Long-Term Recovery from Substance Use: European Perspectives 9781447358190

Table of contents :
Front Cover
Title
Copyright information
Dedication
Table of contents
List of figures and tables
Notes on contributors
Acknowledgments
Preface
Part I Critical explorations of long-term recovery
1 Recovery as long term: an introduction
Longer-term recovery
Stories of long-term recovery
Setting the scene
Note
2 Is measuring long-term recovery desirable, necessary or even possible?
Introduction
Different approaches to researching recovery
Calling for more participant-led approaches
Beyond cause and effect
Conclusion
Notes
References
3 Telling recovery stories: an exploration of the relationship between policy, practice and lived experience
Introduction
Recovery as policy storyline
The lived experience of long-term recovery
Conclusion
References
4 Change processes in long-term recovery for individuals with present and former substance-use dependence
Introduction
The nature and extent of substance use in Norway
Norwegian government policy and services for substance use
What is long-term recovery for substance-use dependence?
Research on substance-use recovery processes
The Norwegian Stayer study
Change processes in neurocognitive functions and important life aspects
Studies on full clinical and social recovery
Implications for development of treatment services and future research
Conclusion
References
5 Provider and user perspectives on long-term recovery in England: how do we know when we are done?
Introduction
Context
How is long-term recovery experienced? Insights from clinical case examples
Case Example 1: Timothy
The person
The start of his recovery
Life in long-term recovery
Case Example 2: Rachel
The person
The start of her recovery
Life in long-term recovery
Clinical reflections
Discussion
Limitations
Conclusion
Notes
References
Part II Intimate relationships, trauma and long-term recovery
6 Women’s and men’s stories about sex and intimate relationships in long-term recovery from problematic drug use
Introduction
The study: data and analytic framework
Sexual practice during drug use
Sexuality after leaving problematic drug use
Treatment and sexuality
Conclusion
References
7 Multiple recoveries: substance use and trauma
Introduction
Case introduction
Laura’s pen portrait
Knowing trauma: personal coping strategies and agency
Safety first
Social support
Professional support
Implications for practice and policy
Conclusion
Note
Acknowledgements
References
8 Being a partner in long-term recovery: stories from female partners in Norway
Introduction
Long-term recovery and couples
Methods
Data analysis
Findings
“It was impossible not to be totally taken in by him”: a story about love
“I had to stick with it”: a story about commitment
“What’s the matter with him really?”: a story about underlying vulnerability
“I don’t want to make our lives sound so special”: a story about normalisation
Discussion
Conclusion
References
9 Long-term recovery for the ‘adult children’ of parents who use alcohol in Iceland
Introduction
The Icelandic context: research, policy and practice
The family
Recovery
Examining the experiences of adult children through a recovery-focussed lens
Recovery frameworks
Recovery capital
Personal recovery capital
Social and familial recovery capital
Community recovery capital
Long-term recovery and identity
Long-term recovery and the family
Discussion
‘Finding’ recovery: a hidden path?
Recovery-oriented support systems
Conclusion
References
Part III Diversity across the lifespan in long-term recovery
10 Social and structural issues in recovery among migrants and ethnic minorities: an exploration of cultural competence and individual recovery perspectives
Introduction
Cultural competence: what’s the problem represented to be?
The nature and origin of the concept
Underlying reasons for applying cultural competence and derivatives
Questioning cultural competence
Are culture and cultural competence sufficient as means to reduce inequalities?
The universalist stance: aren’t we all the same?
What about evidence-based practice?
Issues left unquestioned in theorising cultural competence
Recovery capital: voices of migrants and ethnic minorities
Personal capital: coping, belonging, identity and beliefs
Social capital: support of family, role models and others
Community capital: treatment, cultural and spiritual values, activities and traditions
Discussing the importance of structural and social resources
Theory: the social over the cultural in research
Practice: the social in supporting stable and long-term recovery
Conclusion
References
11 Transitions in long-term recovery: mapping adolescent development theory to better understand identity change in recovery
Introduction
The care-leaver study
Adults in long-term recovery study
Identity development theory
Findings
Passive/staying safe
Transitional/exploring
Agentic/self-determination
Recovery reflection
Discussion
References
12 Care, continuity and change in long-term recovery: the experiences of older opioid users in long-term recovery in three German regions
Introduction
Older opioid users in long-term recovery in Germany
Mental health, physical health and well-being
Long-term substitution treatment of older opioid users
Project background and methods
Case management with older opioid users: progress, quality and impact
Case management with older opioid users: experiences from the qualitative study
Implications for supporting older opioid users in long-term recovery
Conclusion
References
13 When long-term recovery isn’t an option: people at the end of life
Introduction
Introducing the study
The long-term social care needs of people using substances: how could these inform ideas about recovery?
Vignette 1: Bev (57 years old)
What opportunities are there to generate ‘voluntariness’?
Vignette 2: Barbara (55 years old)
What do we mean by ‘sustained control’?
Vignette 3: Rob (42 years old)
Is the ability to maximise ‘health and well-being’ a necessary condition for long-term recovery?
Vignette 4: Trevor (61 years old)
Do recovery debates give sufficient recognition to the need to rebuild personal relationships?
Vignette 5: Paul (67 years old)
Can the stigma of substance use be overcome to build a new identity?
Discussion: How does the end of life challenge ideas about recovery?
An alternative conceptualisation of recovery
What can substance-use policy and practice learn from palliative/end-of-life care?
Conclusion
References
14 Conclusion: Critical reflections, theories and key messages
Looking back and looking forward
Recovery as long term
An ecological model for long-term recovery
Chronosystem (major life transitions and changes over time)
Macrosystem (political and cultural influences)
Exosystem (indirect influences on the individual; for example, the neighbourhood, mass media)
Mesosystem (interactions between the individual’s microsystems)
Microsystem (direct contact with a person; for example siblings, parents, peers, employers)
With, for, about: addressing the complexities of the recovery knowledge base
Key messages
Messages for practice
Messages for research
Conclusion
References
Index
Back Cover

Citation preview

LONG-​TERM RECOVERY FROM SUBSTANCE USE European Perspectives Edited by Sarah Galvani, Alastair Roy and Amanda Clayson

First published in Great Britain in 2022 by   Policy Press, an imprint of Bristol University Press University of Bristol 1–​9 Old Park Hill Bristol BS2 8BB UK t: +44 (0)117 954 5940 e: bup-​[email protected]   Details of international sales and distribution partners are available at policy.bristoluniversitypress.co.uk   © Bristol University Press 2022   British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library   ISBN 978-1-4473-5816-9 hardcover ISBN 978-1-4473-5817-6 paperback ISBN 978-1-4473-5818-3 ePub ISBN 978-1-4473-5819-0 ePdf   The right of Sarah Galvani, Alastair Roy and Amanda Clayson to be identified as editors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.   All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the prior permission of Bristol University Press.   Every reasonable effort has been made to obtain permission to reproduce copyrighted material. If, however, anyone knows of an oversight, please contact the publisher.   The statements and opinions contained within this publication are solely those of the editors and contributors and not of the University of Bristol or Bristol University Press. The University of Bristol and Bristol University Press disclaim responsibility for any injury to persons or property resulting from any material published in this publication.   Bristol University Press and Policy Press work to counter discrimination on grounds of gender, race, disability, age and sexuality.   Cover designer: Robin Hawes Image credit: iStock/StudioM1 Bristol University Press and Policy Press use environmentally responsible print partners. Printed and bound in Great Britain by CMP, Poole

For my friend, Catherine Harrison Le Marquand (S.G.). For my mum Irene, and all those with me on a recovery path, wherever it may lead (A.C.). For Dr Julian Buchanan (A.R.). Julian was an important figure in the development of harm-​reduction practice in Liverpool in the 1980s and has been a harm-​reduction academic and activist ever since. Julian supervised Alastair’s undergraduate dissertation about cannabis in 1999 and has been his mentor and friend for more than 20 years, always being available to provide sound advice and a listening ear, including on this project.

Contents List of figures and tables Notes on contributors Acknowledgements Preface

vii viii xiii xiv

PART I  Critical explorations of long-​term recovery 1 Recovery as long term: an introduction Alastair Roy, Sarah Galvani and Amanda Clayson 2 Is measuring long-​term recovery desirable, necessary or even possible? Wulf Livingston 3 Telling recovery stories: an exploration of the relationship between policy, practice and lived experience Alastair Roy and Jennifer Christensen 4 Change processes in long-​term recovery for individuals with present and former substance-​use dependence Thomas Solgaard Svendsen 5 Provider and user perspectives on long-​term recovery in England: how do we know when we are done? Maike Klein and John Hill PART II  Intimate relationships, trauma and long-​term recovery 6 Women’s and men’s stories about sex and intimate relationships in long-​term recovery from problematic drug use Anette Skårner and Bengt Svensson 7 Multiple recoveries: substance use and trauma Sarah Fox and Karin Berg 8 Being a partner in long-​term recovery: stories from female partners in Norway Sari Lindeman and Lillian Bruland Selseng 9 Long-​term recovery for the ‘adult children’ of parents who use alcohol in Iceland Jóna Ólafsdóttir and Amanda Clayson PART III  Diversity across the lifespan in long-​term recovery 10 Social and structural issues in recovery among migrants and ethnic minorities: an exploration of cultural competence and individual recovery perspectives Charlotte De Kock and Aline Pouille

v

1 3 15

28

40

53

65 67

80 93

108

125 127

Long-​Term Recovery from Substance Use

11

12

13 14

Transitions in long-​term recovery: mapping adolescent development theory to better understand identity change in recovery Lucy Webb, Amanda Clayson and Nigel Cox Care, continuity and change in long-​term recovery: the experiences of older opioid users in long-​term recovery in three German regions Ines Arendt When long-​term recovery isn’t an option: people at the end of life Sam Wright and Gemma Yarwood Conclusion: Critical reflections, theories and key messages Sarah Galvani, Alastair Roy and Amanda Clayson

Index

143

157

170 183

198

vi

List of figures and tables Figures 5.1 10.1 11.1

14.1

Framework for the recovery-​informed approach Ecosocial perspective Framework adapted from Côté’s (2002) individualisation hypothesis and Schwartz et al’s (2005) agency-​identity model incorporating Marcia’s four statuses of identity formation An ecological model of long-​term recovery

61 129 146

Examples of recovery capital by type Case-​management model progress and quality of implementation during the study

113 163

189

Tables 9.1 12.1

vii

Notes on contributors Ines Arendt is External Lecturer at the University of Applied Sciences, Koblenz and Scientific Officer at the Federal Centre for Health Education, Cologne. Ines is a social worker, case manager and social scientist, and is currently affiliated with an international PhD programme at the Free University of Bolzano, Italy where she is working on her PhD project about the support of older opioid users. Karin Berg is Lecturer in Social Work at the University of Gothenburg, Sweden. Karin’s main research interests are peer support and social networks in relation to both domestic violence and substance use. Her PhD thesis, ‘Online Support and Domestic Violence –​Negotiating Discourses, Emotions, and Actions’ (2015), explored online support by and for women who were currently experiencing domestic violence or were in the recovery process. Lillian Bruland Selseng is Associate Professor at the Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Norway. Lillian is also a social worker and family therapist. Her professional background is in social work practice, primarily related to supporting people with drug problems. Her major research interests include narrative and discursive methodology, meaning-​making of problematic substance use, user involvement and drug death–​related bereavement. Jen Christensen was Substance Use Research Associate on a three-year knowledge transfer partnership between the University of Central Lancashire and Change Grow Live. Her work focused on ethnographic observations of practice, mobile methods and photography to explore the lived experiences of recovery in East Lancashire. She now works as a finance and fraud analyst for the British Government. Amanda Clayson is Founder of VoiceBox Inc, United Kingdom. Amanda has a personal investment in recovery-​based research. She is exploring her own ‘recovery journey’ (alcohol and eating disorders) and working closely with others to explore theirs. She is a trained teacher, registered general nurse and a learning disability nurse. She is the founder of VoiceBox Inc, an organisation grounded firmly in community networks, explicitly aimed at enhancing the influence and impact of lived experience across community, practice and policy arenas. Her work harnesses the power of digital and creative media as vehicles for connection, capturing and communication of authentic voices. She is a long-​term Community Research Partner with Manchester Metropolitan University. viii

Notes on contributors

Nigel Cox is Senior Lecturer in the Faculty of Health, Psychology and Social Care at Manchester Metropolitan University, UK. Nigel is a sociologist and registered healthcare practitioner. His research examines the relationship between people and institutions by way of ethnography and co-​productive methods. As principal investigator, he recently led two projects supporting the UK National Lottery Community Fund’s Ageing Better portfolio, and he is currently co-​investigator to a multi-​site evaluation of a third-​sector social care provider. Internationally, he is collaborating with colleagues in the UK and Uganda to develop a co-​produced, community-​based well-​being project. His recent publications address mutual aid and community-​based support, seldom-​heard communities, global mental health, disability and policy. Charlotte De Kock is a member of the Faculty of Law and Criminology at Ghent University, Belgium. Charlotte has been studying migrant and ethnic minority inclusion and health in Belgium for the past decade. Her policy-​oriented work and doctoral research focus is on equitable substance-​ use treatment for these populations. With various research partners she has formulated national policy recommendations in this field, commissioned by the Belgian Science Policy Office. Charlotte collaborates as External Adviser with the European Monitoring Centre for Drugs and Drugs Addiction on the migration–​substance-​use nexus. Sarah Fox is Research Associate in the Substance Use and Associated Behaviours Research Group at Manchester Metropolitan University, UK. Her work primarily focusses on drug and alcohol use among women. She is a feminist researcher with a particular interest in narrative and creative methods as a way to communicate women’s voices. Sarah has professional experience within social care, and personal experience of paternal substance use. Sarah Galvani is Professor of Substance Use and Social Research at Manchester Metropolitan University, UK. Sarah is a social worker by profession, having started out working as a volunteer in the UK and USA with homeless people with mental ill health and/​or people who use alcohol or other drugs. She qualified in social work in 1996 and remains a registered social worker. Sarah has personal experiences of loss relating to substance use. As an academic, she currently leads work on end-​of-​life and palliative care for people using substances. Sarah founded the Special Interest Group in Substance Use at the European Social Work Research Association Annual Conference in Edinburgh, Scotland, in 2018. The membership of the group devised and developed this text and are key contributors to it. John Hill is Director of the Reason Drug and Alcohol Charity, Bath, UK. John has over 19 years of clinical work experience in supporting people ix

