrounding a death (or multiple deaths) and on available community resources, child life staff may be sought out to provide support to schools or other community-based groups. Such support may be initiated by the child life specialist or members of the healthcare team, as in the death of a school-age cancer patient, or by the school itself, such as in response to a school shooting or the death of a teacher. Proactive planning for such requests should be undertaken to determine response policies and necessary resources, including staff training. Again, child life skills may be consistent with the skills needed for such interventions and can result in very effective supports for teachers, parents, classmates, and others. There are some excellent resources available to support the child life specialist in addressing the needs of peers and school staff in the event of a catastrophic

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event or the death of a classmate (Chadwick, 2012; Fox, 2000; Gliko-Braden, 1992; Metzgar, 1995). Even in the case of limited staff resources or long-distance requests, appropriate print materials and other remote supports can be made available to schools and communities.

Staff Support Systems Equally important are the systems and programs in place to support staff in their skills development and stress management relative to working with dying or grieving children and families. As Edwards and Davis (1997) note, “In order to ensure that the quality of services remains at a high level, it is important to acknowledge the stresses and strains that are experienced by all staff working in this area. To enable them to cope effectively, they require appropriate support, ongoing supervision, and their further training needs should be identified and met” (p. 193). The stresses most commonly identified by healthcare professionals relate to witnessing children in physical and emotional pain and distress, a perceived lack of available resources (including time), and difficulties in staff communication and interrelationships (Edwards & Davis, 1997). Burnout, chronic grief, and staff turnover due to “vicarious traumatization” are recognized in the literature as common problems in end-of-life caregiving (Rando, 1984; Sumner, 2009; Webb, 2010; Worden, 2009). Ethical issues (such as the use of “do-not-resuscitate” orders and artificial life support) along with the perceived “unfairness” of a child’s death or feelings of vulnerability as a parent oneself, all compound the emotional stress of this type of work. It is essential that child life specialists and other team members have a healthy self-awareness of their loss experiences and grief responses, have opportunities and success in resolving their own grief, and maintain effective support systems. Supervision, debriefings, memorial services, support groups, stress management activities, organized employee assistance programs (EAP), and educational opportunities are all examples of useful strategies to improve and maintain a professional’s abilities to provide competent and effective care to children and families in highly emotional and challenging circumstances. Worden (2009) suggests three guidelines to avoid burnout: First, to know one’s personal limitations; second, to practice active grieving; and third, to know how to reach out for help. Sumner (2009) suggests several systems and personal strategies to manage the stresses common in hospice work: • Fostering optimal team functioning—whereby interdisciplinary team members trust and support one another, have clearly defined role boundaries, and are supported by hiring practices that promote effective team functioning

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• Successful orienting and precepting of new employees—characterized by immediate availability of support, mentoring, and supervision to develop confidence and self-sufficiency of new staff • Ongoing training and resources for experienced staff—including conflict resolution training, memorial activities, team meetings, and employee assistance programs. Some child life departments offer, “stress-buster” activities on a regular basis to assist staff in dealing with the intense emotions of working with dying children and other difficult experiences. For example, sessions may be facilitated by child life or interdisciplinary team members, such as the hospital bereavement coordinator, chaplain, art therapist or music therapist, and by outside experts. Staff voluntarily attend the sessions they feel will best meet their needs, with many of the activities designed to facilitate the expression of feelings, promote healthy coping, and generate an atmosphere of team support. Several child life departments have established on-call systems to make child life services available in off-hours or in areas not covered by a dedicated staff member. In one case, the biggest stressors reported by on-call specialists was their uncertainty and lack of comfort in being called to the bedside of an unfamiliar dying or deceased patient to assist with sibling support or in making keepsakes. In order to promote competence and reduce stress, a cabinet of key resources (Table 3) was created in the child life office and a series of in-services was developed including a “hands-on” workshop to practice the challenging art of hand molds.

Table 3 BEREAVEMENT SUPPORT SUPPLIES • • • • • • • • •

Materials for hand and/or foot molds A variety of papers, inks and brayers for hand and footprints Containers for locks of hair Digital cameras and photo printer Booklets and brochures for parents (such as What Will I Tell the Children by Bell and Esterling, 1986, and Sesame Workshop’s When Families Grieve, 2010) Memory boxes (pre-made boxes or blank craft boxes for siblings to decorate) Blank books or journals A variety of books for children about loss, death, grief, and feelings Grief support activity manuals

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FACILITATING PEER GRIEF IN THE HOSPITAL SETTING It is not uncommon for children and teens with similar conditions, such as cystic fibrosis or those awaiting organ transplants, to develop strong attachments to each other. As a result, there are emotional repercussions on the unit or in the clinic when a child dies (Edwards & Davis, 1997). Such instances often result in a complex combination of patient fears and concerns, staff member responses, family stress, and policy/procedure questions (e.g., around disclosure, confidentiality, or hospital-sponsored activities to recognize the death.) Several thirteen to seventeen-year-old female patients, all hospitalized on the cardiac unit for over six months developed strong friendships and a “three musketeer” reputation. All awaiting heart/lung transplants, they played together, attended school together, ate holiday meals together, and shared virtually every aspect of their lives with each other (as, to a large extent, did their parents). Their relationships with the child life specialist also grew strong and trusting. When Dorothy, the oldest girl, was transferred to the Cardiac ICU the girls expressed a great deal of fear and concern. Communication was facilitated by the child life specialist, including some not entirely successful advocacy on the specialist’s part that the healthcare team be honest with the girls about Dorothy’s condition. When Dorothy died two days later, the child life specialist and transplant psychologist were immediately called in to support the girls. Parents were called to come to the hospital and were assisted in telling their daughters the news. To put it mildly, the girls were devastated. Throughout the weekend the child life specialist supported the girls’ repeated questions about Dorothy’s death, while respecting confidentiality and maintaining contact with all the girls’ parents, including Dorothy’s. The girls spent hours decorating the playroom, one of Dorothy’s favorite activities, and pouring over digital photos taken over the past several months of the “three musketeers” enjoying child life activities and celebrating various holidays. With the sensitive support of the child life specialist, the girls used the digital photos to make each of them a memory book, all the while telling stories about their shared adventures and recalling Dorothy’s sense of humor. Because they would be unable to attend the funeral, the child life specialist assisted in plans with one of the hospital’s part-time chaplains to hold a memorial service in the girls’ room at the same time as Dorothy’s funeral two days later.

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BEREAVEMENT SUPPORT GROUPS It is suggested that one of the most effective models for facilitating children’s grief is the peer support group. The benefits of the support group approach are described by Wolfelt (2004) as: facilitating normalization, providing and receiving peer support; countering the sense of isolation; and creating a safe place to share thoughts and feelings. Comprehensive information on the facilitation of bereavement groups for children is beyond the scope of this chapter. However, the following program components should be considered: • A child- and family-centered approach is recommended. Whenever possible groups should be available by age/developmental level and type of death (e.g., sibling versus parent versus pet death) and be available for parents as well as for children. • The long-term nature of grief suggests that an open-ended support group model is preferable to scheduling a finite number of sessions. If ongoing weekly/biweekly sessions are not possible, children should be permitted to attend a succession of groups if desired or have access to other programs—e.g., grief camp, “reunion” activities with group members, or phone follow-ups. • Child-directed play and creative arts-based sessions are often most appropriate versus scripted, structured sessions addressing predetermined issues. • Facilitation by professionals (e.g., child life specialists, creative arts therapists, social workers) and/or volunteers with specific bereavement training is recommended. (Note: Children’s bereavement support group programs can be found in many communities. A particularly popular model is that created at the Dougy Center in Portland Oregon, and replicated in centers throughout North America and beyond.) A wide variety of common play, creative arts, and literature-based activities have proven useful in facilitating children’s grief work. Popular choices among children attending bereavement support groups include arts and crafts, medical play, puppet play, sand play, and physical or gross motor play. The following examples of actual support group sessions demonstrate the value of these activities to grieving children and will hopefully serve to generate additional ideas.

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The “Volcano Room” became Michael’s favorite place. Outfitted with punching bags, boxing gloves, pillows, and a large wall for drawing, Michael could be loud and aggressive. Initially, when Michael began to demonstrate out-of-control behavior during group, the child life specialist would take him to the Volcano Room to let off steam and express his strong emotions. Eventually, Michael himself recognized those times when he needed that particular outlet and would tell the staff or volunteers that he needed to have some “angry play time.” One of the group’s favorite storybooks was Badger’s Parting Gifts (Varley, 1984). The story follows a group of friends recounting the many gifts left behind by their deceased friend, Badger—gifts in the form of skills, memories, and stories. After reading and discussing the story as a group, the children set about drawing pictures about gifts their loved one had left behind for them. Luis drew a bicycle and a football, previously belonging to his brother, and a heart with a big crack down the middle. When telling about his picture, Luis described fun times riding bikes and playing football and said that sometimes his memories made his heart hurt. Another popular storybook about friendship prompted a lively discussion of new and trusted friends found at the support group. Later, during art time, Jodie made certificates for several friends and family members for helping her with her sad feelings. After weeks of starting each support group session with a book about feelings or death, seven-year-old Shawna enthusiastically accepted the idea of making a book to tell her own story. For two complete sessions, nearly four hours, Shawna painstakingly worked on the cover of her book, never getting to the pages inside. Upon completing the cover, she declared her book done and entitled it The Nightmare Before the Understanding. Shawna’s brother had committed suicide. SUMMARY The child life profession has grown and developed to represent a unique collection of skills and practices in support of the psychosocial needs of children and families in healthcare and other settings. These skills and practices are often called upon to address the important challenges faced by dying children, grieving families, and fellow patients of deceased children. While the experiences are sometimes daunting and frequently emotionally difficult, they can also provide for some of the most fulfilling and important work we as child life specialists might ever do.

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The fundamental skills of therapeutic relationship building and playbased communication, for example, have served to position child life specialists as effective team members in the end-of-life care arena. At a time when palliative and end-of-life care is receiving more attention and development than ever, both generally and in pediatrics specifically, opportunities and resources for child life specialists are likely to increase. In order to be effective in this work, child life specialists need to establish skills in direct care provision, collaborative program development, and self-preservation. REFERENCES Anderson, B. (1995). Do children belong at funerals? In D. W. Adams & E. J. Deveau (Eds.), Beyond the innocence of children: Factors influencing children and adolescents’ perceptions and attitudes toward death (Vol. 1, pp. 163–177). Amityville, NY: Baywood Publishing Company, Inc. Attig, T. W. (1995). Respecting bereaved children and adolescents. In D. W. Adams & E. J. Deveau (Eds.), Beyond the innocence of childhood: Helping children and adolescents cope with death and bereavement (Vol. 3, pp. 43–60). Amityville, NY: Baywood Publishing Company, Inc. Bell, J., & Esterling, L. (1986). What will I tell the children? Omaha, NE: University of Nebraska Medical Center Child Life Department. Bliatout, B. T. (1993). Hmong death customs: Traditional and acculturated. In D. P. Irish, K. F. Lunquist & V. J. Nelsen (Eds.), Ethnic variations in dying, death, and grief (pp. 79–100). Washington, DC: Taylor & Francis. Brown, C. (2009). Therapeutic play and creative arts: Helping children cope with illness, death, and grief. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (3rd ed., pp. 305–338). New York, NY: Oxford University Press. Buckle, J. L. & Fleming, S. J. (2011). Parenting challenges after the death of a child. In R. A. Neimeyer, D. L. Harris, H. R. Winkers, & G. F. Thornton, (Eds.), Grief and bereavement in contemporary society (pp. 93–106). New York, NY: Taylor & Francis. Chadwick, A. (2012). Talking about death and bereavement in school: How to help children aged 4 to 11 feel supported and understood. London: Jessica Kingsley Publishing. Child Life Council. (2011). Official documents of the child life council. Rockville, MD: Author. Davies, B. (2009). After a child dies: Helping the siblings. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (3rd ed., pp. 201–218). New York, NY: Oxford University Press. Davies, B. (1995). Toward siblings’ understanding and perspectives of death. In E. Grollman (Ed.), Bereaved children and adolescents: A support guide for parents and professionals (pp. 61–74). Boston, MA: Beacon Press.

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Edwards, M., & Davis, H. (1997). Counseling children with chronic medical conditions. London: British Psychological Society. Fox, S. S. (2000). Good grief: Helping groups of children when a friend dies. Boston, MA: New England Association for the Education of Young Children. Gilanshah, F. (1993). Islamic customs regarding death. In D. P. Irish, K. F. Lunquist & V. J. Nelsen (Eds.), Ethnic variations in dying, death, and grief (pp. 137–145). Washington, DC: Taylor & Francis. Gliko-Braden, M. (1992). Grief comes to class: A teacher’s guide. Omaha, NE: Centering Corporation. Goldman, L. (1994). Life and loss: A guide to help grieving children. Muncie, IN: Accelerated Development, Inc. Grollman, E. (1995). Explaining death to young children: Some questions and answers. In E. Grollman (Ed.), Bereaved children and adolescents: A support guide for parents and professionals (pp. 3–19). Boston, MA: Beacon Press. Helbert, K. (2013). Finding your own way to grieve: A creative activity workbook for kids and teens on the autism spectrum. London: Jessica Kingsley Publishers. Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillan Publishing. Landreth, G. L. (2002). Play therapy: The art of the relationship (2nd ed.). New York, NY: Taylor & Francis. Laungani, P. & Laungani, A. (2015). Death in a Hindu family. In C. M. Parkes, P. Laungani, & B. Young (Eds.), Death and bereavement across cultures (pp. 42– 60). New York, NY: Taylor & Francis. Lawson L. (1990). Culturally sensitive support for grieving parents. Maternal and Child Nursing, 15, 76–79. Lewis, L., & Hoy, W. G. (2011). Bereavement rituals and the creation of legacy. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society (pp. 93–106). New York, NY: Taylor & Francis. Lindholm, A. B., & Schuurman, D. L. (2007). After a death: An activity book for children. Portland, OR: The Dougy Center. Lowenstein, L. (2006). Creative interventions for bereaved children. Toronto: Champion Press. Maschi, T., & Brown, D. (2010). Professional self-care and prevention of secondary trauma. In N. B. Webb (Ed), Helping bereaved children: A handbook for practitioners (3rd ed.). New York, NY: The Guilford Press. Metzgar, M. M. (1995). What do we do with the empty desk? In D. W. Adams & E. J. Deveau (Eds.), Beyond the innocence of childhood: Helping children and adolescents cope with death and bereavement (Vol. 3, pp. 167–180). Amityville, NY: Baywood Publishing Company, Inc. O’Toole, D. (1989). Growing through grief: A K–12 curriculum to help young people through all kinds of loss. Burnsville, NC: Mountain Rainbow Publications. Papadatou, D. (2009). In the face of death: Professionals who care for the dying and the bereaved. New York, NY: Springer Publishing Company. Rando, T. (1984). Grief, dying, and death: Clinical interventions for caregivers. Champaign, IL: Research Press Company.

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Rando, T. (1988). How to go on living when someone you love dies. New York, NY: Bantam Books. Rosenblatt, P. C. (2015). Grief in small scale societies. In C. M. Parkes, P. Laungani, & B. Young (Eds.), Death and bereavement across cultures (pp. 151–165). London: Taylor & Francis. Sesame Workshop. (2010). When families grieve: A special guide for parents and caregivers. Retrieved from Sesame Street website http://www.sesamestreet.org /content/grief Shapiro, E. R. (1994). Grief as a family process: A developmental approach to clinical practice. New York, NY: Guilford Press. Shelton, T. L., & Stepanek, J. S. (1994). Family-centered care for children needing specialized health and developmental services. Bethesda, MD: Association for the Care of Children’s Health. Sumner, L. H. (2009). Staff support in pediatric hospice care. In A. ArmstrongDailey & S. Zarbock (Eds.), Hospice care for children (3rd ed., pp. 240–265). New York, NY: Oxford University Press. Towne, M. (2001). The role of child life in pediatric end of life care. In Child Life Focus 3(3), 1–4. Rockville, MD: Child Life Council. Truitner, K., & Truitner, N. (1993). Death and dying in Buddhism. In D. P. Irish, K. F. Lunquist, & V. J. Nelsen (Eds.), Ethnic variations in dying, death, and grief (pp. 125–136). Washington, DC: Taylor & Francis. Varley, S. (1984). Badger’s parting gifts. New York, NY: Lothrop, Lee & Shepard Books. Walsh, F., & McGoldrick, M. (2004). Loss and the family: A systemic perspective. In F. Walsh & M. McGoldrick (Eds.), Living beyond loss: Death in the family (2nd ed.). (pp. 31–26). New York, NY: W. W. Norton & Company. Webb, N. B. (2010). Assessment of the bereaved child. In N. B. Webb (Ed.), Helping bereaved children: A handbook for practitioners (3rd ed., pp. 22–47). New York, NY: The Guilford Press. Wolfe, B. S., & Senta, L. M. (1995). Interventions with bereaved children nine to thirteen years of age: From a medical center-based young person’s grief support program. In D. W. Adams & E. J. Deveau (Eds.), Beyond the innocence of childhood: Helping children and adolescents cope with death and bereavement (Vol. 3, pp. 203–227). Amityville, NY: Baywood Publishing Company, Inc. Wolfelt, A. D. (1996). Healing the bereaved child: Grief gardening, growth through grief and other touchstones for caregivers. Fort Collins, CO: Companion Press. Wolfelt, A. D. (1983). Helping children cope with grief. Bristol, PA: Accelerated Development. Wolfelt, A. D. (2013). Finding the words: How to talk with children and teens about death, suicide, funerals, homicide, cremation, and other end-of-life matters. Fort Collins, CO: Companion Press. Wolfelt, A. D. (2004). The understanding your grief support group guide: Starting and leading a bereavement support group. Fort Collins, CO: Companion Press.

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Worden, J. W., & Monahan, J. R. (2009). Caring for bereaved parents. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (3rd ed., pp. 181– 200). New York, NY: Oxford University Press. Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th ed.). New York, NY: Springer Publishing Company.

Chapter 14 CHRONIC ILLNESS AND REHABILITATION M ELISSA H ICKS AND KATHRYN DAVITT INTRODUCTION ith advances in modern medical science, many children with chronic illnesses and traumatic injuries are living longer lives. Diseases that were once considered terminal are now viewed as more chronic in nature, with longer life expectancies for children diagnosed with diseases such as cancer, cystic fibrosis and AIDS. The distinction between chronic and acute illness is now more difficult to make. In general, there has been a shift in focus from elimination of the condition as an acute illness, to adjustment and adaptation to the illness, treatment and side effects. Further blurring the distinction between chronic and acute conditions, some acute illnesses lead to chronic conditions, and many chronic illnesses have acute phases, such as exacerbation of symptoms and periodic prophylactic medications or procedures. It is estimated that the prevalence of children in the United States living with chronic illness is between 10 and 30 percent depending on the definition of chronic illness. In a 2011–2012 National Survey of Children’s Health, parents of 23.6 percent of children reported that they had been told by a healthcare provider that their child currently had at least one of a list of 18 chronic health conditions. Of these children, 40.7 percent had more than one condition (U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 2014). The 2009-2010 National Survey of Children with Special Health Care Needs reported that overall, 15.1 percent of children in the United States, or 11.2 million children, have special healthcare needs, and 23.0 percent of households with children include at least one child with a special healthcare

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need (U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, 2013). Typically, chronic illnesses are characterized by a duration of three months or longer or those that necessitate a period of continuous hospitalization for more than one month. Often these illnesses are present for an individual’s entire life, as in the case of asthma, diabetes, and sickle cell disease. Children may also present with illnesses that require extended treatment, may have an uncertain outcome, and/or may involve degenerative processes, conditions such as cancer, cystic fibrosis, renal and heart disease or HIV. It is also becoming more prevalent for youth to be diagnosed with conditions that were often considered those of adulthood, such as multiple sclerosis, stroke and lupus. The most prevalent diagnoses associated with inpatient rehabilitation programs are traumatic brain injury (TBI), spinal cord injury (SCI), cerebral palsy (CP), spina bifida, bronchopulmonary dysplasia (BPD), cerebrovascular accident (CVA), burns, orthopedic problems, and neurological problems, with TBI being the most common and disabling of these injuries (Edwards, Hertzberg, Hays, & Youngblood, 1999). In many cases, children and adolescents in rehabilitation programs were developing typically prior to the precipitating event that created the need for rehabilitation programming. The children and youth served by acute rehabilitation programs often have experienced some type of trauma, either an accident or catastrophic illness. The importance of this area of medicine is likely to grow as technology is increasingly capable of saving lives and enhancing the recovery of those who survive (Edwards et al., 1999). Rehabilitation and chronic illness present many challenges to children and families. Some of these pertain to both chronic illness and care in rehab settings, while others are unique to one or the other. Whether facing chronic illness or rehabilitation, children and youth confront developmental challenges throughout their lifetime. The child or teen may have limited contact with peers and increased contact with adults, presenting additional complications for social development. They confront issues of pain, grief, loss and complicated emotions. They need ongoing education related to their condition. They face extended, and possibly repeated, hospital admissions and frequent outpatient specialty clinic visits. Rehabilitation stays are often more continuous (two weeks to a year, with two months being an average stay), while admissions for chronic illness are more repetitive. In any case, the challenge becomes coping with the symptoms of the condition and the psychosocial sequelae. Psychosocial support becomes an important part of the child and family’s healthcare regimen, with a focus on the needs of the fam-

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ily members. This is more easily provided in the inpatient setting, but is becoming more readily available in the outpatient setting as well. This chapter will describe some of the challenges faced by children with chronic illness and/or rehabilitative needs and by their families. Throughout this chapter, the term “chronic condition” will be used to refer to both chronic illness and rehabilitation. Information presented in this chapter will not pertain to one particular diagnosis, but can be generalized to children with a variety of conditions, as long as the needs of the individual are the primary focus. The chapter will explore factors affecting adjustment and highlight practices that the professionals can utilize to work with the child and family to address their psychosocial concerns. It concludes with a focus on the unique professional issues that need to be evaluated and addressed when working with this population of individuals. LITERATURE REVIEW The impact of chronic illness on children has been well documented. This literature highlights both the potential mental health risks related to chronic illness, as well as the psychosocial resilience displayed by children and families coping with such conditions. In recent years, perspectives on chronic conditions have shifted from models of maladjustment to models considering the individual and familial factors that promote adjustment— toward a view of typical families dealing with atypical circumstances. This has led to intervention focused more on growth and resiliency (Orbuch, Parry, Chesler, Fritz & Repetto, 2005; Webb, 2009; Hamall, Heard, Inder, McGill & Kay-Lambkin, 2014). This type of intervention can allow families to build on their strengths in the face of challenging situations. Chronic illness in one family member has significant impact on all members of the family. Therefore, attention to the unique psychosocial needs of all family members must be considered (Cohen, 1999; Conoley & Sheridan, 1996; Thompson & Gustafson, 1996; Verity, 1995; Brown, Daly & Rickel, 2007; Bellin & Kovacs, 2006; Hamama, Ronen & Rahav, 2008; Alderfer, Cnaan, Annunziato & Kazak, 2005; van Oers, Haverman, Limperg, van Dijk-Lokkart, Maurice-Stam & Grootenhuis, 2014; Moreira, Frontini, Bullinger & Canavarro, 2014). Additionally, focus has been placed on the importance of family functioning as it relates to the protective factors associated with adjustment to chronic illness (Silva, Crespo & Canavarro, 2014; Missotten, Luyckx & Seiffge-Krenke, 2013). This focus also highlights and supports the notion of psychosocial support and care for the whole family (Mendes, Crespo & Austin, 2016; Ferro & Boyle, 2015; Orbuch et al., 2005; Mullins, Molzon, Suorsa, Tackett, Pai, & Chaney, 2015).

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The potential for adjustment difficulties is inherent in children with chronic illness. Their quality of life can be significantly impacted in relation to school, peers, hobbies, and interests (Heath et al., 2011). Challenges among children with chronic illnesses include difficulty with peers and deficits in social competence (Martinez, Carter & Legato, 2011), internalizing problems such as depression and anxiety (Ferro & Boyle, 2015), externalizing problems such as behavioral difficulties (Till, Udler, Ghassemi, Narayanan, Arnold, & Banwell, 2012), and concerns related to body/selfimage, dependency, and withdrawal (Thompson & Gustafson, 1996). In addition, social and emotional issues are prevalent among children in rehabilitation settings, including loneliness, decreased self-esteem, and post-traumatic stress disorder (Abdullah, Blakeney, Hunt, Broemeling, Phillips, Herndon, & Robson, 1998; Levi, Drotar, Yeates, & Taylor, 1999; Mulcahey, 1992). These responses are often noted for several years after injury or illness (Godfrey, Knight, & Partridge, 1996). Others indicate that risks of emotional difficulty may be positively associated with age (Frank et al., 1998). Older children have the cognitive capacity to understand the implications of the illness and are keenly aware of the impact on peer relationships and other developmental tasks. Younger children appear to have more difficulty with physical tasks and school performance (Eiser, 1990). Historically, several models emphasize adaptation to chronic illness, recognizing that chronic illness is a potential stressor in the lives of children and families, that adaptation is continuous over time, and that coping strategies are important in facilitating adaptation (Moos & Tsu, 1977; Pless & Pinkerton, 1975; Thompson & Gustafson, 1996; Wallander & Varni; 1992). This early work has laid the foundation for models of support and intervention. Recently, much attention has been given to the resiliency of children and families in the face of chronic illness (Webb, 2009; Hamall et al., 2014). Studies in support of this perspective note the hardiness of children and identify few risks to mental health associated with their chronic conditions (Noll, Garstein, Vannatta, Correll, Bukowski, & Davies, 1999; Soliday, Kool, & Lande, 2000). For example, Soliday et al. (2000) found no differences in behavior between children with kidney disease and their healthy peers. They concluded that a positive family environment and psychosocial support offered by treatment teams might serve as buffers to stress. In addition, Erkolahti and Ilonen (2005) found that students with diabetes and rheumatoid arthritis showed equal academic achievement to their healthy peers. While conceptualizations in the models may vary, all models acknowledge the importance of one’s developmental level on adjustment to chronic illness (Brewster, 1982; Edwards & Davis, 1997; Sourkes, 1995; Thompson & Gustafson, 1996). Other variables reported to influence adjustment are social

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support, attitude toward illness, coping skills of the child, service support, characteristics of the condition and its potential to compromise developmental tasks (Canter, Wu, Stough, Parikshak, Roberts & Amylon, 2015; Edwards & Davis, 1997; Thompson & Gustafson, 1996). Family variables such as concurrent stresses, family relationships and parental stress also have significant influence on adjustment to chronic childhood illness (Edwards & Davis, 1997; Logan, Radcliffe & Smith-Whitley, 2002; Soliday et al., 2000; Thompson & Gustafson, 1996; Till et al., 2012; Moreira et al, 2014; Silva et al., 2014). Psychosocial interventions for children and families to support their coping with chronic illness have proven effective (Bauman, Drotar, Leventhal, Perrin & Pless, 1997; Castes, Hagel, Palenque, Canelone, Corao, & Lynch, 1999; Beale, 2006). Interventions have targeted family members’ understanding of the illness and treatment (Brewster, 1982; Edwards & Davis, 1997; Holzheimer, Mohay, & Masters, 1998; Thompson & Gustafson, 1996; Kieckhefer, Trahms, Churchill, Kratz, Uding & Villareale, 2014; Bradlyn, Beale & Kato, 2003) and their development of coping skills (Delameter et al., 2001; Thompson & Gustafson, 1996; Hamall et al., 2014; Grey 2011). Effective techniques for facilitation of coping have included play therapy ( Jones, 2002), bibliotherapy (Amer, 1999), therapeutic storytelling (Freeman, 1991), and art therapy (Fenton, 2000), as well as efforts to normalize the distress associated with chronic conditions and to minimize the impact on typical childhood experiences (Delameter et al., 2001; Thompson & Gustafson, 1996). The value of problem-solving skills has also been studied in relation to coping with a chronic illness (Heermann & Willis, 1992; Varni, Katz, Colegrove, & Dolgin, 1993; Grey, 2011). Many studies have addressed the importance of using designated strategies to cope with pain, symptom management and treatment-related procedures. Some of this work focuses on cognitive behavioral techniques (Ellis & Spanos, 1994; Ross & Ross, 1984), or cognitive coping strategies, such as selftalk and thought stopping (Ross & Ross, 1984), while other research focuses on the use of relaxation and imagery techniques as pain management strategies (Castes et al., 1999; Gil, Anthony, Carson, Redding-Lallinger, Daeschner, & Ware, 2001). There are unique responses to pain in the neurologically-impaired population. Staff working with patients with cognitive deficits require additional education and training to support these children and adolescents (Lahz & Bryant, 1997; McGrath, Rosmus, Campbell, & Hennigar, 1998; Oberlander, Gilbert, Chambers, O’Donnell, & Craig, 1999; Oberlander, O’Donnell, & Montgomery, 1999). Social support interventions have proven beneficial in facilitating coping with chronic illness. Activities such as support groups (Greco, Pendley,

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McDonell, & Reeves, 2001; Stauffer, 1998), school re-entry programs (Canter & Roberts, 2012; Bishop & Gilinsky, 1995; Hicks & Lavender, 2001; Mulcahey, 1992; Rynard, Chambers, Klinck, & Gray, 1998; Yim-Chiplis, 1998; Ylvisaker et al., 2001), camps for children with chronic conditions (Briery & Rabian, 1999; Hicks & Lavender, 2001; Wu, Prout, Roberts, Parikshak & Amylon, 2011; White, Moola, Kirsh & Faulkner, 2016; Odar, Canter & Roberts, 2013), social skills training and support (Martinez et al., 2011) and filial therapy (Glazer-Waldman, Zimmerman, Landreth, & Norton, 1992; Tew, Landreth, Joiner & Solt, 2002) are valuable. Additionally, the value of support for all family members has been investigated (Baker, 2002; Eiser, 1990; Hostler, 1999; Seiffge-Krenke, 2002; Tew et al., 2002). Research has also considered the question of adherence to medical regimes (Delameter et al., 2001; Holzheimer et al., 1998; Pendley, Kasmen, Miller, Donze, Swenson, & Reeves, 2002; Bucks, Hawkins, Skinner, Horn, Seddon & Horne, 2009; Graves, Roberts, Rapoff & Boyer, 2010; Grey 2011; Silverstein, Fletcher & Moylan, 2014). Thompson and Gustafson (1996) indicate that several factors may impact adherence, including the degree to which the illness and treatment interferes with identity, competency and autonomy, and the chronicity and complexity of the treatment regimen. The authors advise that adherence interventions should focus on the provision of knowledge, acquisition of procedural skills, and on a mutually negotiated treatment plan between the family and the healthcare team. Family routines and rituals (Fiese & Wamboldt, 2000), parenting styles (Davis, Delameter, Shaw, LaGreca, Eidson, Perez-Rodriguez, & Nemery, 2001) and peer support (Pendley et al., 2002) also have positive effects on adherence, supporting the notion that effective intervention should take place within the context of the family. ADJUSTMENT TO CHRONIC CONDITIONS When a child and family are given the diagnosis of a chronic condition, life changes forever. Families may now view their lives in two stages—before the diagnosis and after. The very nature of a chronic condition forces families to adjust to the course of the illness or condition, as well as to new challenges presented at each developmental stage in the child’s and family’s life. Reactions to the diagnosis vary and are often fluid in nature. Emotions such as shock, denial, anger, guilt and sadness are experienced. Normal routines are disrupted, which can be unsettling for children who gain a sense of security and safety from predictability. Loss is experienced in many ways. Feelings of shame and embarrassment may surface as a reaction to feeling different from peers. Children coping with chronic conditions have also

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reported feelings of isolation, loneliness, and stress related to separation. They may become fearful about what will happen next, including fears related to leaving the watchful eye of the medical team in the hospital or clinic. As children and youth who experience these feelings are not always able to express them verbally, the child life specialist is obligated to find appropriate ways for them to express their concerns and feelings. Potential techniques will be explored later in this chapter. Children with chronic conditions must adjust to much that is new. They are forced, in many cases, to cope with pain related to the disease process itself or procedures necessary for diagnosis or treatment. They must cope with changes in routines, meeting many new people associated with the treatment team, altered body image, managing feelings, and potentially more dependency on family members. They must accommodate medical treatments and appointments into their schedule, which can have enormous impact on peer interaction. They must be prepared to be flexible as their medical care and technology advances. And finally, they must cope with an uncertain future. Families must make adjustments as well. The role played by each individual in the family may change. Parent burnout, family imbalance, fear and worry, overprotection, and depression in parents and family members may be seen (Singer, 1999). Each member may have responses to the chronic condition that are unique. Siblings are often forgotten in the crisis of diagnosis or at other times throughout the course of treatment. Brothers and sisters may experience anger, guilt (if there are misperceptions related to cause of the illness), and jealously due to the increased attention and gifts given to the child who is ill. Well children and their daily lives may also be indirectly affected by changes in family finances due to the chronic condition, a situation that is often overlooked. If there is a genetic component to the particular disease, or if there are misperceptions related to the cause of the illness, siblings may fear they will also contract the condition or that they will pass it along to their children. While adapting to the diagnosis, several phases may be experienced. Fennell (2001) characterizes these phases as crisis, stabilization, resolution and integration, each with its own tasks related to adjustment. These phases are fluid and may be revisited numerous times. For example, patients and families living with chronic conditions will revisit these stages at each transition or major milestone in a child’s life (Martin, 1988). Throughout each of the phases, the goal is adaptation to the illness. Adaptation denotes the sense of a new normal, rather than the complacency of accepting the illness It is not uncommon to see post-traumatic stress among children in the rehabilitation setting. Although some feel that children with traumatic brain

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injury are protected from this condition by the post-injury amnesia that many experience (Warden et al., 1997), the literature is inconclusive on this topic (Warden et al., 1997; Levi et al., 1999) with some now supporting the view that these children do experience post-traumatic stress related to the medical care they receive. Also at risk for this disorder are children or adolescents who, although not injured, may have been involved in or witnessed the accident of a sibling. In addition, children with chronic illnesses such as cancer can experience PTSD when treatment has been completed (Goodheart & Lansing, 1997; Keene, Hobbie & Ruccione, 2000). There is also an extensive body of knowledge on “pediatric medically-induced trauma.” For example, a child diagnosed with muscular dystrophy may have endured multiple lab draws, a muscle biopsy, an EMG and an extended period of unknown, coupled with loss of strength, before they ever receive a diagnosis. Each of these diagnostic tests could add to traumatic stress. These experiences should be considered while providing trauma-informed care. Additional information on this topic can be found in the Healthcare Toolbox created by the National Child Traumatic Stress Network (healthcaretoolbox .org; retrieved 2017). While there are limited studies specifically identifying the impact of particular factors on adjustment, many authors have identified some general factors to be considered (Edwards & Davis, 1997, Thompson, Gustafson, Gil, Godfrey & Murphy, 1998). These factors can be divided into three categories: condition-related factors, child characteristics, and family characteristics. The universal factors addressed in the previous sections of this chapter hold true for most chronic conditions. However, much of the work of child life is related to the specific procedures or treatments to which the child is exposed. Therefore, it is important for child life specialists to become well versed in the particular area in which they are practicing. Identifying the challenges and concerns for children facing chronic conditions leads to sounder psychosocial practice. The following case studies highlight the unique implications of particular chronic conditions that may impact the child or adolescent. When reading them, reflect on the specific issues and concerns the child must confront related to the particular condition and on possible interventions that would be helpful. Marco is a 17-year-old youth who experienced a traumatic brain injury in a high speed car accident in which he was the driver. He had planned to attend college on a football scholarship; now, he is not allowed to participate in contact sports for at least a year. Upon his return to school he struggles socially because he is not involved in the same activities, has difficulty initiating conversation or activities, and is very impulsive—often

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saying exactly what he is thinking. Once an A/B student, he now struggles academically and has to attend special classes for his primary subjects. His mother is very concerned and talks frequently about the changes as she drives him to and from school. He often talks about how much he wishes he could be more independent, like before the accident. Cassie is a nine-year-old who has been coping with sickle cell disease since birth. She is able to verbalize the name of her illness and the physical aspects of her disease, but cannot explain the reason for the physical effects or offer strategies for decreasing her pain or possibly preventing a sickle cell crisis. Education regarding the illness has been given to her parents by the medical team, and her father has the disease as well. Cassie has had two strokes as a result of her disease. She is frequently admitted to the hospital for acute chest crises and for pain in various parts of her body. Occasionally, staff will verbalize doubt regarding the validity of her pain. Stephen is a five-year-old boy newly diagnosed with acute lymphocytic leukemia. Always a very healthy boy, he had just started kindergarten when his parents noticed persistent flu-like symptoms and bruising. From his pediatrician’s office he was immediately sent to a children’s hospital where he encountered many invasive procedures and unfamiliar people. He was admitted directly to the hospital to begin a two-and-a-half-year protocol of chemotherapy. During the lengthy treatment, Stephen had many hospital visits and frequent bone marrow aspirates and spinal taps to assess the effectiveness of treatment. He had bouts of nausea, lost his hair due to the chemotherapy and was required to stay home from school frequently when his blood counts were low and he was extremely susceptible to infection. As illustrated by the case examples, it is important to address the stressors unique to each individual diagnosis. These elements will drive the support services and therapeutic interventions that are offered. Many aspects of an illness can influence the adjustment of the child and family. The severity of the disease is one of these factors. The perception of the severity by the child and family is more important than the actual physical criteria (Edwards & Davis, 1997). According to Dolgin, Phipps, Harow, and Zeltzer (1990), it is the quality of health, not the particular diagnosis, that influences parents’ behavior and distress. Conditions involving the central nervous system may also lead to adjustment difficulties (Thompson & Gustafson, 1996). Chronic conditions may or may not have visible signs of

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the disease process. Children with visible signs of disease can cope effectively with their condition, provided those people around them respond in a supportive manner. The invisible illnesses, such as diabetes, sickle cell disease, traumatic brain injury and asthma, may present coping challenges because support may not be readily available. Other illnesses, such as HIV and hepatitis, may present challenges related to issues of disclosure. The families may not want others to know about the child’s illness and are, therefore, reluctant to take advantage of the support systems available to them. The age at onset of the disease may also impact adjustment. For example, older children may have a more difficult time adjusting as they are more cognitively aware of the disruption of normal activities and developmental tasks. They also may have a more mature understanding of the illness and its potential consequences. All chronic conditions present a degree of unpredictability. However, some may have more unpredictable courses. The more unpredictable the course of the illness, the more likely the child and family may experience difficulty adjusting. Finally, the nature of the treatment must be considered. The more the treatment disrupts normal developmental tasks and activities, the greater the potential for coping challenges. Frank et al. (1998) contend that adaptation to chronic illness is more dependent on individual characteristics than on common characteristics of the illness, suggesting the importance of attention to the individual characteristics of the child, including developmental level. Progress at each level of development can be impeded by the diagnosis, treatment and progression of the illness. Attention should also be paid to the predictable, developmental changes in children’s understanding of their conditions (Bibace & Walsh, 1980; Brewster, 1982). It is important to acknowledge the perceptions the child may have based on his or her developmental level and match this with information given. Failure to do so may lead to misperceptions and adjustment difficulties. As stated previously, adjustment is a continuous process and will be approached differently by children at each stage based on their developmental capacity. Throughout their lifetime, children will be forced to reprocess the impact of their illness within the framework of their understanding and developmental level at that particular time. Other characteristics of the child that may impact adjustment are the child’s protective factors (Edwards & Davis, 1997; Brown et al., 2007). These are qualities such as confidence, high self-esteem and self-reliance. Attitude toward illness has also been reported to have significant impact on adjustment (Briery & Rabian, 1999; Canter et al., 2015). In most cases, knowledge of coping skills already in place and ready to be deployed by the child and

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family during this crisis time is extremely helpful to the child life specialist. Capitalizing on these positive individual assets is important for intervention. The degree to which parents successfully cope with an illness also has significant impact on the child (Frank et al., 1998; Soliday et al., 2000; Hamall et al., 2014). Children take cues from their parents and respond accordingly. Families that exhibit open communication related to the condition may cope more effectively, as a trusting relationship is maintained. Decreased family conflict, improved family closeness and improved expression of emotions are related to more positive adjustment to chronic childhood illness (Thompson & Gustafson, 1996). Canam (1993) has summarized the goals of family adaptation as the following: • • • • • •

Accept the condition and manage it on a daily basis Meet normal developmental needs Cope with ongoing stress and crisis Manage feelings Educate others Establish support systems

These goals are achievable, for many families do adjust and cope effectively with chronic childhood illness. The work of the child life specialist can be extremely supportive and valuable in reaching each of the goals. When assessing a child and family’s adjustment, it is important to evaluate their knowledge of the disease, their role in treatment, their ability to integrate into normal routines and their available support systems. These tasks and the possible skills exhibited to evaluate the accomplishment of the task are described in Table 1. For each task indicated, the clinician should evaluate whether or not the skills indicated below the task are exhibited by the child and family. Skills that are not exhibited should be incorporated into the team’s goals. STATE OF THE ART PRACTICE

Promoting Developmental Tasks Children diagnosed with a chronic condition are put into situations very different from their peers. In some ways, coping with a chronic condition forces children to grow up faster, and in other instances, parents may maintain a sense of dependency in their child. Child life specialists are in the

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Chronic Illness and Rehabilitation Table 1 PSYCHOSOCIAL ADJUSTMENT EVALUATION POINTS Task

Knowledge of Disease

Role in Treatment

Skills Exhibited

Can the child and family, on a developmentally appropriate level . . .

Do the child and family . . .

Name the disease

Use coping skills effectively

Describe how disease works

Participate in self care as appropriate

Describe effects of disease Identify how the disease is treated Discuss possible side effects of treatment Describe the etiology of disease Understand the future expectations related to the illness

Understand the need for treatment

Receive opportunities for realistic choices Know hospital routines Adhere to treatment regimen Include the child in decision making as developmentally appropriate Demonstrate transitional skills at a developmentallyappropriate level

Integration into Normal Routines

Support Systems in Place

Is/Are . . .

Is/Are . . .

The child attending school when possible

Social support services, such as camps and support groups, engaged as necessary

An appropriate education plan devised for returning student Siblings included

Medical information communicated clearly (misperceptions clarified)

Roles in family maintained

Extended family educated about condition

Open communication exhibited in family

Peers/community educated about condition

Limits and discipline maintained and consistent

Opportunities for emotional expression and validation available

Roles, environment and/or activities modified as needed

Important relationships outside the family maintained

Roles in community maintained

unique position to refocus attention on normal developmental tasks. While important for all hospitalized children, children with chronic conditions may be at particular risk because the condition frequently spans multiple devel-

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opmental levels. The child life specialist has a responsibility to promote developmental tasks at each stage. The impact on developmental tasks will need to be reassessed frequently as the child matures. Regression is a common reaction among children of all ages when confronting chronic conditions. The regression may be related to the stresses of hospitalization and treatment or to the effects of their condition on cognitive development. On the other hand, many children and youth say that their experiences make them feel much older than their peers (Mulcahey, 1992) and that they are forced to relinquish the “invincibility fable” that is characteristic of adolescents at an early age. Rehabilitation creates its own set of “unique developmental milestones” (Molnar & Alexander, 1999, p. 30). These include things such as first wheelchair or AFO (ankle/foot orthotic), first time to self-catheterize, or first time to cut food using one hand. Families need education on these milestones.