Long-​Term Recovery from Substance Use

with substance-​misuse issues. In 2011, he founded Reason, an independent charity which offers counselling and psychoeducation services to individuals with drug and alcohol–​misuse issues. John is trained in a range of therapeutic methods to an advanced level, including motivational interviewing, the five-​step method and brief solution–​focussed therapy. He is also an assessor for practitioners who use the five-​step method. Maike Klein is a post-​g raduate research student within the Addiction and Mental Health Group, University of Bath, UK. Maike is a PhD student at the University of Bath where she researches lived experiences of relapse and recovery from substance misuse. She is also a trained internal family systems therapist and works at an independent charity in England, providing therapeutic support for people with addiction and substance-​misuse issues. Sari Lindeman is Assistant Professor in the Department of Welfare and Participation at the Western Norway University of Applied Sciences. Sari has 20 years of experience providing family and couples therapy and substance-​use services. She is currently a doctorate student at the Tavistock and Portman NHS clinic in London as well as a clinical social worker and a family therapist. She is the academic coordinator for family therapy education in Bergen. In addition to systemic family therapy, Sari has qualifications in counselling pedagogies, narrative therapy, mentalisation-​based therapies, couples therapy and complex trauma disorders. Wulf Livingston is a registered social worker and Reader in Social Sciences at Glyndwr University, UK. His practice, research and teaching activities encompass alcohol, drugs, knowledge frameworks, mental health, involvement, policy and recovery. His formative drink and drug–​taking experiences accompanied him through bar and kitchen work before settling into framing his post-​qualifying voluntary and criminal justice sector practice, and now inspire his approach to research. Wulf likes to recuperate in the mountains, with a particular passion for fell running, spending time in the kitchen (cooking and eating), and in his motorhome by the beach. Jóna Ólafsdóttir is Assistant Professor at the Faculty of Social Work at the University of Iceland. Jóna’s research and teaching focusses on substance-​use disorders and addiction within families. She teaches in a classroom setting and supervises practice for students in social work. For the last twenty years Jóna has been working in the field of addiction both with people experiencing addiction as well as their family members. In 2007 she started her private practice providing clinical counselling for individuals with addiction and their families.

x

Notes on contributors

Aline Pouille is a member of the Faculty of Psychology and Educational Sciences at Ghent University, Belgium During her studies and her own life trajectory Aline gained interest in recovery from mental illness and problem substance use. After her international internship, which sparked her interest in migrant and ethnic minority populations, she started PhD research into recovery from problem substance use among persons with a migrant background and ethnic minorities. Through the experiences of the people themselves, as well as a masterclass in recovery, she continues to broaden her understanding of recovery in relation to society. Alastair Roy is Professor of Social Research and Co-​Director of the Psychosocial Research Unit, University of Central Lancashire, UK. Alastair has a professional background in youth and community work and residential social work. Alastair is an inter-​disciplinary researcher who has undertaken research across the fields of social welfare, health and the cultural sector, writing widely about substance use, mental health and homelessness. Anette Skårner is Associate Professor of Social Work at the University of Gothenburg, Sweden. Anette’s research ambition is to highlight the role of social relationships for people on their way into and out of drug use. Some of the themes focussed on in her work are social networks and social support, treatment and clientship, sexuality and intimate relationships, affected family members and young people and drugs. Anette also has previous professional experience from social work in the field of drug treatment. Thomas Solgaard Svendsen is Researcher at the Center for Alcohol and Drug Research, Stavanger University Hospital, Stavanger, Norway. He researches and writes about human, long-​term change processes when individuals seek to reduce or stop using substances. Thomas is engaged with developing effective ways of disseminating knowledge about substance-​use themes, best practice in follow-​up services and substance-​use treatments. Bengt Svensson is Professor of Social Work at Malmö University, Sweden. After many years as a social worker, Bengt switched to research, wrote a book and a PhD thesis about the everyday lives of people using amphetamine or heroin. That ethnographic study started his interest in drug use and sexuality. After that he conducted fieldwork about coercive treatment, resulting in three books written about the use of heroin and other opioids and also about drug policy. Lucy Webb is Associate Professor in the Faculty of Health, Psychology and Social Care at Manchester Metropolitan University, UK. Lucy is a registered mental health nurse and member of the British Psychological Society. She xi

Long-​Term Recovery from Substance Use

has many years’ clinical experience in both child and adolescent psychiatry and substance use, working as a nurse specialist in a therapeutic community, and as senior nurse in charge of the drug and alcohol liaison team at St. George’s Hospital in London. She specialises in researching substance misuse and co-​productive approaches with seldom-​heard and socially excluded communities. She leads the International Substance Use Network within the Collaborating Centre for Values-​Based Practice at St. Catherine’s College, Oxford. She is active in exploring longer-​term recovery from substance use and the role of mutual aid in supporting community action. Sam Wright is Senior Research Associate at Manchester Metropolitan University, UK. Sam has been researching substance use since 1995 –​ undertaking a range of work evaluating interventions to treat or prevent harms associated with alcohol and other drug use. It was only when her dad’s death put a spotlight on his alcohol use that she began to realise the overlap between her personal and professional lives. In 2016 she joined Sarah Galvani’s team to research end-​of-​life care for people using substances, focussing primarily on developing compassionate care and support for people using substances and their families. Gemma Yarwood is Senior Lecturer in Criminology and Sociology at the Manchester Metropolitan University, UK. Gemma is an experienced lecturer and interdisciplinary qualitative researcher studying social care, health, and social justice across the life course. A key focus of Gemma’s current research is on end-​of-​life care and substance use. She has a particular interest in families, carers and substance use. She has written many publications, including journal articles, website content, book chapters, reports for various organisations, local authorities and national charities.

xii

Acknowledgements We would like to thank the remarkable group of authors who hit every deadline they were given –​a joy to work with. We would also like to thank Sarah Bird at Policy Press for welcoming our proposal for this text and to her colleagues Isobel Bainton and Emma Cook for their advice and support during its development. At the core of this book is empirical research funded by a range of international grants for which we are collectively grateful. Underpinning this empirical work is a shared belief in improving the lived experience of people using substances, their families, friends and formal or informal carers, not just explaining or describing it. We thank the people who allowed us, and continue to allow us, into their lives and to recount their experiences with the aim of improving policy and practice.

xiii

Preface The idea for this book developed as part of a conversation between members of a Special Interest Group (SIG) in Substance Use formed under the umbrella of the European Social Work Research Association (ESWRA). At ESWRA’s annual international conference in Belgium in 2019, a group of people working in substance-​use research within social work and social care contexts met to discuss our work and share learning. What was apparent was that many of us were conducting longitudinal research or research that raised questions about the longer-​term impact of the use of substances, particularly in relation to people’s experiences and their receipt of services. The discussion unearthed a number of key strands in our shared interest about recovery. These strands reflect the complexity and disagreement in debates about issues including the meaning or definition of recovery, its value as the focus of substance-​use policy and practice as well as the extent to which recovery stories and recovery discourse seem capable of capturing and articulating the ways in which structural and systemic issues affect people’s experiences in recovery. However, one rich and complex vein of these discussions focussed on the temporality of people’s lives in recovery and the question of whether a long-​term view of recovery involving different groups of people and experiences might offer a useful way of adding to existing knowledge. Collating and curating this new research in a book seemed a natural next step. The editing team comprises three people: Amanda Clayson is a person with lived experience of her own use of substances. She founded and runs a community-​voice organisation, VoiceBox Inc., in addition to having a professional background across health and social care. Her work with VoiceBox Inc. seeks to privilege the views and experiences of people who are marginalised or seldom heard. Alastair Roy and Sarah Galvani both come from backgrounds in social work practice and sociology, and both work with people using substances. They have their own lived experiences of losing friends and family as a result of their substance use, and are committed to substance-​use policy and practice improvement through applied research. The editors’ different styles and approaches to writing and thinking created a fruitful editing process. It also challenged us to view things in a way that as single editors we would have failed to appreciate. As a result, each chapter has effectively had three peer reviewers, and for many authors this has resulted in more drafts than they would perhaps have expected. They have met this with good grace and a willingness to get it right. We hope this edited collection is better for it.

xiv

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Preface

In developing the content, we needed to step outside of the SIG membership to ensure that we could generate a broad collection capable of providing a rich and varied set of accounts of the subject. This has resulted in a rich array of expertise, from those who are well established in the field of substance use to those who are at an early stage in their research careers or who are located firmly in practice. The European scope of this text brings with it cultural differences in concepts, terminology and expression. Each author has provided a summary of the cultural context within which they are researching and writing. Where relevant, this includes different histories of welfare provision, policy and substance-​use treatment. One of the early decisions to make involved the extent to which we prescribed a theoretical underpinning for the text and whether we would insist the authors adopt a particular language of substance use. Given the authors come from a number of countries and cultures, and this is an European text, we felt that such prescription was inappropriate and overly restrictive. Substance use remains a relatively marginalised area in social work and social care research and practice, so an approach which embraced geographic and cultural differences enabled this volume of work to emerge. However, the result is that, for example, some people use the language of ‘substance-​use disorder’ –​adopting what is perceived as medical-​model language in the UK –​while others refer to ‘substance misuse’, ‘problematic substance use’ or simply ‘people using substances’. The research within these chapters has adopted a range of methodologies; there are data drawn from longitudinal mixed-​methods studies as well as chapters focussed on single qualitative case studies and those whose original thinking has been placed in the context of literature-​based research. At times, the content can be powerful and emotional, reflecting the rawness of the lived experience of some people in long-​term recovery. The authors have adopted different ‘voices’ in writing up their work for this book. Different academic and practice disciplines have different traditions in their style of writing. While the use of the first person, (‘I’ or ‘we’) is common in social care research, the third person (‘the researcher’) is preferred by some authors. Again, we have not imposed an overall style on contributors, and hope this adds to the variety and interest the text offers. In less than a year this book has taken shape. It has been a pleasure to work with this group of authors and our thanks go out to them for making this edited collection a delight to be involved in.

xv

PART I

Critical explorations of long-​term recovery

This first part of the book comprises five chapters and informs Parts II and III by offering a series of critical explorations of long-​term recovery which engage the subject through the lenses of policy, practice, lived experience and research. Chapter 1 provides a brief overview of the history of recovery as a concept and our focus on long-​term recovery as an extension of it. It sets the scene for the book by introducing some of the challenges faced by people trying to define recovery and long-​term recovery in recent decades, before introducing the structure and content of the rest of the book. Chapter 2 provides a critical engagement with the evidence base for recovery. It explores recent shifts in methodological approaches to research on alcohol and other drug use, specifically considering moves towards the greater involvement of people with lived experience as active partners in research, as well as the use of theory driven approaches to programme and strategy evaluation. The chapter provides an examination of the epistemological and methodological issues involved in researching long-​term recovery at the levels of policy, practice and lived experience, as well as a much needed consideration of issues of epistemic (in)justice. Chapter 3 presents findings from a UK-​based, ESRC-​funded study, drawing on one transgender woman’s ongoing recovery struggles. It argues that exploring the links between the micro level of lived experience, the meso level of practice and the macro level of policy is important for developing and honing our understanding of the lived effects of the implementation of recovery policy. The chapter concludes by arguing that there are important tensions between the policy storyline about recovery and the everyday lives of people with substance-​use issues. Chapter 4 draws on findings from the Norwegian long-​term Stayer study to describe the diverse and sustained change processes that people in recovery must negotiate in order to develop meaning and purpose in their ongoing lives. The chapter clearly demonstrates the value of long-​term research on change processes in substance-​use recovery, making a series of practical suggestions for practice. Chapter 5 presents two real-​life examples of people with lived experience of long-​term recovery, offering clinical reflections based on practice experience in the UK, in order to critically examine some of the challenges to identifying and analysing long-​term 1

Long-​Term Recovery from Substance Use

recovery. It demonstrates the dynamic, non-​linear and complex trajectories involved in the journey towards long-​term recovery from using substances. It finishes by making recommendations for future research and proffering a way forward in practice that is more sensitive to the needs of people with substance-​use issues.

2

1

Recovery as long term: an introduction Alastair Roy, Sarah Galvani and Amanda Clayson

A great deal has been written in academic and popular forms about recovery from substance use. Far less has been written about long-​term recovery. This long-​term perspective is important in that it explicitly recognises and respects the long-​term nature of the struggles many people with substance-​ use issues take on in pursuing, defining and realising their own recovery. This is a theme that runs throughout this edited collection, and we will hear powerful testimonies that illustrate those struggles. In this opening chapter we begin by introducing the concept of recovery, briefly addressing the history of the use of the term in the sector as well as some of the key definitional issues and debates. We move on to discussing the idea of long-​ term recovery, introducing our ideas about why a durational or time-​based view of recovery might be both limiting for our understanding of recovery but also important for defending an ethic of care and valuing person-​ centred change. We explore the importance of the voices of those with lived experience, arguing that the value of many of the stories in this book is in how they link the particularities of people’s lived experience of recovery with the systems and structures in which people live. In this respect, the breadth of the people and places covered in the collection is a key strength.

Introducing the concept of recovery The use of alcohol or other drugs, hereafter ‘substances’, is documented throughout history. Gossop (2000, p 1) suggests ‘people have always used drugs to alter their states of consciousness’, and over the centuries, the joys and pitfalls of substance use have been explored and expressed in a range of forms including art, literature, social research and personal testimony. In a seminal text, Sadie Plant beautifully captures the complexities, ambiguities and ambivalences wrapped up in thinking about, researching and writing about substance use: To write on drugs is to plunge into a world where nothing is as simple or stable as it seems. Everything about it mutates as you try to hold its gaze. Facts and figures dance around each other; lines of enquiry scatter like expensive dust. The reasons for the laws, the motives for the 3

Long-​Term Recovery from Substance Use

wars, the nature of the pleasures and the trouble drugs can cause, the tangled web of chemicals, the plants, the brains, machines: ambiguity surrounds them all. (Plant, 1999, inside cover) In the first half of the 20th century, the concept of recovery from the pitfalls of substance use was popularised through the newly established network of Alcoholics Anonymous (AA) and its associated fellowship movement (Alcoholics Anonymous, nd). AA developed and popularised the 12-​step programme in which the journey of recovery consists of a series of definable steps which are accompanied by a sense of a spiritual journey (Roy and Manley, 2017). Although, theoretically, this is a journey which can have no end point or final destination –​because in the fellowships one is always a self-​identified ‘addict’ –​it is one measured in time travelled, in the public voicing of days since last use (Roy and Manley, 2017). In 1961, psychiatrist Carl Jung wrote a letter to AA’s co-​founder in which he set out two main ways in which people with serious alcohol addiction might recover. One was through ‘real religious insight’, the other was through ‘the protective wall of human community’, which included ‘personal and honest contact with friends’ (Alcoholics Anonymous, 1963 cited in Kelly et al, 2012, p 296). This perspective is useful because it helps frame the recovery issues affecting people using substances around human relationships as well as belief systems, steps or targets (Roy and Buchanan, 2016). Nonetheless, within the fellowships, recovery is considered synonymous with abstinence from the person’s substances of choice, and the goal is for people to regain control of the areas of their lives that have been damaged or lost through their use of substances. Despite the growth of the substance-​use field over the last 30 years, issues with alcohol and other drugs remain pervasive social problems across Europe (Singleton et al, 2006). In many countries, substance-​use treatment systems expanded in the 1980s and ’90s. For example, in the UK, the expansion of needle exchange schemes in the 1980s, under the guise of harm reduction, was followed by a significant reconfiguration, investment in and expansion of treatment in the criminal justice sector between 1997 and 2010 (Buchanan, 2010). These developments were supported by centralised, ring-​fenced funding overseen by the National Treatment Agency (NTA), and they led to an increase in the numbers of people accessing and retained in treatment services. However, towards the end of the 1990s a number of people began to express concerns about an expanding treatment population in substitute prescribing services and the number of people ‘parked’ (Dawson, 2012) in a self-​serving and complacent drug treatment system. In the intervening years the substance-​use field in Europe has become replete with references to and debates surrounding recovery (Laudet, 2008; Best et al, 2010; Wardle, 2012; Roy and Buchanan, 2016). What this history demonstrates is that the idea of recovery has a relatively recent history in the field of substance-​use treatment in Europe. The language 4

Recovery as long term

and many of the concepts have been adopted from the field of mental health, where recovery-​focussed policy and practice has a longer history and where debates are ongoing (Rose, 2014; Woods et al, 2019). On first appearance, a recovery-​oriented substance-​use treatment system seems eminently sensible. In the field of mental health, Davidson et al (2010, p 10) argue that many people outside the sector automatically assume that services are recovery focussed, asking, ‘If services are not focused on promoting recovery, what else might they be for?’ In a similar vein, some have broadly welcomed this move from harm reduction and crime reduction to recovery, arguing that recovery-​oriented drug and alcohol policies make perfect sense, not least because full recovery is what many people with drug and alcohol problems say they want for themselves. However, in both substance use and mental health, recovery continues to be heavily contested, both as a policy idea and as a philosophy (Roy and Buchanan, 2016; Rose, 2014). Hence, the mainstreaming of recovery into policy has constructed a discourse fraught with tensions from which many potential problems arise, and important questions persist about how recovery is constructed and interpreted by different groups (Roy, 2012). Interestingly, a series of similar debates concerning the meaning and ownership of recovery have occurred within mental health, where service-​user academic Peter Beresford (2013) has asked, ‘Can we make ideas [like recovery] mean what we want them to, when the dominant use of them is so powerful, regressive and negative?’ Similar concerns have been expressed in the field of substance use, where the recovery agenda first emerged through the activities of a small number of enthusiastic user-​recovery advocates, whose activities were intended to provide a distinct challenge to the prevailing top-​down treatment system at the time. Hence, the implementation of recovery into national policy raised important issues about the ownership of the term and the objectives of the policy. The issues were made more complex in the UK because the language of recovery was first introduced into policy in a prolonged period of austerity. In England, some have pointed out that the government’s notion of recovery might easily appear focussed upon cost cutting, abstinence and the responsibilisation of people with substance use issues rather than on rehabilitation, social reintegration and developing the pathway to full citizenship (Monaghan and Wincup, 2013; Roy, 2013; Watson, 2013). Roy and Buchanan (2016) argue that the political shift away from harm reduction and crime reduction seemed to create both opportunities and threats for the substance-​use sector. Opportunities arose from the move away from a ‘big brother model of commissioning’ (Wardle, 2012) in which local commissioners and providers were essentially expected to dance to the tune of the National Treatment Agency for Substance Use. However, threats appeared in the form of the removal of the treatment ring fence, and in the UK in the years since 2010, treatment spending has reduced significantly 5

Long-​Term Recovery from Substance Use

and has been accompanied by year-​on-​year increases in substance-​related deaths and non-​fatal overdoses since 2012. In this book we argue that the link to structural and systemic issues is important because it raises questions about the possibility of self-​ determination among people with lived experience. It asks whether these people can be recognised as experts, set the agenda and decide which kinds of recovery stories need to be aired and heard in understanding issues like recovery. In the field of mental health, the Recovering Our Voices Collective have argued that if we listen only for the lived experience of individuals, and only for processes of illness and recovery, we will miss many other vital storylines related to resistance, opposition, collective action and social change (Costa et al, 2012, p 96). As we see in the chapters in this book, the concept of recovery remains heavily contested, and the authors raise important questions about how recovery is constructed and interpreted by different stakeholders and interest groups (Roy and Buchanan, 2016). Nonetheless, the concept of recovery has proved to be an enduring one. Its origins in the substance-​use field date to the 18th and 19th centuries Native American religious and cultural groups (White, 2008), and it has since been used extensively in the field of mental health (Dale-​Perera, 2017), where it is has also been heavily contested and debated (Rose, 2014). The development and implementation of recovery in the field of substance use in recent years has done little to reduce the breadth of interpretations of it. Almost a century after its first use by Alcoholics Anonymous, some readings of recovery still seek to secure a direct link to abstinence, and opinions vary significantly on whether recovery and harm reduction are compatible goals of treatment and policy (McKeganey, 2012). Over the last 15 years the language of recovery has become a central part of substance-use policy and practice in many European countries. The adoption of recovery as an explicit goal of substance-​use policy and practice brought questions about the compatibility of recovery and harm reduction as policy goals to the fore. Further, it made decisions about the extent to which recovery should be seen as synonymous with abstinence, if at all. Monaghan and Wincup (2013) point out that in the UK’s 2010 drug policy, significantly entitled ‘Reducing Demand, Restricting Supply: Supporting People to Live a Drug Free Life’, the objective of increasing the number of people achieving ‘full recovery’ explicitly presented recovery as synonymous with abstinence. The 2017 Drug Strategy in the UK also promoted the need to increase ‘full recovery’, with a lack of attention to harm reduction outside the need to reduce drug-​related deaths. Terms such as ‘recovery capital’ have been developed and popularised (Granfield and Cloud, 2001) in the search for ways in which recovery might be conceptualised around the total volume of internal and external assets a person with severe alcohol or other drug problems might need in 6

Recovery as long term

order to initiate and sustain recovery. Tools and measures have also been developed which seek to capture, categorise and measure recovery capital against problem severity (see Best and Laudet, 2010, for review). What is clear is that the language and idea of recovery has been embraced by policy and practice and has become the defining language of substance-​use policy in many countries and national contexts; for example, in North America, Australia, New Zealand and many European countries. In early discussions among leading people in the sector in the UK about how a recovery-​oriented treatment policy might alter the emphasis of practice, there was a fear that a narrow and restrictive definition of recovery might be adopted by the government as part of a new policy move, particularly where substitute prescribing was considered discordant with recovery (UKDPC, 2008, p 2). These debates added to a potentially confusing picture for policymakers in relation to the development and commissioning of treatment services as it was unclear what characteristics made a service recovery orientated (UKDPC, 2008, p 8). White (2008, p 229), a leading figure in the field of recovery in the USA, reflects: ‘The process of defining recovery touches on some of the most controversial issues within the addictions field’, namely who decides who ‘has professional and cultural authority to define recovery’, as well as what the defining characteristics of recovery are, and when recovery starts and finishes. In an attempt to overcome the increasingly divisive and polarised debate about recovery, a consensus working group was established to explore the issue further under the wing of the UK Drug Policy Commission (UKDPC), an independent charity.1 Its task was to ‘reach a consensus on what constitutes “recovery” from problematic substance misuse’ (UKDPC, 2008, p 3). What emerged was consensus on ‘key features of recovery’ (subsequently referred to as the definition), as well as a vision statement: ‘The process of recovery from problematic substance use is characterised by voluntarily-​sustained control over substance use which maximises health and wellbeing and participation in the rights, roles and responsibilities of society’ (UKDPC, 2008, p 6). Additional key features included that recovery may be associated with many different types of formal and informal support because there is no ‘one size fits all’ and that ‘Recovery is about building a satisfying and meaningful life, as defined by the person themselves’ (UKDPC, 2008, pp 5–​6). As commentators have pointed out, the consensus group’s definition was perhaps more notable for what it excluded –​for example, an abstinence requirement –​than what it included (Drug and Alcohol Findings, 2016). A similar consensus process was undertaken in the USA by a group of people comprising the Recovery Science Research Collaborative (RSRC). Its definition of recovery was: ‘Recovery is an individualized, intentional, dynamic, and relational process involving sustained efforts to improve wellness’ (Ashford et al, 2019). Thus, some key commonalities begin to emerge: 7

Long-​Term Recovery from Substance Use

1. recovery is individually defined; 2. it focusses on the accrual of sustainable changes; 3. it maximises wellness or wellbeing; 4. it focusses on relationships; and 5. it is seen as process based rather than target oriented. The UKDPC consensus group reflects: For some people recovery is an on-​going process and they may always consider themselves ‘in recovery’ rather than recovered, while others may eventually feel that they are no longer at risk of relapse and are fully recovered. This diversity of experience lies behind much of the debate around recovery in the drugs field and poses a challenge to anyone seeking to define it. (UKDPC, 2008, p 5) However, this striving for a definition of recovery highlighted important tensions between the agendas of people’s lived experience on the one hand, and the desire by policy actors to nail down a definition of recovery that can be put to use in practice and measured against treatment targets on the other. Measuring the success of treatment investment is an understandable desire of policy, although perhaps not one that is grounded in lived experience (for more, see Livingston’s essay in Chapter 2 of this volume).

Longer-​term recovery The question of the duration of recovery is at the heart of this book; its focus is on long-​term recovery. However, if recovery can be considered a lifelong process, is any attempt to explore long-​term recovery unnecessary? Perhaps, as Neale et al (2015) suggest from their work with people using substances, the concept of ‘coping’ is one which feels more appropriate and realistic in durational terms, with participants criticising some notions of recovery as unrealistic or involving ‘super-​human’ expectations. Nevertheless, some commentators have sought to define recovery in terms of time passed and different phases or stages. Martinelli et al (2020) refer to ‘early’ (less than a year), ‘sustained’ (1–​5 years) and ‘stable recovery’ (more than five years), and this five-​year mark appears to have found traction since its inception by the Betty Ford Institute Consensus Panel in 2007. However, most commentators choose not to quantify the time frame, but rather they allude to the length of time needed for long-​term recovery. According to the Substance Abuse and Mental Health Services Administration/​Center for Substance Abuse Treatment (SAMHSA/​CSAT) (2010), substance use needs to be viewed like ‘other chronic health conditions … [that] typically require long-​term involvement with the health care system and parallel informal networks’. 8

Recovery as long term

These time-​or phase-​related models of recovery tend to assume naturally occurring transitions between one phase and the next characterised by different support needs, social networks and individual capabilities. However, Dennis et al (2005), in a USA-​based longitudinal study of 1271 people recruited from treatment programmes, found that the ‘median time from first to last use was 27 years’, while the ‘median time from first treatment episode to last use was 9 years’. They concluded that ‘models of longer term recovery management’ needed to be developed and evaluated. In this book, some authors have been very clear about their understanding of long-​term recovery and how they define it; others acknowledge it is a more nuanced and dynamic concept which lacks clear boundaries and eludes narrow definitions; and some retain a sense of ambivalence about it. Some of the chapters argue that the imposition of timelines for reductions in substance use and increases in sobriety or abstinence offer an inadequate way of understanding people’s lived experience of long-​term recovery. Indeed, some suggest that the tendency to categorise recovery in terms of what is measurable appears not to reflect the reality of living it. As editors, we have embraced this difference as it allows us to reflect on the complexities and nuances of the territory and the costs and benefits of different ways of mapping it. In the UK policy era defined by harm reduction –​circa 1985–​95 –​it was commonplace to hear people in policy and practice circles using the language of ‘chronic relapsing condition’ and reaching for Prochaska and DiClemente’s (1983) trans-​theoretical cycle of change as a means of understanding how people learn to change existing relationships to substance use. While we would not wish to idealise either the past or the language of chronic relapsing conditions, there is an implicit acceptance within this model that change in substance use can take time, patience, care and long-​term learning to address. We compare this to the most restrictive views of recovery, which can be read to imply that the end goal of policy and treatment practice is recovery, and that recovery means short-​term resolution, often read as abstinence. Our focus on recovery as a long-​term concern is rooted in a desire to advance models of understanding recovery which are rooted in person-​centred practice and which defend an ethic of care and support for people struggling with substance use. We argue that one important facet of such models is that they view people using substances holistically and enable enduring approaches to recovery support.

Stories of long-​term recovery Many of the authors in this book demonstrate a concern with listening carefully to the voices of people with lived experience who have collaborated in and supported their research. These voices convey the ways in which 9

Long-​Term Recovery from Substance Use

long-​term recovery must be understood from a range of perspectives and contexts, and that the experience of recovery is not a homogenous one. As editors of this collection, we want to celebrate the complexity, nuance and difference contained in these different voices, testimonies and articulations, which are both poignant and revealing. The stories told also express the ways in which different authors have their own investments in how recovery is seen and understood, and in some cases, these also speak to the preoccupations, practices and histories of substance use in different national contexts. However, there are also a number of uncomfortable truths about recovery stories. For example, in critical writing about mental health, Costa et al (2012) explore the ways in which personal stories have often been ‘harnessed by mental health organisations to further their interests’. The point being made is that the power of personal testimony can sometimes be co-​opted by organisations, and in the process, recovery stories are sometimes commodified and put to use for different purposes. The Recovering Our Voices collective argues that we need to complicate what we are listening for: to listen less for stories of healing and recovery and more for stories of resistance and opposition, collective action and social change (Costa et al, 2012, p 96). We feel that maintaining this link to structural and systemic issues holds open important questions about which kinds of stories need to be aired and heard in order to develop our understanding of long-​term recovery. Fox and Berg (Chapter 7 in this volume) give us an example of this complexity, and the story presented in that chapter elucidates the complex interactions between an individual, her experiences and wider systems of support. This is also important when we look at the work of Wright and Yarwood (Chapter 13 in this volume) on substance users at the end of life, for whom the forms of recovery promoted by survivorship discourse models are clearly unattainable. Even feeling human and accepted and able to be open about substance-​use histories in palliative care settings can feel like too much to risk. However, we also discover in the work of Roy and Christensen (Chapter 3 in this volume) that people who do not have life-​limiting conditions can still struggle for a meaningful sense of inclusion in long-​term recovery because our society is still intolerant of difference. Hence, the temporality of thwarted connection can be a long-​term issue for many people seeking recovery, some of whom feel they must continue to occupy a liminal position as they wrestle with issues which were difficult long before substance use ever became a problem. Despite these concerns, we also want to hold onto the power of stories. This is not only because many of the people whose stories are told within these chapters wanted their voices and experiences heard, hoping that they might support others and inform better practice, but also because a good story can often tease out the relationship between policy, practice and lived 10

Recovery as long term

experience (Froggett and Chamberlayne, 2004, p 56). Many of the people whose voices are heard in these chapters are not attempting to represent the experience of anyone other than themselves. However, what they offer is a stark illustration of the complexity, priorities and resilience of people attempting to make changes to their own substance use over a period of time, and/​or the negative experiences resulting from a family member’s substance use.