Mastery Mastery is of great significance for the developing child and opportunities to achieve are important. Potentially, the child with a chronic condition can achieve a sense of mastery through scholastic, physical, or creative accomplishments, by accepting household responsibilities, and through controlling their behavior (McCollum, 1975). Child life specialists can focus on areas where the child can succeed and can empower the child or adolescent to be successful through preparation, clearly identifying expectations, reinforcing the use of coping skills and providing information to help them understand their illness. For example, when provided with the proper education and support, children with diabetes can aid in effectively managing their illness by making proper food choices, understanding situations that may impact blood sugar levels, doing their own finger sticks for blood glucose checks, and even administering their own insulin. Participation in the management of the illness can lead to an enhanced sense of control for children with chronic illnesses.

Competency Closely related to mastery, competency is the sense of accomplishment perceived by the child. Children need to succeed in order to feel competent; part of that success is mastering their environment. Children who feel selfcompetent may have the internal resources to deal with whatever challenges they may face. It is essential for healthcare professionals to facilitate this process. However, child life specialists must be mindful to not create a sense of dependency on themselves, especially in the treatment room, but rather

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seek to promote self-efficacy in children and families. Helping children to establish effective coping skills to manage their anxiety and pain during procedures instills a sense of competency. This use of coping skills in an effective manner should be positively reinforced to encourage use during subsequent procedures in the future. Though child life specialists may verbally espouse the concept of mastery and competency, their actions can support or refute that notion. Examples include directing questions to parents that children can answer for themselves, or completing activities of daily living for children that can complete them on their own.

Autonomy/Independence Chronic childhood conditions throw children and youth into a world in which they may become more dependent on their parents or other adults to care for them. Adults place additional constraints on these children and youth in an attempt to keep them safe and well. Parents may monitor treatments, be present at all times in the hospital and during social activities, and become overprotective. Child life specialists can help make parents aware of developmental tasks that may be impacted by the condition. For example, a teenage patient who has experienced a spinal cord injury will require assistance with many activities (e.g., bathing and toileting), but will still want to be treated in a developmentally appropriate manner. Child life specialists can help teens identify their strengths and role in the treatment process while modeling empowering behavior for the parent. This will help the teen move from a passive role to a more active role in his or her care. Advocating for privacy, inclusion in decision making, and responsibility for self-care can help to restore the sense of independence. Reassuring parents that their child or teen will be safe and cared for when apart from them will help as well.

Identity As children and youth are trying to find a sense of who they are, a chronic condition imposes the necessity to form a new reality, as was illustrated in the case study with Marco, a teen who experienced a traumatic brain injury. Children and youth may need to reevaluate who they are and how they view themselves as individuals in relation to the life changes that the condition has imposed. Activities addressing self-exploration can be extremely helpful. One example of this may be working on boxes that the child or youth depicts the “outer me” on the outside and the “inner me” on the inside—an activity that can be done with words, drawings or pictures from magazines. Activities such as this can facilitate conversation related to how individuals see themselves and how they want others to perceive them. Journaling is another wonderful technique for promoting self-exploration and identity formation.

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Peer Relationships Chronic conditions may change the amount of contact that children have with their peers, as in the case of a child with chronic renal failure requiring dialysis three days a week. Peers may retreat from the child with the chronic condition due to misconceptions about illness. For example, they may fear they can catch cancer, or they may wish to avoid the stigma associated with HIV/AIDS. Opportunities to educate and include peers are extremely beneficial. Providing contact with other children with chronic conditions can also help to form a second peer support network in addition to the child’s already existing peer group. Formal support groups and therapeutic camp programs are effective ways to do this. In addition, technological advances have allowed children with chronic conditions to connect with others facing similar challenges who may live in another state or country.

Body Image Many chronic conditions produce physical changes to the body. And still others, while not causing visible changes, may alter the child or teen’s perception of his or her own body. In both cases the child or teen’s self-esteem may be seriously affected. They may perceive their body to be defective in some way, as in the case of preschool-aged children who experience severe burns. When looking in the mirror they may have a difficult time recognizing themselves amidst the bandages. However, activities like body outline drawings and mirror projects can lead to meaningful discussions related to body image. Activities that highlight the positive aspects of the child’s appearance, like a “day of beauty” with makeup and nail painting or a “muscle man” workout with hand weights, can help foster positive feelings in a child or youth. Activities that differentiate outer and inner strengths (e.g., the box activity mentioned earlier, or scratch art drawings highlighting the things that someone might not know about specific children or teens just by looking at them) can also help a child maintain a strong sense of self while dealing with changes, or perceived changes, in one’s body.

Hope According to Griggs and Walker (2016), hope has been studied extensively in adults, but is a newer area of study with regard to youth. They found that much of the youth-related literature has focused on the idea of hopelessness, but current research suggests that it may be more helpful to focus on, “the positive attribute of hope and developing hope-inspiring strategies rather than reduction strategies or focusing on hopelessness or depression”

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(Griggs & Walker, 2016, p. 414). Through an integrative review of the literature, they found that youth who are more hopeful often demonstrate better adherence to medical protocols—just one benefit of promoting hope. They identified seven themes from the literature that summarize the benefits: (1) hope promotes health, (2) hope facilitates active coping, (3) hope strengthens quality of life, (4) hope helps define purpose and meaning in life, (5) hope increases self-esteem, (6) hope is a crucial resilience factor, and (7) hope helps enhance maturation (Griggs & Walker, 2016, p 415–419). Snyder’s Hope Theory (Snyder et al., 2003) outlines ways for adults to facilitate the development of hope in youth, much of which revolves around assisting the youth in developing and meeting goals, as well as alternatives for dealing with challenges, either expected or unexpected.

Facilitating Adaptation The child life specialist, in conjunction with the child, family, and other members of the healthcare team, uses play, preparation, and communication to promote coping/adaptation. Combining knowledge of development with creativity, the child life specialist is able to aid children in adjusting to, and actually growing through, their experience with a chronic condition. A proactive approach can be taken in relation to developmental tasks, and other concerns can be addressed as they arise. The primary goal of the therapeutic relationship is to “enable children (and members of their family) to develop adaptive strategies to meet the challenges of their situation, and by doing so, to prevent or ameliorate the difficulties they face” (Edwards & Davis, 1997, p. 63). The following sections will identify some areas of child life practice that address specific goals. Many goals are similar to those of children with acute hospital experiences; however, there are some that are particularly significant for children who must cope with their condition for extended periods of time or their entire life.

Self-expression A primary goal for child life specialists is finding ways that are most suitable for a particular child to express thoughts, concerns and feelings. In the course of their work, child life specialists conduct an ongoing assessment of the child and family’s needs and formulates creative ways to address them. The creative aspect of child life is particularly important in encouraging selfexpression, as many children either do not yet have the language skills or prefer ways other than talking to express themselves. Play and creative art

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projects help children identify feelings and concerns related to their illness and discuss potential coping strategies (e.g., allowing children to express anger in acceptable ways, not hurting themselves or others). Care must be taken when facilitating activities for children and youth who have experienced traumatic brain injury, as these patients may lack the judgment to understand the context in which an activity is appropriate. If an activity would not be safe to repeat with peers or in a different setting, it is best avoided. For example, hitting an object, even something as simple as a pillow, should be discouraged, but squeezing a squeeze ball should meet the same goal without creating risk. Sometimes just the expression of emotion and the validation of feelings alone are therapeutic. The following activities are just some suggestions for encouraging selfexpression. The opportunities are endless. • Writing a letter to their illness, in which children can say anything they would like. “Dear Cancer, First, I want to know why you came into my life. I did not ask for this. But you should know that you should go ahead and give up because I have too much to live for. There are so many people that care about me. I know I am going to beat you! Signed, _____________________” They can choose to share this letter with support people or just to seal it and keep it to themselves. Prior to writing the letter, a school-aged child with cystic fibrosis reported, “I could fill the whole page.” She did just that and when done stated, “It felt good just to get it out and feel like it was talking to something.” • Engaging in a sentence completion activity, either alone or as part of another activity. For example, a mobile of stars could be made, and hopes could be written on each star. Or, worry dolls could be made and put into a box in which the child’s worries were written on the lid or inside. Another variation on the theme is to design a worry box and encourage children to write their wonders and worries on paper that is placed inside. • Creation of “feelings gardens,” which can allow children to express their emotions while helping them to understand that many different feelings related to their situation are permitted. Each flower placed in the garden represents a different feeling, an analogy that encourages discussion of the numerous feelings the child may be experiencing.

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This activity can be adapted for use with families. For example, a family activity might focus on creating a “strength garden” where each family member or support person is represented by a flower. On the flowers are the strengths they bring to the family when coping with challenging situations. The garden can serve as a visual reminder to draw on those strengths during times of need.

Developmentally Appropriate Education Regarding Illness Educating children about their illness at the appropriate developmental level is essential. Children must live with this condition for extended periods of time, possibly the rest of their lives. Therefore, it is important for them to have an understanding of the specifics related to their illness—knowledge that can be extremely empowering for children and families in a situation where there are few opportunities to feel in control. It is most desirable for parents to present the information related to diagnosis to their child. However, parents often are overwhelmed and find it difficult to do so, or they may feel illequipped to present the information in a way that their child will understand. Parents may be reluctant to give information for fear that they may scare their child. The child life specialist can help the parent to process this concern and point out the importance of honest, accurate information. Children typically know on some level that something is happening in their body and may have overheard others discuss their condition. Withholding of information by the parents can impact the trust relationship between parent and child. Child life specialists can work with the parents to decide which words to use to explain the condition to their child, or if the parents prefer, the child life specialist or another member of the healthcare team can present the information. It is important to have the parent present, if at all possible. In cases where language may be a barrier, a professional interpreter should be used to present the information. Under no circumstances is it acceptable to use the child or sibling as a translator for medical teaching or information sharing (Hicks & Lavender, 2001). When providing information to children about any condition, it is important to remember a few basic points. First, finding out what they know or understand is the best place to start. This will allow the information they have picked up to be assessed for accuracy. It also acknowledges their valuable role in the process. Children may focus on the information and then appear to lose attention or give clear signals that they do not want to talk about the condition anymore. It is important to recognize and respect that desire. Children have the ability to emotionally insulate themselves, taking in only what they can process or cope with at one time, and then move on to some-

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thing else. Children will revisit the topic again when it is not so emotionally overwhelming. If the child is anxious or upset, it is important to validate these feelings and address the immediate concerns before continuing on with education related to the illness. Concrete tools often help children to comprehend the information presented. Proper language choices are essential. One must bear in mind the imagery associated with the explanations that are provided. For example, when discussing cancer, using the “bad cell” and “good cell” analogy can serve to reinforce the misperception that children got cancer because they were bad. Better word choices would be sick cells/healthy cells or abnormal cells/normal cells. Similarly, when discussing blood glucose levels and using good numbers and bad numbers, children may feel guilt or responsibility for their diabetes or their current blood glucose values. Better choices in this situation would to simply use high and low. Bradlyn et al. (2003) reported that for children with cancer, the transfer of information should to be highly interactive and individualized, an approach that can be extended to children with other chronic conditions. Information should be repeated for children, and it is vital that they be given the opportunity to ask questions. To initiate conversation related to the information presented, one could ask children what surprised them most about what they were told or what the most important part was from their point of view. At the conclusion of each educational session, the child’s understanding should be assessed. Sometimes it is helpful to ask children what they would tell their best friend about the illness instead of simply asking them to repeat the information back to you. This will help to evaluate comprehension more effectively. Providing developmentally appropriate information related to chronic illness and treatment is a continuous process, not a single event. Over time the information will need to be presented again to accommodate the child’s current cognitive functioning. Also, information presented during crisis is not always retained, so repeating information is necessary.

Preparation Preparation for medical events and transitions is a crucial part of a child life specialist’s role in any setting. One important consideration specific to children with chronic conditions is the need for preparation over time. As is true when educating children about their illness, information needs related to procedures may change over time. As children mature, their informational needs will change. It is important to check in with children and provide some type of preparation, even if it is a simple review, regardless of how many times they have had a particular procedure.

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Consideration must be taken when working with a population with cognitive deficits. For many children and adolescents, memory deficits and a decreased tolerance for stimulation make the preparation process more challenging. The degree of recovery from brain injury is described in the Rancho Los Amigos Cognitive Scales, which recently have been modified for use with children six months and older (Savage & Wolcott, 1995). In a rehabilitation setting, it is important to consider the child’s Ranchos level when assessing the need for preparation. Families need support and information at all stages of the patient’s recovery. Prior to the child or teen being able to respond to stimuli in a generalized manner, the child should only be told what is happening to them as it occurs: it should be concurrent, not preparatory. Memory deficits make earlier teaching ineffective. Patients should always be told when they will be touched. True preparation will not be beneficial to the child or teen recovering from a brain injury prior to this time. Medical play can also be introduced at this point. When possible, support should be provided while the procedure is occurring. Once children progress beyond this stage (i.e., they are inconsistently oriented, able to retain some information, and can consistently follow simple directions) they can begin to learn new information and will benefit from teaching before a procedure or transition. Patients need frequent repetition of information and may not be able to generalize information to new settings. All teaching for children with cognitive challenges will need to be modified, and the following modifications should be considered: • • • • • • • • • •

Use a multisensory approach (e.g., hands-on experiences, tours, etc.). Remove distractions, such as TV or interruptions. If child is distracted, present one preparation tool at a time. Don’t expect great verbal recall; assess understanding with demonstration. Allow extra time for a response. Document teaching in memory book or log so patient can review information as needed. Use concrete language and avoid using humor that may be misunderstood. Patients may be rule oriented; use an approach such as, “the rule is nothing to eat in the morning.” Use repetition; model language and encourage parents to reinforce this. Use language consistently. Shorten the teaching sessions (no longer than 10 minutes); break it down into smaller pieces if necessary. Use visual support, including picture books, visual schedules or other tools such as simple stories outlining the process, peer modeling

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through videos or photo books. Visual tools, for example a picture of a dandelion or a birthday candle, can also be used to enhance coping by aiding in relaxation breathing with children who have developmental differences. It is important to recognize that a patient may have had a procedure numerous times, but as they move through stages of cognitive recovery their education needs change.

Play Play continues to be the core of what a child life specialist can offer children and adolescents with chronic conditions. The following considerations are particularly applicable to the play of children in rehabilitative settings, but may apply to children with chronic illness. Initially play may not be enjoyable to a child or teen in a rehabilitation setting, but it is crucial that play be introduced as the child works to regain lost skills. An early appropriate goal in this setting is that “patient will demonstrate enjoyment in play.” Also, patients will often be unable to identify activities they enjoy, so an additional goal appropriate to the early stages is that “patient will identify one activity of interest that can be completed at current level of function.” As a child life specialist, it can be uncomfortable to have a child cry in the playroom or when traveling to the playroom, but this must be viewed as part of the recovery process. In addition to developmental play, several other types of play may be facilitated on a rehabilitation unit, each of which is discussed in the following sections. Post-Traumatic Play. This is a type of therapeutic play in which reenactment of the traumatic event occurs. It differs from other forms of play in that it “frequently lacks both pleasure and relief. It has a seriousness and intensity uncharacteristic of typical play” (Monahon, 1993, p. 34). Patients and siblings may demonstrate a need to engage in this type play. Props related to the accident or trauma are often involved. This play is very repetitious and usually self-initiated, with mastery of the events demonstrated over time. The child life specialist’s role in this type play is to observe and to ensure the child’s safety (i.e., watch for aggressive behavior, or overly anxious behavior; distract or redirect the child as necessary). If the child invites the specialist into this play, the child should be allowed to direct the play of the specialist. It is important that misconceptions that are identified during this play be noted, but this is not the time to correct those misconceptions. This can be done at a separate time. This type of play is sometimes used with children coping with post-traumatic stress disorder. A referral to a counselor may also be helpful for children who have experienced trauma.

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Adaptive Play. Adaptive play is defined as “play that has been altered in form, complexity, or intent to serve the needs of children with disabilities” (Musselwhite, 1986, p. xi). It includes modifying the materials, the environment or the process to meet the needs of a child or teen. The goals of adaptive play are similar to those of a child life specialist working with any child with special needs: (1) integrating the child into settings with children without disabilities, (2) providing fun play experiences, and (3) supporting of therapies or development in skills in specific areas, such as gross or fine motor skills, communication skills or social skills (Musselwhite, 1986). A child life specialist can adapt activities or materials to allow a child to experience success in a setting where his or her sense of self is already challenged. Parents can be taught to modify play to meet the needs of an individual child or teen. Family Activities. Due to the importance of fostering independence during therapy sessions, parents are often discouraged from participating. This reduces the time they are able to interact with their children. Siblings are also restricted from participating in many therapy activities on a rehabilitation unit. Child life can create opportunities for a patient to engage in play with family members. These experiences often occur in the evenings or weekends and allow the parents and siblings to learn new activities and techniques. This involvement helps maintain a positive relationship between family members, creates a sense of community between families from diverse backgrounds, and helps solidify an open relationship between families and staff as they interact together in a play setting. Stimulation. Children and adolescents with brain injuries in the early stage of recovery may require a different definition of “play.” These children may benefit from receiving sensory stimulation in a quiet environment with few distractions and may respond to reading, gentle touch, rocking, tactile stimulation, or music. Often children may benefit from one source of stimulation at a time. The child life specialist needs to be acutely aware of the behavioral signs of overstimulation. Activity Alternatives. In conjunction with other team members, a child life specialist may serve as an educator with regard to activity restrictions following a traumatic injury. Many patients have limitations at discharge that are designed to keep them safe, such as “no contact” sports or “both feet on the ground.” The child life specialist should consult with the patient and the family to identify appropriate alternatives. These may include participating in activities in a different way or identifying new activities of interest. The child life specialist is often responsible for ensuring that patients have been taught about these restrictions and that they understand the reason these are in place.

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Coping Skills Children with chronic conditions are forced to cope with the effects of their disease and treatment over long periods of time. They must cope with psychological aspects of the condition itself, such as hearing the diagnosis and prognosis, as well as potential painful treatments and procedures. The establishment of coping skills can be extremely empowering for children with chronic conditions and can help to foster their resiliency (Boyd & Hunsberger, 1998; Grey, 2011). Coping activities can either be direct actions, such as changing factors in the environment, or cognitive strategies, where one changes thoughts and feelings to deal with the stressful situation (Olson, Johansen, Powers, Pope & Klein, 1993). Rehearsal and practicing of coping skills are important for their effective implementation. Modeling of appropriate coping skills by peers with chronic conditions is also extremely effective, allowing children to perceive that getting through challenges is “doable” since someone else their age has done it. Developing a set of coping skills to draw upon can help lead to more effective adaptation to their illness. One role of the child life specialist can be to help children establish these lifelong patterns for positive, effective coping. When helping children to devise coping plans, articulating the rationale is essential. Children need to understand how employing such strategies will benefit them. Otherwise, they may be viewed as just one more thing someone else is telling them to do. Once coping preferences are identified, the child life specialist should inform other members of the team through documentation and care conferences. A primary tool for building coping skills is allowing for control. Child life specialists are in the position to promote as many realistic choices for children with chronic conditions as possible and to remind other staff members of the importance of providing choices that are realistic. For example, rather than asking “Are you ready to take your medicine?” when it must be taken immediately, one might say “It is time to take your medicine, do you want to take it with water or juice?” These subtle changes in language can help to restore control for the child in an appropriate manner. Child life specialists can help children to establish the skills necessary to cope with condition-related symptoms and pain. The goal of such intervention, however, is to work with children to establish coping skills that they can put in place whenever needed, regardless of the availability of the child life specialist. Children often need someone to guide them in skill development, encourage and reinforce the use of the skills, and monitor their effectiveness over time. Carrying the skills out can build self-efficacy in children as mentioned earlier in this chapter. Many of the techniques to cope effectively with pain addressed elsewhere in this text are relevant to children with chronic

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conditions. It is important to be aware that preferred coping strategies might change over time, so periodic re-evaluation is mandatory. These strategies are aimed at increasing children’s feelings of self-efficacy and reducing the feelings of helplessness and lack of control over their environment or situation. Both cognitive and behavioral methods can be effective; often they are used in a package of both types of methods (Ellis & Spanos, 1994; Olson et al., 1993; Siegel & Smith, 1989). Thompson and Gustafson (1996) point out that cognitive methods often lag behind the use of behavioral methods. Relaxation, distraction and imagery can be especially effective for pain control and symptom management, as well as treatment-related pain and anxiety (Ellis & Spanos, 1994; McQuaid & Nassau, 1999). Cognitive techniques such as positive self-talk, cognitive reframing and thought stopping (Ross, 1984) can help with anxiety and general coping with the condition (Ross & Ross, 1984). A concrete activity to help children understand the implications of negative self-talk is “Helping Hands.” In this activity, medical exam gloves (be mindful of latex allergies) are blown up, and children are encouraged to write on them the things they tell themselves that are helpful, such as “I am brave,” “I can do this,” and “I will be proud of myself when I do this.” The gloves are placed in a large garbage bag, which is then sealed. The children can hit the bag around in the air for a time, after which another glove is introduced that is filled with water. On that glove, the child is encouraged to write things they think to themselves or say out loud that are not helpful, such as “It will really hurt me,” “I will never be able to hold still,” or “Why bother trying, I will not get better anyway.” This water-filled glove is added to the bag, and the children are asked to hit the bag again. The water glove will weigh the bag down, just as negative thoughts can make it more difficult to cope with challenging situations. Other strategies that focus on control can also be useful. For example, for children who must undergo lengthy, painful procedures such as burn debridement, incorporating break times that they control can aid in coping. Children can be given three tokens and told that for each token they can decide when they take a one-minute “break” from the procedure. Of course, stopping in the middle of the procedure for a minute must be a medically realistic option. The child should be told that once the tokens have all been used there will be no other breaks. This should be practiced prior to the event allowing the child to experience how long the break will last and to reinforce once they are all gone the procedure will continue. One of the greatest challenges in a rehabilitation setting is working with a child who is unable to communicate that pain is present or to independently employ coping strategies because of decreased cognition. This inabil-

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ity to communicate may be related to cognitive, language or physical barriers. These barriers place children and adolescents at risk for under-treatment of pain. Caregivers may view altered or blunted response to pain as an indication of insensitivity or of different physiological response to pain. Oberlander, O’Donnell and Montgomery (1999) disagree with this viewpoint, attributing the response seen in some children with special needs to the previously mentioned barriers. This condition places the burden of responsibility on the caregiver to recognize pain in this population and treat it appropriately. The challenges for the clinician include being able to identify the source and location of pain (even after its presence has been determined), as well as distinguishing actual pain from an emotional response. Oberlander et al. recommend the following guidelines while working with children with neurological deficits: 1. Allow and encourage the presence of parents and/or other familiar caregivers during assessment and management of pain. They may better recognize the signals a child is giving. 2. Ensure that the child has access to his or her means of communication (computer for “talking,” vision is not obstructed if child uses eye gaze or blinking, etc.) and any comfort items or measures (seating system, transitional object, etc.) that the child or teen has used successfully in the past. 3. Advocate for children who can’t advocate for themselves. 4. Encourage appropriate pharmacological interventions and the least invasive route for dosing whenever possible. 5. Ask about or document the ways the patient usually expresses stress. Do not expect the cues to be the same from child to child. When working with children with cognitive challenges, the best approaches for coping are distraction and imagery.

Problem-solving Skills All children benefit from the development of problem-solving skills. For children with chronic conditions, it can be especially empowering as they will be cast into many situations in their lives that may require effective problem solving—situations that may be related to the disease and treatment or to social encounters. Development of effective problem-solving skills is associated with positive adjustment to chronic illness (Heermann & Willis, 1992; Thompson & Gustafson, 1996; Varni, Katz, Colegrove, & Dolgin, 1993; Grey, 2011; Martinez et al., 2011).

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Problem solving should be viewed as a process. The goal of problem solving is to help create a sense of autonomy for children. For example, providing solutions for children, rather than encouraging them to identify potential options to resolve problem situations, does not promote independent thought. Most models for acquiring problem-solving skills indicate a series of steps ( Johnson, 1998; Grey, 2011). Basically, the steps are: • • • • • • •

Identify the problem Determine goals Generate potential options/solutions Evaluate the options and potential consequences Decide which option to employ Implement the option Evaluate the effectiveness of the solution

Teaching children problem-solving skills can be done in a more conversational manner, even using books or stories for younger children. Modeling, either directly or through the stories, is also a very effective teaching tool. Once children establish problem-solving skills, they have laid the foundation for coping with challenging situation in the future.

Goal Settings and Action Plans Children diagnosed with chronic conditions often lose hope for the future. Child life specialists can help the child or adolescent to establish realistic goals and devise the action steps to take in order to achieve them. In some cases, where life expectancy is short, achievable goals should be set to allow the child or adolescent to maintain hope “for right now.” It can help them to focus on completing the things in life most important to them. For those with conditions that may not shorten the life span, goal setting can help the child or adolescent to move forward in spite of illness, instead of letting the illness hold them back. The child and family should take the lead in establishing of goals. Some concrete tools to help them achieve this may be suggested by the child life specialist. For example, using a handout with steps or building blocks can help children think through and visualize the action steps necessary to achieve their goals. Medical staff should be informed of these goals and provide an environment to help achieve them whenever possible.

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Adherence An important concern related to chronic illness is adherence to treatment regimens. Historically, this topic has been referred to as compliance. However, that language in and of itself sends the message that the medical team is in a more powerful role than the child and family. Families are to be included as equal team members. Most children with chronic conditions have difficulty following through with treatment plans at some point during their illness, for example, when their body image changes due to the effects of medication, or when their feelings of invincibility are challenged. One may hear, “I just want to be normal” or “I feel fine, so why bother?” Adherence may be affected by the parent and the child’s assessment of the perceived benefits to the treatment. If benefits are seen to outweigh the inconveniences, they are more likely to adhere to the treatment plan. Edwards and Davis (1997) observe that families not adhering to treatment plans may feel that their problems are insurmountable, that the treatment plans are unreasonable, and that the plans have been imposed on them—thoughts that may lead to resentment, reduced confidence and poorer compliance. Strategies for increasing adherence may be either educational or behavioral, as indicated in guidelines for enhancing adherence developed by Edwards and Davis (1997). They suggest that adherence can be improved through the following measures: • • • •

Good preparation Rationale for treatment and consequences of not treating Facilitation of children carrying out practical aspects of their care Negotiation of a treatment plan that is reasonable and manageable with family life. • Reinforcing and supporting children in taking appropriate responsibilities over their treatment. The key to promoting adherence is open communication between the staff and the family. This should include discussions of how to realistically incorporate the necessary medical routines into the child’s daily schedule. Encouraging families to employ the use of routines and rituals may prove to be especially beneficial for young children who thrive on routine and predictability. It is also important to uncover potential difficulties in maintaining the routine. To this end, the child life specialist might suggest that the child or adolescent self-monitor adherence by keeping a journal—an activity that can promote discussions of what may or may not be working. Periodic re-

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evaluation is important to do in collaboration with the child or adolescent and their family. Changes in the plan may be necessary and will be most effective if mutually agreed upon.

Support Systems Family Support Support for all members of the family is essential. Parents may find it helpful to talk with others facing similar situations, gaining valuable support as well as practical tips for managing a chronic illness. Information is extremely empowering, ensuring that parents have access to accurate information regarding their child’s illness is important. Parents should be cautioned about information received from unknown sources and should check all information received with their child’s doctor. Burke, Handley-Deryy, Costello, Kaufmann, and Dillon (1997) indicate that providing interventions for families in outpatient and community settings during particularly stressful times can improve coping and family functioning—a finding that may suggest a role for child life specialists in community settings, especially as medical practices shift toward outpatient care. Brothers and sisters of children with chronic conditions have special needs, including education, support, acceptance, and time. They benefit from education related to the condition, as well as from peer support. Topics of discussion with siblings should include feelings and concerns related to the illness, communicating with others regarding the illness and their potential reactions (Powell & Gallagher, 1993). It will also be important to discuss potential role changes within the family to provide adequate preparation for the well brother or sister. Information can be shared on an individual basis or within a group setting. The child life specialist should work to create a trusting relationship with siblings to meet these needs. It is important to recognize the unique qualities of siblings and not only focus on their importance in relation to the child with the chronic condition. When siblings live too far from the hospital to be involved in direct programming, parents need to be educated on the impact of illness on the other children in the family. Programs like Sibshops (Sibling Support Network) have been developed to address the unique needs of this population. Though they began as support programs for siblings of children with developmental differences, many hospitals now run programs for the siblings of children living with chronic medical conditions. Additional training is needed to facilitate these programs, but many are led by child life specialists.

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Support Groups Support groups can be extremely beneficial for children and adolescents affected by chronic illness (Stauffer, 1998). These groups can range from closed ended to open ended and from informal support groups to more structured therapy groups. The goals of support groups vary, but most groups for children and adolescents with chronic illnesses focus on promoting a sense of universality. Many children feel that their peers are not able to understand what they are facing and express the desire to talk to others who are in similar situations. Coping skills can be strengthened and knowledge increased or reinforced through a support group (Hicks & Lavender, 2001). These groups can facilitate coping through the sharing of strategies and ideas for what has helped others experiencing similar challenges. Psycho-education can be part of these groups as well, empowering the children and adolescents with information. Child life specialists can be effective facilitators of support groups given their knowledge of growth and development and their relationships with the children and adolescents. The goals for the group are the most important matter to consider when planning a group, as they will dictate the format. In general, groups can consist of children or adolescents with the same diagnosis or with a variety of different chronic illnesses. Each type of group has its strengths and weaknesses. Groups with the same diagnosis can more closely identify with each other. However, in a non-categorical approach the common stressors and traumas experienced by children with any type of chronic condition are the focus. The common themes among such groups are the chronicity of the illness, pain, hospitalizations, limitations, life and developmental disruptions, social stigma, life-threatening potential and the child’s sense of being different (Boyd-Franklin, Steiner, & Boland, 1995). The value of this non-categorical approach has been documented (Britto et al., 1998; Garstein, Short, Vannatta, & Voll, 1999; Kibby, Tyc, & Mulhern, 1998; Meijer, Sinnema, Bijstra, Mellenbergh, & Walters, 2000; Stein, Westbrook, & Silver, 1998).

Social Interaction Due to changes in cognitive or physical performance, as well as specific cognitive deficits (disinhibition/poor impulse control, decreased memory, increased frustration), many patients have a difficult time making and keeping friends. Martinez et al. (2011) surmised that prevention and intervention programs to increase social skills and supports in children with chronic illness are important. Social problem solving, modeling and social perception training were among the interventions identified as needed. These interven-

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tions can be provided by the child life specialist either individually or in a group setting. The child life specialist can then facilitate activities that allow patients to practice skills in the group setting. This practice may be formal or informal. Modeling of social skills and reinforcement of positive social skills is an important part of programming for children with chronic conditions. Specific curricula can be purchased to reinforce this teaching. These provide exercises and activities designed to reinforce an individual skill, such as having a conversation or making friends. Another way to help promote social interaction is to help children identify their assets, discussing and listing, for example, things about themselves that others may find interesting. The child life specialist can help children to focus on the abilities they do have and how to use these abilities to initiate interactions with others. Children with chronic conditions must be prepared for reactions of others outside the hospital setting. They need to be given information related to coping with teasing. Role-playing can be a very useful interaction to help prepare children and adolescents for this type of interaction in the community setting.

Camps Camp experiences for children with chronic conditions can have profound lifelong effects. These experiences can provide a sense of hope and support like no others. Camp can be an opportunity for a child with a chronic condition to “just be a child” and perhaps develop some new skills. The supportive environment of camp can help lead to mastery for children who may feel they are no longer able to be successful at recreational activities or who have not tried new activities. Both of these can lead to an increase in self-efficacy. Some camp programs last a week at time in the summer, while other organizations provide year-round experiences for children and families coping with chronic conditions. As with support groups, camp experiences can provide a sense of universality for children coping with a chronic illness. Bluebond-Langer, Perkel, Goertzel, Nelson, and McGeary (1990) indicate that children with cancer can come away from camp with a better understanding of their illness and its treatment. Briery and Rabian (1999) report that camp can improve a child’s attitude toward illness—a benefit that was reported across diagnoses. This study also reported a decrease in self-reported anxiety after camp. Odar et al. (2013) found a small but significant improvement in self-perception in children with chronic illness who attend camp. The camp environment allows children to try out social skills neces-

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sary for re-integration after being diagnosed with a chronic condition. There they can practice explanations related to their illness in an informal and supportive environment with children who have faced similar challenges.

School Re-entry School re-entry is a process that involves the hospital teacher and other hospital staff, the staff of the child or teen’s home school, the patient and family, and the child life specialist. A study by Canter and Roberts (2012) noted the effectiveness of school re-entry interventions, particularly for the teachers. The intervention was found to increase their knowledge and foster positive attitudinal change—benefits that would likely lead to positive effects among children in the class through reinforcement of information and appropriate modeling by the teachers. The child life specialist’s role is generally to prepare the classmates for the hospitalized child’s return. This may be done in person, through computer-based presentations or via video conference. Video conferencing has the added benefit of allowing questions to be asked and answered in real time. The child life specialist often tailors a program for each individual child. Prior to the program, communication is necessary with the patient and family, as well as with the classroom teacher. At this time, consent for the program should be obtained from the parent or legal guardian. Much of the literature on school re-entry is focused on programs for children with oncology diagnoses or burns. However, programs like these can be powerful for a broader range of diagnoses. Questions to ask when considering whether or not a child or their classmates would benefit from a program include, have they or will the child have a change in (1) appearance, (2) routine, (3) ability/wellness, or (4) life span. If “yes” is the answer to any of these questions, a program could be helpful. Sometimes more than one program will be required. Classmates may need information soon after the admission to the hospital. Children or adolescents involved in rehabilitation programming will change between that point and discharge, so a program immediately prior to or following discharge will be beneficial. Students may also need additional programs at other transition points (e.g., starting a new school or joining a club with unfamiliar peers). Re-entry programs may be helpful for other transitions, including return to a scout troop or a Sunday school class. Children or teens should be allowed to choose whether or not to be present for the presentation. Some may wish to be present for the entire program. If the patient elects to be present, he or she may choose to be an integral part of the program, to participate in answering questions, or to be an observer. Classmates should be prepared for the patient’s role at the beginning of the program.

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Classmates may ask fewer questions if the patient is present throughout. Some may choose to leave the room during the question-and-answer portion of the program. One way to address this is to allow students to write down their questions, eliminating their need to ask their question out loud. Some children and adolescents will choose to be absent for the entire program. Each of these choices is acceptable. If the patient chooses to be absent, it is important that the classmates understand that the child life specialist has the child or teen’s permission to share this information. Nothing should be revealed to classmates that can’t be discussed with the patient. Questions such as “Will he die?” and “How does she go to the bathroom?” should be discussed with the child or teen. Together the patient, family and child life specialist should come up with an answer. Sometimes that answer may be “John would like that to be private.” Other times the patient will want every detail shared. With many questions, a range of possibilities can be offered. At times, the best response that can be offered is, “We wish we had a crystal ball, but since we don’t, here are some possibilities. . . .” Many schools will want to notify the parents of the classmates that this program will be taking place. Creating a handout for the children or adolescents to take home can be helpful. It should include the topic of the program (including the patient’s name and diagnosis), some general information that will be shared with the classmates, and whom parents should contact with questions. When creating the outline for the program, the developmental level of the participants must be considered. The length of program, selected activities, amount and type of information provided, and resources used will all vary with the age of the classmates. Remember, it is important to adapt the content to the particular child who is returning to the classroom. Active learning opportunities should be included, which might be as simple as asking questions and allowing verbal responses or as involved as creating games that the classmates can participate in to learn information. Resources, such as models and storybooks, can also enhance the learning experience and help maintain the attention of the students. When transitioning to the question-and-answer portion of the program, it is often helpful to distinguish between “stories” and “questions.” Illness and injury are such emotionally-charged topics that many children and adolescents have stories they want to share about themselves or a family member. It is often helpful to review the “question words” (who, what, when, where, why, how) and establish limits prior to this session beginning. It is important to assess the level of the classmates’ understanding prior to leaving. Often a game show type review or a “thumbs up/thumbs down” assessment (with yes/no questions) allows the child life specialist to quickly

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verify understanding. A written evaluation or a follow-up phone call to the classroom teacher can provide additional information. There is still a gap in the literature related to school programs. A metaanalysis by Helms et al. (2016) of research on oncology-related school programs documented the many benefits of these programs for both the patient and the classmates—benefits that include increased understanding of cancer in the patient and classmates, reduced levels of depression in the patient, a more positive viewpoint of the patient by classmates, increased interaction between children, and less worry for the child returning to school. Nevertheless, they cautioned that the number of articles reviewed was low and that most were quite dated (p. 177). This is an area meriting additional research.

Normalcy and Redefinition of Self As a child and family incorporate treatment and routines related to the condition into their lives, a new sense of normalcy emerges. Throughout this process, issues of loss will emerge. Providing emotional support and validating feelings is essential. Families may need support from the child life specialist as they define this “new” normal. Advocating for normalization, return to routine, school and social reintegration, discipline and household responsibility are essential (Dolgin, Phipps, Harow, & Zeltzer, 1990). The establishment of routines, rituals and schedules can help to integrate medical treatments into everyday tasks. These also provide predictability for the child. Parents of children with chronic conditions often are reluctant to set limits and boundaries. As Sourkes (1995) notes, “The ability of parents to maintain normalcy and limits communicates the critical message, ‘While the illness is abnormal, he or she is still normal in their eyes’” (p. 83). Providing support for parents as they process this notion is important. Children and adolescents dealing with extended hospital stays and with limits in cognitive functioning benefit from an increased amount of structure in their environment and activities. They also benefit from clear, consistent limits and behavioral expectations. The amount of structure while on the rehabilitation unit is very different than that required in other areas of the hospital. This is often uncomfortable for child life staff in a rehabilitation setting because it may feel as though they must limit the choices being offered. Some simple ways to increase structure in the environment are to use a simple kitchen timer to mark time, to create a list that a patient can use to monitor progress toward a goal, and to truly adhere to the child’s daily schedule.

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Adjustment over Time Due to modern medical advances, most children with chronic conditions live long lives. Therefore, it is important to acknowledge how they adjust and change over time. A common misperception of staff is that chronically ill children have been hospitalized so often that they already have seen, heard or experienced everything. This leads many staff members to the conclusion that patients do not need further information related to their illness or procedures. This cannot be further from the truth. As children grow and gain cognitive maturity, they are able to grasp more abstract concepts. Their corresponding informational needs will increase. Concepts already taught at one developmental level will need to be readdressed in light of the new ability for the comprehension of higher-level information. Further, recurrent grief and loss may be experienced at each illness episode or stage. Key transition points such as entry into school, changing schools, puberty, adolescence and young adulthood are especially important times for checking in on individuals to update information, discuss feelings and address other concerns related to that developmental phase of life (Singer, 1999). Transitioning care from parents to children requires assessment of the child’s readiness. Among the factors to consider when assessing readiness are the developmental level of the child and family factors (Giordano, Petrila, Banion, & Neuenkirchen, 1992). Developmental considerations include the ability to plan ahead and use judgment—both complex cognitive skills. Family factors such as parent burnout, misguided pride and busy parents may initiate the transfer of care too soon. Giordano et al. (1992) recommend the following steps for transferring responsibility for diabetes care, considerations that may equally apply to children with other conditions: • determine the child’s knowledge of disease management concepts and skills • transfer responsibility gradually • maintain parental supervision • reinforce responsible behavior • have realistic expectations related to what the child can handle Child life specialists can help plan the transition of care from parents to the child. They can also help other healthcare staff to understand that this process is gradual and that growing pains may accompany it. Support is also needed when adolescents transition from pediatric care to adult services—a transition that can be extremely anxiety provoking. In the past, preparing for a transition to adult care was initiated close to, or at the

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time of, transition. Now, however, it is recommended that transition planning begin much earlier to allow patients to acquire the necessary skills to be successful as adults. These skills include things like managing their medications, understanding and addressing side effects of their illness, and coordinating care among a variety of clinicians. This can be particularly challenging for families of youth living with a chronic illness that negatively impacts their development. According to Edwards and Davis (1997), adolescents reported needing a year to prepare for the transition, and many programs have begun to advocate for starting the process of transitioning between the ages of 12 and 14 years (gottransition.org, retrieved 2017). Preparation for adult services is equally important as preparing children for painful procedures, for there will be new routines and procedures to which the adolescent must adjust. Got Transition/Center for Health Care Transition Improvement identifies six stages of the transition process: • Discovering: introducing the transition process and policy to a patient and family. • Tracking: establishing a structured process for transition and creating a flow sheet to document each patient’s progress through the process. • Preparing: assessing patient’s readiness for learning new transitional skills and helping patients identify goals for transition. This generally begins at age 14. • Planning: creating and maintaining a plan of care. Assessing support needs of patients with developmental differences. • Transferring: confirming appointments with adult care providers and providing information for family and new medical team. • Completing: communicating with family 3–6 months after transfer to ensure all needs were met. Child life specialists can have an active role in each of these stages, working along with the multi-disciplinary team to provide both education and support. It may also be helpful to allow opportunities for children or adolescents to process their experience with the chronic condition over time. Making journey maps, complete with hills, bumps and signs outlining the road they have traveled, can help to process the experience. It will allow them to mindfully reflect on the significance that each event along their journey had on their coping at that time. It is also an opportunity to evaluate the impact the condition has on who they have become as a person.

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Interdisciplinary Collaboration Children with chronic conditions typically have a team of healthcare providers addressing both their physical and psychosocial needs. This teambased focus is beneficial for the patients involved, as there are many voices and views contributing to their care. The team can take a truly holistic approach to care since there are representatives involved who focus on each area—mind, body, and spirit. This close involvement with other disciplines creates opportunities and challenges for the child life specialist. A service delivery approach called a “co-treat” is often used in the rehabilitation setting. Due to the need for a smaller patient/staff ratio, several staff members from various backgrounds work simultaneously with one patient or with several patients. The child life specialist may be involved in several ways—planning a developmentally-appropriate activity for the session, planning an activity to recognize a holiday or special event, coordinating on community re-integration programming and/or engaging the patient in meaningful activity while the therapist facilitates a difficult skill (e.g., using distraction techniques). The child life specialist may also work in collaboration with the therapists to create behavior plans to help children and youth succeed with their rehab goals. This treatment approach allows for the patient’s needs to be met in a timely manner, helps guarantee their safety during the session and ensures that activities are developmentally or therapeutically based. Even though there are numerous benefits, caution must be used with cotreats. Co-treats do not typically allow for parent and sibling involvement. They also do not offer children much in the way of choice, opportunities for expression of feelings, or free play. In order to build and maintain a relationship with a patient and his or her family, the child life specialist should continue to facilitate activities outside of these times as well. The child life specialist must maintain a clear sense of the goals he or she has set for a particular patient. If an activity is contradictory to these goals, that is not an appropriate co-treat.