Setting the scene The authors contributing to this text are researching and writing in a range of international contexts. Many come from the special interest group (SIG) in substance use formed under the umbrella of the European Social Work Research Association. We share a commitment to long-​term recovery research embracing family and community influences, social networks, as well as the socio-​political context in which the individual exists. An explanation that considers this context in relation to how we support people and how people change will be discussed in our concluding chapter. The book presents material drawn from new research or new ideas about long-​term recovery based on original research and original thinking. It is set out in three parts: • Part I –​‘Critical explorations of long-​term recovery’ –​focusses on a selection of contributions that present questions around the policy, practice and lived experience of long-​term recovery as well as reflections on whether long-​term recovery can and should be ‘measured’ in some way. • Part II –​‘Intimate relationships, trauma and long-​term recovery’ –​brings together chapters that address some of the most difficult topics to discuss as a person in long-​term recovery, including the challenge of ‘recovering’ from someone else’s substance use as well as the negative impact a person’s own substance use can have on their relationships and sexuality. • Part III –​‘Diversity across the lifespan in long-​term recovery’ –​includes important contributions that consider how specific groups of people have additional needs that are often overlooked in homogenised discussions about long-​term recovery. We do not offer a solution or definitive answers to the questions about long-​term recovery or how it is conceived and experienced. Indeed, we raise further questions for policy, practice and research to consider. What this edited collection does offer is insights from both lived experience and academic analysis drawn from seven different nations based on empirical and practice-​based research. 11

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Note Of note, however, is the dominance of more medical professions in the consensus group and the lack of experts from social care and social work disciplines.

1

References Alcoholics Anonymous (nd) ‘Historical Data’, Alcoholics Anonymous, available online from: https://​www.alcoholics-​anonymous.org.uk/​About-​AA/​ Historical-​Data Ashford, R.D., Brown, A., Brown, T., Callis, J., Cleveland, H.H., Eisenhart, E., Groover, H., Hayes, N., Johnston, T., Kimball, T., Manteuffel, B., McDaniel, J., Montgomery, L., Phillips, S., Polacek, M., Statman, M. and Whitney, J. (2019) ‘Defining and operationalizing the phenomena of recovery: A working definition from the recovery science research collaborative’, Addiction Research and Theory, 27(3): 179–​88. Beresford, P. (2013) ‘Introductory comments’, Recovery and Social Justice: Transforming Mental Health at Individual, Service and Societal Levels, Preston, England, 9 October. Best, D. and Laudet, A.B. (2010) ‘The potential of recovery capital’, RSA Projects, 1 July, available online from: https://​www.thersa.org/​reports/​ the-​potential-​of-​recovery-​capital Best, D., Rome, A., Hanning, K.A., White, W.L., Gossop, M., Taylor, A. and Perkins, A. (2010) Research for Recovery: A Review of the Drugs Evidence Base, Edinburgh: Scottish Government Social Research. Betty Ford Institute Consensus Panel (2007) ‘What is recovery? A working definition from the Betty Ford Institute’, Journal of Substance Abuse Treatment, 33(3): 221–​8. Buchanan, J. (2010) ‘Drug policy under New Labour, 1997–​2010: Prolonging the war on drugs’, Probation Journal Special Edition, 57(3): 250–​62. Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D. and Church, K. (2012) ‘Recovering our stories: A small act of resistance’, Studies in Social Justice, 6(1): 85–​101. Dale-​Perera, A. (2017) Recovery, Reintegration, Abstinence, Harm Reduction: The Role of Different Goals within Drug Treatment in the European Context, Lisbon: European Monitoring Centre for Drugs and Drug Addiction, available online from: https://w ​ ww.emcdda.europa.eu/d​ ocument-l​ ibrary/​ recovery-​reintegration-​abstinence-​harm-​reduction-​role-​different-​goals-​ within-​drug-​treatment-​european-​context_​en Davidson, L., Rakfeldt, J. and Strauss, J. (2010) The Roots of the Recovery Movement in Psychiatry: Lessons Learned, London: Wiley-​Blackwell. Dawson, P. (2012) ‘Why the methadone doesn’t work’, The Guardian, 10 January. Dennis, M.L., Scott, C.K., Funk, R., and Foss, M.A. (2005) ‘The duration and correlates of addiction and treatment careers’, Journal of Substance Abuse Treatment, 28(2): S51–​S62, doi:10.1016/​j.jsat.2004.10.013 12

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Drug and Alcohol Findings (2016) ‘ “Recovery”: Meaning and implications for treatment’, findings.org.uk Froggett, L. and Chambelayne, P. (2004) ‘Narratives of social enterprise from biography to practice and policy critique’, Qualitative Social Work, 3(1): 61–​77. Gossop, M. (2000) Living with Drugs (5th edn), Aldershot: Arena-​Ashgate. Granfield, R. and Cloud, W. (2001) ‘Social context and “natural recovery”: The role of social capital in the resolution of drug-​associated problems’, Substance Use and Misuse, 36: 1543–​70. Kelly, J.F., Hoeppner, B, Stout, R.L. and Pagano, M. (2012) ‘Determining the. relative importance of the mechanisms of behavior change within alcoholics anonymous: A multiple mediator analysis’, Addiction, 107: 289–​99. Laudet, A.B. (2008) ‘The road to recovery: Where are we going and how do we get there? Empirically driven conclusions and future directions for service development and research’, Substance Use Misuse, 43: 12–​13. Martinelli, T.F., Nagelhout, G.E., Bellaert, L., Best, D., Vanderplasschen, W. and van de Mheen, D. (2020) ‘Comparing three stages of addiction recovery: Long-​term recovery and its relation to housing problems, crime, occupation situation, and substance use’, Drugs: Education, Prevention and Policy, 27(5): 387–​96, doi:10.1080/​09687637.2020.1779182 McKeganey, N. (2012) ‘Harm reduction at the crossroads and the rediscovery of drug user abstinence’, Drugs: Education, Prevention and Policy, 19(4): 276–​ 83, doi:10.3109/​09687637.2012.671867 Monaghan, M. and Wincup, E. (2013) ‘Work and the journey to recovery: Exploring the implications of welfare reform for methadone maintenance clients’, International Journal of Drug Policy, 24(6): e81–​e86. Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T. and Strang, J. (2015) ‘ “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery’, Drugs: Education, Prevention and Policy, 22(1): 26–​34. Plant, S. (1999) Writing on Drugs, London: Faber and Faber. Prochaska, J. and DiClemente, C. (1983) ‘Stages and processes of self-​change of smoking: Toward an integrative model of change’, Journal of Consulting and Clinical Psychology, 51(3): 390–​5. Rose, D. (2014) ‘The mainstreaming of recovery’, Journal of Mental Health, 23(5): 217–​18. Roy, A. (2012) ‘Avoiding the involvement overdose: Drugs, race, ethnicity and participatory research practice’, Critical Social Policy, 32(4): 636–​54. Roy, A. (2013) ‘Looking beneath the surface of recovery: Analysing the emergence of recovery oriented treatment policies’, in G. Potter, M. Wouters and J. Fountain (eds), Change and Continuity: Researching evolving drug landscapes in Europe, Lengerich: Pabst, pp 76–86.

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Roy, A. and Buchanan, J. (2016) ‘The paradoxes of recovery policy: Exploring the impact of austerity and responsibilisation for the citizenship claims of people with drug problems’, Social Policy and Administration, 50: 398–​413. Roy, A. and Manley, J. (2017) ‘Recovery and movement: Allegory and “journey” as a means of exploring recovery from substance misuse’, Journal of Social Work Practice, 31(2): 191–​204. Singleton, N., Murray, R. and Tinsley, L. (2006) Measuring Different Aspects of Problem Drug Use: Methodological Developments (2nd edn), London: Home Office. Substance Abuse and Mental Health Services Administration/​Center for Substance Abuse Treatment (SAMHSA/​CSAT) (2010) Recovery Oriented Systems of Care (ROSC) Resource Guide, Rockville: SAMHSA/​CSAT, available online from: https://​www.samhsa.gov/​sites/​default/​files/​rosc_​ resource_​guide_​book.pdf UKDPC (2008) The UK Drug Policy Commission Recovery Consensus Group: A Vision of Recovery, London: UKDPC. Wardle, I. (2012) ‘Five years of recovery: December 2005 to December 2010: From challenge to orthodoxy’, Drugs: Education, Prevention and Policy, 19(4): 294–​8. Watson, J. (2013) ‘The good, the bad and the vague: Assessing emerging Conservative drug policy’, Critical Social Policy, 33(2): 285–​304. White, W.L. (2007) ‘Addiction recover y: Its def inition and conceptual boundaries’, Journal of Substance Abuse Treatment, 33: 229–​41. White, W.L. (2008) ‘Recovery: Old wine, flavor of the month or new organizing paradigm?’, Substance Use and Misuse, 43: 1–​14. Woods, A., Hart, A., and Spandler, H. (2019) ‘The recovery narrative: Politics and possibilities of a genre’, Culture, Medicine and Psychiatry, doi:10.1007/​ s11013-​019-​09623-​y

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2

Is measuring long-​term recovery desirable, necessary or even possible? Wulf Livingston

Introduction In everyday contexts, recovery is often thought of as something highly personal, involving changes in aspects of an individual’s life not restricted to immediate behavioural or psychological presentations. In research on alcohol and other drug use, recovery has been framed in a range of ways, from studies that examine narrowly defined treatment outcomes to those which explore broader changes in lifestyle and social circumstance. This already complex picture is further complicated by questions about how recovery should be understood and/​or evaluated at the level of policy, practice and lived experience, and whether the main concern of research studies should be evidencing causation, correlation, attribution or contribution. Given the vastness of such possibilities, this chapter critically examines whether measuring long-​term recovery is possible or even desirable? It draws on the author’s research and writing, with particular regard to recent shifts in methodological approaches to research on alcohol and other drug use. Specifically it considers moves towards greater inclusivity of people with lived experience as active partners in research, as well as the use of theory-​ driven approaches to programme and strategy evaluation. These applied considerations are interwound with key messages and other examples taken from a broad range of literature.

Establishing the starting points Recovery-​orientated alcohol and drug policy has become firmly established in the UK in the last ten years. A number of factors have influenced the mainstreaming of recovery, including influential reports (for example the Scottish Government’s 2008 Road to Recovery) and the active promotion of recovery as a policy idea by key governmental organisations like the English National Treatment Agency for Substance Use. Wardle (2012, p 296) suggests that between 2005 and 2010, recovery moved from being an interest of a small number of disconnected activists to ‘in effect, the new 15

Long-​Term Recovery from Substance Use

orthodoxy’ for treatment and policy. There is some level of disagreement about the effects of the move to recovery. For example, some point to an increased level of peer-​led involvement in service provision, whereas others argue that the independent social activism of the early recovery movement in the UK has largely been subsumed into processes which support agency-​ based treatment objectives (Roy and Buchannan, 2016). Also, many people have raised questions about how the key governmental objectives around recovery might be evidenced beyond long-​established treatment outcome measures. The recognised political need for a particular form of evidence has largely framed the ways in which many research studies about recovery have been conducted since 2010, including the predominance of quantitative research methods and performance monitoring approaches to recovery, often situated around positivist epistemology and controlled experimental investigations. At the core of these research approaches is the idea that it is feasible to define and measure discernible differences in recovery within population groups, producing findings that can be generalised. The random control trial is often referred to as the gold standard in such studies. This chapter is built upon three critical points which question whether these epistemological assumptions can or should be applied to recovery. Firstly, and crucially, it explores the contested nature of recovery and whether agreed definitions can adequately determine the recovery effects of policy and practice, given well-​documented differences at the level of individuals, communities and nations. Secondly, inspired by the seminal work of Orford (2008), whether it is possible to determine between the effectiveness of different forms of treatment intervention, even where these appear to show some marked positive impact on those who take part. Thirdly, it considers the implications of any move away from the deterministic approaches to researching recovery, considering the potential value of other, more inclusive methodologies, including approaches whose proponents often argue that recovery is best understood through listening carefully to those with lived experience (Davies, 2003; Beresford, 2020). Any attempt to research recovery requires some form of definition of it. The briefest examination of the recovery literature suggests that there is little consensus on meanings, and that definitions of recovery abound (Wardle, 2012; Collinson and Best, 2019). Different definitions focus on including: substance-​use goals, service or treatment outcomes, as well as wider changes in lifestyle, social connections and social circumstances. Critical to many of the debates about defining recovery are questions about the different agendas of government, services and those with lived experience. While the term recovery is sometimes used interchangeably with abstinence, it is perhaps more generally accepted that it includes a much broader set of issues (Neale et al, 2012). Several examples help illustrate the diversity of both definitions 16

Measuring long-term recovery

and agendas, with different examples emerging from different places. From policy, recovery is: ‘a process through which an individual is enabled to move on from their problem drug use, towards a drug-​free life as an active and contributing member of society’ (Scottish Government, 2008, p 23). From recovery activists: Recovery is the experience (a process and a sustained status) through which individuals, families, and communities impacted by severe alcohol and other drug (AOD) problems utilize internal and external resources to voluntarily resolve these problems, heal the wounds inflicted by AOD-​related problems, actively manage their continued vulnerability to such problems, and develop a healthy, productive, and meaningful life. (White, 2007, p 236) From academics, recovery is ‘a lived experience of improved life quality and a sense of empowerment’ (Best and Laudet, 2010, p 2). And in the words of someone with lived experience: I was determined to find out if there was something better than drinking and, more importantly, something much better than the mundane robotic sobriety that I had known in my previous short-​ lived attempts at it. I did not want to give up alcohol for just another version of misery. (Coy, 2010, p 34) In a seminal exploration of different definitions, renowned recovery activist William White (2007) suggests that in reaching for a classification there is the need to consider questions such as: Who has the authority to define recovery? What are the crucial ingredients of recovery? Are there any limits or boundaries of recovery? And, when does recovery begin or end? The scope of what can be encompassed in recovery dialogues is perhaps best reflected in the size (220 pages) of White’s (2018) selected bibliography focusing on ‘Addiction Recovery’ on his website. White’s questions and the aforementioned examples support the argument that recovery is everywhere (Rose, 2014) and that it remains a contested concept (Collinson and Best, 2019) which is subject to ongoing debates about who has the authority to define it (Neale et al, 2012; Roy and Buchannan, 2016). Arguably, a role remains for traditional quantitative methods capable of capturing generalisable data on a narrow range of measures, while also accepting their limitations and the need for alternative approaches which develop different forms of evidence (Cairns and Nicholls, 2018). However, White (2012) is clear about the lack of consensus on key constructs on the one hand, as well as the need for ways of researching recovery that are able to account for initiation, stabilisation and long-​term sustained maintenance on 17

Long-​Term Recovery from Substance Use

the other. These differences generate a series of complexities in attempts to measure recovery, even before we account for the idiosyncrasy of individuals. If one individual’s personal concept of their own recovery includes six weeks abstinence in a treatment programme, re-​establishing contact with family members and having Sunday family dinner three years later, we might ask if there’s any realistic way of useably measuring the diversity of such individual journeys. It is on this basis that Best and Ball (2011) suggest the ownership of recovery by its movement members requires research approaches that are able to encompass a broader range of personal outcomes related to recovery, including family and community-​level indicators.