Professional Considerations Working with children and families facing chronic conditions presents some unique professional challenges. Relationships are developed over time or through extended hospital stays. Frequently, families refer to staff as “part of the family.” The relationships formed during times of crisis are often like no others in life. There are both positives and negatives to this. The nature of chronic illness allows these relationships to be formed and maintained over time. Establishing relationships is extremely beneficial to families and

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also facilitates a trust in the medical team working with their family. Consistency and continuity is desirable for anyone, particularly those with much unpredictability in their life. However, long-term relationships can potentially lead to crossing professional boundaries. This balance between being supportive and professional and crossing the boundary is sometimes difficult to achieve, particularly with children who have chronic conditions. Professional boundaries are essential for child life specialists. Boundaries can be defined as the place where one leaves off and another begins. These set each person apart from others. Professional boundaries help to delineate where staff roles begin and end. They also maintain the integrity of the family unit. The goal of professional interactions with children and families is to be meaningfully related, but professionally separate (Barnsteiner & GillisDonovan, 1990). All healthcare professionals working with children with chronic conditions and their families would be well served to take a close look at their professional boundaries. Not only is it helpful to the therapeutic relationship but it is self-protective for the professional. Over involvement can lead to burnout and, eventually, ineffective interactions with children and families. Child life specialists should evaluate whether they are coming in during off times to check on particular children, seeing children and families socially outside of the professional setting, buying gifts for particular children, or showing favoritism. When experiencing burnout, some staff may curtail their involvement, decreasing their ability to be empathetic with families. Working toward a proper balance should be a professional goal. As discussed in other sections of this chapter, the goal of work with children with chronic conditions is to build self-efficacy in the child and family. Being overly involved can breed a sense of dependency on the child life specialist, which is contradictory to the goals of empowerment of families. Child life specialists must be mindful in the support they give. One area that can lead to dependency is during invasive procedures. Certainly, the child life specialist will prepare the child for the procedure, discuss and rehearse coping strategies, and perhaps be present during the procedure. The critical consideration is that the role should be to support the child and families’ use of adaptive strategies that they are managing on their own, not to make oneself an essential piece of the plan. Rushton, McEnhill and Armstrong (1996) suggest that behaviors empowering of families are ones that facilitate goals developed with the family, support and recognize primary relationships, support the role of the parents as their child’s advocates, support the child and family acting on their own behalf, and assist with providing resources necessary to make decisions. Children with chronic conditions will experience challenging encounters throughout their lives. The best job we can do is to

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provide them with the tools and strategies necessary to effectively navigate difficult situations. Child life specialists need to acknowledge that self-care is important and give themselves permission to take care of themselves. In the absence of outlets outside of the professional setting to cope with stress, anxiety and grief, professional burnout will surely follow. Professionals who experience burnout lose their effectiveness with the children and families they serve. Therefore, every child life specialist should mindfully look at what self-preservation strategies they employ to manage work-related stress. Discussing this with peers or mentors can be a helpful way to evaluate how well they are taking care of themselves. It is the ethical responsibility of child life specialists to continue to evaluate their personal philosophy and practice. The professional should be aware of current practice considerations and their beliefs related to such practices. Remaining abreast of current literature pertinent to the field is essential and leads toward evidence-based practice. This careful self-exploration is essential in order to feel confident in one’s skills, allowing both the families and the staff interacting with the child life specialist to trust the recommendations provided or skills modeled. CONCLUSION Children with chronic conditions are thrust into a world of uncertainty, which threatens their sense of security. No longer does their life have the predictability necessary for that sense of security. Through careful assessment and planning, the child life specialist can help children and adolescents with chronic conditions cope effectively with their illness and live life to the fullest. REFERENCES Abdullah, A., Blakeney, P., Hunt, R., Broemeling, L., Phillips, L., Herndon, D. N., & Robson, M. C. (1994). Visible scars and self-esteem in pediatric patients with burns. Journal of Burn Care and Rehabilitation, 15, 164–168. Alderfer, M. A., Cnaan, A., Annunziato, R. A., & Kazak, A. E. (2005). Patterns of posttraumatic stress symptoms in parents of childhood cancer survivors. Journal of Family Psychology, 19(3), 430. Amer, K. (1999). Bibliotherapy: Using fiction to help children in two populations discuss feelings. Pediatric Nursing, 25, 91–95.

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Canter, K. S., & Roberts, M. C. (2012). A systematic and quantitative review of interventions to facilitate school reentry for children with chronic health conditions. Journal of Pediatric Psychology, 37(10), 1065–1075. Canter, K. S., Wu, Y. P., Stough, C. O., Parikshak, S., Roberts, M. C., & Amylon, M. D. (2015). The relationship between attitudes toward illness and quality of life for children with cancer and healthy siblings. Journal of Child and Family Studies, 24(9), 2693–2698. Castes, M., Hagel, I., Palenque, M., Canelone, P., Corao, A., & Lynch, N. R. (1999). Immunological changes associated with clinical improvement of asthmatic children subjected to psychosocial intervention. Brain, Behavior, and Immunity, 13, 1– 13. Cohen, M. (1999). Families coping with childhood chronic illness: A research review. Families, Systems & Health, 17, 149–164. Conoley, J. C., & Sheridan, S. M. (1996). Pediatric traumatic brain injury: Challenges and interventions for families. Journal of Learning Disabilities, 29, 662–669. Davis, C., Delameter, A., Shaw, K., LaGreca, A., Eidson, M., Perez-Rodriguez, J., & Nemery, R. (2001). Brief report: Parenting styles, regimen adherence, and glycemic control in 4 to 10 year old children with diabetes. Journal of Pediatric Psychology, 26, 123–129. Delameter, A., Jacobson, A., Anderson, B., Cox, D., Fisher, L., Lustman, P., Rubin, R., & Wysocki, T. (2001). Psychosocial therapies in diabetes. Diabetes Care, 24, 1286–1292. Dolgin, M., Phipps, S., Harow, E., & Zeltzer, L. (1990). Parental management of fear in chronically ill and healthy children. Journal of Pediatric Psychology, 15, 733–744. Edwards, M., & Davis, H. (1997). Counselling children with chronic medical conditions. Leicester, England: The British Psychological Society. Edwards, P. A., Hertzberg, D. L., Hays, S. R., & Youngblood, N. M. (1999). Pediatric rehabilitation nursing. Philadelphia: W. B. Saunders Company. Eiser, C. (1990). Psychological effects of chronic disease. Journal of Child and Adolescent Psychology and Psychiatry, 31, 85–98. Ellis, J., & Spanos, N. (1994). Cognitive-behavioral interventions for children’s distress during bone marrow aspirates and lumbar punctures: A critical review. Journal of Pain and Symptom Management, 9, 96–108. Erkolahti, R., & Ilonen, T. (2005). Academic achievement and the self-image of adolescents with diabetes mellitus type-1 and rheumatoid arthritis. Journal of Youth and Adolescence, 34(3), 199–205. Fennell, P. (2001). The chronic illness workbook. Oakland, CA: New Harbinger Publications, Inc. Fenton, J. (2000). Cystic fibrosis and art therapy. Arts in Psychotherapy, 27, 15–25. Ferro, M. A., & Boyle, M. H. (2015). The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children. Journal of Abnormal Child Psychology, 43(1), 177–187.

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Fiese, B., & Wamboldt, F. (2000). Family routines, rituals and asthma management: A proposal for family based strategies to increase treatment adherence. Families, Systems & Health, 18, 405–418. Frank, R., Thayer, J., Hagglund, K., Vieth, A., Schopp, L., Beck, N., Kashani, J., Goldstein, D., Cassidy, J., Clay, D., Chaney, J., Hewett, J., & Johnson, J. (1998). Trajectories of adaptation in pediatric chronic illness: The importance of the individual. Journal of Consulting and Clinical Psychology, 66, 521–532. Freeman, M. (1991). Therapeutic use of storytelling for older children who are critically ill. Children’s Health Care, 20, 208–215. Garstein, M., Short, A., Vannatta, K., & Noll, R. (1999). Psychosocial adjustment of children with chronic illness: An evaluation of three models. Journal of Developmental and Behavioral Pediatrics, 20, 157–163. Gil, K. M., Anthony, K. K., Carson, J. W., Redding-Lallinger, R., Daeschner, C. W., & Ware, R. E. (2001). Daily coping practice predicts treatment effects in children with sickle cell disease. Journal of Pediatric Psychology, 26, 163–173. Giordano, B., Petrila, A., Banion, C., & Neuenkirchen, G. (1992). The challenge of transferring responsibility for diabetes management from parent to child. Journal of Pediatric Health Care, 6, 235–239. Glazer-Waldman, H., Zimmerman, J., Landreth, G., & Norton, D. (1992). Filial therapy: An intervention for parents of children with chronic illness. International Journal of Play Therapy, 1, 31–42. Godfrey, H. P. D., Knight, R. G., & Partridge, F. M. (1996). Emotional adjustment following traumatic brain injury: A stress-appraisal-coping formulation. Journal of Head Trauma Rehabilitation, December, 29–40. Goodheart, C., & Lansing, M. (1997). Treating people with chronic disease: A psychological guide. Washington, DC: American Psychological Association. Got Transition/Center for Health Care Transition Improvement. Retrieved from http://www.gottransition.org/resource Graves, M. M., Roberts, M. C., Rapoff, M., & Boyer, A. (2010). The efficacy of adherence interventions for chronically ill children: A meta-analytic review. Journal of Pediatric Psychology, 35(4), 368–382. Greco, P., Pendley, J., McDonell, K., & Reeves, G. (2001). A peer group intervention for adolescents with type 1 diabetes and their best friends. Journal of Pediatric Psychology, 28, 485–490. Grey, M. (2011). Coping skills training for youths with diabetes. Diabetes Spectrum, 24(2), 70–75. Griggs, S., & Walker, R. K. (2016). The role of hope for adolescents with a chronic illness: an integrative review. Journal of Pediatric Nursing, 31, 404–421. Hamama, L., Ronen, T., & Rahav, G. (2008). Self-control, self-efficacy, role overload, and stress responses among siblings of children with cancer. Health & Social Work, 33(2), 121–132. Hamall, K. M., Heard, T. R., Inder, K. J., McGill, K. M., & Kay-Lambkin, F. (2014). The Child Illness and Resilience Program (CHiRP): A study protocol of a stepped care intervention to improve the resilience and wellbeing of families living with childhood chronic illness. BMC Psychology, 2(1), 1.

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Heath, J., MacKinlay, D., Watson, A. R., Hames, A., Wirz, L., Scott, S., ... & McHugh, K. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology, 26(5), 767–773. Heermann, J., & Willis, L. (1992). Effect of problem solving instruction and health locus of control on the management of childhood asthma. Children’s Health Care, 21, 76–83. Helms, A. S., Schmiegelow, K., Brok, J., Johansen, C., Thorsteinsson, T., Simovska, V., & Larsen, H. B. (2016). Facilitation of school re-entry and peer acceptance of children with cancer: A review and meta-analysis of intervention studies. European Journal of Cancer, 25, 170–179. Hicks, M., & Lavender, B. (2001). Psychosocial practice trends in pediatric oncology. Journal of Pediatric Oncology Nursing, 18, 143–153. Holzheimer, L., Mohay, H., & Masters, I. (1998). Educating young children about asthma: Comparing the effectiveness of a developmentally appropriate asthma education video tape and picture book. Child: Care, Health and Development, 24, 85–99. Hostler, S. L. (1999). Pediatric family-centered rehabilitation. Journal of Head Trauma Rehabilitation, 14, 384–393. Johnson, K. (1998). Trauma in the lives of children (2nd ed.). Alameda, CA: Hunter House. Jones, E. M. (2002). The efficacy of intensive individual play therapy for chronically ill children. International Journal of Play Therapy, 11, 117–140. Keene, N., Hobbie, W., & Ruccione, K. (2000). Childhood cancer survivors: A practical guide to your future. Sebastopol, CA: O’Reilly & Associates. Kibby, M., Tyc, V., & Mulhern, R. (1998). Effectiveness of psychological intervention for children and adolescents with chronic medical illness: A meta-analysis. Clinical Psychology Review, 18, 103–117. Kieckhefer, G. M., Trahms, C. M., Churchill, S. S., Kratz, L., Uding, N., & Villareale, N. (2014). A randomized clinical trial of the building on family strengths program: An education program for parents of children with chronic health conditions. Maternal and Child Health Journal, 18(3), 563–574. Lahz, S., & Bryant, R. A. (1997). Pain coping strategies following traumatic brain injury. Journal of Head Trauma Rehabilitation, June, 85–90. Levi, R. B., Drotar, D., Yeates, K. O., & Taylor, H. G. (1999). Posttraumatic stress symptoms in children following orthopedic or traumatic brain injury. Journal of Clinical Psychology, 28, 232–243. Logan, D., Radcliffe, J., & Smith-Whitley, K. (2002). Parent factors and adolescent sickle cell disease: Associations with patterns of health service use. Journal of Pediatric Psychology, 27, 475–484. Martin, D. A. (1988). Children and adolescents with traumatic brain injury: Impact on the family. Journal of Learning Disabilities, 21, 464–470. Martinez, W., Carter, J. S., & Legato, L. J. (2011). Social competence in children with chronic illness: A meta-analytic review. Journal of Pediatric Psychology, 36(8), 878– 890.

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White, L. C., Moola, F. J., Kirsh, J. A., & Faulkner, G. E. (2016). A therapeutic recreation camp for children with congenital heart disease: Examining impact on the psychosocial well-being of parents. Journal of Child and Family Studies, 25(10), 3034–3043. Wu, Y. P., Prout, K., Roberts, M. C., Parikshak, S., & Amylon, M. D. (2011, April). Assessing experiences of children who attended a camp for children with cancer and their siblings: A preliminary study. In Child & Youth Care Forum, 40(2), 121–133. Yim-Chiplis, P. K. (1998). The child with traumatic brain injury returns to school. Pediatric Nursing, 24, 245–248. Ylvisaker, M., Todis, B., Glang, A., Urbanczyk, B., Franklin, C., DePompei, R., Feeney, T., Maxwell, N. M., Pearson, S., & Tyler, J. S. (2001). Educating students with TBI: Themes and recommendations. Journal of Head Trauma Rehabilitation, 16, 76–93.

Chapter 15 THE EMERGENCY DEPARTMENT AND AMBULATORY CARE VICKIE L. SQUIRES AND KIM E URY ALLEN INTRODUCTION hild life practice in emergency department and ambulatory care settings differs greatly from that of the traditional inpatient unit, differing in the priorities of the child life specialist, the strategies used to provide care, the acuity levels of patients served and the overall pace of the setting. Establishing a therapeutic relationship in outpatient settings represents a challenge, and the results often do not reach the depth that is common to inpatient service. The practice of child life in the emergency department and ambulatory care settings is rooted in the tradition, experience and training of inpatient practice, based on a “linear” model of developing therapeutic relationships and implementing care strategies over a time period of days, weeks, or even months. Although the average length of inpatient stay has declined substantially in recent years, the amount of time available to the inpatient child life specialist for the development of therapeutic relationships is still typically greater than that available during outpatient visits. In inpatient settings, therapeutic relationships grow through frequent and repeated contact and opportunities to build trust. The therapeutic process evolves as objectives, care plans and outcomes roll out and are redefined as patients and families are reassessed, progress in their care, and prepare for discharge. In outpatient settings, the care and practice strategies can be characterize as “vertical” instead of linear, with children and families sometimes served a single time, and possibly never to be seen again after that medical touch point. Patients are served in shorter units of time, often as little as 10 or 15 minutes.

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Interdisciplinary team care may be limited to a single patient problem or complaint and not involve the more integrated needs such as coping support, developmental assessment, dietary counseling or spiritual care. Nevertheless, in ambulatory care settings, the need for therapeutic relationships exist and may build slowly over a period of several appointments or through opportunities to collaborate with inpatient colleagues during a hospital admission. Despite the differences inherent to practice in inpatient and outpatient settings, the practice of child life in ambulatory settings shares the same guiding principles of inpatient care, that the child’s developmental capabilities define the strategies used to assist coping, that patient- and family-centered care is essential, and that play is the therapeutic glue that ties care together for all into a meaningful outcome. It is important that the profession of child life addresses the experience of children in these settings. Although, as we have noted, the focus of child life has historically been on the inpatient experience, children’s encounters with medical care are far more common in other settings. According to the National Health Interview Survey: 2015 (Brown & Simpson, 2016), more than 92% of children under 18 years of age had been in contact with a medical professional within the past year. On the other hand, barely 2% of children of this age had been hospitalized. Far more common than inpatient admissions are visits to the emergency department, experienced by 16.9% of children within the past year. This amounted to nearly 28 million emergency department visits by children in 2013. The number of visits by children to hospital outpatient departments was comparable, with 27.7 million visits made in 2011 (National Center for Health Statistics, 2017). The experience of children in these settings is common and has the potential to shape their attitudes and responses to future healthcare encounters. Although research on the use of child life services in emergency departments and ambulatory settings has existed for years (see, for example, Alcock, Feldman, Goodman, McGrath, & Park, 1985; Williams & Powell, 1980), recent research on these areas is relatively limited. Nevertheless, the existing research suggests that when appropriately utilized child life interventions help increase patient and parent satisfaction, reduce child and parent anxiety, and potentially decrease the need for medication or sedation (Gursky, Kestler, & Lewis, 2010; Stevenson, Bivens, O’Brien, & Gonzelez del Ray, 2005; Heilbrun, Wittern, Lee, Pham, Hamilton, & Nager, 2014; Durand, Young, Nagy, Tekes, & Huisman, 2015). Approaches used in these studies included the provision of play and developmental stimulation, offering information regarding procedures, and the acknowledgement of fears and concerns related to the healthcare setting or the child’s condition. (See Chapter 3 for a fuller discussion of this research.)

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In a study limited to emergency departments, Krebel, Clayton, and Graham (1996) reported that relatively few such departments offered child life services at that time. Of the surveyed hospitals serving pediatric patients in the emergency department, only 14% reported that they devoted at least one full-time child life specialist to the service, while 72% reported that no child life services were available. In preparation for the present chapter, we reviewed the 2016 Directory of Child Life Programs (Child Life Council, 2016) to determine the extent to which this situation may have changed and found substantial improvement in the intervening twenty years (see Table 1). Of the 519 programs in the United States and Canada listed in the 2016 directory, 197 (or 38%) reported that they staffed the emergency department with full-time child life specialists, with an additional 109 programs (21%) providing child life through consultation or on-call service. We also examined the presence of child life in other ambulatory settings and found that: • 24% of the hospitals reported staffing ambulatory specialty clinics with full-time child life personnel. • 40% of the hospitals reported having full-time child life staff in an ambulatory surgery setting, and • 10% reported child life presence in well-child clinics To summarize, the experience of medical care in settings apart from inpatient hospitalization is common throughout childhood, and an increasing proportion of medical care is being provided in ambulatory settings. Research indicates that the presence of child life in emergency departments and ambulatory settings contributes to the well-being of children and their fami-

Table 1 PROPORTION OF CHILD LIFE PROGRAMS STAFFING EMERGENCY DEPARTMENTS OR AMBULATORY CLINICS 2016 Directory of Child Life Total number of reporting Child Life Programs 519

Emergency Department Programs with Dedicated FTEs

Emergency Department Programs with on-call or consult Child Life Staffing

Ambulatory Specialty Child Life Programs with Dedicated FTEs

Ambulatory Surgery Programs with Dedicated FTEs

Ambulatory Well Visit Child Life Programs

197 (38%)

109 (21%)

122 (24%)

209 (40%)

51 (10%)

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lies. Medical providers have recognized these contributions through the increased presence of child life specialists. In the sections that follow, we will consider the scope of child life practice in emergency departments and outpatient settings. In particular, we consider the changing nature of medical practice in these settings, the types of services potentially provided by child life specialists, methods of staffing these areas and other considerations common to each, such as the use of volunteers, management of materials, and enhancement of the physical environment. Attention is given to the unique challenges of each setting, as well as the clinical “tools and techniques” commonly used by child life in any of them. We conclude with consideration of professional issues child life specialists encounter in their practice. THE SCOPE OF CHILD LIFE OUTPATIENT SERVICE Trust and therapeutic relationship building remain integral components of outpatient child life service, even though they must be addressed in a briefer and sometimes more intense period of time. Preparation, treatment support, emotional support, advocacy for involvement, and the provision of developmentally appropriate play are the focus of child life practice in all outpatient settings. Emergency department child life specialists work quickly to assess and provide therapeutic interventions to patients to relieve fear and pain. Most of the interventions come in the form of emotional support and preparation for an immediate treatment or procedure. Providing developmentally appropriate play opportunities and family interventions are also priorities in the hectic emergency department environment. Child life specialists in other ambulatory settings may provide short, single-visit interventions with similar focus as the emergency department, such as surgical or procedural preparation. In some settings, the child life specialist may develop long-term patient and family care plans based on assessed needs. These may be implemented over a period of time, such as a week as in a hematology clinic, or over as much as a month or year in a rehabilitation or dialysis clinic settings. Significant changes in practice in outpatient healthcare services in recent years have changed child life care and focus. These changes can be attributed to rising healthcare costs and reimbursement reform, which include a variety of governmental regulations and interventions imposed on the healthcare industry, as well as many medical and technological advances, which may vary from setting to setting (for example, if a given hospital has developed unique expertise in the treatment of a particular condition). When early child life professionals began assisting children in hospitals, it was not uncommon for children to be isolated from their families and admitted, at

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times, for lengthy admissions for diagnosis and treatment. Child life specialists were well-suited to assist children with their separation from parents, helping them to build trusting relationships with their healthcare providers, and to understand and master their healthcare experiences, supporting their ego development through these life-changing events. However, by the turn of the twenty-first century, economic pressures altered many of the practices and routines of outpatient care. An example of this is the practice of “cohorting” patients in the emergency department for as long as 23 hours. Cohorting refers to the practice of placing and caring for several patients with similar care needs together in the single space. It is more efficient and cost effective to serve multiple patients within a close proximity. Many hospitals have also created parallel observation units staffed by emergency department personnel to decrease lengths of stay and, therefore, costs. Examples include the establishment of discharge waiting areas or play spaces to free up exam rooms and facilitate the treatment of subsequent patients, thus allowing for more efficient use of expensive space—an approach designed to improve patient “throughput.” Observation care costs and reimbursement are significantly less than that of emergency department and inpatient care admissions. As a result, cohorting patients in well-managed observation units within emergency departments can significantly drive down hospital expenses. However, such units represent a challenge for child life specialists as they attempt to provide interventions for children and youth of widely varying ages, while remaining cognizant of using appropriate materials and supplies and observing procedures for disinfecting toys between each patient’s use. Prioritizing observation patients in addition to the regular emergency department census is another challenge. A child life specialist must weigh the needs of each area and divide staffing and interventions accordingly. Outpatient and surgical units increasingly provide a variety of surgical and invasive procedural interventions under conscious sedation, which also reduces the need for and cost of inpatient hospitalization. Specialized surgical sites are frequently established in suburban locations, often affiliated with larger metropolitan hospitals, healthcare systems or children’s hospitals. Surgeries that once would have necessitated hospital admission (e.g., nonruptured appendectomies, hernia repairs, and some cardiac procedures) now result in same-day discharges. An increasing number of invasive interventions such as Botox injections, renal dialysis apheresis therapies and more are provided in pediatric outpatient clinics in an effort to curb costs, provide a convenient service location and minimize disruption to family life. As a result, a greater amount of pediatric follow-up healthcare is shifted to the home. Healthcare routinely given in homes includes the providing of

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IV fluids and medications, wound care, catheter interventions, and, increasingly, palliative care to more medically complex children. In turn, children and families who receive care in ambulatory settings are often asked to absorb and adjust to confusing technical information, interventions, pain and body alteration, and other life changes, then return to their homes to sort out and manage their emotional responses, administer follow-up care and develop strategies for incorporating this care into family life. As care continues to move to the outpatient setting and beyond, child life specialists are challenged to adapt their practice to meet the needs of children and families in the ambulatory environment.

Type of Services Regardless of the outpatient care setting, child life practice must be structured around clear assessment goals and, ideally, be monitored by a certified child life specialist (CCLS) with considerable experience. This is so because of the greater variety of diagnoses and patient conditions and corresponding treatments typically encountered. As noted, outpatient treatments can be invasive, painful and emotionally challenging for children and families, both during treatment and upon return home. An experienced CCLS is better prepared for this variety and intensity and is more likely to have the knowledge and skills needed to best support the patient and family. As is true of inpatient care programs, child life goals in ambulatory settings include the following: • To assess coping responses and needs of children and families to healthcare experiences • To minimize stress and anxiety for the child • To prepare children and families for healthcare experiences • To provide essential life experiences that are relevant to the child’s developmental needs, and to their family and community values • To create opportunities that strengthen self-esteem and independence • To communicate effectively with other members of the healthcare team The adaptation, implementation and emphasis placed on these goals vary with the outpatient setting. Specific activities associated with them may be delivered, all or in part, over time by a child life specialist. However, in larger settings it may be desirable to incorporate others, such as parents and staff, or make referrals to affiliated departments or organizations, inside the healthcare setting or out (e.g., music therapy, early intervention, bereave-

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ment centers), to deliver portions of the psychosocial and developmental plan of care. Child life practice may be provided directly, indirectly or through ancillary means (that is, through play or care delivered by volunteers and prescribed by child life specialists). Direct services, such as trauma support, bereavement support, treatment support, and developmental assessment, continue to remain in the domain of the child life specialist. Indirect and ancillary service may be delegated to child life assistants, trained volunteers or parents to complement and add efficiency to child life care. Waiting room activities, special events, animal visits, infection control practices, and education programs also become extensions and complementary practices of the child life specialist care plan. Most outpatient child life programs offer a variety of educational components. Child life specialists may participate in, or be directly responsible for, coordinating group-based learning and support opportunities. These may include interdisciplinary surgical preparation workshops or camps for specific patient populations, such as cancer or dialysis patients, or for siblings of cancer patients. The child life specialist may also make follow-up phone calls to families after clinic visits to assess coping, to address questions or concerns families may have regarding their care plan, or to identify additional needs that require follow up by one of the interdisciplinary team members (e.g., specific questions the family may have for the clinical dietician). In addition, patient and family education can be provided in the outpatient care settings in a variety of ways. For example: • Providing waiting and treatment areas with programmed TV viewing. Alternating children’s entertainment with short parenting topics is effective. • Creating or distributing fact sheets for children and families. Many of these are available for purchase and can be reprinted with the hospital’s logo at a reasonable cost. It might be helpful to include a short quiz, a “draw-a-picture” opportunity or some other mechanism to measure or evaluate the participant’s understanding of the topic. Fact sheets and newsletters can be displayed on waiting room bulletin boards or counter brochure stands. Child life and nursing staff can also hand them out during visits or during the education and instruction portion of discharge. • Holding drawings or raffles tend to increase participation in education events. • Inviting guest speakers from local public service agencies (e.g., libraries, fire and police departments, utility companies) to provide pre-

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sentations in waiting areas and to healthcare team members. Many community agencies have educational programs or departments interested in providing programs in well-populated, child-focused areas. Waiting spaces in the emergency department or ambulatory setting present unique challenges, as well as opportunities, for the child life specialists, Routinely, a large number of people, caregivers, patients and siblings of widely varying ages, wait a considerable time in the space. As noted above, the space may be used for educational purposes. Injury prevention information, as well as information on child development and parenting topics, can be made available to the “captive audience” of parents and caregivers. Children, most often siblings, may wait unsupervised. Providing a kid-friendly, safe and inviting environment is an obvious and essential child life goal, yet achieving it is often problematic. Wait spaces need adequate seating and the opportunity for play. Secured ceiling or wall-mounted toys and recreation structures help keep children meaningfully occupied. Decorating for a season or a holiday can brighten an area and let patients and families know that the medical setting is a welcoming place for children. When outfitting a waiting area with play materials, the child life specialist must be aware of the challenge of keeping materials clean, maintained and replenishing them as a result of loss or damage. Budgets should be planned with this in mind. Infection control and environmental maintenance is an important consideration for any outpatient child life program. Toys and recreation equipment are cleaned in between every patient due to the nature of the population—an essential, yet time-consuming task. Each hospital adheres to its own guidelines on infection control and “toy” cleaning, but all child life specialists must address this issue. Child life assistants, interns, nursing students, volunteers and others can assist in this tedious and important process Trained volunteers can serve an essential role, not only in monitoring the use of equipment, but also in providing normalizing activities. Volunteers extend the services provided in wait spaces and lobbies, offering much needed diversional activities for stressed and bored patients and family members. They can assist families in meeting their basic needs, providing directions and information regarding conveniences (i.e., restroom, food, phone charging facilities) and activities that may be available for siblings. Many large corporations have volunteer corps that contribute significant volunteer hours to community charities and nonprofit organizations. Training is essential for volunteers working in any child life area, but it is particularly important in the emergency department due to the intensity of experiences in that setting. Volunteers in this setting must not only be ade-

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quately trained, but must also demonstrate an appropriate disposition and competence in providing services to patients and families under stress. Because of this, emergency department programs may require volunteers to work in other areas of the hospital prior to working in the busy and stressful emergency department.

Staffing Plans and Service Hours Staffing organization in outpatient areas differs greatly from standard inpatient units where the majority of treatment and procedures occur during business hours. Staffing plans must be organized and maintained in correspondence with patient flow. Clinic business hours, outpatient surgical schedules, and regional emergency department patient flow patterns must be evaluated to provide optimal child life service. Studying the flow of patients (i.e., both high and low census volume periods during a designated time frame) will identify the periods when child life services should be available to assist the majority of patients on a limited staffing budget. If, for example, this information indicates that Sunday and Monday evenings are peak periods in the emergency department, staffing the area during this time frame would prove to be most effective. Many facilities offer after-hour clinics in order to meet patient needs. The “vertical care” model of outpatient services lends itself well to the work preferences of part-time or “flextime” child life staff, allowing them to work during these peak times. Staffing plans should be reviewed periodically to offer and support quality patient and family education programs. Providing adequate coverage is not a simple task, but it is one that warrants careful attention. Many children’s first and lasting impressions are formulated in emergency departments or through single experiences in outpatient settings. The task of scheduling coverage or substitutions is lessened when experienced child life specialists are cross-trained and skilled in implementation of diagnostic treatment, as well as pain and fear management techniques, with a variety of populations. Hospitals today often follow a model of operation based on “Lean” business principles. Lean principles strive to create a more highly-skilled labor force, reduce injuries and complacency, and increase employee productivity and engagement, as well as levels of satisfaction among the clients and patients served. One component of this model is flexible cross-training, or the creation of so-called “universal workers.” Using this approach, job descriptions of child life specialists may blend with roles and responsibilities of other members of the interdisciplinary team. For the child life specialist, this may include monitoring a patient’s condition or status, performing housekeeping

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duties, managing patient’s behavior and socialization and recommending changes in the plan of care. It may also focus on flexible scheduling and rotating “universal workers” to perform these functions and duties with varying patient populations or in a variety of work settings on any given day. Outpatient surgical centers often open and receive patients before 6:00 a.m., Monday through Friday. Ambulatory and specialty care clinics, such as an orthopedic or craniofacial clinic, more often revolve around common community business hours. It is not uncommon, however, for many clinics to offer evening and weekend services in response to consumer demand. The emergency department, by definition, is always open and ready to respond to urgent and emergent patient needs. Many hospitals offer ancillary programs entitled “Fast Track” or “Walk-In Clinic” staffed by the emergency department for non-urgent, common illnesses when most primary care provider offices are closed for business. Priority for child life staffing in all of these areas must consider patient intensity and needs. The geographic range of people served by child life in these settings may be great. The bulk of emergency department patient volume may be regional and not exclusively within a given city or locality. Hospitals may have contracts with rural or other area hospitals creating business partnerships for service. Some hospitals are assigned geographic regions by state or local governments, stipulating the areas they must serve. Many hospitals extend their service and impact into the community or regional settings by establishing satellite clinics and free-standing pediatric emergency departments. These satellite services and facilities serve to increase patient access, offer high quality pediatric specialty services, and funnel surgical patients and those with special medical needs to the main hospital campus. They also have the practical value of strengthening the hospital’s brand and market share. In many states and larger geographic regions, monthly specialty clinics are held in rural settings or affiliated cities to extend hospital specialty services and refer patients to the main hospital as needed. Extensions of medical care are also provided through telemedicine, or the use of computerized technology to diagnose and treat patients in rural and remote settings. Each of these variations in the delivery of care presents its own challenges and opportunities for the implementation of child life interventions. For example, the child life specialist who is part of a telemedicine team may not have direct access to the patient, yet may use the technology to prepare and support children facing procedures. In some cases, skilled and experienced child life specialists travel with the interdisciplinary healthcare teams to provide service to satellite clinics. In these settings, child life specialists strive to offer a similar scope of service consistent with their hospital-based practice, often relying on technology to

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support their teaching goals. As previously mentioned, these settings may require the child life specialist to follow the “universal worker” model, performing non-traditional, collaborative patient care tasks to positively support the patient’s experience or expedite patient care or “throughput.” This may include assisting the team by preparing treatment trays or retrieving supplies during a treatment, assisting to turn over exam rooms by cleaning or preparing exam tables for patients, or possibly supporting the team in emergency or code situations when “all hands” are needed to support patient care because large hospital resources are not available. These role changes certainly contribute to strengthening team engagement, cohesion and productivity. They can, however, lead to conflict regarding the need to perform certain tasks, as well as differing priorities among interdisciplinary team members. For example, conflict may occur when a nurse prioritizes patient supervision and the development of activity of daily living skills, while the child life specialist finds the priority to be the facilitation of a patient’s coping and adjustment in the plan of care. In such situations, child life specialists may become frustrated with other’s perceived command over their professional focus and clinical decision making and must work with team members to address these differences. Peak volumes for the pediatric emergency department tend to be afternoons and nights, on weekends through Tuesdays. Ideally, child life staffing in the emergency department would provide daily service between the hours of 3:00 p.m. and 2:00 a.m. If staffing and budget are more restricted, then service between the hours 3:00 p.m. and midnight, Friday through Monday, is suggested for maximum patient and family benefit. An exemplary emergency department child life staffing plan would include daily programming between 10:30 a.m. to midnight, for a minimum of ten hours, with some variability to accommodate hospital obligations such as staff meetings, committee work or training sessions. Because of the intense and stressful nature of the emergency department setting, we recommend a three or four-day workweek with ten or twelve-hour shifts to afford emergency department child life specialists ample time for emotional recovery each week. Optimal staff-to-patient ratios have not been formally evaluated or reported in the literature. However, based on current observations and trends, we recommend that outpatient surgical units, invasive radiology and conscious sedation settings provide a minimum of one child life specialist for each ten to fifteen patients served daily. Specialty clinics settings can offer quality child life service with one child life specialist for each 25 scheduled patients. In a primary care setting, our recommended ratio would be at least one child life specialist per 30 scheduled patients daily. Emergency department settings need to consider patient volume, peak census periods, size and

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logistical considerations of units and facilities, as well as the emergency department’s level of accreditation. Accreditation level designates the acuity level of the patient served in the facility, ranging from urgent and less emergent treatment concerns to multiple, major traumas, such as motor vehicle accidents and trauma due to assaults and weapons. For example, in an emergency department serving 10,000 pediatric patients annually during peak hours, at minimum one child life specialist can provide a basic standard of psychosocial care to the bulk of that program’s patients. In “level one” trauma centers, where the most acute and critical patients are routed or airlifted by emergency medical services, more child life support would be required. On-call child life specialists may be beneficial in extending coverage and hours in the emergency department in response to episodic trauma and tragedies or sporadic high census periods. On the other hand, rural or community-based emergency departments (where the level of care is less acute and more like that of an urgent care pediatric setting) will require fewer child life support hours.

Other Service Tasks and Assignments Child life specialists in outpatient settings are frequently called upon to perform specific tasks or contribute to the care of children in particular circumstances. These include assessment of children’s pain, interaction with children who have experienced non-accidental trauma, and participation in disaster preparedness activities. Each of these activities is considered in the following sections.

Pain Assessment Pain assessment is a multidisciplinary responsibility. Child life specialists play a significant role in the assessment of pain in children. They can assist their units in posting approved, standardized pain scales in treatment rooms and other important patient care areas. Child and parent education and reinforcement in the use of these tools are to be implemented during routine child life interventions. A child life specialist’s report of a child’s pain during a treatment or a moment of diversion can offer the team important information regarding the child’s medical pain management, as well as the child’s coping. Facilitation of children’s coping during painful procedures through assessment and use of various coping techniques including distraction or “alternate focus” techniques have proven to be effective in emergency department settings for infants through older children (Ali, McGrath & Drendel, 2016; Karakaya & Gozen, 2016). Child life specialists play a critical

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role as advocates for pain reduction measures such as the use of topical anesthetics. They can also be instrumental members of pain management teams, bringing a significant perspective on children’s coping and responses.

Non-Accidental Trauma Non-accidental trauma patients (i.e., those who have been abused, assaulted, abducted or trafficked) are another population that child life specialists encounter in their routine service in both emergency department and ambulatory care settings. Some, but not all, states have specific programs for assisting this patient population. State governments may license registered nurses specifically to obtain and maintain the criminal evidence of sexual assaults, both actual and potential. These team members also are the first-line professionals, assessing and providing care for children and youth who are victims of human trafficking. These nursing practitioners, often referred to by the acronym SANE (sexual assault nurse examiner) or as “forensic nurses” are required to complete specialized training, certification or licensing for assisting this population and to follow specific protocols incorporated into the plan of care. A child life specialist can assist in this care as an advocate and provider of support for patients who may or have been abused. Working as part of the team, the child life specialist may perform such functions as preparing the child for the examination, assisting the child during the examination by providing coping or distraction interventions, and providing families with necessary information and support.

Disaster Preparedness Both inpatient and outpatient child life specialists are assigned specific roles of service in disaster preparedness teams; training for these events may be required. When a disaster occurs, child life specialists draw upon their keen knowledge of the healthcare facility and their interpersonal skills. The roles played by child life specialists during these events may be part of the traditional child life skill set or may require an expanded set of skills depending on the type of disaster, which may range from an environmental threat to community violence. Examples of roles that may be assigned to child life specialists in such circumstances include providing supportive care to worried family members or being an escort for unattended minors who are injured or displaced. They may also take on leadership roles, such as that of temporary labor pool manager, overseeing deployment of individual workers to support requests for personnel from the disaster’s command center.

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New Directions The delivery of healthcare is increasingly technological, fast-paced and decentralized, with a greater amount of care provided in homes and community settings. As a result, children and families must frequently process and cope with new information, interventions, pain, body alterations, and other life changes, with minimal support. This changing reality of healthcare offers a challenge to the profession of child life to find innovative ways of supporting children and their families. Child life clinical practice should continue to broaden its focus to address these needs. One aspect of human healing and healthcare that has not, and will not, change in spite of economics, regulations or technological advances, is the need for human connection, trust in others and hope. This is the foundation of child life clinical practice. Trust gives children and families the hope that drives their healing process and carries them through their experience. (For fuller consideration of the potential of child life in expanded settings, see Chapter 17.) EMERGENCY DEPARTMENT SPECIFIC ISSUES, PATIENT ASSESSMENT AND PRIORITIZATION At the beginning of a day, the only people who think that they will go to the hospital emergency department are the staff who work there. Patients and families do not plan emergency service visits. Therefore, the experience of the emergency department, simply by the unexpected nature of the need for treatment, is stressful. The perceived stress by a family is directly related to the intensity of the injury or illness of the patient. An unexpected visit, often accompanied by a wait to receive healthcare services, can lend itself to an anxiety-provoking and sometimes highly volatile experience. Child life staff can assist in this aspect of the emergency department in many ways. Often the child life specialist, or a designee under his or her supervision such as a child life assistant or trained volunteer, is responsible for providing “normalizing” activities and interventions in the lobby waiting space or treatment rooms for patients and families. This may be in the form of play programming or the creation of inviting physical environments. A child who enters the emergency department and finds a fish tank, for example, may calm down while waiting to be seen. Child-friendly environments begin to tell children that the emergency department is an “okay” or “safe place” place for them. It demonstrates that other children have been there and are welcome. The skilled child life specialist will take the unpredictability of the environment and address it with the patient and family. It is help-

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ful to ask patients what experience they have had with the hospital, clinic, or a doctor’s office in order to assess and benchmark how they are coping with this specific visit. Often, children in the emergency department are exposed to sights and sounds that are quite scary. A child who is in for a broken arm may see a child who requires sutures and immediately assume that he or she will receive the exact same treatment. By its very nature, the emergency department serves children and youth varying in age, diagnosis and treatment needs at any given time. For children, this is an open invitation for developing misconceptions and fertile ground for false fantasies. It is very important for the child life specialist to take an active role in clarifying the sights and sounds of a busy emergency department. Children’s overt cues, eye contacts, visible upset behavior, and clinging are all signals that a child life specialist can observe, assess and address. An emergency department can quickly become a hostile environment, due to circumstances including trauma and sudden injury, as well as the treatments required. Parents and patients can become upset or volatile upon hearing “bad news.” They may be forced to remain in the area for extended periods of time, waiting for treatment or the availability of a room if hospitalization is required, for example. The presence of a child life specialist can be critical in helping children and families cope with these circumstances. Child life staff can be instrumental in maintaining open communication with the family and the healthcare team, and can provide normalization activities for children to help them bide time. Perhaps the most challenging aspect of the emergency department is the variety of diagnoses, treatments and procedures that one encounters. The child life specialist must be ready for the unexpected and unpredictable. Most child life specialists rely on their own assessment procedures when seeing a patient. Different providers may treat the same injuries in different ways. The child life specialist must adapt interventions to suit each situation and provider. For example, a child in the emergency department with a laceration on the arm may receive sutures from one doctor or provider, while another may try a different method of addressing the same or similar diagnosis, such as use of glue or staples. This flexibility, which is one of the most interesting aspects of emergency medicine, is also one of the most important lessons to be learned by the emergency department child life specialist. A child life specialist in the emergency department must be familiar with a repertoire of treatments and know how to best educate and support the patient in the one that will be experienced. Open communication with the medical staff is essential in this process. A superstition among emergency department personnel is to never say the word “slow.” Once said aloud, the environment has a tendency to change.

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The unpredictability of patient volume, types of complaints, and acuity level are truly the only “givens” in an emergency department environment. Highvolume emergency departments often have after hour primary care or walkin clinics where patients can be seen in order to reduce the number treated in a main emergency department. In busy seasons, patients may be triaged in and sent to other areas. High volumes of patients present a unique challenge for child life. Prioritization is essential when a slow night suddenly becomes a very busy one. When assessing patients, priority should be made based on the invasiveness of the child’s treatment and the potential that he or she will require admission. A child life specialist must be able to meet and establish rapport with a patient and family very quickly; for this, a well-balanced bag of tricks is required. Entering a room, for example, with, a toy or coloring sheet sends important nonverbal information to children and families that the staff wants to make their stay more comfortable. A silly sticker on a nametag or bubbles, video games, videos or flashing toys with noise all communicate to a scared patient that the child life specialist is trying to make this experience more kid friendly and manageable. In a fast-paced, intimidating emergency department, which causes many patients to “shut down” or become hypervigilant, simple steps such as these speak volumes in the precious seconds that the child life specialist has to establish a relationship and treat a patient. Another important skill for the emergency department child life specialist is to be able to hold and direct a one-sided conversation. Some patients may not respond to the child life specialist. Essentially, the child life specialist is yet another stranger coming into the patient’s room. Not having the luxury of time to establish a trusting relationship with the patient, the child life specialist needs to be able to prepare the patient for what is about to happen via a one-way conversation. The patient may not acknowledge the effort, but the child life specialist can provide needed information while seemingly talking to the wall or to others. There is, however, risk in the use of this therapeutic technique. A child may not want, need or be able to tolerate all of the information that is provided, becoming overly excited or threatened. Because of this, it is imperative to continually monitor and assess the child and parents for responses that indicate that this technique should either continue, change or stop. Affect, eye contact, breathing patterns, muscle tension, responsiveness to commands and emotional behaviors can be the critical observations for assessing the positive or negative response to this technique. The child life specialist should periodically ask the child or a family member whether this technique or information is useful or helpful and should continue. Also, when relaying necessary information, it is important to have children or families repeat information to demonstrate their understanding.

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The child life specialist must be available to the medical staff in order to be effectively utilized. Because of the rhythm and pace of procedures and treatments, the child life specialist cannot expect the rest of the medical team to afford them the luxury of time for procedural preparations, education and coping strategies. Ideally, the child life specialist should be available whenever needed for patient care. This requires careful consideration of the staffing patterns. The visibility of the child life specialist also contributes to effective use of the service. It may be important for the child life specialist to “hang out” during the downtimes at the desk or roam the halls assessing care and treatment needs, setting the stage for involvement in the next case. This can also result in opportunities for advocacy, as well as informal staff training on topics such as children’s perceptions or strategies for enhancing coping. The environment can change instantly, and it is not always appropriate to expect that medical staff will call, page and wait for child life. Being visible and available, and showing the value of child life interventions, will help “sell” the importance of preparation, procedural support and coping to those providers that may be skeptical. Actions are worth a thousand words, and the emergency department teams may need to see child life services to believe in the possibilities, understand them and use them in the future. An orthopedic surgeon who witnesses a patient being prepared by child life for a conscious sedation and proceeds with a more cooperative, less anxious patient will be more receptive to child life interventions with future patients. Physicians and administrators may observe that calmer patients require less pain medication and sedation and recover more quickly, saving medical staff and time, room utilization and other resources—not to mention improving patient and family satisfaction. Perhaps one of the biggest lessons for any emergency department child life specialist is the need for multiple plans. Flexibility in thinking and planning is essential. Not only must emergency department child life specialists have a plan B, but they must also have a plan C, D, E, and F, as well a backup of on-call child life staff at times. When walking into a room to provide procedural support for a patient having an IV, the child life specialist may anticipate using bubbles as an initial distraction and coping intervention. Two minutes into the procedure the patient no longer pays attention to the bubbles and begins to become restless. Plan B may be a hide-and-seek book or an interactive, age-appropriate game on a tablet. The patient may not even look twice at this intervention. Plan C may be a stress ball that the patient may squeeze. This may work fine for a few minutes, but the nurse starting the IV is having a hard time finding a vein, so it is taking a little longer than usual. Plan D may be a party blower, given to the patient and his

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or her siblings. The child life specialist encourages the patient to “blow away the pain” or “scary feelings,” which works for a couple minutes before the patient becomes disinterested. Plan E may be to recite the ABC’s or to direct their attention to a 3D video screen or view a video through goggles. The same patient, who may return the very next day, may decide to look at the hide-and-seek book. Flexibility is, above all, the most essential skill for the clinical practice of the emergency department child life specialist. Portable technology devices can be effective in providing distraction, although they may have their limits. Children typically are familiar with such devices and spend much time with them on a daily basis. As a result, other traditional distraction toys are relatively novel to the patient and, therefore, may be more engaging. Educating staff on a variety of topics from the child life role to teaching child development is an ongoing activity. Especially in a teaching hospital, where various staff members rotate through each department, education occurs daily and is the responsibility of many individuals. It has been noted that emergency department staff find psychosocial issues important, but focus mainly (and understandably) on physical care (Alisic, Conroy, Magyar, Babl & O’Donnell, 2014). Therefore, it is important that child life specialists build upon staff interest regarding psychosocial matters and share information accordingly so that this aspect of care remains central. Emergency department child life specialists may conduct staff in-services, speak at rounds, or individually introduce themselves and their services to staff in the emergency department. It is difficult to reach every staff member at one designated time because of the large and rotating shifts. Recordings of in-services, in-service outlines, newsletters, participation in team meetings, and informal afterhours visits are all pathways used by successful child life specialists to educate their staff as to what is important for children and families and the role the team can play. A difficult reality for the emergency department child life specialist is the need to help a family that has suffered a loss. A death that occurs in the emergency department is most often unexpected, sudden or traumatic. The raw emotion of a grieving family can be difficult to digest and understand. Every family has its individual ways of coping. A child life specialist may be a sounding board, a listener, an advocate, an educator (especially with siblings) and a child-oriented friend in these unfortunate circumstances, and may be involved in a variety of tasks. Some create handprints, footprints or other memory items for family keepsakes such as thumbprints for a charm to be sent home a future date, although many of these legacy activities may be prohibited in some areas by the medical examiner prior to a patient’s autopsy. Others work with siblings helping to explain, comfort and work through

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their emotions. Some assist families with logistics such as bathroom, drink and personal phone charging services. All in all, the child life specialist is part of the multidisciplinary team consisting of doctors, nurses, social workers, chaplains and others in helping to meet the needs of the family during this extremely difficult time. Child life specialists are also members of stress debriefing teams at institutions that support staff in processing patient deaths. As discussed earlier, a challenging aspect of work as a child life specialist in an emergency department is the assessment and prioritization of patients. The pace of an emergency department often dictates that multiple and concurrent patient needs be addressed simultaneously. There is no magic formula to determine which patient would benefit most from child life interventions. There are, however, pieces to the puzzle that the child life specialist can extract from many different sources to best determine needs and develop a plan of care. The first piece is the triage code. This is a measurement of patient acuity assigned to each patient by a nurse upon entry to the emergency department. A child life specialist can use this information to understand how sick or injured the patient is and consider the priority level for administering the medical attention. A patient who is triaged and immediately seen by the medical staff may require immediate child life attention as well. Treatment may be administered very quickly. If circumstances allow, the child life specialist can explain to the patient and family in developmentally appropriate terms what is happening to them or is about to occur. Family intervention can be an important component of care for the urgent patient. The child life specialist can assist the family by explaining or interpreting what the medical team is doing, offering support and suggestions for coping, providing information regarding roles of team members and other hospital personnel, as well as the locations of quiet rooms, restrooms or other needed services. In addition, support can be provided to siblings. A second piece of the puzzle is the “chief complaint,” which aids the child life specialist in determining the procedures and treatments that may be forthcoming. A laceration, for example, may require sutures, glue or staples. Once familiar with the emergency department, the child life specialist will be able to anticipate the treatments that typically happen for specific diagnoses and patient complaints. However, circumstances often change. Therefore, it is important that the child life specialist have excellent communication with nursing and providers to determine the most appropriate supportive interventions to address each patient’s individual psychosocial or coping needs. Patients who will require invasive procedures are given higher priority by the triage nurse and may receive team services sooner. Also given higher

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priority are patients who come to the emergency department via ambulance service, or are accompanied by the police or child protective services staff, as well as those with lacerations, bone reduction needs, and those who have experienced sexual assault or will require surgery or admission. It is essential for the child life specialist to attempt to prepare these patients and/or their family members for what they may experience and how best to cope. Strategies for preparation may include the use of admission or surgical photo books, tablet applications, videos, and medical play with stuffed animals or dolls to demonstrate what is going to occur. The child’s developmental level is another important piece in completing the emergency department service puzzle and is integral in planning child interventions. Infants need to remain with their primary caregivers whenever possible in order to maintain a sense of trust. Child life can assist in this by remaining with an infant whose parent is unavailable, providing a safe, less-threatening presence. A toddler may experience difficulty in autonomy secondary to being restricted in an exam room, for example. A child life specialist can provide developmentally appropriate interventions to help the child feel in control. Preschool children, whose understanding of events in the world is characterized by magical thinking, may feel as though a trip to the emergency department is punishment. Child life can provide the opportunity for medical play, or procedural explanations that focus on the reason for the visit to clarify their misconceptions. School-age patients may experience a lack of control in this stressful, often chaotic environment. Child life can provide choices for these patients and, when possible, educate and involve them in the process of the emergency department visit. Adolescents may try to exert their control over the situation and be concerned about their privacy. Child life can provide support for this age group, carefully guiding them through the emergency department process without taking away their sense of independence. The child’s age, complaint and name are, at times, the only information a child life specialist may have before meeting a patient. It is essential that the emergency department child life specialist be well versed in child development in order to assess whether a patient is developmentally appropriate and responding to the stresses encountered within or beyond normal ranges of their age. A two-minute assessment of developmental level is sometimes all that is afforded the child life specialist in this fast-paced environment before a procedural support is performed. Although age can sometimes be a clue, it is not always the best way to assess child life priority. Sometimes the teen who has just been involved in a car accident is much more anxious than the toddler who has injured her arm. This is where the expertise of the child life specialist comes into play. Overt

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cues such as crying, decreased eye contact or visible upset are indications that the child be given priority. Parental support, or absence thereof, is another factor in assessing and prioritizing patients. Children whose parents are also being treated by medical personnel in another facility or another room are a priority. These children, who typically have come into the emergency department due to a trauma, are frightened and surrounded by an unfamiliar environment and strangers. The child life specialist can become the trusted, non-threatening liaison between the patient and the medical staff. Parents serve as a secure base for children in an unfamiliar environment. However, some parents experience extreme fear or discomfort in the emergency department environment and, therefore, are unable emotionally to participate in procedures and treatments that their child may undergo. If the parent elects not to be present during procedures and treatments, a child life specialist should accompany and support the child. Alternatively, the child life specialist may prioritize the parent over the patient, teaching, coaching and supporting parents, enabling them to better understand and support their child. Length of time a child is likely to spend in the emergency department is another important consideration for the child life specialist. Frequently, patients remain in the emergency department for extended periods. The child life specialist can use this time wisely, ensuring that the patient and family understand what is happening, preparing them for the next step in the process and helping to make the environment as normal and comfortable as possible, for example, by providing developmentally appropriate activities. If a child life specialist knows that he or she has the luxury of time with a patient, that time can be utilized accordingly. Assessment and prioritizing will routinely leave some patients without experiencing the direct benefit of child life service. A child life specialist must continually ask this simple, yet complex question: Where is my expertise and service most needed at this moment? One can’t be everywhere at once. A child life specialist may spend two hours with a trauma patient and miss several patients who were admitted and discharged from the emergency department during that same time span. The trauma patient and family were the priority of the child life specialist at that time. Once the priority is made and the intervention has begun, the child life specialist must then let go of the other seemingly high-priority needs within the emergency department—a concept often difficult to reconcile in child life clinical in practice. The use of technology continues to quicken the pace of the emergency visit; child life must be aware of this change and, correspondingly, make use of technology to expand the scope of clinical interventions.

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AMBULATORY CARE SETTING SPECIFIC ISSUES Other ambulatory care settings provide the child life specialist with a broad range of opportunities for interventions. There is often a captive audience waiting patiently, or perhaps not so patiently, for what may be a considerable amount of time to receive care from a provider or team. The patient is typically accompanied by a caregiver and often other family members, as well. Unfortunately, outpatient services are all too frequently designed to accommodate the business of healthcare and the convenience of providers, rather than the comfort of the ones receiving care. This is evident in the use of multiple open cubicles for patient triage, which allow children to observe or hear the reactions of others to care, triggering anxious responses in the observing child. Waiting rooms may be crowded with uncomfortable chairs and have limited materials for play during lengthy waits. Child life interventions will be dictated by the setting and will differ greatly depending on the nature of the children and families served. In an orthopedic clinic, for example, a child life specialist may be involved extensively in preparing patients for a casting, cast removal, radiological procedures or surgery, while in an allergy/immunology clinic the focus may be on preparation for, and support during, skin tests. A child life specialist in a high-risk infant clinic may focus more on developmental assessment and parent education. Child life roles and practices differ with each ambulatory setting, even within a single institution, and continue daily to be modified, created and redefined. There is no standard method of organizing pediatric ambulatory clinics, although the tendency is to organize them by specialty based on the child’s medical or developmental diagnosis. Children’s hospitals and larger research university hospitals sponsor a large number of specialty clinics (e.g., renal dialysis, endocrinology, mental health, and wheelchair or prosthesis clinics). Some specialty clinics may actually have subspecialty clinics—for example, an orthopedic clinic with subspecialty hand or scoliosis clinics. Some settings include primary care clinics, also known as “well baby” or “sick child” clinics, monitoring infants and young children for normal childhood illnesses and immunizations. Each hospital or institution has its own system, and the logistics of providing child life coverage for clinics can be challenging. Clinics may meet on different floors, in different buildings and, in some instances, in different campuses or cities. The physical space for a clinic may remain constant with the program or service utilizing the site changing from day to day. A clinic environment may at first seem overwhelming to the child life specialist. Typically, the number of patients alone, excluding the family members accompanying each patient, is staggering.

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The appropriate use of child life services can be a challenge in these settings. It is therefore important that healthcare staff be aware of the child life specialist’s appropriate role for their clinic, the range of services they can provide, and how to contact a child life specialist when needed. Traditionally, the numbers of child life specialists assigned to ambulatory care services and clinic areas are disproportionately low compared to the number of patients served. Therefore, the child life specialist must prioritize clinic areas and interventions to adequately and appropriately provide coverage and service. When setting priorities, the following should be considered: • • • • •

The type of disease or disability of the population served The acuity levels or the intensity of their illness The type or invasiveness of procedures and treatments given in a setting The average number of procedures in each area The likelihood that patients from the clinic will be admitted for inpatient care • The average age of the patient • Scheduling patterns and patient volume Child life services may be initiated in a given area for specific reasons that may dictate the nature of the service provided. For example, a program manager may realign staff positions, converting a nursing or other team position into a child life specialist position, with the goal of enhancing clinic service and improving patient satisfaction and experience. As the need for child life services will likely exceed the capacity to deliver those services, it is imperative that child life specialists stay focused and realistic about what they can provide. The child life specialist must clearly define the work to be accomplished and avoid the urge to be distracted by competing needs. An important aspect of this work is the dissemination of information to prepare children and families and support their coping. This may involve the creation of informational materials or referral to other resources and includes the following activities: • Mailing packets of information to homes • Referring children and families to videos or information on line • Inviting children and families to events or classes for specific population needs The clinic child life specialist must be proficient in patient assessment and knowledgeable about multiple medical and nursing procedures. Many of the techniques used to assess and prioritize patients in clinics are identical

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to those used in the emergency department. Age and developmental level of the patient, his or her coping skills, the availability of family support, and the child’s familiarity with procedures and processes all are important considerations. One difference, however, in the outpatient clinic is the nature of the clinic itself. Patients and their families typically know that they are going to the clinic to see the doctor on a given day and, therefore, have the opportunity to prepare for the visit, as well as form expectations regarding services they want or need. As a corollary, child life specialists in ambulatory clinics also have the benefit of some knowledge of the patients they will see on a given day, unlike their counterparts in the emergency department. Child life specialists working in certain clinics, such as those serving children with chronic illnesses, or behavioral issues, may repeatedly interact with patients over time. This offers a distinct advantage in assessing patient needs and coping skills. For these patients, continuity of care can be maintained and follow up can be offered to the patient and family when the child is admitted for inpatient care or seen in the clinic for subsequent visits. Clinic child life specialists can also provide important information to inpatient child life specialists and healthcare team members regarding coping styles and preferred methods of procedural supports, as well as social and developmental issues. Referrals to benevolent organizations, camps, home-based school services, parent education, and respite care can all be valuable components of child life service in these settings. The ambulatory surgical center has long been a focus of child life service and priority interventions. Preparation of children for surgery was among the earliest primary responsibilities of child life specialists in inpatient settings. As surgery began to move to the outpatient setting, so did the need for child life and preparation. The routine within ambulatory surgery centers may be similar to that of clinics. Surgical centers often schedule specific types of surgeries or procedures on certain days by particular physicians. These may even be labeled as “clinics,” such as a circumcision clinic or biopsy clinic. Child life specialists may prepare patients and families, sometimes days ahead of time or, perhaps, just minutes before the surgery or procedure. Tours and orientations of the surgical area are often provided prior to surgery to prepare the patient and family for the experience, clarify misconceptions and address fears. Most recently, preparation is offered in video formats with the goal of making this information available to a greater number of patients and families. Many hospitals refer families to online preparation content to support patient and family education. This may create a challenge for child life specialists, however, as they are not immediately available to answer individual questions that may arise while viewing content, nor are they able assess coping and understanding.

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TOOLS AND TECHNIQUES Having covered issues specific to each setting, we will return to the core of the matter—the application of child life tools and techniques in the emergency department or ambulatory care setting. The basic child life tools of outpatient setting, the toys and recreation equipment, can be grouped into three functional categories: fixed, consumable, and therapeutic. Regardless of category, the equipment selected for use by the child life specialist must facilitate play, education or personal support and reflect the cultures, interests and needs of children and families in the region. Quality “fixed” tools (i.e., those attached or secured in the setting) can be an extremely valuable in promoting a positive patient experience and satisfaction. These may include wall-mounted toys, climbing or maze areas for exploration, interactive educational exhibits, electronic games with varying levels of sophistication, and televisions with prescribed and developmentally appropriate viewing. These materials offer an indirect avenue for child life staff to influence the experiences of children in outpatient settings. Given staffing realities, the provision of these materials may sometimes represent the only service child life can provide for some children in high-volume outpatient settings. Consumable child life tools vary greatly and represent the bulk of materials used in most child life programs. These items may be intended for a single patient use or are given to the child to take home. Consumables also include less expensive items that multiple children may play with in treatment rooms, but tend to disappear or may not be constructed to withstand extended play. Items in this category include such staples as common, developmentally appropriate toys, books, and games. Materials used by multiple children must be cleaned and inspected routinely for infection control and safety, following policies and procedures that are developed under the guiding eye of infection control professionals. Other consumables may include diapers, clothing or hygiene items that support the immediate comfort and dignity needs for children away from their homes. Each setting must make selected consumables such as coloring sheets, small toys and underwear accessible to all team members. Lockable storage is necessary for child life service to ensure the continuing availability of these items. Therapeutic tools used for focusing and redirecting attention, promoting relaxation, or teaching specific information must be maintained for use by the child life specialist. While many consumable tools may be used in child life clinical practice in a therapeutic manner and may be more readily accessible, certain tools must be held exclusively by the child life specialist to assure their availability when needed. Examples include:

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• Kaleidoscopes, magic glitter wands • Electronic props that feature flashing lights, movement, sound, music • Small electronic hand-held games, as well as tablets equipped with a variety of developmentally focused applications • Books or applications that require a child to search and find or manipulate objects • Teaching dolls and procedural preparation kits • Virtual reality systems or video viewing systems that provide novel viewing experiences (and meet the technical and safety requirements of the setting) Child life specialists in outpatient settings, as well as inpatient settings, may use coping kits. These kits are collections of tablets, toys and other items intended for therapeutic use only. They may be kept in bins strategically placed in the treatment areas or in packs or bags carried by the child life specialist throughout the shift. As procedures and treatments can occur in multiple areas, often concurrently, specific therapeutic tools must be readily accessible. Coping kits for preschoolers may include: • • • • • • • •

Small talking electronic games Paper party blowers Wands filled with glitter or interesting shapes or objects Hide-and-seek books Squeeze balls, clay or another malleable substances Pinwheels Music-producing devices Bubbles with multiple blowing wands

Popular cultural trends have shifted to favor electronic diversion tools. As mentioned previously, we believe that children continue to be interested in and desire simple distraction supplies for coping such as those presented above as they represent a novel alternative for the technologically-aware child. These items can be used to focus attention or to induce imagery, helping a child cope with fear and pain. The gold standard of developmental care in any healthcare setting would include all professional team members utilizing coping kits, positioning for comfort and multiple psychotherapeutic interventions in the treatment of children. Professionals providing this care should be trained in the selection and use of props and imagery techniques, measured for competence and annually evaluated using quality assurance standards set by the facility. This is a worthy target when we consider that the volume of patients served in outpatient settings is great and the health-

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care dollar is not, and when we recognize that ill and injured children are treated every second of every day. By accepting this strategy, child life specialists can dramatically expand the scope of their service, moving from simply being the provider of support to individual children to influencing treatment of many otherwise beyond their reach. A number of authors have provided useful guidelines for assisting children and families in coping with healthcare experiences (e.g., Kuttner, 1996, 1989, 1988a & 1988b; Achterberg & Lawlist, 1980; Achterberg, 1985; Klein, 2001; Olness, 1981). The most useful techniques for emergency department and other ambulatory care settings include those that are quick in focusing attention and utilize imagery, redirecting attention away from the associated fear or pain of the healthcare experience. The use of selected props, imagery, and coached breathing are most effective in helping a child to cope with a procedure when applied in a planned order, progressing from the least restrictive to most restrictive interventions, following this pattern: 1st The child is coached, with self-control 2nd The child is coached, with self-control and physical assistance 3rd The child is coached, with self-control and physical restraint Whenever possible, even in situations deemed urgent or emergent, children and families should be afforded self-control options prior to implementation of more restrictive measures. Recommendations for distraction and focusing strategies by age include the following: • Birth to 2 years Use of positioning and alignment, a secure or firm touch, stroking, patting, rocking, music, mobiles or other visual props • Ages 2 to 4 years Play, storytelling, reading, breathing, and blowing • Ages 4 to 6 years Same as previous age adding talking and sharing interests • Ages 6 to 11 years Same as previous age, and adding counting, chanting, singing and/or humor • Ages 11 and older Same as previous age, and adding multi-sensory imagery, and/or progressive relaxation

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Hypnotherapeutic techniques or “tricks” are very effective in engaging and redirecting children’s attention to address their fear and pain. Training in these techniques is essential and is offered in multimedia formats. Professional instruction, coaching, and supervision are recommended prior to engaging children in these techniques. Kuttner (1996, 2010) provides a particularly rich resource for healthcare professionals and parents in comforting and guiding children through frightening or painful healthcare experiences. In addition, Solomon and Saylor (1998) present a training course for professionals on multiple techniques and strategies used during invasive procedures, and Sugarman (2006) provides a practical, in-depth introduction to mindbody methods for pediatricians and other healthcare providers. There are many useful videos available on the Internet demonstrating application of these techniques, which can be powerful in engaging children’s imagination and are easily taught to, and coached by, parents and others. They focus the child’s imagination on an action, feeling or sensation, and provide “anchoring” statements labeling or identifying the child’s experience, suggesting that they are comforted, experiencing less pain or fear. Examples of anchoring statements include the following. • You feel more and more calm • You are aware of others talking, but you are relaxed by listening only to my voice • You are aware of what is going on, but you are not bothered by it • You are comforted by your own calm feelings • You know just how to help yourself Other techniques that are useful include progressive muscle relaxation and coached breathing experiences. The simple tension and release of the hands can be effective, but the experience is powerfully amplified when applied to the entire body from head to toe, resulting in a total relaxed state. Coached breaching techniques are enhanced when applied in combination with props and other techniques. A cleansing breath, blowing “the scary feelings out” or away, or inhaling and exhaling at desired rates are all effective techniques that readily change a patient’s breathing patterns, and ultimately their physiological status, to a more relaxed state. A forced exhale is one of the most useful coached breathing techniques. It is particularly effective when the exhalation is forced in a fast, hard, and long push manner, as during a pulmonary function test. It can be easily coached and repeated whenever the patient experiences anxiety or pain, resulting in a fast-acting relaxed sensation.

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A “countdown” is another technique that is very helpful. The child life specialist simply counts from five to zero while lessening the tempo and intensity with each number spoken. When the coach’s voice finally arrives at zero, a whisper quality produces a calming affect for all involved. The countdown can be repeated to gain an even more relaxed state, if desired. DOCUMENTATION It is important that child life specialists in the emergency department or ambulatory setting document the work they have done with children and their families. However, documenting in outpatient medical records presents a challenge, regardless of the setting. Patients are seen and discharged at a pace that makes it difficult for all team members to manage. There are, however, priorities that must be respected. Physicians and nurses must complete all documentation requirements to meet minimal regulatory standards. It is not uncommon to observe a waiting line for a patient paper chart after a complicated encounter or during a disaster. Electronic medical record (also known as “EMR”) charting might alleviate this, but it also brings a set of challenges that have yet to be fully addressed. These include issues of patient confidentiality when records are widely available in electronic format, as well as the need to assure that those who do need the record have ready access to it, regardless of their location. The time spent entering notations in patients’ records can be time-consuming, but important. Standardizing patient care chart notes or the use stickers based on child life practice priorities and key interventions (e.g., procedural preparation, treatment support, injury prevention education, developmental and play support, family interventions) expedite the process. Most productivity measures and process improvement plans require ambulatory child life specialists to maintain some form of statistics. The minimum data recorded may include the number of patients receiving child life interventions, their priority level, and the specific types of interventions provided per shift. This information may be used or reported in a variety of ways depending on the program and institution. Data may be compiled annually for budget planning, used when proposing additional positions, or for annual communication to senior leadership or quality improvement teams regarding child life service impact. Missed opportunities may also be tracked. For example, a child life specialist working with a trauma patient and family in the emergency department or with a patient in the clinic facing complicated issues may be unavailable to work with other patients during this interval. Reporting the number of patients not served provides valu-

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able supportive justification for new or expanded child life coverage. It may also provide rationale for a change in child life practice or shape the scope of service. PROFESSIONAL ISSUES Educating staff is particularly challenging in each of these transient healthcare environments. It is rare that an opportunity presents itself to include all staff at a single meeting. The child life specialist can address this issue by providing in-services, newsletters, and games to increase awareness of, and knowledge about, child life services. Many child life specialists teach associates during required annual training and competency measurement events. Visibility is the most important factor in advocating for child life utilization and philosophy. When the nurse or doctor sees a child life intervention in progress and witnesses firsthand the difference it makes with the patient, education has occurred. Actions speak louder than words, and so does the impact of child life when witnessed by a skeptical staff. Education is an ongoing and often repeated process, especially with an ever-changing team of players. As discussed earlier, it is not uncommon for outpatient healthcare team members to “flex,” cross duties and assist each other in multiple tasks to assure quality and efficient care following the universal worker model. Child life specialists must continually keep in mind that this flexing of duties and tasks must never be done instead of their child life patient care priorities. Before engaging in certain tasks such as patient transport, hospitals may require competency training. Hospital policies may also stipulate that some tasks are reserved for designated personnel. The child life specialist must be aware of these limiting factors when offering assistance. Nevertheless, with this in mind, it is also clear that the goal for all involved is to move children and families through the healthcare visit as quickly as possible, thus decreasing the stress of being in the facility and away from more normal family routines and comforts. Assisting others with their tasks may facilitate this goal. For example, child life specialists may consider paging or calling doctors, radiology or the lab to expedite service for trauma patients when all team members are in a response mode. A child life specialist may assist a busy nurse by collecting supplies needed for a laceration tray, cleaning a room or helping move waiting patients to designated exam rooms or treatment areas. Transporting and escorting patients to radiology may also be of assistance to the team and contribute to the care of the patient and family. Similarly, child life specialists may contact other ancillary ser-

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vices, such as chaplains and social workers, when necessary. Most facility policies do not state that only a single discipline can contact a physician or set up a procedure tray. Courtesy and teamwork are qualities that make or break a team. The ability and willingness to flex from the traditional role of the child life specialist to indirectly assist patients and support team members can be a valueadded service that supports advocacy efforts and patient care. Many of these flex moments provide valuable opportunities for time with the patient and family—time to build therapeutic rapport, assess anxiety or pain and, perhaps, to offer a quick preparation or hospital orientation in the scurry of an acute situation. These are valuable moments that maximize use of time and demonstrate child life’s responsiveness and team orientation. It is often these actions that become the catalyst for cultural change on a unit. Healthcare teams have personalities that are often characterized by the nature of their work. Emergency department teams in particular can be demonstrative and known for their intense, sometimes-unforgiving nature. These caregivers have had firsthand experience and responsibility that most people only glimpse on the television. They routinely encounter throngs of patients with minor to life-threatening problems. Patients and families want to enter an emergency department, be seen, receive treatment and be sent on their way as quickly as possible—a goal shared by members of the healthcare team. Child life specialists must support this goal. They must be able to assess a developmental level and provide normalizing activities, education and coping support strategies, sometimes in a matter of minutes. Time is of the essence, and the effective child life specialist in the emergency department or ambulatory surgery center must be able to assess and implement interventions at this very rapid pace, recognizing that they may well need to let go of specific tasks or concerns they might normally address if in an inpatient setting. On the other hand, in certain ambulatory settings such as dialysis or cystic fibrosis clinics, the pace can be slow, even arduous, at times. The opportunity to know patients and families intimately over a long period of time and deal with their potentially complex issues requires child life specialists to master a very different set of professional skills. They must become adept at the development of long-term relationships and skilled at task analysis, developmental assessment and the sequencing of care plans over a period of years or even decades. In such cases, child life specialists may serve as transitional care leaders, preparing children and families to move into adult medical care facilities upon legal age. The unique demands of each of these areas of healthcare suggest that only seasoned, skilled and experienced child life specialists be placed in these settings.

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It has been repeatedly noted that the work of the child life specialist brings softness or a more human and natural flow to the work of the healthcare team. The work of child life adds fun, humor and play, as well. These qualities, as well as the patient advocacy role of the child life specialist, can shape and change the care priorities and personalities of the healthcare team in each of these areas. Self-care is essential in outpatient work, especially in emergency department settings. Practicing in isolation by shift, population or location is very common. The child life specialist can become a team leader in difficult situations—as bereavement support for trauma patients, as emotional support during difficult or painful procedures and events, or as advocates for unpopular points of view. The stress associated with this work must be managed or it will take its toll on the child life specialist, the team, and ultimately the children and families that are served. It is recommended that all child life specialists receive clinical supervision and supportive leadership to maintain boundaries and quality of care. Personal supervision, similar to that characteristic of other mental health professions, is recommended. Periodically, crisis management defusing or debriefing sessions can be extremely helpful for the emergency department or child life staff. Models for stress management sessions, such as those offered by the International Critical Incident Stress Foundation (https://icisf.org), are effective in addressing the chronic or acute stress of staff members. Debriefing sessions are not, however, psychotherapy. They are short group opportunities to release stress and minimize the wear and tear of the secondary and chronic crisis that is common in emergency medicine. These brief sessions are designed to discuss the circumstances of a recent incident, as well as staff members’ reactions to it. Such sessions may also identify and address symptoms the staff may be experiencing and the forms of therapeutic assistance available to them as they re-enter their setting. Occasionally a temporary unit reassignment can also relieve chronic stress, supporting the skills and longevity in the child life professional. CONCLUSION The child life profession has celebrated more than a half a century of service to children and families during a period of unprecedented change in the history of healthcare. Child life foundations, practices and training continue, however, in a tradition that is largely based on the systems and needs of inpatient children and families. Families that experience a life-changing episode in a matter of hours, as well as those that raise their children with healthcare

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teams as the extended members of their families, need greater commitment from our profession. We must celebrate our great success in facilitating humane, child- and family-oriented practices in inpatient settings. However, we must continue to extend our care and strategies to those areas and individuals not yet influenced by the presence of child life service. Too many children leave the healthcare setting frightened or confused because child life practices were not afforded them. Ambulatory care settings and the emergency departments are challenging environments for the child life specialist. Each offers opportunities to provide much-needed child life interventions for a rapidly-changing patient population. Each area serves as a gateway to the entire healthcare system. The patient experience in either of these areas will set the tone for future healthcare encounters; child life care in these settings serves a preventative role, preparing children and families for better coping, if and when admitted to the hospital. The greatest catalyst for expansion of outpatient child life service will come at the grass roots level, through each child life specialist and department and in each facility and community. Greater resources must be allocated or shifted to the outpatient arena—resources of seasoned child life specialists, time, and money. In extending services to these areas, especially when all resources are finite, we may need to investigate or create alternative delivery systems and practices. This may include reexamination of child life skills and role definitions including, perhaps, adoption of a model analogous to that of a clinical nurse specialist, a role that does not carry a specific patient load, but instead serves as an advisor to others on the team. Or perhaps child life can take on aspects of the role of patient advocate, dedicated to increasing awareness of and provision for the psychosocial needs of children and their families in a changing environment. As we move into the future of child life, we must remain cognizant that outpatient healthcare is not only the gateway into inpatient care but, more often than not, is the sole healthcare service that children and families experience. Yet in that encounter, children and families are all too often rushed through the system, with little time to digest and understand the experience. These children and their families need and deserve child life intervention and service to grow, flourish and cope with the rapidly changing healthcare environment. REFERENCES Achterberg, J., & Lawlist, G. F. (1980). Bridges of the mind. Champaign, IL: Institute for Personality and Ability Testing. Achterberg, J. (1985). Imagery in healing. Boston: Shambhala.

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Alcock, D., Feldman, W., Goodman, J. T., McGrath, P. J., & Park, J. M. (1985). Evaluation of child life intervention in emergency department suturing. Pediatric Emergency Medicine, 1, 111–115. Ali, S., McGrath, T., & Drendel, A. L. (2016). An evidence-based approach to minimizing acute procedural pain in the emergency department and beyond. Pediatric Emergency Care, 32(1), 36–42. doi:10.1097/pec.000000000000066 Alisic, E., Conroy, R., Magyar, J., Babl, F. E., & O’Donnell, M. L. (2014). Psychosocial care for seriously injured children and their families: A qualitative study among emergency department nurses and physicians. Injury, 45(9), 1452– 1458. doi:10.1016/j.injury.2014.02.015 Bloom, B., & Simpson, J. L. (2016) Tables of summary health statistics for US Children: 2015 National Health Interview Survey. Atlanta, GA: National Center for Health Statistics. Child Life Council. (2006). Directory of child life programs. Rockville, MD: Author. Child Life Council. (2002). The official documents of the Child Life Council. Rockville, MD: Author. Durand, D. J., Young, M., Nagy, P., Tekes, A., & Huisman, T. (2015). Mandatory child life consultation and its impact on pediatric MRI workflow in an academic medical center. Journal of the American College of Radiology: JACR, 12(6) 594– 598. Gursky, B., Kestler, L. P., & Lewis, M. (2010). Psychosocial intervention on procedure-related distress in children being treated for laceration repair. Journal of Developmental and Behavioral Pediatrics, 31(3), 217–222. Heilbrunn, B. R., Wittern, R. E., Lee, J. B., Pham, P. K., Hamilton, A. H., & Nager, A. L. (2014). Reducing anxiety in the pediatric emergency department: A comparative trial. The Journal of Emergency Medicine, 47(6), 623–631. Karakaya, A., & Gözen, D. (2016). The effect of distraction on pain level felt by school-age children during venipuncture procedure: Randomized controlled trial. Pain Management Nursing, 17(1), 47–53. doi:10.1016/j.pmn.2015.08.005 Klein, N. (2001). Healing images for children. Waterton, WI: Inner Coaching. Krebel, M. S., Clayton, C., & Graham, C. (1996). Child life programs in the pediatric emergency department. Pediatric Emergency Care, 12, 13–15. Kuttner, L. (1996). The child in pain: How to help and what to do. Berkeley, CA: Hartley and Marks. Kuttner, L. (1989). Management of young children’s acute pain and anxiety during invasive medical procedures. Pediatrician, 16, 39–44 Kuttner, L. (1988a). Favorite stories: A hypnotic pain reduction technique for children in acute pain. American Journal of Clinical Hypnosis, 30, 289–295. Kuttner, L. (1988b). Psychological treatment of distress, pain and anxiety for young children with cancer. Journal of Developmental and Behavioral Pediatrics, 9, 374–381. Kuttner, L. (2010). A child in pain: What health professionals can do to help. Bancyfelin: Crown House Publishing. National Center for Health Statistics. (2017). Health, United States, 2016: With chartbook on long-term trends in health. Hyattsville, MD: Author.

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Olness, K. (1981). Hypnosis in pediatric practice. Current Problems in Pediatrics, 12, 1– 46. Solomon, R., & Saylor, C. (1998) Pediatric pain management: A professional course. East Lansing, MI: Michigan State University. Sugarman, L. I. (Director/Producer). (2006). Hypnosis in pediatric practice: Imaginative medicine in Action [Book and DVD]. Carmarthen, United Kingdom: Crown House Publishing. Stevenson, M., Bivins, C., O’Brien, K., & Gonzalez del Ray, J. (2005). Child life intervention during angiocatheter insertion in the pediatric emergency department. Pediatric Emergency Care, 21(11), 712–718. Williams, Y. B., & Powell, M. (1980). Documenting the value of supervised play in a pediatric ambulatory clinic. Journal of the Association for the Care of Children’s Health, 9, 15–20.

Chapter 16 CHILD LIFE AND EDUCATION ISSUES: THE CHILD WITH A CHRONIC ILLNESS OR SPECIAL HEALTHCARE NEEDS PATRICIA L. WEINER, MAGGIE HOFFMAN, AND CYNTHIA SCHERR ROSEN INTRODUCTION pproximately six million children ranging from newborn to seventeen years of age are hospitalized for a variety of conditions in the United States each year. Many children who are hospitalized have some type of a chronic illness, with asthma and diabetes being the most common chronic conditions. In the 2009 edition of this chapter, we reported that estimates of the proportion of children in the United States with a chronic illness vary greatly, with some estimates as low as 13.7 to 17 percent (Stein & Stein, 2002) and others as high as 20 percent (Bauer, Duitch, & Birenbaum, 2003). Information available since that date confirms that the proportion of children with chronic disease remains as high, if not higher, than in the past, with asthma being the fastest growing health issue (U.S. Department of Health and Human Services, 2011). As medical research and technology continue to advance, more and more children are living into adulthood and entering the schools. These children are spending less time in hospitals and more time at home, in their communities and at school. At the same time, trends in education are bringing more diversity into the classroom. Children with special healthcare needs and other forms of disabilities are attending their neighborhood schools in growing numbers. When hospitalized, they stay for shorter periods of time than when hospital school programs were instituted over thirty years ago. The average length of a hospital stay today is approximately 3.9 days (Whitt,

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Weiss, & Elixhauser, 2014). Nevertheless, school services in the hospital continue to be important for both children and their families, and the words of Emma Plank (1959) still apply: “Learning takes on a very different meaning when a child is hospitalized. Going to school in the hospital can be a link to the past and the future. It reassures a child that his parents, his home, school and the hospital believe in getting well” (p. 47). Some 20 years later Jerriann Wilson (1979), Director of Child Life at Johns Hopkins Children’s Center, cited the continuing need for educational programming, “School programming in the hospital serves to emphasize the healthy part of a child during his/her confinement” (p. 64). All children are entitled to develop to their full potential through the benefits of healthcare and education. Psychologically, school connotes normalcy and familiarity. Developmentally, school offers the opportunity to be industrious and develop a strong sense of self. Academically, skills are mastered. At school, children meet new friends, discover how to interact with other children and adults and learn about themselves. In her book, Educating the Chronically Ill Child, Susan Kleinberg (1982), recommended that educational planning for children with specific chronic conditions be implemented in the hospital and when they return to school. Children in elementary school through high school are mandated through federal, state and local laws to receive hospital and home instruction with appropriate medical documentation. Parents should work with the child life specialist, educator or social worker at the hospital and their local school district to find out their district’s specific local regulations. For children and their families, a smooth transition back to school is the key to quality of life. In order to ease the transition from the hospital to home and eventually back to school, an educational discharge plan needs to be in place, similar to a hospital roadmap, to help families find their way from one place to another. In the hospital setting, child life specialists can take the lead role in guiding families on this journey. This chapter presents information necessary for child life specialists to help facilitate the educational needs of the children with whom they have contact. While the primary focus of this chapter is on special education legislation in the United States, it includes information and approaches that are applicable in Canada (where the corresponding laws are referred to as “human rights”) and elsewhere. Through reading of this chapter, the reader will: • Develop an understanding of the integration of child life and education services • Become familiar with the educational issues specific to children with special healthcare needs • Become familiar with special education legislation and related documents

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• Become familiar with the types of educational services available to children with chronic illness, developmental disability, physical disability and mental illness • Develop an understanding of the multiple ways child life specialists can assist children and their families with educational discharge planning (through school re-entry programs, as well as by acting as the liaison from the hospital advocating for the specific needs of each child) CHILDREN WITH SPECIAL HEALTHCARE NEEDS

Gaps in Educational Services As mentioned earlier some estimate that as many as 20% of American children have a chronic illness (Bauer et al., 2003). There are many definitions of a chronic illness. Pless and Pinkerton (1975) describe chronic illness as a condition that lasts at least three months during the year, has intermittent impact on daily functioning, may require in-home health services or frequent hospitalizations, and limits age-appropriate play, school performance or educational activities. Some examples of chronic illness are asthma, sickle cell disease, brain and spinal cord tumors, leukemia and other forms of childhood cancer, muscular dystrophy, gastrointestinal and cardiac disorders, genetic conditions, diabetes and AIDS. The number of children to consider increases when we include those with developmental disabilities, children who have health and cognitive impairments due to an injury, children who are physically disabled, or those with a psychiatric disorder. Some children have multiple needs, such as a chronic illness, a physical challenge and learning disabilities. Beyond healthcare, parents of children with special healthcare needs want what all parents want for their children including acceptance and understanding by their peers, a positive school experience, and a successful social life. Parents have told us in advocacy groups, support groups, at conferences and, ultimately, in their children’s hospital rooms, that there is a lack of appropriate school planning and that neighborhood schools overall are unprepared for their children. Upon discharge from the hospital, through the course of outpatient treatment, at home during acute episodes of chronic illness and even at school, many children are not receiving the educational services they need and are entitled to. Since the groundbreaking Vanderbilt Study, which began in 1980, (Hobbs, Perrin, and Ireys and Perrin, 1983), it has been known that significant educational gaps exist for children with special healthcare needs. Some of the difficulties associated with educational services are:

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• Lack of communication from the healthcare team to the school staff. • Parental difficulty in navigating the education system. • School absence which, unless the school district is willing to provide additional home and hospital instruction, makes it more difficult for these children to learn. • Limited availability of nursing coverage in schools. • Little or no training for school personnel in providing healthcare services. • Lack of information about illness and its impact on education, the family and society. • Inflexible attendance policies. More recently, national attention has focused on the value of linking health and education services to improve the well-being of children and families. Many national organizations support school-health partnerships in a variety of ways. Some of these organizations include: the American Academy of Pediatrics (AAP), the National Association of Children’s Hospitals and Related Institutions (NACHRI), the Association of Child Life Professionals (ACLP), the Council for Exceptional Children (CEC) and the Association for the Education of Children with Medical Needs (AECMN). Judith Palfrey and colleagues (Palfrey, Haynie, Porter, Bierle, Cooperman, & Lowcock, 1992) documented similar gaps in educational services in the Project School Care study and went on with a multidisciplinary team to create the Project School Care program at Children’s Hospital in Boston, MA. This program addresses the educational needs of children with special healthcare needs as they return to school. A major component of the program and materials are aimed at improving communication and the sharing of information between the healthcare team and the school. The intervening years have, sadly, indicated that gaps remain in educational services for children, but also that professionals continue to develop creative models of programming to address those gaps. A case in point is the work of the Children’s Health Fund (CHF), which initiated a new program in 2015, “Healthy and Ready to Learn.” Through this program, based in three low-income schools in New York City, children were screened prior to entering school or early in their first year of school to identify and address conditions that may make them vulnerable. Specifically, the screening was intended to make sure that children had no problems with vision or hearing, had no medical or dental conditions that caused them pain, had no lead in their home environments, and that behavioral issues and household stresses were addressed. To facilitate participation, medical buses were brought to children’s homes, eliminating the often-hidden barrier of transportation issues.