Different approaches to researching recovery A good deal of research on alcohol and other drug use has focussed on treatment programmes. The best-​known and most cited of these studies have used quasi-​experimental designs. For example, two very large multi-​ intervention and multi-​site trials, Project MATCH and United Kingdom Alcohol Treatment Trial (UKATT), have successfully demonstrated improved outcomes for those engaged in a range of substance-​use treatment approaches. Both studies deployed a plethora of measures; for example, UKATT included primary alcohol consumption (that is, the Alcohol Problems Questionnaire, Form 90 and Leeds Dependence Questionnaire) and secondary outcomes (that is, the Addiction Severity Index, EuroQol EQ-​5D, Family Environment Scale General Health Questionnaire and SF36) measures (UKATT Research Team, 2001). The other principal approach involves large-​scale surveys (for instance the Global Drugs Survey1), often using validated instruments of psychological change (for example, the Alcohol Toolkit Study (O’Donnell et al, 2018)). These are similarly well tested and appear to suit immediate pre-​and post-​treatment measurement. Critically they are concerned with what in the broader sense we might call the sobering-​up stage of recovery rather than the long-​term development of sustainable lifestyles. However, White’s (2012) work suggests that there is a need for methodologies able to understand long-​term recovery, which is a process sustained well beyond the immediate (that is, treatment-​related) environments. I argue, on this basis, that there are clear limits on the value of the methods used in studies such as MATCH and UKATT for understanding these long-​term processes. In his seminal work, Orford (2008) articulates the need for shifts in alcohol and other drug research towards approaches which more actively consider change processes and longitudinal perspectives, arguing that there is a need for alternative epistemological approaches able to capture a variety of sources of knowledge. This argument suggests that big trials like MATCH and UKATT can only successfully capture narrowly defined forms of evidence (for example, treatment outcomes) from samples 18

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of people who are actively engaged in treatment, whereas it has been persuasively argued that the majority of those experiencing problems with alcohol and other drugs seek recovery without any recourse to treatment interventions (Klingemann et al, 2009). Orford (2008) also points out that much of this research, based on short time frames, fails to explore important issues including what is happening in treatment relationships, practitioners own theories about what they are doing, people’s own understanding of their own recovery journeys and their wider familial and social contexts in which recovery efforts ultimately succeed or fail. Also, and of some importance, such research all too readily positions individuals as passive subjects of treatment interventions rather than active contributors to their own recovery. That is, these forms of research produce knowledge about the treatment intervention rather than the person seeking recovery, ultimately serving particular political and professional agendas better than those of people with lived experience (Cairns and Nicholls, 2018; Beresford, 2020). Many authors have sought ways to address some of these issues by developing arguments for using frameworks which measure changes in recovery or social capital (Best and Laudet, 2010; White, 2012; Hennessy, 2017; Ógáin and Hodgson, 2017). Although these studies agree on the importance of measuring recovery capital, there is less agreement on how to evaluate it. The components of recovery capital are usually described as including features such as: numbers of social networks, involvement in peer support groups and quality of life measures. Hennessey (2017) captures these considerations in a typology of cultural (community), human, physical and social capital. Ógáin and Hodgson (2017) develop a model which includes five groups of recovery outcomes: attitudes and feelings; personal circumstances; relationships; employment and skills; and drug use behaviour. At the heart of these various models is an argument for identifying the number of networks that individuals are engaged with, how supportive of recovery these networks are and to what extent lifestyle change is sustained into well-​being. These recovery capital components are routinely turned into either recovery capital scales or recovery outcome tools, and often formed into traditional quantitative research designs (Best et al, 2015). Indeed, Ógáin and Hodgson (2017) identify over 30 domains and 70-​plus scales or tools currently in use to measure recovery capital. Hence, even within the recovery capital discourse, determining exactly which measures might usefully provide evidence of processes of recovery remains highly contested (Hennessey, 2017). Also, recovery capital scales are often applied as pre-​and post-​treatment measures, whereby the emphasis is on identifying a positive treatment effect rather than wider processes of personal change. Evaluating long-​term recovery implies, by definition, measuring (change) over time, and this invites active consideration of longitudinal research perspectives. In a study of the everyday lives of recovering heroin users by Neale et al 19

Long-​Term Recovery from Substance Use

(2012, p 192), one participant called Lauren referred to this perspective as the “rest of my life”. Although highly influential studies such as the National Treatment Outcome Research Study (NTORS) (Gossop et al, 2001) have evidenced the value of long-​term cohort studies, in the UK these have been an underused element of the research armoury for recovery, perhaps because they are harder to fund and sustain. However, a long-​term perspective on recovery also raises difficulties about appropriate timescales and the areas to be studied in order to demonstrate correlation, contribution or causation related to protective and supportive factors. Simply put, it is hard to account and measure for everything that can affect well-​being, especially over longer periods in which relevant considerations can change and multiply (for instance, change in diet, the arrival of a new church pastor, the performance of a football team, the quality of daylight (summer) hours, one’s sense of smell or the trying of previously unknown activities). If recovery is about both rediscovery and the new, then by definition the new cannot be captured or measured in the past. The recovery movement as collective action or prefigurative politics reflects for many an ‘increasing disenchantment with a professionalised, pathology-​based and medicalised treatment system’ (Beckwith et al, 2016, p 239). As Davidson et al (2016) note, many policy and practice approaches to recovery focus on the individual (process and outcome) and continue to detract from exploration of issues of community or social injustice. In this context, any extension of traditional research approaches can feel, for those involved, like being subject to expert-​led measurement of the individual rather than capturing the community agenda of social change. As Beresford (2020) reminds us, many research methods (and their politics and practices) perpetuate this sense of social injustice. Hence, two of the key questions in researching recovery are what forms of data are being captured and to meet whose ends.

Calling for more participant-​led approaches Combining the discussions with Orford’s (2008) observation about users as data respondents rather than participants leads us to consider what I might suggest ought to be the alternative gold-​standard approach for researching long-​term recovery. It can be argued that despite its current mainstreaming within policy and practice, recovery pertains to a movement of activities and agendas which are rooted in the lived experience of people who use drugs. In one view, recovery is born out of the sort of independence that defines Alcoholics Anonymous and other peer-​led provision in which users support each other beyond the environs of formal state treatment provision. What it has at its heart is the sense of peers doing with and for themselves rather than, perhaps, being done unto by experts or professionals: “Those 20

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questions are made up from people that don’t know nothing about this [recovery] … that’s why we can’t understand … Because they’re not putting it in the terms that we know” (Alcohol group, Earl, 58 years: Neale et al, 2015, p 31). Many of the same peer-​led articulations have long been made for research, for example in the propositions of participatory action research (PAR) methods. PAR has its origins in the action research of Kurt Lewin, the ethnography of William Foote Whyte and the social activism of Paulo Freire or Carlos Alberto Torres, with modern interpretations extending from the work of Hilary Bradbury and Peter Reason across numerous disciplines including: education, geography, health and social sciences (Greenwood et al, 1993; Reason and Bradbury, 2008; Bradbury, 2015). The participation of people with lived experience in research should involve a spectrum of tasks, from the need for, and commissioning of, research, full team membership in research activities, through to final report writing (Livingston and Perkins, 2018). PAR brings two distinct elements of understanding together in formulating a research process. Firstly, the notion of doing with rather than unto (Gilbert, 2008), something which methodologically addresses questions such as: Who gets to define expertise and knowledge? Should process and outcome be prioritised as equals? What is the appropriate role of the professional researcher? Secondly, the action element overtly seeks to influence social situations with explicit practical applications of the research and relevant political activities (Smith et al, 2015; Livingston and Perkins, 2018). In the context of the recovery movement, such questions crucially pick up on matters of collaboration, equality, language, mutuality, ownership, power, respect, sharing and trust. The application of PAR to research on alcohol and drug use, including recovery, has recently been highlighted in a special edition of Drugs and Alcohol Today (Cairns and Nicholls, 2018). Several of the articles in this edition illustrate the value of alternative data collection methods, including art, film, photography and voice collections. The rise in a) visual methodologies (Pink, 2012; Rose, 2016); b) the use of social media and mobile devices in both recovery and research (Bergman et al, 2017; Kwasnicka et al, 2021); c) the application of narrative approaches which enable individuals to tell their own story and to capture accounts of what recovery is, how it occurred and how it might be considered to be evaluated (reflected upon) (Hunt, 1999; Neale et al, 2012; Grant, 2012; Jopling and Winehouse, 2014); and d) requirements to involve citizens, patients and service users in research (Alcohol Research UK, 2017) all suggest the need for researchers to adopt more approaches beyond the traditional. Indeed, given that some recovery groups exist entirely beyond the treatment world, including on the internet (for example, In The Rooms and Soberistas2), this, in some instances, seems a necessity. 21

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The methodologies developed in some of these studies have helped to direct the gaze of research beyond treatment, and some of the accounts emphasise things such as: (re)building relationships, contemplating a future, developing new identities, eating well, filling the (time) void, gaining weight, giving back (helping others) and successful (active) parenting. These research approaches value the possibility of capturing nuance and richness, the diversity of personal experience and less tangible concerns over measurability and generalisability. Although these sorts of concerns were missing in the early design of the Irish Drug and Alcohol Recovery Outcomes Framework, some were added to the final edition following extensive involvement of drink and drug users (Ógáin and Hodgson, 2017).

Beyond cause and effect What the alternatives discussed in the last section highlight is a well-​known tension between methodologies able to generate clear and generalisable findings for defined populations and those able to capture the depth and nuance of individual journeys. It has been said that in the landscape of politics, the only thing that trumps a double-​blind, random controlled study is a single case example. Perhaps what is possible here is to consider the arguments for: a) causation and correlation; and b) attribution or contribution. Experimental research designs are needed to evidence causation and correlation, but they can only realistically do so by selecting narrow population groups (for instance, those in treatment) and a narrow range of variables often related to a specific intervention. Such research designs also rely on the expertise of professional researchers. In recent years, there has been a rise in contributory approaches to policy and practice interventions, including theory-​based evaluation, realist-​based and contribution analysis methods (Livingston et al, 2019). These approaches adopt theories of change, sometimes expressed as logic models, that help predict how a possible cause-​effect issue (or attribution problem) is likely to achieve any outcomes based on a range of activities. They look to evaluate evidence of the planned activities actually happening, and too what extent the activities appear to have impacted on any observable changes. Critically, these approaches also include active consideration of other possible impactive actions or factors; that is, other actors, events or policies. In not assuming that any outcome (achieved or not) is the consequence of planned activities, there is a recognition in these approaches that many factors may need to be taken into account in understanding change processes. Contribution analysis is specifically being employed by the Welsh and Scottish governments in their evaluation of minimum unit pricing for alcohol (Beeston et al, 2019; Welsh Government, 2019). Thus, while the policy and theory of change predicts reductions in population levels 22

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of alcohol consumption as a consequence of increasing price, the use of contribution analysis allows for the consideration of how other factors, like alcohol industry behaviour or the COVID 19 global pandemic, may impact on any outcome. These approaches to evaluation have the potential to be used not only for considering the extent to which any policy or interventions are impacting on successful targeted recovery outcomes but also for understanding the importance of broader activities and factors (for example, diet, relationship with a pastor, football team performance and sense of smell) as well as more common issues (for instance, employment, housing, recovery group involvement and treatment). The methodologies in such evaluations can also include roles for participative and non-​traditional design and data collection methods, as well as quantifiable measures. Although it does seem likely that the larger the sphere of activity (and recovery in the widest sense is large), the harder it is to make the attribution (Livingston et al, 2019).