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The extent to which issues were found among this population is startling and indicates the need to pay attention to these factors to ensure children’s educational success. Research publications resulting from this project are available through the organization (http:// www.childrenshealthfund.org). Bridging the gap from the hospital to home to school has become an integral part of education planning; actually, it is an integral part of life planning for pediatric patients. Our hope is that child life specialists will take an active role in the planning process. UNDERSTANDING THE EDUCATION LAW In order to best serve children and their families, child life specialists should develop an understanding of the educational rights of children with disabilities. Until 1969, most children in need of specialized services were not able to attend school. There were few options available to them. Finally, in 1975 a landmark piece of legislation was passed by Congress to ensure that children with special educational needs could attend school and receive appropriate educational services. This law, the Education for All Handicapped Children Act, or Public Law 94-142, has been amended and renamed over the years and is now known as the Individuals with Disabilities Education Act (IDEA). At the heart of this education reform were parents who wanted their children educated in the public schools. Today, we know that all children with special needs in all 50 states are entitled to a free and appropriate education (FAPE) in the least restrictive environment (LRE), yet the type of services they receive may vary greatly depending on their locale. When educational laws are passed by Congress, they are interpreted and implemented by the United States Department of Education. State departments of education, in turn, further interpret these laws and develop regulations to be followed by school districts in their state. The actual interpretation of federal law can vary from state to state. Adding to the confusion of professionals and parents, the laws are further interpreted at the local level, resulting in variation of the special education supports and services from district to district. The Education for All Handicapped Children Act of 1975 (PL 94-142), which created special education services the way we know it today—was a major step in education as the first law requiring free, appropriate, public education to be provided to all children from 5–21 years of age regardless of their disability. This legislation included the stipulation that Individual Education Plans (IEPs) be developed for children in special education—a practice still in effect today (Wright & Wright, 2004b).

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INDIVIDUALIZED EDUCATION PLAN (IEP) Once a child is identified as needing special education services, the parents, student (when old enough), teachers, school administrators and related service providers collaborate to develop a plan that will improve the child’s educational results. The IEP is the cornerstone of a quality education so that all children with disabilities will receive an appropriate education. We may see various forms of IEPs, but what is important is that they all contain the same information in the most clear and concise way. The IEP should be an educational tool that is easy to use. Information included in the IEP is the following. The child’s: • Current performance • Annual goals • Special education and related services (e.g., transportation, counseling, health services, nursing, language and speech, occupational and/or physical therapy) provided to achieve these goals • The child’s participation with non-disabled children, or a statement why this will not occur • The provision of assistive technology evaluations, appropriate equipment and training, as needed • The provision of supplementary aids (e.g. a Frequency Modulator [FM] trainer or a communication board) • Participation in state and district-wide tests and modifications in the administration of these tests, depending on the unique needs of the child • Program modifications and support services • Dates and places of when services will begin, how often they will be provided, where they will be provided and how long they will last • Transition services—a statement of the transition services that are needed to help the child become a productive member of society • How the child’s progress towards the annual goals is measured and how the parents will be informed This landmark piece of legislation didn’t include infants, toddlers and preschoolers—a condition that was changed with the passing of PL 99-457 in 1986. The new law also mandated that Individual Family Service Plans (IFSPs) be created for infants and toddlers in Early Intervention programs, serving children from birth through two years, eleven months. Each county in each state has designated a lead agency to run its Early Intervention (EI)

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Program, but EI is mandated through federal legislation. Children ages 3 to 5 years are provided with special education services through the Committee on Preschool Special Education (CPSE) by their local school district. Children ages five years and up are referred to the Committee on Special Education (CSE). The next important step in special education was the development of the Individuals with Disabilities Education Act of 1990 (PL 101-476), also known as IDEA. This legislation, which superseded the previous Education of Handicapped Children’s Act (EHA) and its amendments, mandated major philosophic changes including the replacement of the word handicap with disability, the requirement of transition planning to begin at an earlier age, that assistive technology evaluations are to be considered when planning for the educational needs of the child, and that sensitivity to ethnically and culturally diverse children with disabilities be exercised. The US Congress periodically reauthorizes IDEA, most recently in December 2004. IDEA requires public schools to locate and identify children with disabilities who may be in need of special education. These children will “have available to them a free, appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living” [20 U.S.C. {1400(d)]. The statute includes specific requirements about eligibility for service and the components of the IEP, designates the IEP team members, and outlines the comprehensive procedural requirements related to disputes and complaints. However, the law is always changing and evolving. To better understand IDEA, you need to read the statute, the regulations, and cases that have interpreted the statue (Wright & Wright, 2004a). Section 504 of the Rehabilitation Act of 1973 (PL 93-112) and the Americans with Disabilities Act of 1990 (PL 101-336) are both civil rights provisions barring discrimination against persons with disabilities and are very helpful in the education of children who may have special needs but don’t require specialized education. Under these laws, individuals must have an impairment that substantially limits one or more major life activities such as seeing, walking, breathing or learning to be designated a “person with a disability.” If institutions that receive federal financial assistance, including schools, don’t comply with Section 504, they are in jeopardy of losing that assistance (www.insideschools.org). In contrast, the mandates of the Americans with Disabilities Act (ADA) apply to all institutions of learning, regardless of federal funds. Under Section 504, an Accomodation Plan is developed that outlines reasonable accommodations and services that children need to fully participate in all activities of school. The plan may include such accommodations

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such as preferential seating, a second set of textbooks to keep at home, modifications for testing or intermittent home instruction. School district teams, with parents and sometimes other professionals, develop IEPs and Accommodation Plans. Special education law and 504 plans offer due process rights to families (Wright & Wright, 2004b). As professionals who work with children with special healthcare needs, it is important to keep up with the new provisions in the law. Resources listed in the reference section will help you understand the relevant legislation. As a result of the laws described above, students in special education now participate more fully in the general education curriculum and the role of their parents has been strengthened. In order for children to receive special education services, they must be evaluated at school or privately and be found to have a physical, cognitive or behavioral impairment that substantially interferes with their ability to benefit from general classroom curriculum. The following is a list of disabilities that require either special education or accommodation plans. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.

Autism Blindness Deafness Emotional Disturbance Hearing Impairment Intellectual Disability Multiple Disabilities Orthopedic Impairment Specific Learning Disability Speech or Language Impairment Traumatic Brain Impairment Visual Impairment Other Health Impairment THE ROLE OF CHILD LIFE

Hospital staff members usually consider a discharge “well done” if a child goes home and a treatment regimen is recommended. Medications are prescribed, medical equipment is ordered and, when necessary, therapeutic treatments are continued (e.g., speech, occupational therapy, physical therapy). Clearly, a positive health outcome, the adaptation to an ongoing illness, is the most important part of any inpatient experience. Families and children, however, do not see the cure of an illness nor the provision of a comfort mea-

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sure as an end in itself. Returning to school and enjoying the company of friends is the goal for most children. It is important to look at the child as a whole child, not a disease by itself. Although the healthcare team represents a collaboration of many disciplines, the child life specialist knows the child well, is often in contact with the schools and listens to families about school issues. Yet, education advocacy often seems to fall outside the realm of child life services. In actuality, child life specialists are uniquely qualified to advocate for children in schools as they have advocated on behalf of children in the hospital setting for decades. Having child life specialists take a lead role in educational planning for children with special healthcare needs makes perfect sense. In the United States and Canada there are over 500 child life programs, many with existing hospital-schools under their domain. Even if a child life program is small, an approach that truly represents family-centered care can and should include school planning. School re-entry begins when a child is admitted to the hospital. When a child is hospitalized or has a chronic illness, daily routine is changed, and contact with friends, family, and school is interrupted. The presence of school in the hospital allows a child to keep up with his studies, participate in the education process, and maintain continuity with normal experiences. When school-age children are hospitalized, contact with their school is important. In addition, emotional support from friends at school can help children adjust to health issues more easily. Child life specialists can encourage the following: cards, letters, emails and pictures from the entire class or individuals; photos of the class; recorded messages; videos of the class; phone calls to the patient; and visits from classmates and school staff, only with parental permission. When students return following an illness or hospitalization, they often have cognitive, physical, and psychosocial difficulties meeting the demands of school. Key to a smooth transition is making sure that the necessary supports are in place to maximize social and academic success. The student, the family, the school, and the student’s classmates should all be prepared for the student’s return to school. Going back to school means “back to normal,” and careful planning must take place to ensure a successful return. The personnel involved in this planning process vary from place to place. Some hospitals have education resource teams consisting of a child life specialist, a nurse, a social worker, a special educator or special educational advocate, a psychologist and sometimes a physician. Families are referred to the team by the child life specialist or another member of the wider healthcare team. Given the intricacies of laws pertaining to special education, the volume of patients who leave the

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hospital with continuing needs, and the complexity of those needs, we feel that the inclusion of an educational advocate is particularly important. This individual can help families understand and navigate the complex educational system and obtain appropriate services for their children. Plans are then made to help the family access those services for their child upon discharge or during treatment. This team approach is especially important in chronic situations where the child’s medical condition fluctuates. Changes in mobility, for instance, require a change in services and service delivery. Because the resource team includes members from the many disciplines involved in the ongoing care of the patient, communication among the team members facilitates the child’s needs being met in a timely manner. The essential ingredients of a school re-entry program are: • Early and ongoing communication with the parents, healthcare providers, and school personnel to facilitate re-entry back to school. A child life staff member can be designated to serve as the contact person for the healthcare team. This can be communicated to the parent upon discharge, in case the parent has questions or additional need for support. • Development of a parent information packet to be given to the family before discharge. Include a consent form and any additional pertinent medical information that is necessary for the child to return to school. Explain to the family what a school re-entry program is and how it can be tailored to meet the needs of their child. Let parents know that school re-entry services are optional. They can make the decision to use these services now or at a later date. Often school re-entry is needed at different critical points in the child’s education. Discuss the laws with the parents and the rights of children with special healthcare needs. Refer families to local support groups and other agencies for advocacy and information, parent support groups, sibling programs, school referrals, respite care, socialization groups and summer programs. • Planning for coordination of services (e.g., school visits, in-services for school staff, and/or a child’s classmates). Parents should be included on the team to support family-centered care. • Discussion of this plan with the school team. Parents are a critical part of the healthcare team and must be involved in the developments of their child’s school re-entry plan; they are the experts in knowing what their child needs. Everyone’s input is important so that the child can reach his/her full academic potential. • Planning for a review of the student’s progress.

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• Checking again before the child is discharged to see if the school requires any medical documentation to facilitate the return to school. • Recognizing and acknowledging sibling issues and the need for support. Let the parents know that a child life specialist is available to provide sibling support. • Acknowledgement that ongoing care is often needed to assist families after they return home. It is helpful to call parents to see how their child is managing the return home and back to school; continue to offer support to the child and the family, and ask if they have any questions. Reaching out to the child’s family might be helpful. Also, a note to a child might brighten his/her day. This way of systematically reaching out to families may send a positive, caring message and may help support them during the school re-entry process. A child life program can initiate a school-health-parent task force or a community advisory board and include several members from various disciplines, staff from local school districts, administrators and parents whose children are either frequently hospitalized or have a chronic medical condition. It is always helpful to have a physician and local state representative on your task force. Once school district personnel understand the challenges that chronically ill children and their families face on a daily basis, they often listen and respond appropriately. This is one of many models that will strengthen ties among schools, parents and healthcare providers. Sharing information can help to develop mutual respect for one another. School district administrators need to hear the issues, and healthcare providers must know what is realistic for schools to provide. Parents bring to the table their experience and knowledge, which will help foster true parent-professional partnerships—partnerships that are pivotal in the education of children with special healthcare needs. This type of collaboration can close gaps provided for all children in the community. The child life specialist can encourage the family to speak to members of the healthcare team regarding their child’s needs at school. Usually medical documentation is needed to access services. Parents should be informed of medication effects, and letters documenting possible behavior changes, written by physicians, can be given to the schoolteachers. Helping families obtain this documentation is another way child life specialists can make the transition back to school an easy one. Child Life specialists encourage families to be proactive. While most school districts have policies that grant tutors to students who have been out of school for two or three weeks consecutively, educational plans may be written for weekly extra help so that the student does not fall behind. There

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needs to be coordination and communication among parents, school personnel and healthcare providers. Child life specialists can facilitate this by acting as a liaison between the family and the medical team once the child is discharged from the hospital. Child life specialists can also assume the responsibility for teaching families how to advocate for their children outside of the hospital. Offering informational sessions on the unit or in the outpatient setting on topics such as parent-school communication, special education law and due process, and other related issues can provide support to families even after their children are discharged. You can post information about these meetings in pediatric clinics and Family Resource Centers. Meeting regularly with parents helps child life specialists understand the needs of families and children in school and the community. Child life can then refer families to appropriate programs and agencies to help them access needed services for their children. Becoming a parent advocate begins with understanding and accepting that parents know their children best (reinforcing family-centered care) and then supporting them as they speak with other professionals such as school personnel. Listening to parents and encouraging them to speak out for their children is an important role for child life specialists in and outside of the hospital. Federal education laws insure all children access to free educational services through the public school programs, but it is critical that families are put in touch with local and regional advocacy groups to help them navigate a very complex educational system. It is essential that child life specialists are able to refer families to the appropriate services available for their children. Child life specialists can serve as the transition liaison for the family. Now laws are in place to protect the rights of children who may have limitations or disabilities because of an illness at birth, an injury, or an acquired illness. Unfortunately, many parents/caregivers are not informed of the laws and aren’t sure whether their child qualifies for special services. Parents can have their child evaluated by their local school district at no charge, but families need to know who to contact for an evaluation. This is where child life specialists can make a huge impact in the lives of these children. Helping families to understand their children’s educational rights and to learn what supports and services are available requires extensive research in your community. There are many organizations and parent groups that can help you along the way. Referrals to such groups can actually save the day for so many families. Organizations, schools and hospitals have free, educational booklets with school guidelines available for families. In addition, information may be obtained from special education directors, members of the Parent Teacher Association (PTA), members of the Special Education Parent Teacher Asso-

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ciation (SEPTA), pediatricians, school principals, the state education department where you reside, regional advocates, members of the school board and friends. Researching the problem a child and family may face, and finding corresponding solutions, is important. A good way for parents to start is by asking the following questions. 1. What is the problem/s that my child may have upon going to school, returning to school or staying at home? (e.g., How will my child attend school now that he can no longer walk? Does my child need an individual healthcare plan on file with the school nurse? Will my child be able to attend school for part of the day and receive homebound services?) 2. What are some of the solutions to these issues? (e.g., transportation, barrier-free schools, a 1:1 aide) 3. Who should I call to assist me? (Who is the school district contact for these services?) 4. What is the plan? How do you refer a child for an evaluation? What is the referral process? What is the length of time from the referral of a child for evaluations to the implementation of services? What if a child doesn’t meet the criteria for special education but still has special needs? What other options are there? 5. How do we implement the plan? (Who is in charge of the child’s program? Who will monitor this progress?) SOCIALIZATION AND SCHOOL If school and play are a child’s “work,” then a hospitalization has not had a successful outcome if we haven’t created a plan for school re-entry and supported a child’s ability to socialize with friends. Child life specialists are uniquely positioned to assess children’s play skills in therapeutic groups as well as during playroom and teen room activities. Many children experience social-emotional changes caused by feeling ill or exhausted. Pain also has a huge impact; a child in pain withdraws from social contact and has great difficulty engaging with peers or attending to schoolwork. Child life specialists can identify children who are experiencing a change in play or study skills and inform the medical staff and the child’s family. Healthcare providers have become very sophisticated in communicating diagnoses and prognoses to parents, offering explanations of tests, sharing written materials about specific diseases and even providing referrals to

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homecare. Those same providers, however, focused on the treatment and possible cure of illnesses, often do not address children’s ability to integrate with peers. Additionally, healthcare professionals are often reluctant to highlight the unfortunate secondary effects of medications, treatments and procedures. For example, a child being treated for asthma may become hyperactive or aggressive while being treated with steroids. These side effects can be distracting in a classroom, and the behavior is off-putting to peers. Long-term steroid use may increase a child’s weight, lowering self-esteem, as well as making the child ‘stand out’ among friends. The asthma and weight gain combine to become an obstacle to participation in gym class and after-school sport activities. Lastly, that child makes frequent visits to the emergency room, and so misses a day of school every week. Inability to keep up with schoolwork accelerates the loss of self-esteem. Each day of school missed further separates the child from other children. The child starts to be left out of the easy banter that other kids effortlessly enjoy and, in effect, has been sidelined. Neurological illnesses (e.g. seizures, meningitis), brain and spinal cord tumors, organ transplants, HIV, sickle cell anemia and many genetic disorders cause profound behavioral, social and academic changes in children. Chemotherapy may result in some learning and social deficits. These changes may be temporary, of a few weeks’ or months’ duration, or they may be permanent. Just as child life staff help prepare children and their families for physical changes, so too they need to encourage the medical staff to inform parents about neurological changes. A child’s peers may be as distressed as the child who is ill. Physical and cognitive differences may upset children, making them reluctant to approach their sick or recovering friend. Child life specialists can help families design social re-entry plans. Classmates can be educated about a friend’s hair loss from chemotherapy. A child who is feeling weak may still help manage a soccer team. A best friend’s parents, once they understand a specific situation, can bring their child to visit or schedule phone calls to keep ‘the patient’ in the loop. Socialization sessions, a form of “play therapy,” can be part of a discharge plan. An IEP or accommodation plan can direct the teacher, school social worker or guidance counselor to invite a few peers to play sessions with the recently discharged child. Information and preparation are the best medicine. It is unfair to have a child experience school and social failure before hastily cobbling together a plan. Social re-entry anxiety is a foremost concern for children who have been ill. They just want to get back to school, to blend in without a fuss. Their friends and teachers are frequently unaware of the impact illness has on a child. The former patient has felt sick, and experienced pain or fatigue. Most

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likely, the child has been afraid. School lessons, holiday celebrations and the latest movie releases have been missed. The re-entering child has to hide a newly acquired knowledge base (IV’s, catheters, surgery, medications) and try to slip back into school culture, fast. Parents need documentation from physicians, psychologists, child life specialists, social workers and other relevant professionals to create new school programs or adapt existing ones. Child life staff can be the liaisons between families and the medical team, helping to collect the assessments and specific orders necessary to convince school personnel to adjust schedules and work load, and provide extra academic help and social support. A healthy body is just part of what children and their families seek through medical care. They will only feel well served if, in addition, they are successful in school and have a rewarding social life. CASE STUDIES The following cases illustrate the many issues facing children with special healthcare needs at school and how child life professionals can play a role in helping children and their families develop an appropriate plan to achieve a positive school experience.

Randy Randy’s story illustrates: • • • •

Impact of chronic illness on education Application of Section 504 Interdisciplinary collaboration Family support

Randy was a fourteen-year-old female diagnosed with Crohn’s Disease when the child life specialist met her in the fall of her sophomore year of high school. This was only her second hospitalization, the first being the winter before when she was initially diagnosed. Like most adolescents, Randy was anxious about missing school while in the hospital. Upon interviewing her and her family, the child life specialist discovered that despite frequent absences and little support from teachers or her guidance counselor, Randy was an honors student with an A average. Currently, however, Randy was experiencing difficulty keeping up with assignments and was receiving negative feedback from her teachers regarding her frequent absences.

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Over the past year, Randy had missed more than forty days of school, yet had received fewer than five days of home tutoring services. Like many children with chronic illness, Randy experienced frequent intermittent absences. Mostly absent less than a week at a time, she never met the length of absence necessary to qualify for home tutoring services under her school district’s policy. According to the policy, a student must be absent for fifteen school days before a request for home tutoring could be initiated. Add an average of five days to process a request and arrange for a tutor, and the time out of school is closer to a month before actual services are received. In addition, once Randy returned to school for even one day, the process began all over again. Because of the gaps in Randy’s schooling, she was constantly learning new material and trying to catch-up at the same time. Without the support and understanding of her teachers, this led to the nearly impossible expectation that Randy could complete assignments and prepare for exams on time. Teachers were becoming frustrated with Randy and impatient with her requests for time extensions and make-up exams. This all added to the stress over Randy’s illness presenting a difficult situation for Randy and her family. Working together with Randy’s family, school district personnel, and the medical team, her school issues were addressed using a two-pronged approach. First, the district’s policy regarding home instruction was inappropriate to meet the needs of a student with Crohn’s disease or any chronic illness. As a chronic medical condition, a diagnosis of Crohn’s disease categorizes one as a person with a disability entitled to accommodation under Section 504 of the Rehabilitation Act of 1973. An early ancestor of the Americans with Disabilities Act, Section 504 of The Rehabilitation Act of 1973 bars any institution or agency receiving federal funding from denying access to any of its activities to persons with disabilities. In this case, the home instruction policy was denying Randy access to educational services. The act also requires agencies to “reasonably accommodate” persons with disabilities through changes in policy, facilities or through other means so that they may fully benefit from their educational program. These accommodations are written in the form of an individual plan, developed with input from the student, parents and the treating physician. The plan is implemented by the school district and building personnel and provides support for a student with disabilities. In Randy’s case, the plan allowed for home tutoring services to begin immediately following the tenth absence of the school year. From then on, tutoring was delivered at the rate of two hours for each school day missed. Once hours were “earned,” they remained available, even after

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Randy returned to school allowing her to receive the services to which she was entitled when she was well enough to receive them. This is not special education, but equal access to all of the educational activities already available to students in the district. Secondly, communication between the school, family and medical team needed to improve regarding Randy’s illness and her educational needs. There appeared to be little understanding in the school community about the symptoms of Crohn’s disease and its effect on a young person’s ability to manage the school environment, with or without additional support. With the help of the director of a local support group for children with Crohn’s Disease, the child life specialist gave a presentation to Randy’s teachers, principal and other school staff on living with Crohn’s disease. Randy’s parents attended the meeting and were able to speak on the impact of this illness on their family. They expressed concern over the way their daughter was viewed by her teachers and about her fear of school failure. Randy chose not to be at this meeting. The representative from the support group suggested ways the school could support Randy by allowing her access to a private bathroom, time to rest in the nurse’s office and counseling if needed. Because the disease affects stamina, Randy would be given a second set of books to keep at home so she wouldn’t have to carry a heavy backpack back and forth to school. This was also put in the written accommodation plan. The child life specialist and other members of Randy’s care team hoped that by raising awareness, they would increase sensitivity allowing Randy to receive more emotional support at school. Consulting with Randy’s family regarding her educational rights as a person with a disability, providing disease-specific information to school personnel and supporting the patient and family through the educational process facilitated the transition for Randy from the hospital, home and back to school.

Joey Joey’s Story illustrates the importance of • • • • • •

Appropriate referrals for educational services Early Intervention services Physician involvement Nursing in schools IDEA ’04 Assistive technology communication

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Joey is a 12-year-old male diagnosed with a rare genetic neurological disorder. His condition, a progressive and degenerative disease, leads to a loss of milestones. His mom often describes him as a child trapped within his own body—something that many parents of physically disabled children feel. His illness causes body movements that are difficult for him to control. He could possibly hurt himself or others unintentionally. Yet, he deserves to be able to go to school like other children his age. All children are entitled to a free, appropriate, public education (FAPE) in the least restrictive environment because of the education laws that have been passed (e.g., IDEA ‘04). From birth to age 2 years, 11 months, Joey received early intervention services at home. Joey is a delightful youngster, confined to a wheelchair, yet able to benefit from all types of assistive communication. When he answers a question correctly in class, he is just as excited as any other child. When he smiles, you know that he belongs in school with his peers. Joey attends a private, state-approved school at the present time. He needs a 1:1 nurse with him on the bus and during school so that he will be able to attend school. Nursing is considered a related service under IDEA and is documented on Joey’s Individual Education Plan (IEP). A 1:1 nurse is very expensive and, until recently, parents were often made to provide this service through their insurance program or by other means. The Supreme Court has ruled that in cases where 1:1 nursing is required, children should go to school and the home school district should be financially responsible for this service (Garrett Frey vs. Iowa City School District, 2000). However, this decision is interpreted differently by states and individual school districts across the country. In addition, each state has its own Nurse Practice Act that governs what tasks must be performed by a nurse and which may be performed by other personnel. For Joey and his family, the process of obtaining school-funded nursing services was long and frustrating. They required extensive documentation from their physician supporting Joey’s need for nursing during the school day. Joey’s family had to advocate extensively for their child’s right to this service along with his right to attend school. There are still problems to iron out. What if the nurse is sick? Is the school responsible for providing a substitute? Who is responsible for training the nurse, and who deems her competent? Joey’s story suggests the need for child life specialists to help families develop an educational roadmap and to provide families with appropriate referrals so that wherever they reside they will know how to begin to obtain the necessary educational services for their children.

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Max Max’s story illustrates: • • • • •

Change in functioning brought on by illness/injury Team approach Long-term educational planning Family support Social issues

Max arrived at the hospital in May of his 6th grade year. He had been experiencing headaches and nausea, and within 24 hours of his admission Max was diagnosed with a brain tumor. After surgery, Max began a course of chemotherapy. He did not respond well to the treatment suffering significant side effects. After additional surgery and a serious infection, Max ended up in intensive care for a long admission. It was now October of Max’s 7th grade year, and he had not been to school since his diagnosis. As Max’s medical condition stabilized, it was time to attend to his educational needs. During his stay in intensive care, he had not been well enough to receive regular instructional services from the hospital-based teacher, although she read to him often and encouraged communication between Max and his classmates. Prior to his illness, Max attended a parochial school in his neighborhood. They had been in touch with Max and his family over the past few months offering much needed support and encouragement. Unfortunately, due to his illness and the nature of his treatment, Max would be unable to return to school on a regular basis. A child life specialist referred Max to the education resource team on the unit. The team considered his current medical status and treatment plan. Although well enough to be discharged, Max would not be able to return to school until he was stronger. He was referred to his school district for home instruction services. In addition, he now had mobility issues, speech and language difficulties and other special learning needs. These needs had to be addressed, and appropriate referrals needed to be made. Medical documentation of Max’s illness was obtained from the treating physician. A member of the team met with Max’s family to discuss special education law and the services available in their community. Max was referred to the Committee on Special Education in his local school district. Evaluations would be made, and an Individualized Education Plan would be developed.

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Confronting Max’s change in functioning was very difficult for him and his family. His cancer had been treated successfully, but he now faced a whole new set of challenges. Because of his mobility and learning needs, Max would be unable to return to his old school. Finding a new school would require a lot of research. In the meantime, Max would be tutored at home. The Committee on Special Education will recommend a type of placement for a child, but it is important for families to be informed of the different programs available in order to make the best choices for their children. Max would require a barrier-free school (not all schools are accessible) with special education classes and on-site physical therapy—a pretty tall order. Of equal importance to Max and his family was the need for social activities at school. Like all kids, Max wanted to have friends to eat lunch with, clubs to join and even sports opportunities. He wanted to feel included. Navigating the complex special education system and researching programs takes a lot of time and effort. Family support sometimes means staying in for the long haul. Max had been receiving home instruction for two years and his care team was committed to helping him go to high school. Remembering that a school health coordinator from the hospital’s School-Health-Parent task force worked in Max’s district, the child life specialist called her to ask her opinion regarding an appropriate school for Max. She had the reputation from professionals, parents and students of being an advocate for kids with special needs in the schools. She made a recommendation and provided the name of the special education coordinator there. Max’s Mom made an appointment to visit and, at her request, the child life specialist went along to speak about Max’s illness and its impact. Mom didn’t want Max to come until she knew it would be a good choice. She didn’t want him to be disappointed. Max returned to school in September of his 9th grade year. His individualized Education Plan allowed for some of his time to be spent in general education, while still receiving special education services for the majority of the day. He also received occupational and physical therapies and had a 1:1 aide to help him with mobility. He attended a social skills group once a week with a guidance counselor for kids with similar needs and joined a special computer club. If his plan needed revising, there was a team in place in the building to work with Max and his Mom to better meet his needs. And of course, he could always call a member of the hospital’s education resource team.

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CONCLUSION The profession of child life can play an important role in the transition of children with special healthcare needs from the hospital, to home and eventually back to school. If child life specialists take the lead and assist families in navigating the complex educational system, more children would receive the services they need and to which they are entitled. School is the main activity of childhood. Allowing children to participate in it to their fullest potential enhances their quality of life. A comprehensive school reentry plan and an ongoing care program should be put in place in each hospital where children are served. The ongoing care team is available to assist parents at critical points, and with critical issues, that they and their children face with a chronic illness. These times and issues include: (1) the initial time of diagnosis, (2) the weeks, months or years after the diagnosis, (3) socializing with their peers, (4) developmental and emotional milestones, (5) returning to school with academic, cognitive or social disabilities at various times throughout their illness, and (6) difficulty obtaining ongoing services for their children and themselves. Continuing services that may be provided include: medical referrals and coordination of school services, consideration of psychosocial concerns, referrals to sibling and parent support groups, discussion of financial entitlements, socialization and respite care. The more informed physicians are about the total needs of their patients, the better advocates they can be. The role of child life specialists collaborating with other disciplines is critical in helping to inform school personnel about the current needs of children with chronic conditions. Comprehensive care should continue even when patients are discharged from the hospital to ensure a successful school and social re-entry. With more children with chronic conditions being served in outpatient settings, and a decreased length of hospitalization for school-age children, perhaps now is the time to revisit how and where we deliver educational services to this unique population of children. It is the time to look at our hospital-school policies and how we use the financial resources available to best serve these children. At the same time, we should investigate more cost-effective ways of funding hospital-school teachers so that children with chronic medical conditions have their educational needs met, both in the hospital and when they return to school. We are in the midst of changing times. Children who once died before they reached school age are surviving into adulthood, attending our schools and becoming productive members of society. Now is the time to look closely at how we deliver educational services to these children in a comprehensive, ongoing and cost-effective way when they are hospitalized and upon their return to school.

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Tips for Child Life Specialists 1. Develop a comprehensive school re-entry program that includes other disciplines from within the hospital. 2. Know the education laws and regulations in your state. 3. Be familiar with IDEA ’04, Section 504 and the ADA. 4. Know the referral process for Early Intervention (Birth–2.11), preschool (3–5) and school-age children (5–21). 5. Know the guidelines for a school district evaluation, reevaluation. 6. Become familiar with special education and related documents such as Individual Education Plans, Individual Family Service Plans, Section 504 Accomodation Plans, Health Care Plans and Transition Plans. 7. Understand due process rights and parental consent. 8. Become familiar with the educational leaders in your community and network whenever possible. 9. Ask the family before they are discharged if they feel their child might need any specialized services in school. Make sure to include the child if appropriate. Talk with the multidisciplinary team about the impact of the child’s medical condition on their education, now and in the future. 10. Speak to the family about how child life could be helpful in the schools. 11. With parental permission, contact the school district. Find out who the key people are. 12. Help obtain necessary medical documentation that the family and school will need. 13. Set up an informal meeting with school, parents and child life to discuss meeting the educational needs of the child. 14. Become involved in medical education—teaching medical students and residents about the impact of health conditions on a child’s education. REFERENCES Advocates for Children. (n.d). Retrieved from http://www.advocatesforchildren.org Bauer, T., Duitch, S., & Birenbaum, A. (2003). Children with special health care needs: Next steps for New York. United Hospital Fund and the Foundation for Child Development for the New York Forum for Child Health. Canadian Council for Exceptional Children. (n.d.). Retrieved from http://www .canadian.cec.sped.org/ Hobbs, N., Perrin, J., & Ireys, H. (1983). Public policies affecting chronically ill children

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and their families. Nashville, TN: Vanderbilt University Institute for Public Policies, Center for the Study of Families and Children. Kleinberg, S. (1982). Educating the chronically ill child (1st ed.). Rockville, MD: Aspen Systems Corporation. Liptak, G., & Weizman, M. (1995). Children with chronic conditions need your help at school. Contemporary Pediatrics, 12, 64–80. McCormick, D. (1986). Social acceptance and school reentry. Journal of the Association of Pediatric Oncology Nurses, 3(3), 13–25. Palfrey, J. S., Haynie, M., Porter, S., Bierle, T., Cooperman, P., & Lowcock, J. (1992). Project school care: Integrating children assisted by medical technology into educational settings. Journal of School Health, 62, 50–54. doi:10.1111/j.17461561.1992.tb07883.x Plank, E. (1959). Working with children in hospitals. England: Tavistock Publications. Pless, I. B., & Pinkerton, P. (1975). Chronic childhood disorder: Promoting patterns of adjustment. Chicago: Yearbook Medical Publishers. Porter, S., Burkley, J., Bierle, T., & Lowcock, J. (1992). Working toward a balance in our lives: A booklet for families of children with disabilities and special health care needs. Boston: Harvard University. Stein, R., & Silver, E. (2002). Comparing different definitions of chronic conditions in a national data set. Ambulatory Pediatrics, 2, 63–70. Stuart, J. L., & Goodsitt, H. J. (1996). From hospital to school: How a transition liaison can help. Teaching Exceptional Children, 28(2), 58–62. Wilson, J. (1979). School as part of a child life program. The Australian Nurses Journal, 8, 64–67. Wissler, K., & Proukou, C. (1999). Navigating the educational system: A practical guide for nurse practitioners. Journal of Pediatric Oncology Nursing, 16, 145–155. Witt, W. P., Weiss, A. J., & Elixhauser, A. (2014). Overview of Hospital Stays for Children in the United States, 2012 (HCUP Statistical Brief #187). Rockville, MD: Agency for Healthcare Research and Quality. Retrieved from http://www.hcup us.ahrq.gov/reports/statbriefs/sb187-Hospital-Stays-Children-2012.pdf Wright, P., & Wright, P. (2004a). From emotions to advocacy. Hartfield, VA: Harbor House Law Press, Inc. Wright, P., & Wright, P. (2004b). Wrightslaw: Special education law. Hartfield, VA: Harbor House Law Press, Inc.

Chapter 17 CHILD LIFE IN THE COMMUNITY AND IN OTHER NON-TRADITIONAL ROLES M ELISSA H ICKS AND KATHLEEN MCCUE INTRODUCTION he profession of child life has, in one form or another, existed since the early 1900s. In the first textbook describing the child life profession (Thompson & Stanford, 1981), the authors wrote “the child life movement gained its greatest momentum in the 1950s and 1960s with the pioneering work of Emma Plank in Cleveland and Mary Brooks in Philadelphia.” It was during those years that the needs of children in hospitals began to be documented in books and articles, and programs across the United States and Canada began to communicate with one another and standardize their services. The first organization to address these issues was the interdisciplinary Association for the Care of Children in Hospitals, and the first formal gathering of child life professionals was a committee of this organization, called the Child Life Study Section. In 1982, this committee and the professionals it represented made the decision to develop an independent organization called the Child Life Council. The Child Life Council still exists, has been responsible for over three decades for standardizing and documenting the profession of child life, and has now changed its name to the Association of Child Life Professionals (ACLP). Child life developed in response to the identification of the significant needs of children during hospitalization. Much of the early programming focused on various services and interventions to reduce the negative emotional and developmental consequences of hospital stays for infants, children and adolescents. However, as early as 1994, in the Standards of Clinical Practice (Child Life Council, 1994, p. 32) statements were made that expand-

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ed the scope of the services of child life. These standards stated, “The contributions made by child life specialists are not confined to the traditional inpatient pediatric unit. There is a growing body of research documenting the value and effectiveness of child life services in such diverse settings as ambulatory/emergency services, psychiatric units and home care.” Thus, the initial focus of the child life role expanded to include pediatric patients in both inpatient and outpatient locations, as well as participation on special hospital teams, in order to provide child life services in a variety of venues. At this same time, in the late 1980s and early 1990s, child life specialists were beginning to recognize the needs of children and families coping with stressful events in non-hospital settings. Therefore, child life specialists began exploration of the possibilities to expand services even beyond the umbrella of the hospital, and beyond the identification of the pediatric patient as the primary focus of intervention. It had become clear that the skill set of the child life specialist is appropriate to support coping and help mitigate stress in a wide range of environments. Child life professionals are now establishing a wide variety of roles and services, and it is possible to divide these new and non-traditional roles of child life into meaningful groupings. Before looking at these categories or groups, it would be helpful to provide some definition of traditional and nontraditional roles in child life. Although there is no definitive published description of these roles, the following approach will be utilized throughout this chapter. Traditional positions are those that work directly and clinically with pediatric patients of all ages and their family members. This includes both inpatients and outpatients, and these positions usually fall under the umbrella of a pediatric hospital. Non-traditional positions are usually those that are outside of the pediatric hospital’s control or provide non-clinical services within the pediatric hospital. These positions may focus on healthcare issues in adults, health and non-health related issues in children and adults in challenging situations in the community, and administrative and technical positions within a pediatric setting. It is the underlying skill set and identity as a child life specialist by the practitioner that are the constants which place a position within the realm of child life. Setting, job title and/or role description do not specifically differentiate traditional from non-traditional child life positions, but rather help to determine whether the position has been commonly associated with child life over the history of the profession. This is a fluid division; what is now non-traditional may well be considered completely traditional in ten years. Some examples may be helpful. A child life specialist working in an inpatient psychiatric unit in a children’s hospital, would be considered traditional, while a specialist working in a community mental health agency, not affil-

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iated with any hospital, would be non-traditional. Another example might involve the arena of child abuse. A child life professional working in a pediatric emergency department providing services and preparation to children being evaluated for abuse would be a traditional position, while a specialist working for a county child protection agency would be non-traditional. A third example illustrating the difference between traditional and non-traditional positions does occur within a children’s hospital. A child life specialist who works on a general pediatric inpatient unit may be required to collect some sort of patient data as part of his or her day-to-day tasks. This would be a normal responsibility within a traditional job. However, within our profession are examples of child life specialists who have been hired specifically to be part of a research team studying some aspect of pediatric care. These individuals may be titled research coordinators, but they utilize their child life knowledge and skill to perform their tasks and have minimal clinical responsibilities. This would also be considered a non-traditional child life job. Now that we have a format for differentiating traditional from non-traditional positions, let’s look at a template for categorizing those positions that are non-traditional. There is certainly ambiguity in the boundaries between the different categories, but it is important to identify and separate the possible categories as much as possible. Each category will have its own description, methods of entering the work group, range of services and activities, benefits and challenges. The three logical overarching categories, at this time in the history and development of child life, include: 1. Positions in community/governmental agencies, non-profit organizations and for-profit businesses 2. Private practice 3. Positions in hospitals and other healthcare institutions but outside the usual scope of child life Below are real-life examples of each of these groupings to clarify the types of settings and services included in the category. First, we have positions in community and governmental agencies, as well as both for-profit and non-profit businesses. In Child Life Beyond the Hospital (Hicks, 2008), several of these roles were identified and described. Child life specialists held positions in non-profit community agencies, funeral homes, camp programs, and hospice and bereavement programs. Although these types of positions have not been investigated in depth, a recent article documents the value of support services delivered by child life professionals in a non-profit organization, Wonders & Worries (Phillips & Prezio, 2016). These services are specifically provided to children impacted by a par-

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ent’s illness. City, county and state governmental legal systems, early childhood intervention programs, shelters, child abuse centers and other similar agencies have also seen the entry of child life professionals. Businesses such as those that manufacture and sell children’s products or produce children/family publications and media have also found child life specialists to be appropriate for their workforce. In many of these positions, the child life professional works directly with children and families. However, the role for child life in some of these newer positions focuses on teaching, writing, supervision, research activities and even marketing, rather than direct service. Next, child life professionals are increasingly entering private practice. The range of potential activities in private practice is extensive. Child life specialists are certainly providing direct clinical services to children and families, often based on referrals from pediatric healthcare practitioners. However, some in private practice market their services directly in the same way that mental health providers in the community build their practices. Private practitioners in child life may provide interventions to pediatric patients, their siblings and family members, to the children of adults with serious illnesses, to children who have experienced trauma and dramatic change in their lives and occasionally to children in entirely different categories. Child life in private practice may also provide consultation and education to other professionals through mentoring, workshops, and case reviews. Sometimes child life professionals in private practice may contract with agencies or community groups to provide specific services such as a lecture, a product review or a support group for either children clients of the agency or the agency staff. Other contractual agreements with a child life private practitioner may involve creating written materials, doing program assessments, collecting research data, and designing play space, just to name a few possibilities. This new domain of the child life specialist in private practice is as open as the imagination of the practitioner, and is only limited by the boundaries of ethics, professional standards, business acumen and the amount of time and energy the specialist has available to devote to the undertaking. Finally, the third category of non-traditional services involves work in a hospital setting, but outside the usual roles of the child life specialist. The area that has received the most attention and growth in the past 10 years is the provision of services to adult patients, their children and other family members. Originally, child life specialists were asked to consult regarding the needs of seriously ill adults when those patients expressed concerns about their children. Often, on-call systems were developed to meet these needs, and now there are dedicated positions in some hospitals specifically to provide services to adult patients and their families. Another of the few articles

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published outside of child life literature addresses services to this population (Sutter & Reid, 2012). Within this service population, there is also a published evaluation documenting the value of child life services to adult patients (Cross & Bruce, 2015). Services to adult patients are not the only nontraditional role that child life might play in hospitals. Child life specialists have been increasingly applying for positions in marketing, hospital management, patient/family education, fund development, research, volunteer services and other areas in which the skills of a child life specialist are transferrable. It can be seen from the above framework that the potential for innovative programming in the field of child life continues to expand. This expansion will influence the training of child life specialists and the goals and objectives of the Association of Child Life Professionals. In the remainder of this chapter, further information will be provided on the ways the standards and skills of a child life specialist align with this innovative movement within the profession. Credentials and entry points for these non-traditional positions will be discussed, and the risks and rewards of moving beyond traditional pediatric hospital patient services will be examined. THE APPLICATION OF CHILD LIFE PROFESSIONAL FUNDAMENTALS IN NON-TRADITIONAL ROLES The Association of Child Life Professionals has published documents specific to the practice of child life specialists. These documents remain the foundation for child life practice, whatever the setting or type of position. They offer a beacon for translating the foundational skills of a child life specialist into alternative practice arenas. These must be reviewed and considered when practicing in non-traditional or community-based roles. Specifically, the Official Documents of the Child Life Council (2011) highlights the Child Life Competencies, Standards of Clinical Practice, Codes and Guidelines for Professional Conduct and Standards for Academic and Clinical Preparation. The application of these important documents in relation to practice outside the typical roles for child life specialists will be reviewed. When evaluating these documents, be aware that the Standards of Clinical Practice provides overarching standards as it relates to programs and the delivery of high quality child life service. The Child Life Competencies are focused on direct service describing the clinical delivery of intervention and support. Therefore, there is some overlap to the documents, especially as related to the clinical skill set of the child life specialist.

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Child Life Competencies Let us first examine the core competencies of a child life professional. The Official Documents of the Child Life Council (2011) include an updated version (2016) of the child life competencies. This section will take an in depth look at the particularly relevant skills and knowledge when discussing community-based or non-traditional roles of the child life specialist. The root of clinical practice lies in the following competencies. These skills are the transferable assets that the child life specialist possesses which have importance and relevance in settings far beyond those of the hospital. While the majority of these competencies are clinically focused, competencies relating to professional responsibility, education and supervision, research and administrative aspects of practice will also be reviewed regarding their significance to non-traditional roles.

Clinically Focused Practice Among the clinically focused competencies, the following will be highlighted: 1. The ability to assess the developmental and psychosocial needs of infants, children, youth and families. 2. The ability to initiate and maintain meaningful and therapeutic relationships with infants, children, youth and families. 3. The ability to provide opportunities for play for infants, children, youth and families. 4. The ability to provide a safe, therapeutic and healing environment for infants, children, youth and families. 5. The ability to support infants, children, youth and families in coping with stressful events. 6. The ability to provide teaching, specific to the population served, including psychosocial preparation for potentially stressful experiences with infants, children, youth and families. These competencies are all significant when working with families in crisis who are struggling with difficult events or unfamiliar experiences. When families are in crisis, regardless of the setting, the availability of a clinician who can support the entire family in the most appropriate way is essential. The knowledge of development and the ability to target support and interventions at the appropriate developmental level is a characteristic that is often unique to child life specialists on the team. More specifically, there are skills associated with a certain knowledge base that are particularly relevant

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to child life work outside of the typical roles. These skills can be effectively applied to a variety of settings. Child life specialists can address the developmental impact of traumatic events. This is due to their foundational knowledge of child development and their ability to extrapolate that information to understand how certain events will impact children, youth and families at different stages. Families may experience traumatic events in a multitude of settings and situations. The therapeutic use of play and expressive activities, developmentally appropriate education, and the use of creative approaches to address difficult topics are just a few of the skills in the child life specialists’ arsenal to support families in crisis. Often families coping with traumatic or potentially traumatic events are typical families coping with an atypical situation. There are not necessarily any psychopathological factors in play. The focus on strength and resiliency is especially appropriate for these children and families. Intervention centers more on preventative support rather than addressing a psychopathology. Through this focus and a family-centered care approach, child life specialists can effectively and appropriately support these families. For example, child life specialists can offer grief and bereavement support grounded in developmental theory to aid families in coping with loss in a variety of settings. Support group facilitation can often be provided in this type of setting in addition to others.

Professional Responsibility Focused Practice There are also competencies that address professional responsibilities within practice, which are essential when translating skills into non-traditional arenas. Of particular importance is the ability to practice within the scope of professional and personal knowledge and skill base. Child life specialists expanding into different arenas and settings will need to be clear where their role begins and ends and where a referral would be necessary. This becomes both an ethical and legal issue. The use of supervision can aid when having to make decisions surrounding scope of practice. The competency related to continuously engaging in self-reflective professional child life practice is an additional, important tool to assess scope of practice and the manner in which one is presenting their abilities and credentials. Another important professional responsibility is the ability to function as a member of the service team. In these roles, in environments which may not be as knowledgeable about child life services, this is especially valuable. The child life specialist will need to be articulate, but also model their skill set and the value added to other members of team. This demonstration of value, in

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addition to the support and value of the roles of other team members, is necessary. Working in non-traditional environments has the potential to be professionally isolating, so participating and engaging with a team can be both supportive and stimulating. In the community, education and supervision competencies play an especially important role as one is often interfacing with those unfamiliar with the role of a child life specialist and the skill set possessed by child life clinicians. This education will need to be provided to other professionals, families and the community in general. One will need to communicate the knowledge, skills and value of child life support to these stakeholders. Some stakeholders may be clients, some may ultimately become an employer, and some may have funding sources that the child life specialist can access. Understanding the audience and being able to effectively communicate about child life clinical skills and training with confidence and competence is essential.

Research Focused Competencies Another broad area that is addressed by the child life competencies is research fundamentals. One competency is the ability to integrate clinical evidence and fundamental child life knowledge into professional decisionmaking. This is especially important as one begins to branch into new settings and work with professionals who may not be familiar with child life. It is essential to be able to support the value of the service with evidence and/ or current research. This is very important as one addresses multiple audiences, decision makers and stakeholders. The medical community places a high priority on this type of data. This data will also be necessary when writing proposals for services or grant funding.

Administrative Focused Competencies The final area addressed by the competencies is administration. There are two competencies that particularly resonate when discussing community-based and non-traditional hospital roles. The first is the ability to develop and evaluate child life services, and the second is the ability to implement child life services within the structure and culture of the work environment. It is clear how this relates to the development of new and unique services. Often forgotten, but highly important, is the continuous evaluation of programs and services. In any area, but especially in newly developed settings, the evaluation process is vital. The child life specialists must deliver services within the context of the setting. Assessment of the setting and understanding its nuances will allow for a more successful delivery of services.

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As highlighted above, it is clear the child life specialist possesses many transferable skills. It becomes important to distinguish which ones are especially significant in any particular setting. When considering expansion into another arena, it is essential to do a thoughtful assessment of the experiences children and families may face and the skill set possessed by the child life specialist that would allow for a supportive, therapeutic relationship. While all the competencies are essential and relevant, it might be helpful to illustrate the interaction between specific competencies and various non-traditional settings. In the chart on the following page, four possible settings are proposed, and competencies that may be utilized the most frequently are listed in the order of likelihood of utilization.

Standards of Clinical Practice In addition to the competencies, the Standards of Clinical Practice (Child Life Council, 2011, pp. 11–13) also dictate expectations regarding the delivery of child life service. These expectations should be met regardless of setting, and these skills will be necessary when practicing outside the typical hospital environment. Some of these standards will be discussed below as they relate to non-traditional roles and settings. The first standard addresses a written plan for services. When developing a new program or child life services within a new setting, a clear and articulate plan for services is essential. Many of these settings may not have had child life services or even be aware of what can be offered. A plan that clearly addresses the scope of practice, the types of services provided and the goals and objectives will serve as a framework for approaching decision makers related to these potential roles. Another standard highlights the specific types of services delivered by a child life specialist. This addresses assessment of children and families and planning for appropriate clinical intervention. Essentially, it describes how child life specialists operationalize the competencies. A child life specialist seeking to work in a non-traditional setting should be very well versed in the specifics of this standard as it is the essence of service delivery. This standard can also serve as a check point for practicing within one’s professional scope. This is especially true in a private practice scenario when the boundaries of the role can become easily blurred. The next standard requires a collaborative approach to services. While this is required in the hospital, it will be especially important in these unique roles. Many non-profit organizations have teams that work to support their clientele. It is likely that there will be only one child life specialist on such teams, and they will need to work with the others to maximize support offered to families.

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Setting

Potential Competencies Employed in Descending Order by Likelihood of Use

Funeral Home

Hospital Based Children of Adult Patients

Foster Care

Private Practice focusing on trauma related to medical events

Support coping with stressful events

Assess developmental and psychosocial needs

Support coping with stressful events

Practice within scope of professional and personal knowledge and skill base

Provide a safe, therapeutic and healing environment

Support coping with stressful events

Function as a member of the service team

Assess developmental and psychosocial needs

Provide teaching, specific to the population served, including psychological preparation for potentially stressful experiences

Provide teaching, specific to the population served, including psychological preparation for potentially stressful experiences

Assess developmental and psychosocial needs

Support coping with stressful events

Provide play opportunities

Initiate and maintain meaningful and therapeutic relationships

Provide teaching, specific to the population served, including psychological preparation for potentially stressful experiences

Initiate and maintain meaningful and therapeutic relationships

Represent and communicate child life practice and psychosocial issues to others

Function as a member of the service team

Provide play opportunities

Represent and communicate child life practice and psychosocial issues to others

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The final standard impacting child life specialists working in different arenas addresses funding and facilities. Careful thought and consideration need to be given to both these areas when practicing in non-traditional settings. This standard states that a sufficient budget, facilities and resources must be available to meet the goals of the child life services. Funding sources will need to be explored when seeking to expand services to non-traditional areas. Some possibilities to investigate are departmental funding, grants through foundations, corporate giving programs or government sources, donations and corporate sponsorships. Advocating for appropriate space that can be established to promote a healing and supportive environment will be important prior to delivering services. Education regarding this requirement will need to be articulated to decision makers. Again, a well thought out presentation will be required.

Code of Ethical Responsibility Finally, it is important to reflect on the ethical responsibilities of the child life specialist in any environment. It is essential to demonstrate all aspects of ethical practice, but below we will address those with particular relevance to these types of roles and work environments. The Code of Ethical Responsibility (Child Life Council, 2011, pp. 3–4) describes the ethical behavior to which child life specialists should subscribe. These principals should guide decision-making in relation to professional practice. Those working in non-traditional settings should understand all the principles and especially reflect on those described below. Principle 4 addresses privacy and confidentiality. This requirement is clear within medical settings but will need additional consideration in different work environments. The child life specialist will need to assess the variables associated with this principle in relation to documentation, securing of files and confidentiality statements for clients. It may be that the setting is more informal and other staff do not maintain confidentiality. In this case child life specialists will need to decide how to adhere to their ethical responsibility. Next, Principle 6 indicates the importance of continuing education in areas that will enhance one’s professional practice. In a non-hospital setting this can be more of a challenge as there may not be as many on-site training opportunities. Child life specialists will also need to seek out training that will maintain child life skills in addition to the specialized skills required for their particular settings. Perhaps the most important principle when venturing outside of a traditional setting where the skill set of a child life specialist is more clearly defined is Principle 8. This principle addresses the absolute necessity to practice within one’s professional training, credentialing and scope of practice. In addition, it stresses that one represent these skills accurately and clearly to

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the public. This is paramount as child life specialists could get pulled into inappropriate roles by well-intended clients or colleagues, and it is up to the clinician to draw the boundary and make referrals as necessary. The final principle to highlight is Principle 11, which addresses the priority given to the delivery of professional and appropriate services without allowing financial gain to drive decisions. Of course, the child life specialist should be compensated appropriately, but when making clinical decisions for the best interest of the client, the financial gain should not be a factor. THE EDUCATION AND TRAINING OF CHILD LIFE SPECIALISTS IN NON-TRADITIONAL ROLES Most individuals enter child life with the intention of working in a traditional hospital setting. The education for child life professionals has been increasingly standardized over the past two decades, and is fairly consistent at this point in time. A child life specialist always holds at least a bachelor’s degree with coursework relevant to working with children in hospitals and other challenging environments. Degrees are often actually in child life, or in a closely related field such as child development, family development, counseling, psychology or therapeutic recreation. Additionally, clinical experience in a hospital setting through a practicum, internship or fellowship is a basic, minimal requirement for any individual planning to enter the field of child life. These clinical experiences are very competitive, and students with less comprehensive educational backgrounds will probably have difficulty securing an internship or fellowship. It is important to note that both educational and clinical requirements may continue to evolve over the next decade. Those interested in child life certification should always consult the current requirements, available through the Association of Child Life Professionals. In many professions, such as nursing and social work, there is state licensure or national credentialing that sets the standards for classroom and direct experience in order to enter the profession. However, there is no such state licensure for child life in any state in the United States. The only generalized credential that is available to the child life professional is the Certified Child Life Specialist (CCLS). In the current child life environment, it is almost always necessary to be a Certified Child Life Specialist (CCLS) to obtain one of the limited number of positions in children’s hospitals. Over the past 15 years, the certification system for child life professionals has been continually clarified, improved, and refined. The CCLS credential is now obtained by an application and testing process that is controlled and monitored by the Child Life Certifying Committee, the Association of Child Life Professionals and a professional

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testing agency. The CCLS credential is the only one available to demonstrate an acceptable knowledge of child life theory and practice and to satisfy entrylevel educational and experiential requirements. The majority of individuals who currently hold non-traditional child life positions have usually begun their careers in child life in a traditional pediatric hospital. The path that a child life specialist follows to obtain a non-traditional or community-based position varies depending on the individual and the job itself. However, to be considered a child life specialist, one must have competency in the usual and customary roles and responsibilities of the profession. Therefore, the education and training discussed above is a minimal requirement even if an individual does plan to continue a career trajectory outside of the usual hospital setting. It must be stressed here that clinical experiences in a pediatric healthcare setting, both as a student and as a paid professional, offer the best springboard for the individual who may ultimately move toward private practice, a community-based setting, or a non-traditional hospital position. During the first few years of a professional’s career, fundamental skills are honed and expertise with particular patient populations is developed. Through the experience of quality supervision, the new child life specialist gains in both competency and confidence. Even though a child life specialist may have plans to move to hospice services or camp programs, those first few years in a general pediatric facility are critical to the development of a well-rounded specialist who can maintain the broadest perspective of the needs of children and families. It is for these reasons that at least one, and usually the first, clinical internship or fellowship should be completed in a general pediatric facility, not in a specialized or community-based organization. Specialized training should always come after basic foundational skills are acquired. Another advantage of beginning one’s career in a general child life setting is that the professional is exposed to role possibilities that he or she may have never been aware of or considered prior to the exposure. Seeing how other professionals in inpatient and outpatient services interface with patients, learning about positions such as volunteer coordinator, librarian, fund development professional, patient educator and others in a hospital may guide the child life specialist to continue a career in one of these non-traditional roles. The new child life specialist learns about relationship interface between professionals and is exposed to services and challenges in the community. All of these areas of knowledge will guide the interested child life specialist into a non-traditional role, if so desired. So now the child life specialist has an appropriate degree and clinical training in a hospital setting. Through personal interest, limited job availability or perhaps serendipitous opportunity, the specialist finds herself or himself in a non-traditional role or makes the decision to enter private prac-

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tice. What new education and training will be required to adapt to this new setting and reach a high level of competency? Of course, the answer to this question is as varied as the potential roles a child life professional might consider. There are a few consistent training needs in any new setting, but much of what the specialist might now need to learn will be specific to the type of work that the child life professional will be doing. Most positions have an orientation period during which “on-the-job” training will occur. Formal classes may be provided or this training may occur through supervision. Usually there is training on the culture and history of the setting and the typical language used in this particular agency or organization. If the professional will be working directly with children and families, understanding the challenges and experiences of the clients of any setting is required, basic knowledge. What happens in a dentist’s office is different than what happens in a child abuse setting, which is different than what happens in a homeless shelter, which is different than what happens when an adult is the identified patient. Every different setting must be explored by the child life specialist with an open mind while bringing all the knowledge and theory gained in the earlier academic learning to further understanding of this new venture. Specialized credentials may be required at this point. There are training programs in bereavement, trauma specialty, infant massage, counseling, patient education and many other areas of expertise. If the child life specialist has a bachelor’s degree, this may be the time to seek a master’s degree in some complimentary field of study. If not a degree, then other specialty certifications are available and attendance will often be supported by the new employer. Developing skills in grant writing, research, writing for publication, public speaking and other areas are often needed in non-traditional positions, and most child life specialists have only received minimal exposure to these skills in their academic and clinical preparation. It is not possible to look at education and training for the non-traditional child life professional without considering the importance of regular, ongoing supervision, especially if the role is primarily a clinical one. When a child life professional moves to a community-based agency or enters private practice, finding and maintaining adequate supervision can be a challenge. Especially in private practice, it will be up to the professional to seek a supervisory relationship with an individual or group that can assist the professional in maintaining the highest standards of clinical work. Even after the child life specialist is oriented to the non-traditional position and has established a place for herself or himself, ongoing training and education is still critical. The early supervision stressed above should still be a routine part of any clinician’s work with children and families. Theory and practice in specialty settings continues to change and grow, and the professional should take every opportunity to learn and update skills that are sig-

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nificant in the setting in which he or she works. Beyond setting-specific education, it is incumbent upon the child life specialist to maintain at least a working knowledge of basic child life skills, language and practice. This knowledge can be gained at child life conferences and through regional child life organizations. GATEWAY TO COMMUNITY-BASED OR NON-TRADITIONAL ROLES Child life specialists can enter this type of work in a variety of ways. The first step to enter any community-based or non-traditional setting is to do a thorough assessment both of oneself and of the environment to be entered. After doing a self-assessment related to interests and skills, which will be addressed later in this chapter, one would need to complete a community needs assessment and an inventory of current resources. This would be especially true when proposing new services or starting an organization. Some very important questions to ask are: • • • • • •

Is this a duplication of services? Where are the gaps in available services? Would this fill the need? Is a role available which the child life skill set matches? Is there interest? Would there be a community/professional champion for the role? What alliances and collaborative relationships already exist?

This assessment is also essential as it will have implications for funding of any proposed services. It is this assessment that will inform the child life specialist’s decision to move forward and enter this type of work. Let’s begin by looking at three unique ways in which the child life specialist can move beyond typical roles or hospital positions. These include applying for an existing position, developing a new position and establishing a private practice. The first opportunity would be as an individual trained in child life, but applying for an existing role in which the skill set would match. The title of the position would likely not be child life specialist, but the skills could be relevant. The child life specialist would have the responsibility to educate decision makers on the field, the value of child life, and how the skill set would be instrumental to meet the needs of the position. To clarify the relevance of this translation of skills, the child life specialist would need to engage in due diligence by conducting a thorough investigation of the orga-

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nization and the role. This would include studying the environment and the job description. It is useful to review the job description for the position side by side with the guiding documents highlighted previously. Writing the corresponding child life competency or standard of practice next to each line of the job description will be helpful when formulating the “pitch” to share with the decision makers. One needs to be able to clearly and eloquently describe how the background and skill set of the child life specialist would be appropriate to fill the responsibilities of the role. Being confident in oneself and one’s skills is essential, and this comes from foundational knowledge, experience and supervision. This knowledge and confidence will come through when articulating interest in the position. Further, it will be important to assess how one will maintain their professional identity and integrity in an environment where they are likely the only child life specialist and will have a title other than child life specialist. He or she will need to truly work as a team member. Interdisciplinary communication and respect are critical. The child life professional will also need to carefully maintain professional boundaries. If too rigid, the specialist will be seen as a non-team player. If too all-encompassing, others might feel threatened or unclear about what role child life is supposed to play in the organization. Typically, if applying for an existing position, the funding is already in place. One aspect that the child life specialist may need to address is the justification of the approved salary range. This will be true if the position is advertised for an individual who is credentialed differently. Child life specialists will need to provide education and documentation related to their background and training. The next opportunity for entering the community-based or non-traditional role is to assess an unmet need within the community or organization and propose the creation of a new position. This can be exciting and energizing, but may be more challenging as there will be the added component of funding this new position that must be addressed. When an area of needed support is identified, the child life specialist will have to create the proposal for such services. That, however, is not where the process starts. It begins with a thorough assessment of the community landscape of services. All similar services need to be investigated and assessed for duplication. When duplications in services exist, it is more difficult to get the funding. However, when it can be demonstrated that a service fills an existing gap, it may be more likely to receive funding. Additionally, one should find professionals within the community and the setting that would be advocates and supporters of child life services. Next, one must identify who the decision makers are for the organization and understand their priorities and interests. If it is deter-

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mined that child life services match their priorities and interests, a well thought out proposal should be written. The proposal should be clear and educate the reader on the perceived need and how child life services would fulfill it. Funding opportunities should be thoroughly researched and included in the proposal. In addition to a well-written proposal, the child life specialist should plan and practice the manner in which he or she will articulate to proposal to the stakeholders. This practice is essential and could mean the difference between successfully moving forward or being turned down. Some child life specialists have started their own non-profit organizations to deliver child life services. In this case, paperwork would need to be submitted to the government for recognition as a non-profit prior to accepting donations for the establishment and ongoing overhead of the organization. This can be a lengthy process, but well worth it to meet the needs of children and families and maintain the professional integrity of child life services. Regardless of setting, funding is an important consideration. Whether one accepts an already established position or proposes to create one, almost everyone in a community setting is partially responsible for fund-raising and for marketing of the organization. That may mean that the specialist will need to attend benefit events and speak to outside individuals and groups about the desirability of donating to the organization. Further, many community agencies depend on grants or donations for startup and/or ongoing funding. The budget for the child life specialist may be less secure than in a hospital. The pay scale may also be lower due to dependence on “soft” money. And finally, in recent years, more child life specialists have chosen to go into private practice providing child life services. While there is absolutely a need, this is probably the most challenging as one will need to secure his or her own startup funds and rely on marketing and referrals for a successful business. This scenario is also the one in which clinicians must be especially careful that they are practicing within their education, training and credentials. This extends to presenting themselves and their services to the community appropriately. Seeking consultation regarding appropriate set up of a business is essential. Primary on the list will be professional practice liability insurance, tax requirements, and incorporation requirements for practicing within any particular state. Next, one will need to decide on fees that will be charged for services. Currently, child life services are not reimbursable by insurance carriers, but hopefully in time that will change. In order to establish an appropriate fee for service, one should look at the billable rates for similar occupations and gear rates accordingly. Billing practices must be clear up front to any client seeking services. Many private practices are comprised of a mix of services and revenueproducing activities. These include working with individual clients and fam-

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ilies in the office or home setting, contract work for other organizations and consulting. A combination of offerings can help to maintain a fiscally viable practice and allow the child life specialist to use his or her skills in a multitude of ways. As in the hospital, continual evaluation is essential in all of the above practice arenas. This will allow the child life specialist to evaluate and adjust services to best meet the needs of children and families. Further, particularly in independent work, ongoing supervision and support is essential. THE BENEFITS AND CHALLENGES OF MOVING BEYOND TRADITIONAL CHILD LIFE ROLES By now, the reader has a reasonably comprehensive overview of the various types of non-traditional child life positions, the importance of all the standards and competencies that define the profession when considering or functioning in such roles, the education and training requirements for these varying positions, and the methods to seek or develop a position that is outside of traditional child life work. But the question remains for each child life professional reading this chapter: “Is a move to a non-traditional position the right one for me?” In order to consider that question, an examination of the benefits and challenges of these types of positions is useful. All child life jobs have pros and cons, and the better the job applicant understands the range of advantages and disadvantages in each position, the easier it will be to make positive decisions. Unfortunately, some non-traditional child life positions have been developed or accepted because the candidate for the position could not find a traditional child life job. The mentality that, “I really want to work in a hospital, but will accept this job while I’m waiting for something to open up” may do a disservice to both the non-traditional position and also the profession. If an employee is not excited and optimistic about the job he or she is accepting, it is unlikely that the new employee will put the energy, initiative, creativity and commitment into this new position that it deserves. In many nontraditional settings, child life is on trial to see if the background and skill set can really meet the needs of the position. These types of roles should not be viewed as an alternative to child life work, but rather a distinct and logical choice for roles that child life specialists can fill. Each type of role is unique and has significant value. It is hoped that after reading this chapter and considering the importance of each example that is set by child life in the nontraditional setting, professionals will exercise great care and self-examination when applying for or developing proposals for non-traditional roles.

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The advantages, rewards and benefits of a non-traditional child life position are many, as are the challenges and risks. These factors may be organizational, professional or personal. It is not possible for anyone outside the mindset of the applicant to say definitively whether any particular factor is a pro or a con. Rather, each professional should examine the possible position thoroughly to determine which of the specific components of the non-traditional job are points that make the job attractive, and which are points that make it less desirable. Then, a reasonable approach can be determined. Let’s look first at the organizational issues that may arise when considering a child life position in a community agency, non-profit or for-profit organization or business. Factors such as smaller size, single focus of service and dependence on grants or “soft” money are all often hallmarks of non-traditional roles, especially in the community. These factors can be both advantages and challenges to the prospective employee. Other factors, such as quantity and quality of benefits, limitations to the amount of direct service involved in the job, and whether the required work is independent or interdisciplinary, may also weigh the appeal of the position either positively or negatively for the applicant. Almost all non-traditional positions require more involvement in fund raising and fund management. Organizational features, such as these, have already been discussed in some detail in the previous section. In general, organizational issues will not directly apply for those specialists seeking to develop a private practice. However, even in private practice, the specialist may choose the agencies with which he or she may want to be affiliated, and the above issues may be applicable to that decision-making process. Now, let us examine the professional pros and cons of working in settings beyond the usual pediatric role of child life. These points may apply to any type of non-traditional setting. • The child life professional may be responsible for a wide range of services. Instead of seeing one diagnosis or one age group, the child life specialist may be able to build an innovative type of practice based on the goals of the organization that includes children, parents, siblings, teachers, community therapists and members of other organizations. • If the specialist is providing direct clinical services, there may be opportunities to develop long-term relationships with children and families and provide both group and individual interventions. However, some positions are less focused on direct service than others, and the specialist may find him or herself seeing individuals and families less than in a hospital setting. • The position or agency may require the child life specialist to acquire new skills or additional certifications. There may be opportunities to

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increase the knowledge base of the specialist, or even to return to school for additional degrees. • The child life professional will have the opportunity, or the requirement, to engage in a variety of activities that enhance professional growth, such as new program development, grant writing, research and media interface. Business planning, insurance and legal issues may also be new required areas of knowledge, especially for the individual in private practice. Finally, let’s look first at the personal issues that arise when considering a non-traditional job. • The child life professional may have a personal interest or passion regarding a specific diagnosis or area of child/family challenge. Perhaps the specialist has dealt personally with the foster care system, or cancer, or alcoholism. If the individual has successfully managed the impact of such an experience in his or her own life, it might now be time to invest energy in helping others having similar experiences. • The applicant for a non-traditional job will often find him or herself in the position of being an innovator or a trailblazer for the profession of child life. • It will be necessary for the specialist to engage is significant self-examination when considering a non-traditional position. This examination process often results in an increase in confidence and clarity about one’s skills and abilities. The following questions should be posed to oneself and answered honestly prior to seeking such a position: º Do I have, or can I acquire, the necessary skills for such a job? º Can I market myself for this position? º Will I be able to meet the expectations? º Do I really have a belief in the organization and/or the types of services I would be providing? º Do I have the time and energy to move forward in a new and nontraditional position with commitment? It should be now clear that there is no absolute better or worse individual choice when considering a non-traditional child life position. The factors above may be pluses for some professionals, and negatives for others. As is often the case in child life, decisions about action must be based on careful and thoughtful self-exploration. If a position is available, or the opportunity to develop a position occurs, the experienced child life specialist will engage in a systematic process of decision-making. There is no absolute hierarchy

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regarding the value or importance of one type of child life position over another. Each possible job has the potential to be absolutely appropriate and profession-enhancing for one specialist and a disaster for another. Ideally, this chapter has given the reader the tools to sort out benefits and risks, and make the best possible decisions as he or she moves forward in the profession of child life. CONCLUSION The child life specialist has an important contribution to make in a multitude of settings. As a professional, the child life specialist can meet children and families in situations that have the potential to cause distress and find creative ways to ameliorate that potential. The lens the child life specialist uses with an emphasis on applied child development is unique and valuable in a variety of settings. Using proactive and preventative support, the child life professional brings service components to the non-traditional setting that can lay a foundation for family coping both immediately and well into the future. REFERENCES Child Life Council. (1994). Official Documents of the Child Life Council. Bethesda, MD: Author. Child Life Council. (2011). Official Documents of the Child Life Council. Arlington, VA: Author. Child Life Council. (2016, December) Child Life Professional Certification Candidate Manual. Retrieved from http://www.childlife.org/docs/default-source /certification/candidate-manual.pdf?sfvrsn=10 Cross, J. & Bruce, J. (2015). Child life services in an adult setting: A quality improvement initiative and implementation effort in a university hospital. Child Life Focus, 33(3), 13–17. Hicks, M. (Ed.). (2008). Child life beyond the hospital. Rockville, MD: Child Life Council. Phillips, F., & Prezio, E. A. (2016). Wonders & worries: Evaluation of a child centered psychosocial intervention for families who have a parent/primary caregiver with cancer. Psycho-Oncology, doi: 10.1002/pon.4120. Sutter, C., & Reid, T. (2012). How do we talk to the children? Child life consultation to support the children of seriously ill adult inpatients. Journal of Palliative Medicine, 15, 12, 1–7. Thompson, R., & Stanford, G. (1981). Child life in hospitals: Theory and practice. Springfield, IL: Charles C Thomas.

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FURTHER READING Child Life Council. (2015). Child Life Council Bulletin, Special Issue: Alternative Settings, 33(3). Craton, A. (2000). Child life emerges in nontraditional settings. Child Life Council Focus, 18(1), 2–3. Hicks, M. (2001). Vision to action in action: One child life specialist’s journey. Child Life Council Bulletin, 19(2), 4–5. Hicks, M. (2005). The expanding practice arenas of child life specialists. Child Life Council Focus, 7(1), 1–4. McCue, K. (1996). From the president: Moving to a new future for child life. Child Life Council Bulletin, 13(4), 2. McCue, K., & Hicks, M. (2007). From vision to reality: The expansion of the child life Role. Child Life Focus, 25(3), 1–8. Sanborn, S. (1992). Innovations in child life. Child Life Council Bulletin, 10(2), 4.

Chapter 18 CHILD LIFE: A GLOBAL PERSPECTIVE P RITI P. DESAI, TONI CROWELL-P ETRUNGARO, M ELODEE MOLTMAN, AND LEEANN DERBYSHIRE F ENN* There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want and that they grow up in peace. Kofi A. Annan Secretary-General of the United Nations (UNICEF, 2000, foreword) INTRODUCTION

T

he threefold purpose of this chapter is:

1. to familiarize the reader with the universality of the needs of children, youth and families, no matter where or how they may live; 2. to explore psychosocial practices in child healthcare settings in different parts of the world; and 3. to examine how child life specialists may become involved in international activities.

Familiarity with international perspectives will strengthen clinical practices with children, youth and families, and help us become clearer in our values and expectations for all children equally, at the local, national, and *Note: The authors dedicate this chapter to the memory of our co-author, colleague and friend, LeeAnn Derbyshire Fenn.

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international levels. As our sensitivity to and understanding of a wide variety of social, economic and cultural contexts is increased, we can become more responsive clinicians and better advocates for the needs of a wider circle of children, youth and families. In expanding our knowledge and understanding, we may be challenged in our expectations. Values we hold as universal, such as accessibility to healthcare, are not universally attainable; there are many children and youth worldwide whose health is compromised both before and after their birth because healthcare services are not readily available to them. Other values, such as access to opportunities for play and learning, may be unattainable for children in various parts of the world, or even in our own countries, as a result of social, economic or political factors. Thus, the resources that we expect to be available to us as clinicians of child health and positive psychosocial development may, in fact, not be available in a variety of settings and locations throughout the world. We can learn about the practices of colleagues who work in widely varying circumstances, thereby enriching our own practices and professional adaptability. Many factors alert us to the fact that our world is “shrinking.” Our communities are becoming more ethnically diverse. The media bring daily reports of challenges and heartbreak faced by children, youth and their families around the globe. Growth in technology, such as the Internet and e-mail, and opportunities for communicating with people at great distance are an accepted and expected aspect of our personal and professional activities. International travel is widely accessible to individuals. Some of these factors have contributed to increasing interest expressed by child life professionals to learn how children and youth are being cared for in the world, especially with regard to their health and psychosocial needs. There is also an expressed interest in collaborating with like-minded caregivers around the world, to share knowledge about health and psychosocial practices, to develop ideas for delivering services, and, as a result, to learn from each other. We can increase our reach as more child life professionals become involved in a variety of international roles and activities and communicate these experiences professionally. Each culture has values, beliefs and practices that are supportive of its children, youth and families. It would not be possible to describe each strength and barrier to the provision of care to children in all the cultures and countries of this world, but we can learn about them by becoming open and inquisitive. Most importantly, we can learn what advocacy tools are available to help build and strengthen sound, effective and proven health and psychosocial supports for children and youth living in a variety of cultural milieus and economic conditions.

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To this end, this chapter explores a range of facts and issues that affect the health and psychosocial care of children, youth and families internationally. Our discussion is divided into four distinct sections. Part I examines the current healthcare status of children around the world; a definition of health and identification of some factors that contribute to health; the universal rights of children; and the evolution of children’s rights in healthcare. Part II focuses on selected worldwide attitudes and practices in the delivery of health and psychosocial care to children, youth and families. Part III reviews a number of international programs and efforts currently in place for the delivery of psychosocial care in child health. Part IV focuses on global opportunities and challenges for child life practice, suggestions for preparing for international work, and a brief chapter conclusion. PART I: CHILDREN OF THE WORLD Global situations and struggles continue to produce many alarming events and trends, which have negative impacts on children’s development, health and opportunities for a productive future. Child life specialists can have a role within the global call for the promotion and advocacy of children’s rights. Awareness is our first step. There are 197 countries in the world at the time of writing. How countries care for their children, especially for children with healthcare needs, may vary significantly between countries. In general terms, our world’s countries reflect a range of rich (developed) or poor (developing) economies, which in turn directly affect the lives and health of their people, especially their children and youth. There are more than 7.3 billion people in the world, of whom over 6.1 billion live in less developed regions, and about 1.2 billion people live in more developed regions (United Nations Population Fund, 2015). Healthcare availability, accessibility and quality are all affected by the widely divergent economic conditions of developed and developing nations. Within each country, there are discrepancies in healthcare received in urban and rural sectors, and oftentimes gender differences exist. Indeed, where some countries have achieved remarkable outcomes in healthcare for their children, there are many countries where children and youth are suffering from preventable illnesses and who face significant challenges accessing even the most basic amenities of living. There is wide divergence in the availability and delivery of health and psychosocial care both within and between countries around the world.

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The Current Health Status of Children around the World The most accurate indicator of the status of child health in a given country is the “under-5 mortality rate” (U5MR), which defines the probability of a child dying between birth and five years of age per 1,000 live births. Table 1, which examines the U5MR trends for the years 1990, 2000, and 2015, illustrates the stark global disparity in healthcare indicators for children. The situation for young children in rich countries continues to improve, but progress is much slower in poorer countries. A number of factors, including inequitable economic levels, poverty-related problems, and limited access to healthcare for many families in poor countries, result in high rates of mortality and morbidity in their children. Within the past 25 years, 236 million children have died prior to their fifth birthday. In 2015 alone, an estimated 5.9 million children in developing countries die before they reach their fifth birthday, many during the first year of life, and primarily as a result of preventable causes (UNICEF, 2001a, 2001b, 2015). The most common causes of death include: diarrhea, acute respiratory illnesses (mostly pneumonia), measles, malaria, HIV/AIDS, perinatal conditions, and malnutrition. Malnutrition is a multidimensional problem, which affects the overall health status of children often resulting in secondary infections (UNICEF, 2001a, 2001b, 2015). Malnourished children

Table 1 LEVELS AND TRENDS IN THE UNDER 5 MORTALITY RATE: 1990–2015 (Deaths per 1,000 live births)

1990

2000

2015

Decline (percent) 1990–2015

Developed Countries

15

10

6

60

Developing Country Regions

100

83

47

54

Southern Asia

126

92

51

59

Sub-Saharan Africa

180

154

83

54

Latin America and the Caribbean

54

32

18

67

91

76

43

53

Region

World

Source: Data compiled from You, Hung, Ejdemyr, & Beise (2015) http://www.childmortality.org/files_v20/download/IGME%20report%202015%20child%20 mortality%20final.pdf

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suffer recurrent illnesses, do not grow well, are more lethargic and apathetic, and less interested in play, exploration and learning. It is evident that for many of the world’s children and youth, their futures are severely jeopardized. These preventable illnesses can be reduced, and perhaps even eliminated, through cost-effective efforts at assisting nations to develop public health interventions that provide clean water, sanitation, reliable food sources, immunizations, and permanent shelter. A Definition of Health and Factors That Contribute to Health We turn our attention to factors that contribute to health and illness, beginning with a definition that is applicable globally, where health is not only the absence of illness or disease. The World Health Organization (WHO) (1948), the world’s leading global health organization, offers this definition of health: “Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.” The WHO definition of health reflects a biopsychosocial model of health, as psychosocial factors have become as important as biology in our understanding of health and illness. Health may be defined as a resource for everyday living in that it facilitates adaptability, coping and hope for individuals and groups. At the same time, health is also considered within the social, political and economic conditions of communities and countries within which people reside. The interaction between people and their social and physical environments, and the corresponding impact on health, has resulted in the identification of determinants of health. Determinants of health within communities include such factors as adequate nutritious food, clean water, childhood immunizations, good sanitation, employment, healthy work environments, adequate housing, education, and social support (London Inter Community Health Centre, 1992; World Health Organization, 2002). What, then, are the specific determinants of health for children and youth, in addition to the basic needs for sufficient and nutritious food, clean water, good sanitation, childhood diseases immunizations, and shelter? The Canadian Institute of Child Health (Guy, 1997) identifies four determinants contributing to optimal child health and development. These include: 1. Protection from harm and neglect. 2. Relationships that nurture healthy social and biological growth and development. 3. Opportunity and hope, including opportunities for playing, learning, exploring interests, and testing abilities, as well as hope for a healthy and productive future.

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4. Community caring and responsiveness that provide resources, cohesion and support to families, based upon socially responsive policies and economic stability. These factors, when available to children and youth, contribute to health, positive development, and psychosocial competence of children as they progress to maturity. They do not, in and of themselves, make healthy, well-adjusted children, but they do create the potential for healthy developmental outcomes. Further, when these factors are made widely available to children and youth throughout the span of childhood, a society is able to reduce the high costs and low success rates associated with treatment programs to correct childhood vulnerabilities and problems (Guy, 1997). Childhood determinants of health contribute to healthy development, resilience and positive psychosocial outcomes, and these factors are universal. A brief overview of international research studies provides evidence of the relationship between physical and psychosocial health. The importance of the work of child life and related psychosocially-oriented health professionals is reinforced by these studies. The determinants of child health, as outlined above, provide a model for collaborative communication within and between professional groups, as well as service delivery components for caring communities to implement effective change for their child and youth populations. Research evidence supports the interactional relationship between health, social and physical environments, and economic opportunity. A number of studies examine the relationship between poverty and child health (Benzeval & Judge, 2001; Fentiman, Hall & Bundy, 2001; Navarro & Shi, 2001; Pattussi, Marcenes, Croucher, & Sheiham, 2001; Piko & Fitzpatrick, 2001). The research shows that political parties that enact policies to redistribute wealth will ultimately optimize the health of their populations (Navarro & Shi, 2001), and that socioeconomic factors are key determinants of health (Pattussi et al., 2001). When there is an equitable distribution of resources, the entire population benefits in overall health, development and opportunity resulting in stronger productivity, economic growth and an improved overall quality of living rating. Maternal education is also a vital contributor to a household’s health. Well-educated mothers are better able to reduce the damage to health that poverty can inflict (World Bank, 2012). An educated woman is able to benefit from health information, make better use of health services (both prenatally and following her child’s birth), have smaller and healthier families, improve literacy and education levels in her children, increase her income, and enable her and her family to live better lives overall.

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However, not only the overall wealth, literacy and related economic policies of a nation must be considered. We are reminded in a number of studies that one must also consider the impact of ethnic and cultural factors (such as language, illness beliefs, parental beliefs, spirituality, and folk practices) on health and the use of healthcare services (Desai, Torres-Rivera & Backes; 2016; Rungreangkulkij & Chesla, 2001; Yeh, 2001; Younge, Moreau, Ezzat, & Gray, 1997). Rosales and Calvo (2017) note that, cultural differences can affect utilization of clinical care; a good example is fatalismo, or the belief among Latino patients that an individual can do little to modify fate, which may result in a reluctance to accept mental healthcare interventions. Similarly, studies regarding the use of thum-jai as a coping strategy with mental illnesses or adverse circumstances in Thailand, indicate that regardless of ethnicity, families of a person with mental illness experience burden (Mills, Wong-Anuchit, & Poogpan, 2017; Rungreangkulkij & Chesla, 2001). However, beliefs about causes of illness, treatments, sources of social support, and coping strategies are influenced by culture. Rungreangkulkij and Chesla (2001), found that a number of mothers of adult children with schizophrenia responded by practicing thum-jai, which creates a calm family environment by being accepting, patient, understanding, and having a sense of obligation to the ill family member. This is practiced when faced with situations that are assessed as unchangeable, and are usually explained as a result of a bad deed committed in a previous life, a belief based on Karma. Cultural beliefs and values may influence practices of disclosing a diagnosis to a patient. Such beliefs may lead to practices very different from those in the West, where it is expected that a patient will be told his or her diagnosis to obtain informed consent for treatment. Studies of reluctance to disclose cancer diagnoses in Egypt (El-Malla, et. al. 2017), Taiwan (Yeh, 2001) and Saudi Arabia (Younge et al., 1997) illustrate this observation. In these studies, a diagnosis of cancer was seen as a terminal illness. Reasons for not disclosing the diagnosis included the age of the patient, the intention to protect individuals from learning about the seriousness of the illness, preventing loss of hope of premature death, or simply not knowing how to communicate the information to the individual. El-Malla et al. 2017 and Yeh (2001) recommend educating parents and healthcare providers to be mindful of patient autonomy and to be more open and comfortable when talking with their children about a serious illness, while maintaining sensitivity to the child’s developmental stage and level of understanding. These studies suggest that such cultural views provide an opportunity for child life and similar professionals working in different parts of the world, to share information about differences and similarities between cultural groups. The goal for child health professionals is to reach a middle ground between

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cultural beliefs and psychosocial research that documents the needs and rights of children and youth to access developmentally appropriate information pertaining to illness and treatment. Another situation that demands our attention and understanding is that of children and youth living in areas of conflict. War and armed conflict affect both today’s children and those yet to be born in ways that can last a lifetime (Devakumar, Birch, Rubenstein, Osrin, Sondorp, & Wells, 2015). Some children grow to adulthood having known only conflict. Living in such conditions takes a toll on children’s development, hope for the future, personal and social resources, and opportunities for health, safety and security. Studies of Syrian children (Devakumar et al., 2015; Friedrich, 2016) and of Palestinian children living in Gaza (Miller, 2000), examine both health risks and status, as well as other psychosocial risks, and offer insight that may be applicable to children living in other countries experiencing political, social and/or ethnic conflict. These studies reflect cultural differences, yet also suggest universal elements, such as the nature of children’s responses to stressful situations. They point out the need for children, families and healthcare professionals to communicate in a manner that is culturally sensitive, developmentally appropriate, and effective in promoting healthy growth and positive coping within families and communities. We are reminded that children’s health is a balance between factors that are internal to the child (e.g., development, coping, and cognitive understanding) with those that are part of the external context (e.g., social, economic, and political factors). One very powerful and internationally recognized tool that addresses the external contexts where children live and grow is the United Nations’ Convention on the Rights of the Child document. We shift our attention to this document. The Universal Rights of Children The twentieth century began with children having virtually no rights; it ended with children having the world’s most compelling human rights instrument, the United Nations’ Convention on the Rights of the Child (UNCRC) (Bellamy, 1999). The UN-CRC (United Nations General Assembly, 1989) is a powerful advocacy tool that has the potential to transform the way children are cared for around the world. It is an international document that forms a cornerstone for the recognition and protection of children’s developmentally unique human rights worldwide. The UN-CRC has been described as the most comprehensive child human rights instrument in history. World leaders and child rights advocates reached consensus on such issues as education, healthcare, play, family life,

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communication and decision making, all aimed at protecting children and youth from stressful life situations, diminishing their suffering, and promoting their full development (UNICEF, 2001b). Most importantly, there was agreement on the principle that children would have the “first call” on all resources needed to secure their rights and that primacy be given to the principle of “the best interests of the child.” With its full range of civil, political, economic, social and cultural rights, and its nearly universal ratification, the UN-CRC has positioned children squarely at the forefront of the worldwide movement for human rights and social justice. The Evolution of Children’s Rights in Healthcare Many advocates have examined the rights of children specifically in healthcare settings. The pioneering work of Seagull (1978) emphasized the rights of children to receive medical care administered in ways least likely to be psychologically damaging, and the need for specially trained staff to provide such care. She presented a “bill of rights” for children in medical settings, which became a key foundational document that led to the creation of institutional “bills of children’s rights” in many healthcare organizations worldwide. The UN-CRC provides a framework for the integration of the principles of children’s rights into healthcare practices. More recently, based upon various articles of the UN-CRC, the Canadian Institute of Child Health (2002) created a document titled, “The Rights of the Child in the Health Care System,” summarized in Table 2. The UN-CRC and Canadian Institute of Children’s Health documents clearly support the creation of opportunities in healthcare to enable children’s voices to be heard, to give or withhold informed consent, and to obtain optimal pain control, among many other rights. These documents challenge traditional perceptions of children’s abilities to express their own views, and encourage practices that take the views of children and youth seriously in order to facilitate their active participation in decision making. The call is for children and youth to be included with their families and healthcare professionals in healthcare decisions that directly impact them. In addition, many aspects of the empowerment of children and youth can be accomplished through education and changes in social practices, structures, and professional attitude, rather than by spending extra resources. This model of practice requires the education and active partnership of children, youth and families with the interdisciplinary healthcare team to create healthcare environments that are responsive to the needs and rights of children. This may be accomplished at the local level through to international projects.