Conclusion This chapter asks whether it is desirable, necessary or even possible to measure recovery. The key messages of this chapter start with an acknowledgement of the diversity of what is understood as recovery. I suggest that there is a value in traditional research methods, including those defined by measuring recovery capital, but that these can only ever provide a partial picture of long-​term recovery. I also argue that seeking to measure long-​term recovery, to include the period beyond treatment and into sustained lifestyle changes, is an even more complex undertaking. The complexities of researching long-​term recovery are also extended by questions about whose needs and interests research serves. In this regard, I have explored the idea that the mainstreaming of recovery has involved instrumentalising ‘what began as a liberatory discourse’ in way which is ‘aligned perfectly with our neoliberal present’ (Rose, 2014, p 217). The chapter argues that a fuller understanding of long-​term recovery requires a range of research methodologies and methods, and that participatory approaches don’t merely address the knowledge deficits of traditional approaches but also the epistemic injustice of those being excluded from research processes (Beresford, 2020). I set out the value of long-​term narrative perspectives and other participatory qualitative approaches able to capture personal accounts of recovery, suggesting these provide new forms of evidence which tell us different things. As Neale et al (2015, p 32) put it: ‘Whilst undoubtedly an important scientific exercise, the clinical utility of measuring recovery will almost certainly be maximized when people who use services engage in the process because they find it interesting and helpful, rather than because it is imposed upon them by a target driven treatment system.’ 23

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Maybe the methodological questions tied up in the idea of measuring personal recovery are not the central issue and rather we need to look at addressing and solving the social injustices that lead to people’s perceived need to escape through substance use and which often impede efforts to sustain recovery. Or in the words of Russell Brand (2013), ‘Drugs and alcohol are not my problem, reality is my problem, drugs and alcohol are my solution.’ It might be easier to conclude that, as Orford (2008) suggests, we need to revisit what questions we are asking of whom, and in doing so ensure that we value more diversity in what we ask, of whom and for what end (Beresford, 2020). As Roy and Buchannan (2016, p 408) indicate, there is perhaps a need to ‘reframe the issues about recovery away from the debates around policy and practice, towards fundamental issues concerning the inclusion of people with substance misuse problems in wider society’. Notes https://​www.globaldrugsurvey.com/​ https://​www.intherooms.com/​home/​ and https://​soberistas.com/​

1 2

References Alcohol Research UK (2017) Public Involvement in Alcohol Research, London: Alcohol Research UK. Beckwith, M.; Bliuc, M.A. and Best, D. (2016) ‘What the recovery movement tells us about prefigurative politics’, Journal of Social and Political Psychology, 4(1): 238–​51. Beeston, C., Craig, N., Robinson, M., Burns, J., Dickie, E., Ford, J., Giles, L., Mellor, R., McAdams, R., Shipton, D. and Wraw, C. (2019) Protocol for the Evaluation of Alcohol Minimum Unit Pricing in Scotland, Edinburgh: NHS Health Scotland. Beresford, P. (2020) ‘PPI or user involvement: Taking stock from a service user perspective in the twenty first century’, Research Involvement and Engagement, 6(36): 1–​5, doi:10.1186/​s40900-​020-​00211-​8 Bergman, B.G., Kelly, N.W., Hoeppner, B.B., Vilsaint, C.L. and Kelly, J.F. (2017) ‘Digital recovery management: Characterizing recovery-​specific social network site participation and perceived benefit’, Psychology of Addictive Behaviors, 31(4): 506–​12. Best, D. and Ball, G. (2011) ‘Recovery and public policy: Driving the strategy by raising political awareness’, Journal of Groups in Addiction and Recovery, 6(1): 7–​19. Best, D. and Laudet, A. (2010) The Potential of Recovery Capital, London: RSA. Best, D., McKitterick, T., Beswick. T. and Savic, M. (2015) ‘Recovery capital and social networks among people in treatment and among those in recovery in York, England’, Alcoholism Treatment Quarterly, 33(3): 270–​82. 24

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Bradbury, H. (2015) The Sage Handbook of Action Research (3rd edn), London: Sage. Brand, R. (2013) ‘My life without drugs’, The Guardian, 9 March, available online from: https://​www.theguardian.com/​culture/​2013/​mar/​09/​ russell-​brand-​life-​without-​drugs Cairns, J. and Nicholls, J. (2018) ‘Co-​production in substance use research’, Drugs and Alcohol Today, 18(1): 6–​16. Collinson, B and Best, D. (2019) ‘Promoting recovery from substance misuse through engagement with community assets: Asset based community engagement’, Substance Abuse: Research and Treatment, 13: 1–​14. Coy, A.L. (2010) From Death Do I Part:​ How I freed Myself from Addiction, California: Three in the Morning Press. Davidson, G., Brophy, L. and Campbell, J. (2016) ‘Risk, recovery and capacity: Competing or complementary approaches to mental health social work’, Australian Social Work, 69(2): 158–​68. Davies, J.B. (2003) ‘Why wear blinkers in a dark room for 100 years when it’s a lovely day outside’, Journal of New Directions in the Study of Alcohol, 28: 61–​70. Gilbert, N. (2008) Researching Social Life, London: Sage. Gossop, M., Marsden, J. and Stewart, D. (2001) NTORS after Five Years the National Treatment Outcome Research Study Changes in Substance Use, Health and Criminal Behaviour during the Five Years after Intake, London: National Addiction Centre. Grant. J. (2012) Men and Substance Abuse: Narratives of Addiction and Recovery, London: Lynne Rienner. Greenwood, D.J., Whyte, W.F., and Harkavy, I. (1993) ‘Participatory action research as a process and as a goal’, Human Relations, 46(2): 175–​92. Hennessy, E.A. (2017) ‘Recovery capital: A systematic review of the literature’, Addiction Research and Theory, 25(5): 349–​60. Hunt, M. (1999) The Junk Yard: Voices from an Ir ish Pr ison, Edinburgh: Mainstream Publishing. Jopling. K and Winehouse. M. (2014) Recovery Stories: Journeys through Adversity, Hope and Awakening, Hampshire: Waterside Press. Klingemann, H., Sobell, M.B. and Sobell, L.C. (2009) ‘Continuities and changes in self-​change research’, Addiction, 105: 1510–​18. Kwasnicka, D., Boroujerdi, M., O’Gorman, A., Anderson, M., Craig, P., Bowman, L. and McCann, M. (2021) ‘An N-​of-​1 study of daily alcohol consumption following minimum unit pricing implementation in Scotland’, Addiction, 116(7): 1725–​33. Livingston, W and Perkins, A. (2018) ‘Participatory Action Research (PAR): Critical methodological considerations’, Drugs and Alcohol Today, 18(1): 61–​71.

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Livingston, W., Madoc-​Jones, I. and Perkins, A. (2019) ‘The potential of contribution analysis to alcohol and drug policy strategy evaluation: An applied example from Wales’, Drugs, Education, Prevention and Policy, 27(3): 183–​90. Neale, J., Nettleton, S. and Pickering, L. (2012) The Everyday Lives of Recovering Heroin Users, London: RSA. Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T. and Strang, J. (2015) ‘ “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery’, Drugs: Education, Prevention and Policy, 22(1): 26–​34. O’Donnell, A., Abidi, L., Brown, J., Karlsson, N., Nilsen, P., Roback, K., Skagerström, J. and Thomas, K. (2018) ‘Beliefs and attitudes about addressing alcohol consumption in health care: A population survey in England’, Bio Medical Central Public Health, 18(391): 1–​9. Ógáin, E.N. and Hodgson. L. (2017) Drug and Alcohol Recovery Outcomes Framework, Dublin: Drug and Alcohol Ireland. Orford, J. (2008) ‘Asking the right questions in the right way: The need for a shift in research on psychological treatments for addiction’, Addiction, 103(6): 875–​85. Pink, S. (2012) Advances in Visual Methodologies, London: Sage. Reason, P. and Bradbury, H. (2008) The Sage Handbook of Action Research: Participative Inquiry and Practice (2nd edn), London: Sage. Rose, D. (2014) ‘The mainstreaming of recovery’, Journal of Mental Health, 23(5): 217–​18. Rose, G. (2016) Visual Methodologies an Introduction to Researching with Visual Materials (4th edn), London: Sage. Roy, A. and Buchanan, J. (2016) ‘The paradoxes of recovery policy: Exploring the impact of austerity and responsibilisation for the citizenship claims of people with drug problems’, Social Policy and Administration, 50(3): 398–​413. Scottish Government (2008) The Road to Recovery: A New approach to Tackling Scotland’s Drug Problem, Edinburgh: Scottish Government. Smith, L, Thomas, E.F. and McGarty, C. (2015) ‘We must be the change we want to see in the world: Integrating norms and identities through social interaction’, Political Psychology, 36: 543–​57. UKATT Research Team (2001) ‘United Kingdom alcohol treatment trial (UKATT): Hypotheses, design and methods’, Alcohol and Alcoholism, 36(1): 11–​21. Wardle, I. (2012) ‘Five years of recovery: December 2005 to December 2010 –​from challenge to orthodoxy’, Drugs: Education, Prevention and Policy, 19(4): 294–​8.

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Welsh Government (2019) Public Health (Minimum Price for Alcohol) (Minimum Unit Price) (Wales) Regulations 2019, Cardiff: Welsh Government, available online from: https://​gov.wales/​sites/​default/​files/​publications/​2019-​10/​ public-​health-​minimum-​price-​for-​alcohol-​wales-​act-​2018-​summary-​ integrated-​impact-​assessment.pdf White, W.L. (2007) ‘Addiction recovery: Its definition and conceptual boundaries’, Journal of Substance Abuse Treatment, 33(3): 229–​41. White, W.L. (2012) Recovery/​Remission from Substance Use Disorders: An Analysis of Reported Outcomes in 415 Scientific Reports, 1868–​2011, Chicago: Philadelphia Department of Behavioral Health and Intellectual Disability Services and the Great Lakes Addiction Technology Transfer Centre. White, W.L. (2018) ‘Addiction recovery: A selected bibliography with an emphasis on professional publications and scientific studies’, available online from: 2018- ​ R ecovery- ​ R eseaarch-​ B ibliography-​ F inal.pdf (williamwhitepapers.com)

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3

Telling recovery stories: an exploration of the relationship between policy, practice and lived experience Alastair Roy and Jennifer Christensen

Introduction This chapter offers a critical exploration of long-​term recovery by exploring the relationship between policy, practice and lived experience. It draws on findings from a three-​year Economic and Social Research Council–​ funded project which, between 2012 and 2016, explored the evidence base around the implementation of a recovery-​oriented model of service provision in Lancashire, UK. The study generated a detailed understanding of the development of a new recovery-​oriented model of care as well as a contextualised understanding of the lived experience of a number of people using substance-​use treatment services. The case study presented in the chapter explores one transgender woman’s ongoing struggles to address her substance use, to find employment and to feel accepted in the wider community. It argues that exploring the links between the micro level of lived experience, the meso level of practice and the macro level of policy is important for developing and honing our understanding of the lived effect of the implementation of recovery policy. One important value of biographical methods is that they can tease out the motivations and justifications of individuals, helping us to explore and understand the relationship between policy, practice and lived experience. Rustin (1991) argues that it is through the analysis of single cases that self-​ reflection, decision-​making and action in human lives can best be explored and represented; the ontological assumption being that individual biographies make society and are not merely made by it. Hence, this chapter concludes by arguing that recovery as a policy storyline presents a resolution narrative for substance use which replaces the previous risk management one. I argue that the case study I present demonstrates that there are important tensions between the policy storyline about recovery and the everyday lives of people with substance-​use issues (Roy and Buchanan, 2016).

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Recovery as policy storyline The idea of recovery has a relatively recent history in substance use in the UK, and indeed, the language, much of the research base and many of the concepts have been adopted from the field of mental health. The term ‘recovery’ first appeared in policy in England in the coalition government’s 2010 strategy Reducing Demand, Restricting Supply, Building Recovery: Supporting People to Live a Drug Free Life (H.M. Government, 2010), which sought to address both alcohol and other drugs. However, the processes which led to the adoption of a recovery-​oriented policy actually began around 2000. It is often imagined that the process of policy development is a rational activity in which, over time, strong empirical evidence builds, and that this, in turn, informs the process of policy change. However, Stevens (2011) argues that ‘perhaps most especially at the level of government, it is stories rather than evidence that prove to be the most potent force in shaping change’ (Stevens, 2011, p 238). Needham (2011) suggests that for new policy storylines to become widely accepted and adopted, they must present an account of the relevant issues which is both ‘compelling’ and ‘emotionally resonant’ (Needham, 2011, p 54). Hajer (1995, pp 64–​5) argues that new policy storylines tend to prove persuasive when they imply the existence of a common-​sense understanding of the relevant issues and when they convey clear ideas about ‘blame, urgency and responsible behaviour’. The point is that a new policy storyline must provide a novel and convincing account which sounds right based on the plausibility of the story rather than on evidence per se. In order to explore the relevance of these ideas to the adoption of a recovery-​based substance-​use policy in the UK, it is necessary to revisit the years before 2010 to understand how recovery became ‘the new policy orthodoxy’ (Wardle, 2012, p 294). In the early 2000s, several people began to voice criticisms about the number of substance users ‘parked’ in what they saw as an overfed, self-​serving and complacent substance-​use treatment system (Dawson, 2012, p 2). Tensions around this issue spawned, in part, the user-​led recovery movement that operated outside the domain of mainstream services and which championed the rights of substance users to be free from stigma and accepted in society. Some voices in the National Treatment Agency for Substance Misuse (NTA) began to look to the US, where ideas of recovery had been in development for many years, developed by influential writers such as William White. In the mid-​2000s, a number of leading people in and beyond the drug treatment sector began to consider how the idea of recovery might inform a new policy direction for the UK. Some of the early discussions about this issue were led by the UK Drug Policy Commission (UKDPC) (2008), an independent body which, between 2007 and 2012, attempted to provide objective analysis of the evidence concerning drug policy and practice. In 29

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these discussions, there was a desire among many leading people in the sector to emphasise the idea that recovery, like substance use itself, was highly personal and idiosyncratic in nature. The overall emphasis of the UKDPC report also reflected a fear among some of those who contributed to the discussions that the government might institute a more generalising and restrictive definition of recovery as part of instituting this new policy direction. The report conveyed some important ideas about long-​term recovery, including that it is a ‘gradual process which may take years and during which time relapse is common, sometimes in the form of short-​term lapses and other times for longer periods, but progress is progressive and cumulative between relapses’ (UKDPC, 2008, p 7), and that ‘some people … may always consider themselves “in recovery” rather than recovered, while others may eventually feel that they are … fully recovered. This diversity of experience lies behind much of the debate around recovery … and poses a challenge to anyone seeking to define it’ (UKDPC, 2008, p 5). The talk and general excitement about recovery gathered pace in 2008 with the publication of the strategy Drugs: Protecting Families and Communities: the 2008 Drug Strategy (H.M. Government, 2008). This was an important marker in the development of the recovery storyline because it placed much less emphasis on drug-​related crime and harm reduction instead describing a new focus on recovery and reintegration (Duke, 2012). The work of the policy think tank the Centre for Social Justice (CSJ), established by Conservative politician Iain Duncan Smith, was also central to the advancement of this new policy storyline. The CSJ levelled serious criticism at large-​scale, long-​term methadone maintenance, as well as what it saw as the stifled innovation in the sector under the leadership of the NTA. Wardle (2012, p 294) characterised how the emergence of recovery from a minority critique to the mainstream focus of policy and practice occurred because a set of influential individuals contested and successfully defeated the ‘seemingly impregnable orthodoxy of harm reduction’. However, it is important to note that recovery was a concept being championed simultaneously by a number of different actors, including the user-​led recovery movement, right-​wing think tanks, some people within the NTA as well as a small number of influential academics. This mixed and somewhat conflicted parentage of recovery constructed a discourse fraught with tensions from which many potential problems have arisen (Roy and Buchanan, 2016). Hence, important questions remain about how recovery is constructed in policy, how it is understood and enacted in practice and how it is interpreted and experienced by different groups of people with lived experience (PWLE). Since the 2010 strategy there has been increased understanding of the anticipated and actual effect of this policy change on practice. For years people had observed that policy often had a fundamentally ‘totemic’ function (Stevens, 2011, p 17), operating as a form of political window 30