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Table 2 THE RIGHTS OF THE CHILD IN THE HEALTH CARE SYSTEM 1. “I have the right to live and to have my pain and suffering treated, even if I am unable to communicate my need. I have this right regardless of my age, gender or income” (based upon Articles 3, 6 and 24 of the UN-CRC). 2. “I have the right to be viewed first as a child, then as a patient” (article 3, UN-CRC). 3. “I have the right to be treated as an individual with my own abilities, culture and language” (articles 2, 23, 24 and 30, UN-CRC). 4. “I have the right to be afraid and to cry when I feel hurt” (article 12, UN-CRC). 5. “I have the right to be safe in an environment that is unfamiliar to me” (articles 9, 19, 24 and 25, UN-CRC). 6. “I have the right to ask questions and receive answers that I can understand” (articles 12 and 13, UN-CRC). 7. “I have the right to be cared for by people who perceive and meet my needs even though I may be unable to explain what they are” (articles 3 and 5, UN-CRC). 8. “I have the right to speak for myself when I am able and to have someone speak on my behalf when I am unable” (articles 12, 13 and 14, UN-CRC). 9. “I have the right to have those who are dear to me close by when I need them” (articles 3, 9 and 31, UN-CRC). 10. “I have the right to play and learn even if I am receiving care” (articles 28, 29 and 31, UNCRC). 11. “I need to have my rights fulfilled” (article 42, UN-CRC). Source: Canadian Institute of Child Health (2002).

The necessity and value of collaborative leadership in child health was explored by Southall et al. (2000). The purpose of this paper was to present plans for the development of healthcare systems, monitored by the Child Friendly Healthcare Initiative (CFHI) in six countries, which focus on the physical, psychological, and emotional health of children. The goal of the development of comprehensive child healthcare is, To develop in consultation with local healthcare professionals and international organizations, globally applicable standards that will help to ensure that practices in hospitals and health centers everywhere respect children’s rights, not only to survival and avoidance of morbidity, but also to their protection from unnecessary suffering and their informed participation in treatment. (Southall et al., 2000, p. 1054)

Southall et al. (2000, p. 1055) list four areas for improvement in the delivery of child healthcare worldwide, in poorer countries, as well as those with greater resources. These include:

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1. Health Facility (including security; cleanliness; safety policies; and basic drugs and medical supplies to provide a minimal standard of care) 2. Performance of Staff (including basic medical and nursing training on the needs of children) 3. Medical Practices (including effective pain control; effective hand washing practices; and reduction in the indiscriminate use of powerful antibiotics) 4. Respect and Sensitivity for the Child (including implementation of family-centered care practices that encourage parental participation in care and reduction of separation of children from parents, especially during painful and invasive procedures; respect of the child’s need for privacy; explanation of the illness and its treatment to the child and family; and creation of environments that reduce fear). Southall et al. note that even in well-resourced countries, technological advances in healthcare are not always accompanied by attention to children’s overall well-being and concern for their anxieties, fears, and emotional suffering. Even wealthy, well-resourced and knowledgeable nations are unable to lay claim to the elimination of negative childhood psychosocial responses to healthcare experiences. Children, youth and families continue to be traumatized by healthcare experiences and practices that are unresponsive to the developmental, informational, emotional and family support needs of children and youth. Southall et al. provide discussion and guidelines that are applicable to any children’s healthcare setting in any country of the world. The UN-CRC has led to the development of many international projects; some of these are briefly highlighted below. More detailed information about the organizations, their activities, projects and services are available from sources including related professional organizations, published literature, and the Internet, as well as on the Association of Child Life Professionals (ACLP) website which maintains a list of international organizations (www.childlife.org). The Child-Friendly Healthcare Initiative (CFHI) is an exemplary pilot project implemented by Child Advocacy International (CAI) based in the United Kingdom (UK). The pilot initiative is based on the principles of the UN-CRC, and it aims to support local healthcare professionals to improve the standards of healthcare received by children in state hospitals of poorly resourced countries, such as Uganda, Nicaragua, Afghanistan and Bosnia. In the UK, the Action for Sick Children (formerly the National Association for the Welfare of Children in Hospital or NAWCH) has, since 1961, advocated for the improvement of the psychosocial care of children receiv-

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ing healthcare and established a number of initiatives worldwide. Similar organizations exist in several European countries as well as in other parts of the world such as Romania (the Romanian Children’s Relief Fund) and Kuwait (KAACH—Kuwait Action for the Care of Children in Hospitals). Additional European organizations that advocate on behalf of children in healthcare settings include the European Association for Children in Hospitals (EACH) and the National Association of Health Play Specialists (NAHPS) in the UK. In North America, the Institute for Patient- and FamilyCentered Care and the ACLP carry on advocacy and leadership initiatives. In order to empower child health personnel to provide care in a childand family-friendly manner, one must consider the conditions under which professionals work and the curriculum or training medical personnel receive. In developed countries, nurses and physicians caring for children receive some formal education and have opportunity for continuing education on the developmental and emotional needs of hospitalized children. They also have opportunities to collaborate with colleagues, such as child life specialists, hospital play specialists, social workers and psychologists, who keep child psychosocial aspects of care in the forefront. In many developing countries, this may not be the case. Kaur (2000) evaluated nursing curricula in India for content specific to child development and behavioral aspects of care. The study noted a few topics within the curriculum related to psychosocial care and child development, but overall found the child and family health-related content to be minimal and inadequate, and recommended that the curriculum and training of physicians and nurses be strengthened to address the psychosocial needs of children, youth and families. Mishra (2017) found that nurses working in a children’s hospital in India had somewhat limited knowledge of developmental milestones, as well as age appropriate concerns of hospitalized children, yet expressed interest in education regarding the same. A child life specialist visiting Kenya, Bolivia and India also found that nurses were interested in education on the provision of psychosocially supportive care, as long as the resultant care did not demand more of their already over-committed time. There is opportunity for child life educators and academicians to be involved in curriculum enhancement of psychosocial aspects of child and youth healthcare for pediatric practitioners. Child life specialists and colleagues with similar interests around the world can be effective advocates for child health practices. As practitioners of health and psychosocial care we can share our knowledge and expertise in all parts of the world. There is much work to be done.

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PART II: THE UNIVERSAL NATURE OF SUPPORTIVE PSYCHOSOCIAL SERVICES IN HEALTHCARE Settings throughout the world where health professionals may provide psychosocial care are numerous and diverse. In this section we examine a few global efforts from the 1980-2000 period, which provide a historical perspective. Whatever the setting, the elements that reflect quality care remain constant. These include: • Parental presence with their children in health and psychosocial care and as collaborators in family-centered care • Psychological preparation for stressful events and situations including teaching and modeling of appropriate coping techniques • Play, developmentally appropriate activities, and educational opportunities • Multi-modal pain management, including nonpharmacological, behavioral technique interventions • Practices that are based on respect and dignity of the individual, family and all aspects of diversity • Environments that are safe, clean, and child-oriented • Staff training that supports the delivery of child- and family-oriented, quality, comprehensive health and psychosocial care We believe that professionals like child life specialists can play a cost-effective role in providing support, education and interventions that address child development, typical behavioral responses of children, parental anxieties, coping strategies and parent-child interactions. Mallya (1986) initiated child development student placements in a general hospital in India and reported on the success of psychosocial interventions for parents, which included parenting education, support groups, and recreational activities. The interventions resulted in increased participation by parents in their child’s play, rather than just in caregiving routines; increased social networking with other parents and an ability to express their feelings; better comprehension of their child’s illness; and increased ability to ask for information about their child’s illness, as well as about play and parenting roles. It was also noted that the children coped better and displayed more positive behaviors after the interventions, which resulted in decreased levels of verbal threat or indifferent behavior toward the ill child by the parents (Mallya, 1986). Studies from Australia, Haiti and India report on parental needs for information about child development and behavior and the positive outcomes for families when this is provided (Goodfriend, 1999; Hall, Johnson,

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& Middleton, 1990; Mallya, 1989a, 1989b; Ramritu & Croft, 1999). These studies identified a need for family support and social re-integration services, and found that when needs of parents were met, they were better able to care for their sick children and cope with the health problems and possible attendant disabilities. Goodfriend (1999) noted that parents in Haiti benefited from guidance regarding developmental milestones of children and how these can be reached. When provided with information, parents were better able to follow through on suggested interventions with their children. Studies from diverse geographical settings indicate that children’s reactions to illness and hospitalization are universal, and the need for preparation and acquisition of coping skills is reinforced. Children and youth in any part of the world may find illness and healthcare experiences stressful and some behavioral changes may be expected as a result. Education of families and support of children and youth can promote the acquisition of effective coping skills. Health professionals can provide a range of care and psychosocial interventions that are both responsive to this need and, at the same time, reflective of the cultural and social expectations of the country. The knowledge and practices of child life professionals are well-suited to fulfill these roles and needs. For example, a study of hospital patients in Jamaica aged 3 to 13 years found that those with a history of previous hospitalization appeared to be significantly more distressed than patients without previous hospitalization, displaying more uncooperative, anxious, and immature behavior patterns (Pottinger & Ehikhametalor, 2000). This study underscores the need for children to be better prepared for hospitalization, for greater parental involvement in the management of their children’s behavior, and for the provision of programs that address the informational and emotional needs of children and families. Recognition of the potential long-term emotional effects of hospitalization on children and youth and of the need for advocacy for children’s rights in healthcare have led the staff of the Schneider Children’s Medical Center of Israel to make changes in nursing care on pediatric surgical wards (Zelikovsky, 1996). Policies were revised to allow parents to accompany children through induction of anesthesia, whenever possible. This action was credited with decreasing anxiety and fear in both children and parents. Zelikovsky (1996) concludes that parental participation during surgical induction plays an important role in helping children cope with potentially traumatic experiences. The importance of procedural support and intervention is evident in the experience of a visiting child life specialist’s work with a surgical mission in Kenya, where a young child needed to have sutures removed from his tongue.

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A nurse held a small pair of scissors in her hand, and approached the terrified child who was screaming, flailing his arms, and not allowing the nurse to come close to him. The child’s mother looked embarrassed and appeared helpless. The child life specialist took the help of an attending nurse to interpret and encouraged the child’s mother to hold the child in her lap, and put her arms supportively around the child in a comfort hold. The mother complied and the child, although still frightened, was in a more secure position. The child life specialist also asked the nurse interpreter to let the child know that the scissors in the nurse’s hand were just to loosen the “string” and would not touch his tongue. The child calmed down considerably and the procedure was concluded. Following this experience, the child life specialist discussed with nurses the power of including parents in procedural support. This was reported to be novel for them, indicating they would not have thought to ask for parental participation in this type of situation. The nurses noted that they eventually would have strapped the child down, and perhaps even sedated him, if he had not complied, but acknowledged that using the mother’s support was a much kinder and more effective way to deal with the situation. The nurses were also impressed with the value of providing stresspoint preparation and comfort positioning to a child about to undergo a medical procedure. The nurses expressed interest in learning more about such interventions when caring for their patients. They reported that the observed approach did not take extra time, but enabled them to perform the procedure in a more child-friendly and family-centered manner. Concerns about the developmental and healthcare needs of children, youth and families are wide-ranging and the need for inclusion of sound psychosocial practices in support of their health experiences is evident. Children and youth who are prepared for healthcare experiences in a developmentally appropriate manner demonstrate more positive outcomes in their behavior, recovery and strengthened ability to cope with stressful events. These outcomes are well documented in the child life literature and provide a solid foundation for child life interventions (see Chapter 9). How, then, can child life specialists become involved? What follows are descriptions of ways that child life specialists have become involved in international activities that promote opportunities for professionals and learners to share their skills with children, youth and families in our global community.

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PART III: INTERNATIONAL EFFORTS TO PROMOTE PSYCHOSOCIAL CARE IN HEALTH Since the original writing and publication of this text, global pediatric psychosocial hospital programs and initiatives have gained greater awareness, integral growth, and evolving recognition. As witnesses and, at times, direct participants in some of these exciting developments, the authors are humbled by this movement. We recognize this is not an exhaustive discussion of all of the current efforts, of those driving them, and of ways for others to get involved. We encourage the reader to continue to research and connect with those programs beyond the pages of this text and perhaps become inspired to promote and strengthen child life practice to help support global outcomes. Taking Stock: Pediatric Psychosocial Service Models around the World In this section, we take a brief look at some psychosocial programs and services around the world, including recent efforts of the ACLP in providing outreach and international networking opportunities. We acknowledge that while many other notable psychosocial programs exist across the globe, we offer only a few examples. Before we begin, however, we want to acknowledge and provide some historical context of great pioneers in the child life global world, Muriel Hirt and Peg Belson. These two individuals are child life role models who, in the late 1970s, collaborated to initiate an international experience for child life students called the “Wheelock Summer in London” exchange, a program that continued through until 2011. Even before this collaboration, Muriel Hirt, founder of the Wheelock College Child Life program, had advocated for the psychosocial care of child patients during her travels to India. Peg Belson was a founding member of the National Association of the Welfare of Children in Hospital (NAWCH) in the United Kingdom (now the Action for Sick Children) and continued to serve as an advisor up until her death in 2012. Over the years Belson coordinated the Wheelock summer exchange program and lectured on the psychosocial healthcare of children and families in countries around the world including China, Bosnia, the Netherlands, Poland, the United States, and Australia. Belson initiated the development of play programs in Kuwait, Bosnia, the Netherlands, Malta and the Czech Republic, and developed the initial curriculum for the child life training program in Kuwait in the early 1990s. Belson and Hirt opened their homes to

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guests from around the world who had traveled to their respective countries to observe psychosocial practices in action. These are two of many child life leaders who have contributed to the development of our profession; they have encouraged us to learn from and work with all who are striving to provide psychosocial services and healthcare to children and families around the world. Development of programs that promote the psychosocial care of children has occurred throughout the world; we will highlight and update some of the core countries introduced in the first edition and integrate others as examples of types of international work available for aspiring child life specialists to pursue. Development of such programs is typically an interdisciplinary effort based on collaboration among child advocates in pediatrics, nursing, social work, psychology, education, and child development fields. The funding for psychosocial programs may vary, from hospital funds to government budgets. The philosophies of the programs may vary, from informal play programs provided by untrained volunteers to highly structured psychosocial support programs provided by qualified child life and hospital/health play staff. Each program reflects the social, cultural and economic conditions of its country of origin. The United Kingdom (UK) Health Play Specialist (formerly known as Hospital Play Specialist) is the title adopted in the UK to represent the evolving role and qualifications of those professionals who support children and families through healthcare experiences. The role of health play staff in the UK and elsewhere is similar to the role of child life specialists in North America. The National Association of Health Play Specialists (NAHPS) and the Healthcare Play Specialist Education Trust (HPSET) are the main charities that serve to promote quality patient care and standards of practice of (NAHPS) and as the training and registration body for Qualified Healthcare Play Specialists (HPSET). Barnes (1995) reported significant advances since 1965 in providing for the medical and emotional needs of hospitalized children. UK hospital/ health play staff have been successful in gaining government recognition, and in 1992 discussions initiated by NAHPS with the Department of Health led to the official recognition of Hospital Play Specialists as a distinct staff group in the National Health Service. To this end, HPS attained a grading scale similar to that of nurses and other allied health professionals. In addition, advocacy of the position that all pediatric wards have trained hospital/health play specialists was supported by a 1991 Department of Health recommendation, and re-emphasized in 1993 and 2003 by the National

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Service framework for hospital services for children. In 2012, after moving forward from a diploma-only requirement, the first students with the new degree in Healthcare Play Specialism graduated. This education standard is now the requirement to apply for professional registration and license to practice as a Registered Health Play Specialist. The establishment of this standard is a milestone in helping to validate and maintain the profession in an ever-changing healthcare environment. The change in professional title coincided with the institution of this educational requirement to both be more inclusive of the comprehensive settings in which HPS in the UK provide intervention (i.e. community) and to avoid confusion when programs hired different professional titles to fill play roles within their Trusts. Many countries throughout Europe and elsewhere, such as Australia, New Zealand, Hong Kong, China, and Japan, have also adopted a hospitalhealth play specialist model either on their own accord, as influenced by the UK model, or as a hybrid mix of child life specialist and hospital/health play specialist roles within and across programs. Other, more formal collaborations have also been forged, as in the example of University of Shizuoka in Japan which established an affiliation with NAHPS in 2006 to promote hospital play services and share best practice, research, and training. Not all of these hospital-health play specialist programs have the same educational requirements, and they vary in their scope, practice, and recognition. Interestingly, in an effort to resolve confusion around the many titles held by those in the field—hospital play specialist, play therapist, educational play therapist, play coordinator—and to unify and strengthen the profession, professionals in Australia adopted the title of Child Life Therapist in June 2014. This evolution from a hybrid to a more standardized model was the result of a Strategic Forum on Play in Australia which also included the development of Recommended Frameworks and Scopes of Practice for Child Life Therapists that can be found on the Association of Child Life Therapists Australia’s website http://childlife.org.au/ New Zealand In New Zealand, there is a commitment to biculturalism with recognition of the culture of the indigenous Maori people. A multidisciplinary reference group including pediatricians, child health nurses, hospital play specialists, and child advocacy groups, is developing New Zealand’s Standards for the Wellbeing of Children and Young People in Healthcare Facilities. Hospital play programs are funded by both the Ministry of Education and hospital budgets and are chartered as early childhood services, which must incorporate New Zealand’s early childhood curriculum. This curriculum is concep-

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tualized as Te Whaariki or “precious woven mat,” which is defined as all experiences, activities and events, both direct and indirect, which children experience in the environment. When considering the hospital environment, the curriculum requires that the environment be structured so that health and development is promoted, emotional well-being is nurtured, children are kept safe from harm, and are psychosocially supported to develop trust, attachment and self-esteem. This is accomplished through the delivery of healthcare that includes play, preparation, parental involvement in care, and trained staff (Kayes, 2000, 2001). The Hospital Play Specialist Association of New Zealand is a professional body that publishes a journal called Chapters, advocates with hospital administrators and government policymakers, and liaises with comparable agencies internationally including the ACLP. Philippines Commemorating its 25th year in 2017, Kythe Foundation, Inc. remains as a leading nongovernmental organization advocating for and providing psychosocial care to hospitalized children in the Philippines. PETALS is the acronym used to describe their child life program services: Play, Educate and Prepare Children, Tend to the Emotional Needs of Child and Family, Assist during Medical Procedures, Lend Financial and Medical Assistance, and Support Parental Involvement. The country’s first such program was implemented in 1998 and had increased to programs in thirteen hospitals by 2012. Unfortunately, as a result of natural disasters that hit the country and subsequently redirected essential donor funds, by 2014 only seven such programs remained active. Kythe Foundation Inc, is a lesson in resiliency itself and has overcome many challenges while keeping the primary goals in focus, espousing the motto, “Always in all ways, for the Filipino children” (Sievert-Fernandez, 2016). Not to be deterred by these challenges, they shifted from a servicedelivery to capacity-building model in late 2014. This new beginning resulted in integrated strategies to empower parents, conduct “passion for caring” workshops with multi-disciplinary teams, and create an enabling environment for holistic child care. This latter component includes working with similar national organizations and committees to advocate for clear policy requiring child life and other psychosocial services in pediatric wards. Kuwait In Kuwait, a vision of more comprehensive psychosocial care can be seen through the work of a voluntary nongovernmental organization called Kuwait Association for the Care of Children in Hospitals (KACCH), founded in 1989 and directed by Margaret Al-Sayer. KACCH is devoted to

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upholding the rights of the child as declared in the UN-CRC and improving the ways in which the healthcare community in Kuwait responds to the unique emotional and developmental needs of children in hospitals (Coleman, 1999). Its mission is to advocate for the provision of optimal conditions for children and their families in hospitals, in order to reduce the adverse effects of hospitalization on their development and well-being. The KACCH team currently consists of five child life specialists, two certification exam-eligible staff members, thirteen play leaders, one deputy director, and one senior child life manager. The teams work on pediatric wards throughout six hospitals and provide services to other areas such as outpatient departments, same-day surgery units, and pediatric accident and emergency units. Other initiatives include the Bayt Abdullah Children’s Hospice, developed to provide multidisciplinary, family-centered, pediatric palliative care and support to children with life-limiting or life-threatening illnesses and their families. Children receive the specialized care they need, with emphasis placed on quality of life, including provision of child life and psychosocial support throughout their journey. Kuwait University offered a graduate diploma in Child Life Studies from 2010 through 2012 and is now in the process of developing a two-year Master’s degree in Child Life. The World—Together in the Same Room! In May 2014, CLC held a grant-funded International Summit on Pediatric Psychosocial Services. The grant allowed CLC to build upon strategic projects, with one of the major focuses being international outreach and collaboration. Forty-six delegates from 45 different countries participated in the summit. Delegates shared their experiences, networked with international colleagues, and participated in panel discussions and learning sessions related to the theme: A Global Perspective on Play and Psychosocial Care for Children in Hospitals (Reynolds, 2014). The international summit’s key objectives were to: (1) initiate an international dialogue on the current state of pediatric psychosocial services, (2) create a baseline of knowledge for participating countries, (3) identify, recruit and educate senior-level healthcare professionals on the importance of pediatric psychosocial care, (4) provide educational opportunities through CLC, and (5) establish a network of individuals dedicated to advancing various modalities of play and psychosocial services. Materials from this summit, including the compilation of the country profiles and session recordings, can be found at https://www.childlife.org/Annual%20Conference/International Summit.cfm Although the delegates represented an eclectic group of professionals including child life specialists, hospital/health play specialists, physicians,

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nurses, psychiatrists, psychologists, volunteer coordinators, and NGO founders/administrators, all were united in their passion and commitment to help support the children and families in their care. Participants had the opportunity to share their unique experiences and varied models of care and discovered commonalties of practice, challenge, and hopes for the future that unite all of those who work to enhance the psychosocial outcomes of children and families experiencing healthcare throughout the world. PART IV: CHILD LIFE INVOLVEMENT The Opportunities and Challenges for Child Life Practice Internationally Portions of the Mission, Vision, Values and Operating Principles statements of the Child Life Council’s Official Documents (2015) support an expanded role for child life professionals on the international stage. For example, the statements note that child life practices “will be applicable to any healthcare setting and transferable to other environments or situations in which the potential for infants, children and youth to cope, learn and master is placed at risk” (p. 4) and that our “philosophy and identity [will be] accepted on an international level” (p. 5). The CLC’s vision-to-action initiative in 1996 challenged child life professionals to consider settings and countries where they can offer their knowledge and skills, and to identify settings where children are facing stressful life events. This includes children and youth around the world living through stressful life events and conditions including war, refugee camps, poverty, epidemics such as HIV/AIDS, and orphanages, to name a few. Global engagement was also one of the strategic objectives outlined in the CLC’s 2012-2014 Strategic Plan. These professional documents and activities lead us to dream, plan and implement new roles in which we can apply the rich knowledge, skills and experience we possess. Opportunities for involvement may include activities that are broad in scope, affecting change of policy at governmental levels, while other activities may involve more direct service at a grassroots level. Regardless of the application opportunity venue, global health can be readily integrated into your career without relocating. It is not always necessary to travel the world to effect change; we offer examples of opportunities for participation in affecting changes for children, youth and families without leaving your community. Child life specialists have access to strategies in building global health into their current positions, for example through joining global health nongovernmental organization (NGO) groups, investigating regional global health associations within the area of employment, attending a global health

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training course or annual global health meeting, or joining national global health education groups and applying their resources (Staton, 2013). The world has truly become a global village as a result of technological advances. And we must remember that our own “backyards” also need attention and change in order to create better futures for our children and youth. As child life specialists and as a profession, we can contribute by learning and advocating for child and youth rights at all levels. There are many activities that can facilitate this goal, and yet there are also many barriers to recognize and navigate as appropriate. We recognize the many opportunities and challenges to our participation in international activities; sometimes it takes courage to leave one’s own comfort zone and commitment to become involved and to meet or discover individuals and organizations that share common interests and goals. We offer the following examples and ideas to stimulate your thinking about ways you might become involved in international activities. Although presented in categories here for ease of presentation, many initiatives fall into more than one of the categories. A model in one country/culture may not work in another and will need to be continually reevaluated as culture and contextual factors necessitate. Brylske, Sievart-Fernandex, Clark, and Clappsaddle (2016) discuss the concept of seeking “right fit” and offer examples of models for involvement including, consultancy (Macedonia and Serbia), foreign nationals training in North America (Philippines), North Americans working abroad (Qatar), and North American nationals implementing a child life internship abroad (India), sharing the obstacles and opportunities of each model. Similarly, McGinnis (2016) cites the influence of professionals in Kenya, Georgia, South Africa, India, and the Philippines in developing programs customized to the cultural and contextual needs, including the of training staff with titles alternate to the traditional CCLS credential, a necessary pathway in lowresource countries. To sum, there is no one right fit and responsiveness to the culture and context is integral for success. Advocacy We can advocate and lobby for a variety of issues affecting children’s health and well-being globally. When a number of professional groups advocate for the rights of children and youth, including access to healthcare and comprehensive psychosocial services based upon the principles of the UNCRC, the strength and viability of the message increases and political pressure is more likely to succeed. An example of such advocacy occurred in 2016, when three child life specialists presented at a United Nations Commission for Social Develop-

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ment on the use and value of mobile technology (Moatz, 2016). Their presentation expanded on the work of the child life profession and the overall development and role of technology (as guided by child life and special needs practitioners) in helping children and families, domestically and internationally, to access essential services and interventions through these means. Collaboration As individuals and as members of professional organizations, we can join hands with other agencies to set standards and promote the rights of children in healthcare settings and in other potentially detrimental circumstances. NGOs with similar service goals offer excellent launching points for establishing international partnerships. Long-term initiatives to address economic, social and political issues of countries in need are another option for collaborative work. The challenge is to define roles for child life specialists, train for those special circumstances, work within interdisciplinary teams, and support sustainability within the setting. A recent example of collaboration is found in the evolution of services that has occurred through the combined, and thus strengthened, efforts of two such groups in South Africa—the pain management department of the Red Cross War Memorial Children’s Hospital (RCWMCH) and Lionhearted Kids (a nonprofit organization in both the US and South Africa). The pain management department advocated for child life services in addressing pediatric pain but, due to funding challenges, the services had been difficult to sustain. In 2011, Lionhearted Kids assisted the department in the development of the Creative Arts Therapy & Wellness Program (CATWP), which offers art therapy, music therapy, massage therapy, yoga and child life services as complementary therapies for pain management. Lionhearted Kids had also collaborated with universities and dedicated child life specialist instructors to provide volunteer student exchanges and practicums. In 2016, the founder of Lionhearted Kids completed the first ever child life internship at the hospital with the support of CATWP. The organization continues to seek ways to sustain the program and offer training and volunteer opportunities to enhance international students’ cultural competence, particularly as it relates to working with children, families and community organizations outside of the US. (Lauren Pech, Personal communication, June 2017). Education In many countries, people involved in child healthcare may not have specific education or training available about childhood psychosocial and health needs or the needs of children living in difficult or potentially detri-

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mental circumstances. As an example, many pediatric residency curricula do not include information or training in psychosocial aspects of child health. Even psychology and child development curricula may have little focus on the psychosocial issues of childhood health. Child life specialists, working with interdisciplinary child health professionals, can facilitate the development of minimal standards for inclusion of psychosocial principles in all spheres of child health training. In 2016, as part of ACLP’s continued effort to highlight and expand pediatric psychosocial services globally, ACLP received a grant to create and implement a train-the-trainer program on best practices in pediatric psychosocial care (child life) that would be replicable internationally. Workshops were provided for participants with a comprehensive curriculum and the training and tools they would need to train other professionals in their countries. The initiative focused on Indonesia, Malaysia, and Thailand, countries chosen to complement and expand the grantor’s efforts to support pediatric psychosocial services in the region. Participants in the training were senior level hospital administrators, doctors, nurses, psychologists, social workers, and other appropriate medical personnel. They were taught by members of the ACLP’s International Collaboration Committee, who utilized the trainthe-trainer model to support participants in expanding the knowledge beyond these initial workshops (C. McGuire, personal communication, June 20, 2016). Education initiatives need not be as large scale as the above. Most teaching pediatric hospitals in North America have a corresponding international center that helps facilitate learning across all professions. Child life specialists often have the opportunity to contribute to their international colleagues’ learning—providing shadowing opportunities and seminars to enhance their understanding of a comprehensive patient- and family-centered model of care. Additionally, opportunities to host international child life interns creates a reciprocal learning experience in which both sides benefit. Hochu (2014) writes that one child life department in Canada experienced this by hosting two play specialists from Hong Kong and a play therapist from South Africa to complete their clinical internships. The team felt, “energized and enriched by the commitment and knowledge our international colleagues have brought to our setting” (p. 4). Student Experiences Abroad Many emerging child life specialists seek out opportunities to complete their initial practicum, internship requirements, or qualifying volunteer experiences, in international settings. These can be acquired through universi-

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ty affiliations with international programs, individual outreach and networking, and through non-university affiliated organizations. Child Life United, founded by a certified child life specialist, has helped facilitate practicum, internship, and volunteer opportunities in Romania, Australia, Philippines, Israel, and Mexico (http://www.childlifeunited.org/) Professional Membership and Involvement Participation in professional organizations has been a critical factor in the development of international programs addressing pediatric psychosocial care. With this in mind, we encourage ACLP and other organizations to minimize cost barriers to membership and to continue to offer scholarship opportunities for professional participation in conferences for psychosocial care providers from different countries. We also encourage the exploration of alternative educational models, which will ultimately enrich the psychosocial care we provide children, youth and families. As such, our professional bodies should embrace diverse models of providing services, support, education, and credentialing opportunities to pediatric psychosocial professionals around the world. International Research and Information Sharing Studying trends from international public health models for the care and reduction of childhood illnesses worldwide provides an understanding of practices that are successful and why. Maternal and child health programs, implemented worldwide, offer models for learning and collaboration. Communication and discussion with international strategists can lead to integration of psychosocial care into the various models of healthcare delivery to children and youth. Researching and documenting the practices of parents and professionals in countries that reflect excellence in the psychosocial healthcare of children can provide opportunities for collaborative work to develop and strengthen practices in a variety of settings. An example of international information sharing is Child Life Romania’s collaboration with a local university to hold the International Conference for Psychosocial Services with speakers and guests from all over Europe and North America—just one of the many initiatives this organization has undertaken in its seven-year existence to support the culture of change needed to integrate child life principles into the healthcare system and support developing psychosocial professionals (Soritau et al., 2016).

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International Consultation Excellent learning opportunities are made possible by the ease of global communication and travel, coupled with interest expressed by students and professionals to travel for educational, consultative, and job exchange experiences in children’s psychosocial and healthcare environments. As individuals, we can participate in professional exchanges and arrange seminars about child life in various countries. Heney and LeBlanc (2004) shared their involvement with their late colleague, Kathie Moffatt, as consultants with the International Children’s Institute (ICI) in post-war Sarajevo. This consultation included conducting focus groups and implementing staff training, the creation of playrooms, and the publishing of resources for both staff and families. They noted the importance of North American child life specialists providing consultation in a manner that respects local culture, contexts and expertise. Many initiatives that begin as international consultations can and do lead to a more permanent model of psychosocial support and role development. One such example is the growth and evolution of child life in Qatar. The consultation began as part of a larger, comprehensive pediatric training initiative in which pediatric teams from The Hospital for Sick Children in Toronto, Canada consulted with hospitals in Qatar. Child life was part of these consulting teams over a period of five years, and today there are two child life programs in the country—one at Hamad Medical Corporation, a healthcare organization that encompasses several hospitals, and the other, Sidra Medicine, a newly developing hospital dedicated to address the growing need for patient-focused medical services for women and children. Both programs collaborate often and have plans to hire staff from abroad and train nationals to become child life specialists. Medical Missions Medical missions, with a variety of goals and activities, have become more visible and accessible to individuals with a range of skills and experience. Work with medical missions in developing countries in Africa, Asia, and South and Central America revealed that the concepts of play and preparation for hospitalized children were novel, especially in rural areas, very poor communities, and in most public hospitals. Professionals working on these missions noted that preparation of children for medical procedures was well received by parents, who often expressed appreciation for the information and asked questions concerning their children’s behavioral and emotional responses (Desai-Joshi, 2000). It has been observed by the writers that children in any country respond positively to toys, or an opportunity to play.

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Employment and Long-term Volunteer Work—Search Outside the Box! Just as in North America, many international “non-traditional community based” settings can benefit from the work of child life specialists and even evolve into new traditional settings for the profession. Pletsch (2017) provides an example of this when discussing her role as an early childhood development program manager for an organization serving Syrian refugee families in Greece, with a mission to increase resilience and enhance well-being through culturally sensitive psychosocial support. Pletsch draws parallels between her work there and her former work providing child life services in an emergency department setting. Familiar interventions such as play, advocacy, facilitating group support, and providing a semblance of normalcy, are all essential in supporting children and families through trauma of any kind. Additionally, Montgomery (2012) shared her experience using child life skills as a Peace Corps volunteer in Rwanda, highlighting the power of play in building relationships with children and families. Preparing for International Work There are a number of considerations to be made related to international work. This section discusses some of the components international travelers and workers should consider as part of their preparation. To begin, at a personal level, the challenges one may face in another country are mainly overcome by one’s attributes of flexibility, caring, compassion, an ability to relate to others, to work with an interpreter, and to maintain a sense of humor and wonder. These interpersonal skills help to smooth the challenges that are sure to be encountered in international work and will also increase the experience of success and reward. In addition, when a professional works in another country and does not address the prevailing cultural issues, the work will likely not be sustained over time. Professionals must remain sensitive to their role as guest. A colleague, George Lang (personal communication, spring 2000), reminds us, “always remember it’s their program, not ours.” If these words are carried with us, we can best appreciate the privilege of sharing in another culture and then returning home to share what we have learned. The example below speaks to these points. In Kuwait, a child life consultant visited a hospital unit for children with leukemia. Child life students wanted the consultant to see a hallway playroom in action. As the consultant entered the unit, a young teenage boy was seen

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standing in his hospital room doorway. The consultant greeted him and to the surprise of the consultant, he responded in English. The consultant stopped for a brief chat and invited him to join the activities in the play area. As the consultant proceeded down the hallway, she stopped to admire a beautiful well baby sibling in a walker in the middle of the hallway. Siblings and mothers or maids may room-in during hospitalization in Kuwait; family-centered care, in that sense, seemed natural and commonplace here. A short time later, in the play area, the teenager arrived and chatted with the consultant as the younger children played. When the teenager was asked if the consultant could have a photograph taken with him, he graciously agreed. He and the consultant posed, and a student was preparing to take the picture. Suddenly, all the children in the play area gathered around for the picture, with their mothers or maids watching from nearby; the students joked and told the consultant the moms wouldn’t join the picture because they didn’t have their makeup on yet. What a wonderful shared experience. Then out of nowhere, the healthy infant sibling whom the consultant had been admiring a short time earlier was thrust into the consultant’s arms for the photo shoot. What a beautiful picture; what an incredible memory! The consultant will always remember the feeling of honor and privilege she felt as someone handed her their baby, their most cherished possession, to her a total stranger, a foreigner in this land. At that moment the consultant says she knew what it felt like to bridge cultures. Many reading this chapter may also have such amazing experiences. How does this all relate to child life and psychosocial care? The consultant hopes that it is evident from this story that respect can be conveyed by one’s manner, behavior, love and compassion, and a desire to learn. The reciprocated sharing, exchanging and learning began to blur the distinction between learner and consultant and one must ask, “Who was really learning the most here?” Whether one is preparing for a short-term medical mission or work on a longer project in another country, the following guidelines may be helpful. In all instances, it is important to explore the following points: • The purpose of your travel • The country you will visit, including the language, geography, economy, political system, educational and healthcare systems, culture(s), foods, clothing, behavioral expectations • Developing cultural sensitivity

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• The varied roles of child life specialists in a variety of settings and cultures • General travel tips Purpose of the Travel First and foremost, explore in detail the purpose of the travel. Become informed about your role on the specific project. There are a number of international activities that have varying goals and purposes, including medical missions, student exchanges, faculty or professional exchanges, consulting work, and other opportunities, such as conference participation. Be familiar with the purpose and objectives of your travel activities. The Travel Destination Learn as much as possible about the country, and the specific region of the country, where you will be traveling. Read and talk with people from that country. Contacting a cultural center or college/university in your area may be helpful, as both often have people from many different countries who would be willing to talk with you. Also, consider contacting the ACLP to find out if they know of anyone who has been to the country you will visit, or check the website (www.childlife.org) to locate related organizations in the country of your destination. A contact person will be an invaluable source of information. Learning will continue when you arrive at your destination by talking with the local people. In our experience, people are willing to share information about their country and culture, if the traveler is interested and respectful. Aspects of a country to inquire about may include: geography, weather, language, foods, clothing, religion, ethnic groups and culture(s), economic and political systems, education and healthcare systems, healthcare beliefs and psychosocial practices, education of healthcare providers, common childhood health concerns in the region/country, population demographics and health indicators, including the country’s Infant Mortality Rate (IMR) or the Under 5 Mortality Rate (U5MR). Cultural Sensitivity Familiarity with the culture will promote a timely transition and best assist in avoiding culture shock for oneself. Culture shock occurs as a result of a change in normalcy from one’s habitual lifestyle to entering a new culture where such familiarity is lost. It is vital to recognize such changes in daily life experience, as well as to identify your own reaction to the differences. Cultural insensitivity can readily arise when behavior, actions, and respons-

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es towards the new culture are expressed in a culturally inappropriate manner (Wagner & Conway, n.d.). In preparation for providing culturally sensitive care, learning phrases and greetings used in the local language will convey respect for the people and their culture, as well as your desire to learn. If there is time before your departure, you might enroll in a conversational course in the language the children and their families will be speaking. If this is not possible, try to learn basic greetings, farewells and common phrases. By increasing your understanding of the new system and remaining aware of your emotional reactions, the changes of cultural insensitivity likely will decrease while enhancing your own experience (Wagner & Conway, n.d.). Remember, too, that “play is a universal language.” It will not only open doors to building trusting relationships with children and families the world over, but will also encourage improved interactions and cultural understanding. You will likely be working with interpreters when providing child life services in international settings. When doing so, avoid language with jargon and slang forms of words. Use basic, common language so an interpreter will have an easier time finding a similar word in their language to convey your message. One author experienced difficulty presenting a paper on child life in Beijing, China. It helps to have colleagues from outside your field read prospective papers and give feedback before you travel so you can minimize the possible confusion poorly translated jargon may cause. Communication extends beyond the words and actions exchanged within the new environment to avenues of sharing your experiences with others. As sharing information on various media sites has become increasingly available, private elements quickly become public. As a visitor, your communication should remain private. Reflection of your experiences, thoughts, and culture shock trajectory is encouraged in a private forum to avoid ethical and professional dilemmas, as well as cultural misunderstandings and invasion of privacy (Wagner & Conway, n.d.). Space, touch and eye contact all vary widely from culture to culture. One could unintentionally offend guests or be offended by them. Once again, contact someone at a cultural center or college in your area for help with these questions, or ask your host about expected behaviors. Accept the customs of the country you are visiting; don’t expect people to change their customs for your comfort. Time concepts vary widely from culture to culture. In industrialized Western culture, work and everyday activities tend to center around the clock. In many other parts of the world, “clock time” appears less important. For instance, a visiting consultant found students arriving late for class, but they were willing to stay beyond the scheduled class time. Initially, the con-

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sultant was concerned that the students were not interested in what she had to offer and felt frustrated that the students did not arrive on time, yet expected her to stay longer than intended. She later learned that the students were celebrating a religious holiday that included fasting and preparation of special foods for when the fast was broken. As a result, they were staying up much later than usual. It was clear in this case that what might be considered tardiness in Western culture was not a lack of interest or desire, but due to religious and cultural obligations. Gender roles and respect for the elderly may hold primary importance in many cultures. In some cultures, males or elders are viewed as the decision makers for the family, and questions must therefore be addressed to them. A mother may feel “lost” if she is asked to make an important medical decision about her child if her husband is not present, as this is part of his culturally designated role. Similarly, in other cultures, women may hold the primary responsibility for children and their overall care, including health matters, and be primary decision makers. Review common healthcare beliefs of the country you are visiting. The hosts can be very helpful in answering questions. In some countries, as discussed in this chapter, there may exist a strongly held belief that the word “cancer” is not used with a patient or family, or that a patient is not told of his or her diagnosis. Knowing these beliefs and values is very important when working with children and families in healthcare settings. Similarly, determine what is acceptable clothing. Be culturally sensitive and respectful. Find out what is typically worn by people in the area, and dress according to local expectations. In general, and especially when working with children and families, it is best to dress conservatively; for example, women should wear longer length skirts, and blouses and sweaters with sleeves. Be prepared and willing to try a variety of foods. People the world over use food to welcome and nurture. Be a gracious guest and try the range of foods presented. Before a trip, you might also inquire about the accessibility of the ingredients of one of your own favorite recipes; how wonderful if you can make your favorite dish and share it with new friends. Be Responsible—Even Good Intentions Can Have Unintended Negative Impact We would be remiss if we did not integrate some mention of current ideas about, and criticism of, “voluntourism,” a growing trend of altruistic traveling based on individuals’ desires to help make a difference in the lives of others, while also having opportunities to support one’s own growth and

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development through doing something meaningful. And indeed, these goals can be achieved through a variety of volunteer opportunities both home and abroad. However, negative consequences can also arise due, in part, to the power and privilege dichotomy that is always present, when volunteers from wealthier cultures work in settings with fewer resources. McLennan (2014), studied medical voluntourism in Honduras and found that factors such as language and culture, resources, personnel (i.e., skill level of volunteers), knowledge (including past medical history), and length of the experience to be of limitations that can contribute to harmful consequences. She concludes that volunteer tourism participation as a means of education and social action does not always come naturally and requires nurturing, including an honest appraisal of the benefits and harm to both the sending and host organizations. McCall and Iltis (2014) also address the ethical issues of undergraduate student involvement in global health volunteer work in resource-poor settings. They propose a curriculum framework to help address ethical issues that arise, including exploration of the purpose and underlying motivation for participation. The issues are complex and require continuous self-reflection of one’s motivations, biases, and impacts. Such issues are familiar to child life specialists, who often serve as a protective layer between pediatric patients and their families or who must negotiate volunteer initiatives undertaken or proposed in our own facilities that straddle the benefit/harm spectrum. The Center for Peace and Global Citizenship at Haverford College, (www.globalsl.org) provides a multitude of evidence-based resources to help support ethical global learning, partnerships between communities and universities, and sustainability. Among these resources is a Global Citizen Guide, as well as a selection of activities that support understanding of one’s own culture, position in the world, and the continuous reflection required when learning on the global stage. The Role of the Child Life Specialist The four main functions you will most likely be asked to address as a child life specialist working in another country include: • Providing play opportunities • Providing psychological preparation for children and families • Advocating and facilitating parental participation and family-centered care • Completing an educational or work exchange

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Review the job description/objectives for the trip. Consider carefully what people will want and expect of you. At the same time, be prepared to remain flexible. Prepare for your work, but know that you may need to adjust your plans to respond to the circumstances or needs and interests of your hosts. Providing Play Opportunities. When providing play opportunities, it may not always be possible to carry toys or play supplies with you. If, however, you are able take supplies, a suggested list follows. Be aware of cultural issues in toy and play material selection. Consider cost-effectiveness. If possible, find out about popular local games in advance (the Internet is a good source of information for this), or learn about these once you arrive at your destination. Learn cultural beliefs about play. For example, many Muslim families (but not all, remembering that each family and country is unique) believe personification of a life form is not acceptable in toys or drawings. That may mean one may not be able to use infant mobiles with animals or dolls. Older children should not be asked to draw themselves or their families. If planning medical play with a hospital soft doll, explain to the caregiver what you are about to do and ask if it is permissible to do so. Also, avoid using food (e.g. dried beans, lentils) or excessive amounts of medical supplies for play in resource-limited countries to honor their sensibilities toward wastefulness of such precious commodities. You should plan to take with you materials that are simple, easily transportable, and reusable. This may include arts and craft supplies (crayons and markers; glue sticks; paper; scrap materials; a play dough recipe; string; needle and thread; stickers), dolls and puppets, picture books or books in the language of the country, basic toys and activities (playing cards; magic wands; blocks; bubbles; matchbox type cars; plastic animals), baby toys such as rattles and mobiles and a toy medical kit. Providing Psychological Preparation for Children and Families. If involved in psychological preparation activities, consider bringing your own supplies. In developing countries, it would be considered wasteful to use expensive medical supplies for medical play, collages, and preparation. Consider group preparations. Take pictures of medical equipment in the country of your visit, in order to prepare children for procedures; do not use pictures of equipment from your own country. Include parents of all children during preparation, especially parents of infants and toddlers. Do not take photographs of children and families or any local people, unless they give their permission to do so. If your request is denied, be gracious and accept the fact. Advocating for and Facilitating Parental Participation and Family-Centered Care. When advocating for family-centered care and parental participation, model behaviors to encourage parents to participate in their child’s routine

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care, and provide a supportive presence during procedures. This process may include educating medical staff as well. Encourage parents to ask questions about their child’s medical care as well as their child’s developmental and emotional needs. Encourage parents to be supportive of each other. Completing an Educational or Work Exchange. For an educational exchange, plan your lectures, presentations or discussions recognizing that you will need to be very flexible. Be prepared to put lecture notes and plans aside, so you can talk with students or professionals about their interests and concerns, which may not be part of your prepared text. Work side-by-side with local staff, especially pediatric nurses and other front-line staff to increase the likelihood of sustainability of the child life philosophy. Consider bringing small gifts to give to your hosts. Children’s books that don’t require language to read, something special made in your area of your country, and special candies are all good possibilities. Of course, the gift of sharing yourself is most important, but some small souvenirs may be highly prized. Also, it is important to be well prepared and informed about your personal needs when you travel. Do make sure you have your essential travel documents such as passports and visas. Take care of your own health and medical needs. Carry enough cash for a few days and have ways to be able to exchange to local currency. Be mindful of different electrical voltage used for your personal care and grooming items. Finally, always remember your incredible ability to remain flexible. Use that ability now. Your combined warmth and generous heart, personality and sense of wonder will take you far in international experiences. Have fun, share yourself, and learn! (Adapted from Moltman, Giardina-Auten & Lang, 2000; Desai-Joshi, 2000.) CONCLUSION Earlier in the chapter we asked the question: How can child life help to promote the psychosocial health of children and youth worldwide? It has been our intent to provide the reader with information necessary to begin the learning process and to identify a range of challenges and opportunities that exist. Our goal has been to share information that provides a “point of entry” into our ever-shrinking global community. There is a role for child life specialists in many parts of our world, especially where illness, conflict, deprivation and upheaval exist. One of our colleagues, Marianne Kayes, Hospital Play Specialist in New Zealand, poses a challenging question by asking:

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This is a difficult question with no easy answers. Hopefully, questions of this type will spark in us a challenge to connect and dialogue with each other in order to broaden our knowledge and understanding of global issues, cultures, and resources in relation to the psychosocial needs of our children and youth globally. There are many voices of children and youth calling for our action. Responding to this call is vitally important. As it has been said so many times, our children are the future of this planet. We encourage you to join us, as we have joined Muriel Hirt and Peg Belson, pioneers and mentors in international work, in accepting the challenge. Most exciting is the prospect that there is as much to gain as is given as we joyfully embrace the diversity of our planet. REFERENCES Barnes, P. (1995). Thirty years of play in hospitals. The International Journal of Early Childhood, 29, 48–53. Bellamy, C. (1999). The progress of nations 1999. New York: United Nations Children’s Fund. Benzeval, M., & Judge, K. (2001). Income and health: The time dimension. Social Science and Medicine, 52, 1371–1390. Brylske, P., Sievart-Fernandez, A., Clark, H., & Clappsaddle, J. (2016). In the footsteps of Goldilocks: Searching for what is “just right” in global child life best practice. CLC’s 34th Annual Conference on Professional Issues, May. Canadian Institute of Child Health. (2002). The rights of the child in the health care system. Ottawa, ON: Canadian Institute of Child Health. Child Life Council. (2002). Official documents. Bethesda, MD: Author. Coleman, D. (Ed.). (1999). KAACCH’s mission statement. KACCHWORD, 2, 2. Desai, P. P., Torres Rivera, A., & Backes, E. (2016). Latino families coping with children’s chronic health conditions: An integrative review of literature. Journal of Pediatric Health Care, 30(2), 108–120. doi.org/10.1016/j.pedhc.2015.06.001 Desai, P. (2005). Child life outreach: Crossing North American borders. Child Life Council Bulletin, Spring, 7–9. Desai-Joshi, P. (2000). Medical missions: Role of a child life specialist. Presentation at the Eighteenth Annual Conference on Professional Issues. Child Life Council, Boston, MA.