Telling recovery stories

dressing –​aimed at the voting public –​behind which practice remained essentially the same. When the new recovery-​oriented policy was introduced in 2010, many people questioned what it would actually mean for those in contact with services. These concerns were extended when initially the most visible and obvious changes in practice settings seemed to be surface-​ level shifts in language rather than fundamental changes in models of care. However, the policy did institute significant changes in the funding model for treatment in the UK, whereby generous centralised ring-​fenced funding (at least for drug treatment) was removed, with decisions about the levels of treatment spending (on alcohol and other drugs) now to be taken at a local level by public health commissioners. It is on this basis that Roy and Buchanan (2016) have suggested that the introduction of recovery policy hid a neoliberal agenda behind its surface-​level philosophy of social inclusion, observing, that ‘in a prolonged period of austerity, the Government’s notion of recovery can easily appear focused upon cost cutting, abstinence and responsibilisation, rather than rehabilitation, social reintegration and developing the pathway to full citizenship’ (Roy and Buchanan, 2016, p 3). We now turn to introducing a case example which explores the lived experience of one person in long-​term recovery in the context of this changing policy landscape. The case demonstrates how the lives of people seeking long-​term recovery for themselves are framed by a wider set of structural and systemic issues which mostly remain unacknowledged in policy. We argue that in striving for forms of substance-​free inclusion, some people can continue to find themselves excluded from society or experience shallow and marginal forms of inclusion (Roy et al, 2020).

The lived experience of long-​term recovery Between 2012 and 2016, we undertook a project funded by the Economic and Social Research Council which explored the implementation of a recovery-​oriented model of treatment in Lancashire, a county in the North of England. The project was a knowledge transfer partnership (KTP), a UK scheme that supports industry and academic partnerships through innovative project work. The project was undertaken in collaboration with an independent provider of integrated substance-​use treatment. This study followed discussions with local commissioners, which began in 2009 at the point the new national policy framework was being discussed, and the KTP followed a small local study completed in 2011 which explored the attitudes of the existing substance-​use workforce towards the introduction of a new recovery-​oriented service model (Roy and Buffin, 2011). The KTP involved a number of different elements, including long-​term ethnographic observation of practice and in-​depth qualitative interviews with commissioners, staff and PWLE. 31

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In one element of the study, we undertook a series of 12 walking-​tour interviews with people using substance-​use treatment services in Lancashire. Walking as a research method has been adopted in anthropology and ethnography, cultural geography and qualitative social science as an innovative way to produce knowledge (Hall, 2009; Roy et al, 2015; Roy, 2016; O’Neill and Roberts, 2019). For example, Anderson (2004) suggests that walking and talking can provide a rich source of narrative often not obtainable from face-​to-​face interviews alone. In this project, we invited participants to lead a walking tour of two to four sites they associated with their own recovery, the aim being to illicit narratives and generate understandings about people’s individual recovery. The tours were led by the interviewees, who chose their own sites and set their own pace. On arrival at each stop, interviewees were asked to take a photograph and, if they were happy to, tell a story about the site. These walking interviews helped us to get mobile with PWLE in the ‘spaces and places’ of their recovery, enabling us to see issues around substance use and recovery in the wider context of their lives. The walking interviews also unearthed important structural and systemic issues, which demonstrated the ways in which long-​term recovery is a process in which personal ecologies interact with wider social and political issues as well as the more immediate inter-​and intra-​personal dimensions of experience in the wider communities in which people live (see Klein and Hill’s essay in Chapter 5 of this volume). All interviews were audio recorded and transcribed. One of these walking-​tour interviews was led by a transgender woman we are calling Sally (pseudonym). Sally, who was in her 50s, had been living in Lancashire for eight years, having relocated to the area from another part of England after the breakdown of her marriage. She was keen to begin her walking interview at the substance-​use service where she was working as a volunteer. Despite the fact that we didn’t want to take any photos which could personally identify her, she was especially keen for us to take a photo of her at the main desk where she greets people and answers the phone. In order to protect her identity, we are not reproducing the photo in this chapter; however, it is important to recognise that the decision to start the interview in this location and to take the photo in this way conveys that this visible role in the community is a valued facet of her long-​term recovery. In the 90 minute walk, Sally took us to: her home, where she lives with her teenage son and which she had been struggling to renovate for eight years due to financial difficulties; the local job centre, where she disclosed her ongoing struggles with the benefit system and her difficulties in gaining employment as a transgender female; a pub in the town centre where she used to work behind the bar and do odd jobs and which was the site of much of her drinking; and an independent substance-​use treatment organisation where she now works as a volunteer. 32

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When we approached Sally’s house, she described it as “a wreck” and said she has “been wanting to work on it ever since she moved to the area eight years ago”. She described the house as both a source of stress and also as a place of hope for the future, because for her, long-​term recovery is also about working on the possibility of finding and/​or creating a place where she can feel at home: ‘The house is a real wreck … But it’s my hope, yet at the same time it’s a real cause of stress for me … At times it’s been a real struggle to do the work … it’s hard … but it’s my future. It’s a place of hope, um, and the place of my future.’ Sally was keen to show us the ways in which she had been trying to rework the house. As she walked us through it, she told us about numerous DIY projects she had started but been unable to finish, and she indicated her intense frustration at this situation. She explained that when she first moved to the area, the stress of her financial situation and her struggle to find acceptance in the local area caused her to suffer bouts of severe depression. She said, “I couldn’t see anything moving, and I was getting really ill. I didn’t have the energy to do anything.” Sally explicitly links the struggle to find acceptance in the town to her identity as a transgender woman, and she described how the pub became a sort of refuge, a place where she found a level of acceptance and also part-​time work. Drinking daily with friends at the pub quickly became a way to manage feelings related to her deteriorating mental health and sense of exclusion, and she described how, in this context, a long-​established pattern of heavy drinking turned into dependent use. We left the house and walked towards the town centre, crossing a large pedestrian bridge over a busy road and walking down into the shopping district. As we walked, Sally reflected on her earlier life as a successful businessman working for an agency in the South East. She described how issues related to her identity and problems in her job led to her marriage deteriorating, and that when she lost her job the marriage broke down. As we stopped outside the job centre, Sally told us that since moving to the town, she had found it really difficult to find full-​time work, and she described this as “a massive source of frustration”. Standing outside the front doors of the job centre, Sally reflected on her difficulties in gaining employment and the discrimination she continues to face as a transgender female: ‘Being transgender and getting work is very difficult here. I had to go to agencies every week and the agencies won’t employ you. You’re very lucky if you get any work … And the job centre put more and more pressure on me. The job centre was pushing me harder and harder to 33

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look for work and, in the end, I had to go off sick, as I couldn’t do what the job centre wanted me to do.’ Sally described to us a specific instance of being sent for an interview at a factory, saying: “The employer opened the door, I told him I was here for an interview, and he simply looked at me and said, ‘No, you’re not right for the role’, and shut the door.” Experiences such as this had occurred frequently, and Sally saw them as part of a daily battle for a sense of inclusion and acceptance. She described how, in seeking employment, over time she had almost begun to prefer those employers who were honest and open about their reasons for rejecting her. However, the experience of living with this continued rejection and the ongoing suspicion and pressure from the job centre was difficult to cope with. It left her feeling more and more isolated, depressed and vulnerable, and provided a powerful motive to drink more. The next site that Sally took us to was the pub in the town centre where she used to do occasional odd jobs and where she used to work behind the bar. At the time we were there the pub was closed, and as the three of us stood outside the front door, Sally talked at some length about working in the pub, about the community of drinkers she found there and about the real difficulties she’d had in controlling her drinking. She then recalled a chance meeting, during this time, with a stranger who was going to an Alcoholics Anonymous (AA) meeting: ‘I was talking to him and he said, ‘I’m on my way to a meeting’, and he was really proud of it. In my mind I was [looking for] controlled drinking … And it stuck in my mind that this guy was happy to be doing something and changing his life.’ After this encounter, Sally attended an AA meeting at a local church where she got loads of telephone numbers, including for the local substance-​ use treatment service. She distinctly recalled the first time she called the service: ‘[The] lady who answered spoke nicely and said, “You are where you are now, you are drinking heavily, so let’s plan this properly on Monday morning, have a cup of coffee and talk about it.” ’ As well as seeking formal treatment support, Sally attended AA as well as a breakfast club run by the local treatment service. This was an important resource as it gave her a motive to get out of the house every morning and an opportunity to meet people. Later, she sought out the volunteering opportunities provided by the service. Daily volunteering has provided both structure as well as a visible role in the community. When we asked Sally why she chose to spend every day volunteering, she told us: “Well, I think that I decided that I had stopped drinking 34

Telling recovery stories

and I couldn’t do it on my own at home … so whatever was there I was going to put everything into it.” Towards the end of this discussion outside the pub, Sally reached into her pocket and pulled out the front-​door key for the pub, which she held out and said: ‘Here’s the key to the pub, the front-​door key. I know it, that, well, I’ve still got the key to the front door [laughing] … I keep hold of the key purely for … yeah … a memory … I suppose of a world I can go back to … It’s the fact that if I wanted to, I could go back in … and I would be welcome to go back in.’ Sally reflected on the reason that she has chosen to keep the key to the pub despite her recognition of the very real problems that drinking has caused in her life. When we discussed it, she laughed again at what she described as the irony of this decision given all the very obvious efforts she is making to build long-​term recovery through local treatment services, the fellowships and volunteering. What Sally made clear is that, despite the pub being a site she connects with her problem drinking in the last eight years, one reason she keeps the key is because she knows that if she did go back she would be made to feel welcome. In some ways, despite all the problems Sally had with drinking, she still holds on to an experience of community that she valued in the pub and the feelings of connection that have been hard to replicate since. This theme of belonging is crucial to Sally, who is still desperately searching to find feelings of belonging and acceptance in her life as a transgender female in the town. Poignantly, she went on to recall a story about her elder brother and his relationship to his own local pub: “If you were ill, the pub looked after you. My oldest brother had cancer and the pub started bringing him meals and a couple of bottles of beer to have at the side of his bed.” The pub and its inclusive drinking culture were double edged, providing a non-​judgemental place where Sally felt at home and secured employment, but it was also somewhere which enabled and normalised her excessive drinking. It is important to understand that drinking brought both pleasure and pain for Sally, and that the pub was a place in which she felt connected to other people (see Svendsen’s essay in Chapter 4 of this volume). This is important because Sally still feels extremely isolated despite all her efforts to build long-​term recovery. In this way, the story reminds us that reorientating one’s life is a significant challenge for people who have been isolated for years in long-​term substance-​dependent lifestyles, and it helps explain why people often hold onto positive elements of their substance-​using lives (Roy and Buchanan, 2016). It’s also important to register that the interview demonstrates the ways in which the local substance-​use service and the fellowships have helped Sally to 35

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identify and recognise personal strengths, open up relevant support networks and access wider local resources which she uses as part of her own long-​term recovery. For Sally, routine and consistent peer relationships have been vital in providing a reason to get out of the house, to manage negative feelings about herself and to break her cycle of drinking. Some services specifically commissioned as part of the development of a recovery-​orientated model of care locally really helped with this. Examples include the breakfast club and volunteering opportunities. However, these things have not provided a panacea. The breakfast club was subsequently discontinued as part of a cost-​saving exercise, and at the time of the interview, the job centre was pressuring Sally to find paid employment, which threatened to take her away from the volunteering role which she enjoyed so much. As well as these systemic issues, Sally reported that she still continued to experience discrimination in her daily life, and these ongoing micro-​aggressions create, for her, very real struggles to feel a sense of acceptance as a transgender woman in wider society.

Conclusion Early efforts to define an appropriate approach to the development of recovery policy in the UK sought to emphasise the idea that recovery, like substance use itself, was highly personal and idiosyncratic in nature (UKDPC, 2008). Service-​user academic Diane Rose (2014, p 217) has argued in the field of mental health that, on the surface of it, it’s difficult to know who would argue with the idea that recovery is personal and deeply individual. ‘Why would anyone object to that?’ The answer, ‘to put it bluntly’, she suggests, is ‘because we are not isolated individuals’. Rose’s argument is that to focus too exclusively on individuals is to ‘render unimportant the social relations in which we are embedded and which shape and form us.’ ‘In a real sense,’ she suggests, ‘we are those social relations.’ The interview presented in this chapter was led by a transgender woman called Sally who is seeking long-​term recovery. It conveys quite clearly her sincere and sustained efforts to address her drinking and to find forms of connection and acceptance in the wider community, including through work. Sally is insightful enough to recognise that her search for recovery involves important examples of healing, change and benefit, but also resignations, continued vulnerabilities and obvious losses. She also clearly conveys the ways in which some agencies, such as, for example, the job centre, whose explicit role is intended to be to help people get back into work and feel included, often treat people in ways which extend their sense of failure and exclusion. Tyler (2020, p 18) argues that ‘stigma is purposefully crafted as a

36

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strategy of government’, and Sally, who describes the ways in which she feels shamed by her need for welfare support, demonstrates that she understands how stigma is deliberately ‘designed into’ the system of job support. Another important question is how we should understand long-​term recovery and how those who work in substance-​use services might best support people like Sally who seek it for themselves. Klein and Hill (Chapter 5 in this volume) suggest that any discussion of long-​term recovery requires consideration of the relative importance of stopping or controlling substance use, of the role of formal treatment, of the importance of wider social, community and peer-​led services and networks, as well as of changes instituted by PWLE through their own efforts. The power of Sally’s story emerges from the ways in which her own account is able to draw links between these different domains. We learn that, for Sally, the wider societal context is one which provides a seriously diminished sense of acceptance (Rose, 2014). It leaves us to reflect that transgender people are still seriously at risk of stigmatisation and exclusion, and that people like Sally seek not only support with substance use but recognition and acceptance as full democratic citizens (Lloyd, 2013; Roy and Prest, 2014; Roy et al, 2020). As other writing on the experience of LGBTQ+ people with substance-​ use issues argues, the search for recovery is inevitably framed by a broader set of structural and systemic issues which often remain unacknowledged in policy and practice, where the issues faced by people such as Sally are all too often minimised (Prest, 2017; Roy et al, 2020). While it’s clearly the case that elements of recovery-​oriented service provision have opened out valued spaces of inclusion and acceptance for Sally, it’s also true that some of these have proved short lived, and that the realities of day-​to-​day experiences of stigmatisation and exclusion offer a troubling backdrop to these positive experiences. Sally conveyed the personal costs of this daily struggle, explaining that the ongoing experience of structural and psychological exclusion is a significant problem for her sense of long-​ term recovery. We finish by arguing that what we learn from this interview with Sally is that hard work, thrift and following the rules doesn’t necessarily deliver control over a person’s story, much less guarantee an unequivocally happy ending (Berlant, 2011). Hence, it offers an important reminder that behind the policy storyline of recovery are people struggling for a feeling that its promises are real, and who are sometimes experiencing rather shallow and fragile forms of belonging, framed by a broader set of structural and systemic issues. What this implies, as Diane Rose (2014, p 217) so aptly proposes, is ‘not a rejection of every part of the recovery discourse and practice’ but an engagement with it which tackles ‘head on the fact that our society is intolerant of difference’.