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Devakumar, D., Birch, M., Rubenstein, L. S., Osrin, D., Sondorp, E. & Wells, J. C. K., (2015). Child health in Syria: Recognising the lasting effects of warfare on health. Conflict and Health, 9(1), [61]. doi: 10.1186/s13031-015-0061-6 El-Malla, H., Steineck G, Ylitalo Helm N, Wilderang, U., El Sayed Elborai, Y., Eishami, M., & Kreicbergs, U. (2017). Cancer disclosure: Account from a pediatric oncology ward in Egypt. Psycho-Oncology, 26(5): 679–685. https:/doi.org/10.1002/pon.4207 Fentiman, A., Hall, A., & Bundy, D (2001). Health and cultural factors associated with enrollment in basic education: A study in rural Ghana. Social Science and Medicine, 52, 429–439. Friedrich, M. J. (2016). Impact of Syrian conflict on its children. JAMA, 315(19), 2056. doi:10.1001/jama.2016.4906 Goodfriend, M. (1999). The importance of psychosocial paediatrics in the developing world. Tropical Doctor, 29, 90–93. Guy, K. (Ed.) (1997). Our promise to children. Ottawa: The Canadian Institute of Child Health. Hall, D., Johnson, S., & Middleton, J. (1990). Rehabilitation of head injured children. Archives of Disease in Childhood, 65, 553–556. Hochu, J. (2014). A different kind of student experience. Child Life Council Bulletin, Fall, 4. Heney, M., & LeBlanc, C. (2004). Humanizing health care for children in post war Sarajevo. Child Life Council Bulletin, Winter, 1–5 (Focus Section). Kaur, R. (2000). Towards a child life programme at the children’s hospital: A focus on nurses. Unpublished master’s thesis. Department of Human Development and Family Studies, M.S. University of Baroda, Vadodara, India. Kayes, M. (2000). Tonga treasures unique to New Zealand. Bulletin: Child Life Council, 18, 3, 10. Kayes, M. (2001). Te Whaariki in hospital settings: Supporting well-being of children and families. Paper presented to Children’s Issues Centre Conference, Dunedin, June 2001. London InterCommunity Health Centre. (1992). Culture, health and you. London, Ontario: London InterCommunity Health Centre. Mallya, I. P. (1986). Child in the hospital: A traumatic experience for parents and children. Social Welfare, 33(9). Mallya, I. P. (1989a). Child life programme, an innovative approach in health care setting: Issues and strategies for parent/family involvement (Report). Baroda, India: Department of Human Development & Family Studies, M.S. University of Baroda. Mallya, I. P. (1989b). Towards a viable child life programme in a hospital setting (Final report submitted to Indian Council of Social Sciences Research). Baroda, India: Department of Human Development & Family Studies, M.S. University of Baroda, Baroda, India. McCall, D., & Iltis, A. S. (2014). Health care voluntourism: Addressing ethical concerns of undergraduate student participation in global health volunteer work. HEC Forum, 26, 285–297.

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McLennan, S. (2014). Medical voluntourism in Honduras: “Helping the poor?” Progress in Development Studies, 14(2), 163–179. McGinnis, K. (2016). Innovative global child life strategies needed to improve access to psychosocial care for children and families in developing countries. Child Life Council Bulletin, Summer, 15–16. Miller, T. (2000). Health of children in war zones: Gaza child health study. Hamilton: McMaster University Printing Services. Mills, A. C., Wong-Anuchit, C., & Poogpan, J. (2017). A concept analysis of Thumjai: A Thai coping strategy. Pacific Rim International Journal of Nursing Research, 21(3), 234–243. Mishra, U. (2017). Examining the knowledge, perception and behavior of nurses towards the children in hospital settings (Unpublished master’s thesis). Department of Human Development and Family Studies, M.S. University of Baroda, Vadodara, India. Moatz, A. (2016). Increasing access to mobile technology solutions for child life professionals and the world: Child life at the United Nations. Child Life Council Bulletin, Summer, 30–31. Moltman, M., Giardina-Auten, P., & Lang, G. (2000). International nuts and bolts: Child life in a global community. Presentation at the Eighteenth Annual Conference on Professional Issues, Child Life Council, Boston, MA. Montgomery, A. K. (2012). The power of play: A Peace Corps perspective. Child Life Council Bulletin, Winter: 8. Navarro, V., & Shi, L. (2001). The political context of social inequalities and health. Social Science and Medicine, 52, 481–491. Pattussi, M. P., Marcenes, W., Croucher, R., & Sheiham, A. (2001). Social deprivation, income inequality, social cohesion and dental caries in Brazilian school children. Social Science & Medicine, 53, 915–925. Piko, B., & Fitzpatrick, K. M. (2001). Does class matter? SES and psychosocial health among Hungarian adolescents. Social Science and Medicine, 53, 817–830. Pletsch, M. (2017) Child life in a refugee camp: When two worlds collide. Child Life Council Bulletin, Spring. Pottinger, A. M., & Ehikhametalor, O. (2000). Children’s responses to hospitalization at the University Hospital of the West Indies. West Indian Medical Journal, 49, 47–51. Ramritu, P. L., & Croft, G. (1999). Needs of parents of the child hospitalized with acquired brain damage. International Journal of Nursing Studies, 36, 209–216. Reynolds, D. (2014). CLC hosts international summit on pediatric psychosocial services. Child Life Council Bulletin, Fall, 1–6. Rosales, R., & Calvo, R. (2017). “Si Dios Quiere”: Fatalismo and use of mental health services among Latinos with a history of depression. Social Work in Health Care, 56(8), 748–764. Rungreangkulkij, S., & Chesla, C. (2001). Smooth a heart with water: Thai mothers care for a child with schizophrenia. Archives of Psychiatric Nursing, 15, 120–127. Seagull, E. A. W. (1978). The rights of the child as a medical patient. Journal of Clinical Child Psychology, Fall: 202–205.

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Sievert-Fernandez, A. (2016). Child life in the Philippines: From service provider to capacity builder. Child Life Council Bulletin, Spring. Soritau, L. A., Alb, L., Csaki, S., Cozariz, M., Barna, D. S., & Achim, M. (2016). Collaboration for a culture of change. Child Life Council Bulletin, Summer. Southall, D. P., Burr, S., Smith, R. D., Bull, D. N., Radford, A., Williams, A., & Nicholson, S. (2000). The child-friendly healthcare initiative (CFHI): Healthcare provision in accordance with the UN convention on the rights of the child. Pediatrics, 106, 1054–1064. Staton, D. (2013, December). Resources for integrating global health into your career. Comprehensive Global Health Elective Preparation. UNICEF. (2000). State of the world’s children 2000. New York: Author. UNICEF. (2001a). Progress since the world summit for children: A statistical review. New York: Author. UNICEF. (2001b). We the children: Meeting the promises of the world summit for children. New York: Author. UNICEF—Child survival. (2015). Retrieved from http://data.unicef.org/child-mortality/under-five.html United Nations General Assembly. (1989). Convention on the rights of the child. New York: United Nations. United Nations Population Fund. (2015). UNFPA: The state of world population 2015. New York: United Nations. Wagner, S., & Conway, J. (2016). Cultural Humility | UCLA Center for World Health. Retrieved from http://worldhealth.med.ucla.edu/index.php/global-ops/travelresources/general-travel-information/cultural-competence-and-culture-shock/ World Health Organization. (1948). Definition of health. Geneva, Switzerland: World Health Organization. (Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States [Official Records of the World Health Organization, no. 2, p. 100] and entered into force on 7 April 1948.) World Health Organization. (2002). Investment for health: A discussion of the role of economic and social determinants. Copenhagen: WHO Regional Office for Europe. World Bank. (2012). World development report 2012: Gender Equality and Development. New York: Oxford University Press. Yeh, C. (2001). Adaptation in children with cancer: Research with Roy’s Model. Nursing Science Quarterly, 14, 141–148. You, D., Hung, L., Ejdemyr, S., & Beise, J. Levels & trends in child mortality report 2015: Estimates developed by the UN Inter-agency Group for Child Mortality Estimation. (September, 2015). New York: United Nations Children’s Fund. Retrieved from http://www.childmortality.org/files Younge, D., Moreau, P., Ezzat, A., & Gray, A. (1997). Communicating with cancer patients in Saudi Arabia. Annals: New York Academy of Science, 809, 309-316. Zelikovsky, N. (1996). Parental participation during the induction stage of children’s anesthetic procedures in Israel. Seminars in Perioperative Nursing, 5, 213–217.

INDEX A AAP (see American Academy of Pediatrics) Abuse/assault (see Trauma, non-accidental) ACCH (see Association for the Care of Children’s Health) ACLP (see Association of Child Life Professionals) Accommodation, 38 Action for Sick Children, 582, 587 Administration (see Programs) Affordable Care Act (ACA), 165 Agency for Healthcare Research and Quality (AHRQ), 174 Allness errors, 143 Ambulatory care “cohorting,” 496 issues ambulatory care, 513–515 emergency department, 505–512 future, 505 literature review, 66–68, 72, 77, 87–88, 493–494 outpatient services, 495–500, 503–504 staffing, 500–503, surgery, 28, 67, 366, 379, 494, 515, 522, 591 tools and techniques, 35, 516–520 trauma, non-accidental, 504 waiting rooms, 35, 67, 79, 129, 324, 369, 371–372, 496, 498–499, 505–506, 513 see also Emergency department American Academy of Pediatrics (AAP), 17, 20, 27, 30, 166–167, 319, 407, 413, 530

Americans with Disabilities Act (ADA), 533, 542 Angela’s Ashes (McCourt, 1996), 6 Antibiotics, use of, 8, 164, 582 Appearance, physical, 145–146, 287, 393, 402, 476 Aries, Phillipe, 3–4, 13 Assessment ambulatory care, 513–514 benefits of, 210 chronic illness, 461, 472, 479 critical care, 407 emergency department, 171, 493, 503, 505–506, 511–512 information gathering, 196–198 models Stress Potential Assessment Process, 50, 198–199 see also Child Life Assessment Intervention Plan, and Psychosocial Risk Assessment Plan patient- and family-centered care, 171– 173, 175, 180, 184, 187, 424–425 tools, formal, 209–210 variables assessed age, 203 culture and language, 204 developmental vulnerability, 203 healthcare response, 201–202 mobility, 204 past experiences, 205 social and family status, 204 support system, 204–205 temperament and coping style, 205 see also Documentation, Pain assessment

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Assimilation, 241 Association for the Care of Children’s Health (ACCH), 18–22, 25, 27, 30, 66, 164, 277, 550 Association for Childhood Education International (ACEI), 239 Association for the Education of Children with Special Needs (AECMN), 530 Association for the Well-Being of Hospitalized Children and Their Families, 19 Association of Child Life Professionals (ACLP; see also Child Life Council, CLC), 23, 26–27, 29, 51, 56–57, 59– 61, 115, 121, 126–127, 184, 186, 188, 199, 211, 271, 320–321, 325–328, 331–332, 335, 346–347, 375, 377, 530, 550, 554, 561–562, 582–583, 587, 590, 595–596, 600 Attachment theory, 13–14, 42–43, 51, 590 B Bakwin, Harry, 7–11 Barker, Larry, 155–156 Belson, Peg, 587, 606 Bereavement (see Grieving) Bolig, Rosemary, 126–127, 319 Boundaries, professional (see Relationships) Bowlby, John, 7, 13–14, 423 Brazelton, T. Berry, 19 Brigance Inventory of Early Development III, 209 Bronfenbrenner, Urie, 48–50 C Camps, 340, 347, 451, 475, 498, 515 Canadian Council on Health Services Accreditation (CCHSA), 321, 334, 336 CCLS (see Certified Child Life Specialist) Center for Medicare and Medicaid Services (CMS), 336–337 Certification, in child life, 23, 25–26, 121, 126, 188, 323, 326, 328, 331, 347, 561, 591

Certified Child Life Specialist (CCLS), 25– 26, 63, 318, 323–324, 326–328, 497, 561–562, 593, 595 see also Staffing Chapin, H. D., 8, 10 Child Advocacy International (CAI), 582 Child and Adolescent Service System Program, 165 Child-Friendly Healthcare Initiative (CFHI), 582 Child Life Assessment Intervention Plan (CLAIP), 198, 200–202, 205, 209 Child Life Certifying Committee, 25–26, 562 Child Life Council (CLC, see also Association of Child Life Professional; ACLP) 21–24, 28–29, 56, 104, 319, 325–327, 550, 554–555, 592 Conference on Professional Issues, 130 history, 21–23 mission, vision and values, 29, 104, 318, 320–321, 592 Official Documents, 23, 104, 554–555, 592 Child Life Month, 327, 387 Child Life movement (see History) Child Life Position Statement, 21–22 Child Life Practice advocacy, 34, 63, 284, 286, 319, 321, 364, 372–373, 433–434, 495, 508, 523, 573–574, 593–594 collaboration, interdisciplinary, 51, 178, 188, 206, 281–282, 320, 331, 336, 414, 433–435, 437–438, 481, 498, 500–502, 541, 565, 580, 588, 594– 595 consults, 68, 208, 214–216, 367, 370, 389–390, 494, 553 discharge planning, 63, 167, 215, 492, 528–529, 536–538, 540, 547–548 goals of, 15–16 transition services, 207, 398, 464–465, 476–477, 479–480, 522, 528, 532– 533, 535, 537–538, 547–548 Child Life Specialist (CLS) (see also Staffing) academic preparation, 23–26, 56, 62, 188–189, 326, 331, 347–349, 554, 563, 583

Index certification, 23, 25–26, 121, 126, 188, 323, 326, 328, 331, 347, 561, 591 salaries, 64, 327–328, 338, 356, 358–360, 375, 388, 565 Children’s Health Care (journal), 19 Children’s Health Insurance Program (CHIP), 165 Children’s Health Fund, 530 Children’s Hospital (Boston), 530 Children’s Memorial Hospital (Chicago), 11, 17 Cincinnati Children’s Hospital, 170, 199, 323 CLAIP (see Child Life Assessment Intervention Plan) CLC (see Child Life Council) Cleveland Metropolitan Hospital (Ohio), 14, 17–18 Clothing, 145–147, 599–600, 602 CMS (see Center for Medicare and Medicaid Services) Cognitive functioning, 534–535, 540, 547, 579 theories, 35 information processing, 37–41 Piagetian, 12–13, 37–39, 41, 234–241, 274 Vygotskian, 41, 241–242, 258 Comfort aspects interpersonal, 252–255 intrapersonal, 251–252 positioning for, 43, 207, 304, 414, 517, 589 see also Play Communication complexity of, 138–141 context, 140–141 process, 138–139 symbolic, 141 transaction, 139–140 cross-cultural, 185–187, 600–601 dying child, 402–404, 406–408 and patient- and family-centered care, 168, 170, 393 and grieving, 432–433 journals, 137–138 listening, 155–157

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misconceptions, 155–157 nonverbal, 145–155 appearance, physical, 146 clothing, 146–147 facial expression, 147–148 gaze, 148–149 gesture, 149–151 space, 153–155 touch, 151–152 voice, 152–153 and relationships, therapeutic, 121 verbal, 142–145 allness errors, 143–144 confusion 142 fact inference, 142 word-thing, 144 jargon, 144–145 Compassion fatigue (see Stress) Coping behaviors, 74–75, 90, 256, 276–277, 292, 296, 301, 398 definition, 46, 73–75, 272–273 evaluation, post-procedural, 309–312 family strengths and vulnerabilities, 287– 288 illness, chronic, 449–451, 468–470 kits, 47, 362, 398, 517 and painful procedures, 303–309 planning and facilitating, 301–312 selecting and rehearsing, 82–83, 303– 309 with preparation, 292–301 information, providing, 292–294 language, attention to, 295–296 styles, naturally occurring, 75, 302 strategies, 74–75, 82–84, 185, 207, 273, 301–308, 450, 462, 578 see also Preparation, psychological; Stress Countertransference, 124–125 see also Transference Critical care (see End-of-life care) Crossing the Quality Chasm (2001), 167 Csikszentmihalyi, Mihaly, 240, 246–249 Culture (see also Diversity) Awareness/sensitivity, 41, 43, 48, 49–50, 71, 79, 86, 150–155, 161–163, 176–178, 184–191

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Darwin, Charles, 147–148 Developmental psychology (see Psychology, developmental) Disaster preparedness, 503–504 Diversity assessment, 204, 210 cultural competence, 185–189 and end-of-life care, 414–415 and family-centered care, 185–189 and grieving, 429–430 and international work, 498–499, 600– 602 Documentation benefits to child/family, 212 healthcare team, 212 profession, 213 specialist, 212–213 electronic, 182, 212–214, 330, 356, 377, 520 hospital standards, 213–215 outpatient services, 520–521 workload measurement, 216 see also Assessment Dolls and puppets and psychological preparation, 296–297, 301 real equipment vs. facsimiles, 300 use of, 156, 206, 215, 238, 242, 249, 398, 604 Dougy Center (Portland, OR), 440 Dreyer, Benard, 30 E EBP (see Evidence-based practice) Educating the Chronically Ill Child (Kleinberg, 1982), 528 Education of child life specialists, 24–25, 51, 56, 60–62, 126, 332 and hospitalized children, 341, 528–529, 537–538, 561–564 international professional, 594–597 student exchange, 595–596

law, 164–166, 531–534 plan, individualized (IEP), 532–534 school re-entry, 207, 341, 476–478, 535– 537, 539–540 and special needs, 529–531 see also Illness, chronic; Special needs Education for All Handicapped Children Act (1976), 164, 531 Emergency department assessment and prioritization, 494, 507, 510–512 literature review, 66–68, 87–88, 493– 494, specific issues, 505–512 staffing, proportion of child life, 494, 500–503 see also Ambulatory care End-of-life care culturally sensitive, 414–415 dying child, 400–401 adolescent, 402–404 guidelines, 403–404 stresses, 394–399 supporting, 401–404 palliative care, 413–414 and parents decision making, 406–408 stresses, 392–394 supporting, 404–406 and siblings stresses, 399–400 supporting, 408–412 Erikson, Erik, 12–13, 43–44, 119, 240, 243, 288 European Association for Children in Hospitals (EACH), 583 Evidence-based practice (EBP), 25, 27, 56– 60, 62, 66, 89, 91, 271, 280, 318–319, 374, 389, 483 F Facial expression, 139, 145, 147–148, 150, 208, 432 Fact inference confusion, 137, 142 Families (see Parents and families) Families of Children with Disabilities Act (1994), 165

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Index Family-centered care (see Patient- and Family-Centered Care) Family Preservation and Family Support Act (1993), 165 Flow, play as, 232, 240, 246–250 and healthy self, 249–250 characteristics, 246–248 and practice, 248–249 see also Play Foundations, charitable, 341–343, 436, 560 Freud Anna, 243 Sigmund, 3, 113, 118, 124, 243 Froebel, Fredrich, 241 G Gaze, 145, 148–149, 470 Gender roles, 178, 187–188, 234, 238, 298, 415, 602 Germ theory, 8 Gesell, Arnold, 119 Gesture, 139, 145, 149–151 Global perspective children of the world, 575–583 children’s rights evolution of, 580–583 universal, 579–580 education, maternal, 577 health status current, 575–576 definition, 576–579 international work, 592–598 preparation, 598–605 mortality rates (U5MR), 575, 600 “Goodness of fit,” 45, 48 Grieving bereavement systems, 435–438 cultural and religious influences, 429– 430 rituals and mourning, 430 peer grief, facilitating, 439 supplies, 438 support family, 435–437 groups, 440–441 staff, 437–438, 483 competency development, 430–434 advocacy and collaboration, 433

communication, 432–433 facilitation group, 433–434 play, 431–432 self-reflection, 434 training, implications for, 434 as family process, 421–422 parental, 422–423 siblings, 408, 423–426 guidelines, 426 “survivor guilt,” 442 tasks of, 426–429 tripartite model, 424–425 Groos, Karl, 230, 232 Guidelines for the Development of Child Life Programs, 22, 360 see also Program Review Guidelines H Hall Edward T., 153–154 G. Stanley, 232 Hawaii Early Learning Profile (HELP), 209 Healthy People (2000 & 2010), 166 Hirt, Muriel, 24, 587, 606 History childhood, 3–7 healthcare, 7–14 developing roles, 28 hospitalization, 4–7 pediatrics, 7–8 Vision to Action, 28–30 “hospitalism,” 8–10 movement (child life), 14–18 academic programs, 23–25 credentialing, 25–26 environments, 17–18 of name (child life), 16 patient- and family-centered care, 163– 167 relationships, therapeutic, 111–114 Hope and chronic illness, 460–461, 471 and fantasy play, 257–260 importance of, 119, 256, 290, 505, 576 as play element, 255 and resilience, 256–258 see also Coping; Play

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“Hospitalism,” 8–9, 12 Hospitalization, children’s response, 14, 70– 73 I ICU (see Intensive care unit) IDEA (see Individuals with Disabilities Education Act) IEP (see Individualized education plan) Illness, chronic adaptation, facilitating, 461–473 adherence, 472–473 coping, 467–470 education, developmentally appropriate, 463–464 goal-setting and action plans, 471 play, 466–467 preparation, 277–278, 464–466 problem-solving, 470–471 self-expression, 461–463 adjustment, 47, 479–479 over time, 479–480 psychosocial evaluation, 457 collaboration, interdisciplinary, 481 developmental tasks, 456–461 autonomy/independence, 459 body image, 460 competency, 458–459 identity, 459 mastery, 458 peer relationships, 460 literature review, 448–451 normalcy and self, 478 and parents, 85, 407, 416–417, 478 prevalence of, 466, 527, 529 professional considerations, 481–483 support systems, 473–478 camps, 475–476 family, 473 school re-entry, 476–478 social interaction, 474–475 support groups, 474 see also Rehabilitation; Special needs Individual family service plans (IFSP), 532, 548 Individualized education plan (IEP), 164, 531–534, 540, 544, 546, 548 see also Education

Individuals with Disabilities Education Act (IDEA, 1990), 165, 531, 533, 544, 548 Industrial Revolution, 4 Infant (term), 13 Information processing theory, 37–39, 41 Institute for Patient- and Family-Centered Care, 162, 166, 583 Intensive care unit (ICU), 28, 49, 61, 65, 77, 87, 171, 269, 287, 299, 382, 392, 393, 420 neonatal (NICU), 49, 51, 61–62, 64, 324, 400, 414, 416, 420, 435 pediatric (PICU), 28, 87, 181, 393–395, 405, 412, 414 International Critical Incident Stress Foundation (ICISF), 523 Internet and international practice, 573, 582, 604 Interns (see Staffing) IWK Health Centre (Halifax, Nova Scotia), 200–201 documentation (examples), 222–224 J Jacobi, Abraham, 7 Jargon, 137, 142, 144–145, 208, 295, 601 The Joint Commission (TJC; see also Joint Commission on the Accreditation of Healthcare Organizations, JCAHO), 126, 163, 183, 185, 188, 321, 330, 334, 336–337 Joint Commission on the Accreditation of Healthcare Organizations ( JCAHO; see also The Joint Commission, TJC), 27, 184 K The Kissing Hand (Penn, 1993), 251 Klein, Melanie, 243 Korzybski, Alfred, 143 Kuwait, 583, 587, 590–591, 598–599 L Lancy, David, 4–5 Language and assessment, 204

617

Index barriers, 185, 463, 470, 603 and psychological preparation, 274, 295– 296, 464–465 Lazarus, Richard, 46, 74, 271–273, 408 Legislation, 164–165, 528, 531–534 Listening, 137, 142–143, 149–150, 155–157, 239, 244, 403, 405, 416, 432, 538 misconceptions, 155–157 see also Communication The Little Prince (Saint-Exupery, 1982), 253– 254 Locke, John, 232 M Management (see Programs) McCourt, Frank, 6 Medical missions, 597, 600 Medicare/Medicaid, 164–165, 336–337 Mobility, issues, 201, 204, 325, 536, 545– 546 Modeling (see also Social Learning Theory), 45, 81–82, 275, 299, 396, 465, 468, 471, 474–475, 584 Montagu, Ashley, 151 Montessori, Maria, 230–231, 241 Montessori Method, 241 N National Association of Children’s Hospitals and Related Institutions (NACHRI), 530 Networking family-to-family support, 421, 436, 442, 460, 584 professional, 23, 36, 91, 190, 351, 383, 389, 548, 587, 591, 595 “New morbidity,” 28 New Zealand, 589–590, 605 Newborn Individualized Developmental Care and Assessment Program (NIDCAP), 173 NICU (see Intensive care unit) Nongovernmental organizations (NGOs), 174, 590–592 Non-traditional and community roles child life fundamentals, 554–556

clinical practice standards, 558–560 preparation for, 561–564 professional responsibilities, 556–557 O Official Documents of the Child Life Council, 23, 104, 554–555, 592 One-person programs administrative responsibilities, 373–378 advocacy within, 372–373 funding, 356–361 needs assessment, 352–356 program expansion, 388–390 skills needed, 348–349 Outpatient services (see Ambulatory care) P Pain assessment, 69, 151, 172, 383, 470, 503– 504, 522, 539 management, 6, 15, 35, 47, 55, 62, 69, 79, 90, 144, 172, 175, 205–207, 304–309, 331, 348, 401, 403–404, 413, 450, 459, 468–470, 480, 495, 500, 508–509, 517–519, 582, 584, 594 Palliative Care/Hospice, 28, 49, 89, 382, 401, 413–414, 433, 435, 437, 442, 497, 552, 562, 591 Parents and families assessment, 204 end-of-life care decision making, 406–408 stresses, 392–394 supporting, 404–406 grieving, 422–423 and healthcare, 20 preparation, psychological, 81–84, 169, 275–276 presence and participation, 85–89 anesthesia induction, 86–87 intrusive procedures, 87–88, 170–171 see also Family-centered care; Patientand family-centered care Parten, Mildred, 234–236 Patient-centered Outcomes Research Institute (PCORI), 174

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Patient- and family-centered care (PFCC, see also Family-centered care) benefits of, 167–175 healthcare providers, 171–172 healthcare systems, 174–175 institutions, 172–174 patients and families, 169–171 child life role, 175–176, 183, 378, 393, 493, 595 core principles, 162 and culturally competent care, 184–190, 204 definition, 162–163 elements, 176–183 dignity and respect, 176–178 information sharing, 178–180 participation, 180–182 collaboration, 182–183 history of, 163–167 Pediatrics, history of, 7–8 PHBQ (see Post-Hospital Behavior Questionnaire) Philippines, 590, 593, 596 Phoenix Children’s Hospital (Arizona), 26– 27, 38, 66 Photographs and video closed-circuit television, 340, 516 and psychological preparation, 35, 45, 82–83, 156, 207, 275, 296, 298– 299, 398, 400, 465, 509, 511, 514– 515, 517, 519 video communication, 49, 400–401, 476 video games, 36–37, 240, 342, 396 Piaget, Jean, 12–13, 241 Piagetian theory, 37–41, 234–238, 241 PICU (see Intensive care unit) Plank, Emma, 14–18, 43, 528, 550 Play adaptive, 466–467 areas or spaces, 17, 36–37, 76, 254–255, 333, 341, 371–372, 400 alternatives, 467 characteristics of, 230–233 developmentally appropriate, 39, 339, 396, 414, 495 effectiveness of, 41, 43, 45–47, 66–69, 74–75, 76–80, 82–84, 90 expanded paradigms, 246–260

as comfort, 250–55 as flow, 246–250 as hope, 255–260 family activities, 467 fantasy, 230–231, 238, 257–260 foundations of, 230–245 as development, 233–241 as enjoyment, 232–233 as learning, 241–242 as therapy, 62, 78, 242–245 and grieving, 431–432 as healing modality, 29, 34–35 and illness, chronic, 466–467 materials and toys, 207, 237, 244, 371, 376, 499, 516–518, 604 medical, 40, 62, 69, 77–78, 156, 206, 297, 341, 395, 432, 440, 465, 511, 604 programs and healthcare, 10–12 as intervention, 244, post-procedural, 207, 270, 278, 291, 309–311 post-traumatic, 466 relationships during, 254–255 stages of, 38–39, 234–241 stimulation, 467 symbolic, 237–239 Post-Hospital Behavior Questionnaire (PHBQ), 70–73 Post-traumatic stress disorder (PTSD), 72– 73, 89, 279, 449, 452–453, 466 see also Stress PRAP (see Psychosocial Risk Assessment in Pediatrics) Preparation, psychological components, 273–278 facilitating coping behaviors, 276–277 providing information, 274–275 providing models, 275 stress-point preparation, 66, 83, 90, 277–278 coping, planned, 292 language, attention to, 295–296 providing information, 292–294 critical care, 397–398 effectiveness of, 80–84 evaluation, post-procedural, 278, 309– 312

619

Index and experienced patients, 277–278 illness, chronic, 464–466 initiating, 280–281 assessment situation, 284–287 variables, individual, 287–290 focus of care, determining, 290–292 information, gathering, 283–284 team members, involving, 281–283 overview, 269–270 parents, collaborating with, 275–276 preadmission tours, 67, 84, 341, 355, 364, 515 stress-coping framework, 270–273 overwhelming stress, 278–280 timing, 271 tools that facilitate, 296–301 see also Coping Privacy issues, 234, 387, 459, 511, 560, 582, 601 Procedural support, 67–69, 207–208, 362, 370–372, 414, 508, 511, 515, 585–586 Professionals (see Staffing) Program Review Guidelines, 26, 335 Programs, child life accountability, 161, 186, 215, 317, 330– 331, 335–336 evaluation, 333–335 institutional standards, 335–337 assessment, for consistency, 183–184 development of, 339–343 external programing, 341–343 internal programming, 340–341 patient experience, 343 policies, 321–322 special events, 339–340 family resource center, 340, 436, 538 finance and budget, 337–339 budget, allocation of, 338–339, 361– 363, 375–376 funding, sources of, 337–338, 356– 361 fundamentals, 320–325 mission, vision and values, 320–321 operating guidelines, 321–322 staffing, 322–325 grant-writing, 337–338, 357–360, 375, 563, 568–569

management benchmarking, 377 materials, 376–377 organizational structure, 320 staffing essentials clinical advancement, 328–329 orientation and training, 329–333 recruitment and hiring, 325–326 supervision, 333–335 “universal worker,” 500–502, 521 wish-granting organizations, 341 see also Child Life Practice Psychology, developmental, 12–14 Psychosocial programs, international current programs, 587–592 Kuwait, 590–591 New Zealand, 589–590 Philippines, 590 Qatar, 597 United Kingdom (UK), 588–589 promoting, international efforts, 587–592 universal nature, 584–586 Psychosocial Risk Assessment in Pediatrics (PRAP), 198–200, 214, 323 PTSD (see Post-traumatic stress disorder) Puppets (see Dolls and puppets) Q Qatar, 593, 597 R Ranchos Los Amigos Cognitive Scale, 465 Reach Out and Read, 342 Rehabilitation (see Illness, chronic) Rehabilitation Act (1973), 533, 542 Relationships boundaries, professional, 108, 115, 121– 124, 145, 176, 327, 332, 373, 382, 384–386, 434, 437, 482, 523, 553, 558, 561, 565 clinical/non-clinical, 109, 131, 133 communication skills, 121 countertransference, 124–125 developing, 131–133 during play, 254–255 foundations, theoretical, 118–119

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phases, 116–118 professional, 108–109, 127, 130–132 supportive, 106–113, 117, 127–133 therapeutic, 106, 110 concepts, 114–125 definition, 104–105 history, 111–114 transference, 124–125 trust, 119–120 types, 114–116 and typology, 127–131 Religion (see Diversity; Spirituality) Research efficacy of child life clinical work, 26–27, 66– 70, 493 of interventions used by child life, 76–89 parent presence and participation, 85–89 play, 76–80 preparation, psychological, 80–84, 270–271 hospitalization and healthcare children’s responses, 70–73 stress-coping responses, 73–76 methodological problems, 90–91 professional issues of child life specialists, 61–66 development of profession, 61 education, 62–63 emotional impact of work, 64–65 international, 596 perceptions, 63–64 Robertson, James and Joyce, 13–14 Rogers, Carl, 113, 118 Romania, 583, 596 Rousseau, Jean-Jacques, 232 S Scaffolding, 41 Siblings (see also Parents and families; Patient- and family-centered care) and chronic illness, 452–453, 467, 473 of dying child, 408–412, 415, 421–422 in emergency department, 509–510 grief, 423–426, 427–429, 433

responses, 77, 399–400 support of, 49, 61, 69, 175–176, 180, 205–206, 208, 335, 340–343 Smith, Anne, 11–12 Social learning theory (see also Modeling), 45–46, 51 Space (personal), 140, 145, 153–155, 188, 254, 601 Special needs assessment, 200, 203, 209, 470 case studies, 541–547 development, 238 educational service gaps, 529–531 legislation, 531–534 medical care, 166 modifying services, 467 socialization and school, 539–541 tips for specialists, 548 see also Education; Illness, chronic Spirituality, 161, 184–185, 188–190, 306, 578 see also Diversity; Patient- and familycentered care Spitz, Rene, 8–9, 11–12 Staffing advancement, clinical, 328–329 burnout, 64–66, 89, 168, 373, 382–386, 437, 482–483 CCLS credential, 25–26, 323–324, 326, 497, 561–562, 593 models, 322–325 outpatient services, 494–496, 500–503 professionals challenges, 481–483 identity, 326–328, 465 membership, 23, 596 role of, 28, 35, 46, 51, 63, 117, 175– 176, 245, 270, 281, 319, 326, 372, 384, 397, 403, 408, 468, 522–524, 534–539, 557, 568– 569, 603–605 supervision, 318–320 training and development, 329–335 hiring and recruitment, 325–326 interns, 331–332 orientation, 329–330 volunteers, 332–333 “universal worker,” 500–502, 521

621

Index The Standards for Academic and Clinical Preparation Programs in Child Life, 23– 24, 554 Stanford, Gene, 22, 24–25 Stress burnout, 64–66, 89, 168, 373, 382–386, 437, 482–483 compassion fatigue, 65–66, 89, 373, 382– 384 and coping theories, 38, 46–47, 73–76, 270–273, 277, 279, 302–304, 408– 409 emotional labor, 65 end-of-life care, 392–400 for parents, 392–394 for siblings, 399–400 overwhelming, 245, 278–282 post-traumatic stress disorder (PTSD), 72–73, 89, 279, 449, 452–453, 466 preparation, psychological, 270–273 “stress-point,” 83, 277–278 stress-coping responses, 73–76 stress potential assessment process, 50, 198–199 stressors, situational, 284–286 see also Coping Supervision (see Staffing; Programs) Support systems assessment of, 204–205 end-of-life care, 401–412 grieving, 435–441 illness, chronic, 457, 473–478 psychosocial services, international, 584– 586 Sutton-Smith, Brian, 242 Systems theories ecological, 48–50 family systems, 47–49, 51, 195 T Technology, use of, 36, 47, 84, 89, 206, 501, 509, 512, 532–533, 544, 573, 593 Temperament, 44–45, 48, 63, 86, 90, 197, 200–201, 205, 207, 287–288 Theoretical foundations attachment theory, 13–14, 42–43, 51 cognitive theories, 37–41, 241

development, psychosocial, 12–13, 43– 44, 114, 119 social learning theory, 45–46 stress and coping theories, 46–47, 74, 271–275, 278–280 systems theories, 47–51 temperament theory, 44–45, 48 Therapy animal-assisted, 333, 340, 498 hypnotherapy, 112, 307, 519 play paradigms, 242–245 relationships, therapeutic, 104–135 tools, therapeutic, 516–520 TJC (see The Joint Commission) “T.L.C.” (tender loving care), 9 Touch, as communication, 145, 151–152, 187–188, 405, 411, 415, 426, 465, 467, 601 Transference, 124–125 see also Countertransference Trauma, non-accidental, 503–504 Trust and therapeutic relationships, 119– 120 A Two-Year-Old Goes to the Hospital (Robertson, 1953), 14 Typology of child life, 114, 125–127 and relationships, 127–129 U U5MR (see Global perspective) United Kingdom (UK), 86, 582, 587–589 United Nations’ Convention on the Rights of the Child (UN-CRC), 579–582, 590 United Nations’ Declaration of Human Rights, 5 Universal rights of children, 574, 579 see also Global perspective V Video (see Photographs and video) Vision to Action, 28 Voice, 152–153, 432 Volunteers (see also Staffing) historical role, 6, 10–12, 15, 17, 21

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international, 588, 594, 595, 596–598, 602–603 “voluntourism,” 602–603 use of, 36, 205, 214, 317, 332–333, 340– 343, 355–356, 367–371, 374, 387, 397, 440–441, 495, 498–500, 505, 554, 562 Vygotsky, Leo, 41, 241, 258 Vygotskian theory, 41, 241–242, 258 W Winnicott, D. W., 10, 16

Wolfer, John, 27 Word-thing confusion, 142, 144 Working with Children in Hospitals (1962), 14 Workload measurement (WLM), 216 see also Documentation World Health Organization (WHO), 576 Z “Zone of Helpfulness,” 123 Zone of proximal development (ZPD), 41, 242