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References Anderson, J. (2004) ‘Talking whilst walking: A geographical archaeology of knowledge’, Area, 36(3): 254–​61. Berlant, L. (2011) Cruel Optimism, Durham, NC: Duke University Press. Dawson, P. (2012) ‘Why the methadone doesn’t work’, The Guardian, 10 January, available online from: https://​www.theguardian.com/​society/​ 2012/​jan/​10/​why-​methadone-​drugs-​dont-​work Duke, K. (2012) ‘From crime to recovery: The reframing of British drugs policy?’, Journal of Drug Issues, 43(1): 1–​17. H.M. Government (2008) Drugs: Protecting Families and Communities: The 2008 Drug Strategy, London: The Stationery Office. H.M. Government (2010) Reducing Demand, Restricting Supply: Supporting People to Live a Drug Free Life, London: The Stationery Office. Hajer, M. (1995) The Politics of Environmental Discourse: Ecological Modernization and the Policy Process, Oxford: Oxford University Press. Hall, T. (2009) ‘Footwork: Moving and knowing in local space(s)’, Qualitative Research, 9(5): 571–​85. Lloyd, C. (2013) ‘The stigmatization of problem drug users: A narrative literature review’, Drugs: Education, Prevention and Policy, 20(2): 85–​95. Needham, C. (2011) ‘Personalization: From story-​line to practice’, Social Policy and Administration, 45(1): 55–​68. O’Neill, M. and Roberts, B. (2019) Walking Methods: Research on the Move, London: Routledge. Prest, M. (2017) ‘Rehab is a lonely place for a gay man like me’, The Guardian, 11 December, available online from: https://​www.theguardian. com/​healthcare-​network/​views-​from-​the-​nhs-​frontline/​2017/​dec/​11/​ rehab-​lonely-​place-​gay-​man-​addiction Rose, D. (2014) ‘The mainstreaming of recovery’, Journal of Mental Health, 23(5): 217–​18. Roy, A. (2016) ‘Learning on the move: Exploring work with vulnerable young men through the lens of movement’, Applied Mobilities, 1(2): 207–​18. Roy, A. and Buchanan, J. (2016) ‘The paradoxes of recovery policy’, Social Policy and Administration, 50(3): 398–​413. Roy, A. and Buffin, J. (2011) An Evaluation of Current Views of Recovery Oriented Practice among Staff East Lancashire, Preston: University of Central Lancashire. Roy, A. and Prest, M. (2014) ‘Culture change: Art, addiction and the recovery agenda’, in Z. Zontou and J. Reynolds (eds) Addiction and Performance, Newcastle upon Tyne: Cambridge Scholars Publishing, pp 178–​91. Roy, A., Ravetz, A. and Prest, M. (2020) ‘Unsettling narrative(s): Film making as an anthropological lens on an artist-​led exploration of LGBT+ recovery’, Anthropological Notebooks, 26(1): 33–​54. 38

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Roy, A., Hughes, J., Froggett, L. and Christensen, J. (2015) ‘Using mobile methods to explore the lives of marginalised young men in Manchester’, in L. Hardwick, R. Smith and A. Worsley (eds) Innovations in Social Work Research, London: Jessica Kingsley, pp 155–​73. Rustin, M. (1991) The Good Society and the Inner World: Psychoanalysis, Politics and Culture, London: Verso. Stevens, A. (2011) ‘Telling policy stories: An ethnographic study of the use of evidence in policy-​making in the UK’, Journal of Social Policy, 40(2): 237–​55. Tyler, I. (2020) Stigma: The Machinery of Inequality, London: Zed Books. UKDPC (2008) The UK Drug Policy Commission Recovery Consensus Group: A Vision of Recovery, London: UKDPC. Wardle, I. (2012) ‘Five years of recovery: December 2005 to December 2010 –​from challenge to orthodoxy’, Drugs: Education, Prevention and Policy, 19(4): 294–​8.

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4

Change processes in long-​term recovery for individuals with present and former substance-​use dependence Thomas Solgaard Svendsen

Introduction This chapter aims to describe the diverse long-​term change processes that are often required when individuals with present or former substance dependence want to develop meaning and purpose in their lives. It draws on the author’s work in a Norwegian study, the Stayer study, that involves long-​term follow-​ up of people who use, or previously used, substances (Svendsen et al, 2017) . A brief summary of the nature and extent of substance use in Norway, the welfare state model and organisation of substance-​use treatment services is presented. The chapter continues with a description and discussion of how the multifaceted term ‘long-​term recovery’ is linked to substance dependence and substance-​use recovery research. Several examples from the Norwegian Stayer study are provided to illustrate the value of long-​term research on change processes in substance-​use recovery. Finally, practical improvements for long-​term recovery services and research regarding individuals with both present and former substance-​use dependence are suggested.

The nature and extent of substance use in Norway Compared to most European countries, Norway has a low prevalence of inhabitants that use substances, including alcohol and cigarettes. Cannabis is the most commonly used illicit drug in Norway. In 2017, one in ten young adults reported cannabis use in the previous 12 months, while use of other illicit substances such as MDMA, ecstasy and cocaine is reported to be significantly lower; substance use is mostly reported by young adults, with higher prevalence rates among males than females (EMCDDA, 2019). The number of high-​r isk drug users in Norway, linked to injecting amphetamines and opioids, primarily heroin, was estimated at around 8,700 in 2016 (2.5 per 1,000 inhabitants aged 15–​64 years). Drug-​induced deaths among adults (15–​64 years) was 75 deaths per million in 2016, the main 40

Change processes in long-term recovery

intoxicant in drug-​related deaths being the prescription opioids morphine and oxycodone, surpassing heroin as the most common opioid in overdose deaths (EMCDDA, 2019).

Norwegian government policy and services for substance use The Nordic welfare state model emphasises activating social policies, such as pension reforms, to stimulate the labour supply, aiming to ensure that every member of society can benefit from the social security net that is made possible through the redistribution of income through tax systems (Dølvik and Martin, 2015). Norway’s health and care policy is integrated in, and delivered through, universal welfare schemes in 356 Norwegian municipalities with 5.4 million inhabitants. The municipalities, with an average of 15,000 inhabitants each, bear the responsibility for providing general health and care services, low-​threshold mental health and substance-​ use services and follow-​up after substance-​use treatment, financed through tax systems and federal funding (Prop. 15S, 2016). In 2004, the Substance Treatment Reform (‘the Rusreform’) was implemented in Norway, with responsibility for specialist treatment transferred from county level to four state-​owned, regional, specialised healthcare authorities (Nesvåg and Lie, 2010). The aim was to integrate treatment services into the already established legal, economic and organisational structures of specialised healthcare services in Norway to provide better continuity of care. In 2018, 32,000 registered patients received specialist treatment, with 70 per cent of these patients receiving outpatient treatment (NOU, 2019, p 26). Although several forms of treatment services are available in Norway, aftercare services have received criticism focused on the paradox of high treatment expenses and the lack of long-​term follow-​up services following specialised treatment (Prop. 15S, 2015–​2016). An annually updated register provides detailed information from 257 of the 356 Norwegian municipalities on people receiving health and social services. The register showed that in 2019, 22,400 people with extensive substance use issues received social services. Social challenges identified through the register were connected to issues including mental distress, housing, economic challenges, lack of education, low levels of satisfying daytime activities and poor family and network relationships (Hustvedt et al, 2020).

What is long-​term recovery for substance-​use dependence? Recovery has become a prominent feature of substance-​use policy and treatment responses in Norway. It can be described as a process in which 41

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an individual with an extensive history of substance use manages their levels of use and eliminates and handles symptoms. Optimally, these processes lead to the individual feeling empowered to develop meaning and purpose in their lives and to contribute more fully to society (Gagne et al, 2007; Leamy et al, 2011). Distinctions between clinical recovery, with a focus on substance-​use management, and personal recovery, with a broader focus on life events and social processes, have been formulated (Slade, 2009; Price-​ Robertson et al, 2016), with processes occurring outside of formal treatment often described as self-​change processes (Klingemann and Sobell, 2007) or natural recovery (Mudry et al, 2019). Most change processes occur outside formalised treatment, which most often targets the more acute and basic needs and has a primary focus on substance-​use abstinence (Kelly, 2017). Developing useful treatment and follow-​up services requires a broader focus on the change processes which accompany long-​term recovery; these include meaningful social processes in diverse social contexts alongside individual substance-​use management (McKay, 2017). In Norway, knowledge of the significance of factors that occur outside of formal substance-​use treatment has led to an increasing focus on how treatment and support services can support individuals in becoming integrated and active members of society. This integrative focus needs to include early detection and intervention to help individuals with problematic substance-​ use, easy access to treatment and coordinated services and pragmatic bridging from treatment to society. Although there is an increasing focus on these areas in Norway, several steps remain that hopefully will lead to more inhabitants with current or former substance dependence gaining access to the labour market, education, meaningful activities, a satisfying social network and the private housing market (Prop. 15S, 2015–​2016).

Research on substance-​use recovery processes Research has been important in developing theories for recovery, but its assumptions about the role of political, economic, legal and cultural relations in constituting the realities of recovery have received less critique in recent years (Fomiatti et al, 2019). Even though research evidence has occasionally included social perspectives on recovery processes, the individual perspective has continued to be the centre of attention, with expectations based around people ‘controlling and changing their social environments through enterprise and activity’ (Fomiatti et al, 2019, p 1). This could lead to a level of expectation that becomes overwhelming for individuals with former substance dependence, particularly as many will have no or inadequate formal education or job experiences and a limited non-​substance using social network. Not only could expectations include stopping the use of illegal substances, but they could require abstention from the use of 42

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legal substances such as alcohol. Expectations of someone’s recovery may also include their participation in a range of new social platforms, including learning institutions and workplaces, and replacing their existing social networks with more socially acceptable ones (Herold and Søgaard, 2019). Meeting such demands would require long-​term efforts for most citizens even without histories of substance use, making the recovery process a challenging one. More research is needed that focusses s on targeting these long-​term trajectories with an incorporated focus on social perspectives and community inclusion. A recent systematic review (Bjornestad et al, 2020) investigated how often outcomes other than changes in substance use are measured in randomised controlled trials for participants in drug treatment. The review found that of the 504 included studies, 42.1 per cent followed participants for 13 weeks or fewer, and only 3.8 per cent of studies followed participants for two years or more. The most common areas of attention were substance use and which forms of substance-​use treatment the participants received. Important factors receiving less attention included social functioning and living conditions. These results led the authors to conclude that there is currently no clear international research consensus about what constitutes long-​term recovery for individuals with substance-​use dependence. This point is underlined by a meta-​analytical review on contingency care management by Blodgett et al (2014), which showed that only eight of the 33 reviewed studies retained patients for 12 months or longer, suggesting that only shorter-​term effects of interventions are measured in most studies on contingency care management. The lack of long-​term recovery studies and a research consensus on what long-​term recovery comprises, has consequences for the development of essential components of successful substance-​use treatment and for the linkage of specific treatment efforts to specific individual development and societal inclusion. Examples of such development could include improvement in the person’s mental health, their involvement in paid labour and the development of a functional social network. Bjornestad et al (2020) recommend development of long-​term studies that investigated both individual and social factors in long-​term recovery processes that, among other things, can be used to inform substance-​use treatments, prevent substance-​use relapses and link specific treatment efforts with community integration. The authors also encourage studies to include individuals with lived experience of substance-​use dependence in developing such knowledge.

The Norwegian Stayer study Efforts have been made in Norway in the recent years to meet the need for long-​term studies on change trajectories for individuals with present or former substance-​use dependence. An example of a comprehensive 43

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study on long-​term change is the one organised by the Centre for Alcohol and Drug Research (KORFOR) in Stavanger University Hospital. The study is called the Stayer study, and it is a ten year longitudinal, prospective follow-​up study with 200 participants. The study started in 2012 and is ongoing. The author of this chapter is responsible for following up 150 of the participants in the Stayer study (Svendsen et al, 2017). The main focus of the study is investigating long-​term individual and social change processes for participants aged 16–​65 years, who are polysubstance users and substance dependent. The participants are recruited from outpatient and residential substance use treatment. The Stayer study has produced insights into such long-​term change processes from individual and social perspectives and, to date, has informed Norwegian treatment services and contributed to the international knowledge base.

Change processes in neurocognitive functions and important life aspects Polysubstance use is associated with neurophysiological and neuroanatomical changes (Moreno-​López et al, 2012) that can affect quality of life, occupational functioning and the ability to benefit from treatment (Burgess et al, 2000; De Maeyer et al, 2010). Using data from the Stayer study, several studies were conducted with the aim of detecting neurocognitive change processes related to substance-​use dependence and treatment efforts. The results are uplifting and can be used to motivate i) treatment services, ii) individuals with substance-​use experiences and dependence, and iii) next of kin who are often impacted by the problematic substance use of someone close to them. The studies so far have investigated: • which clinical measures are the most accurate when assessing patients with substance dependence (Hagen et al, 2016); • how one year of abstinence improves ADHD symptoms among individuals with polysubstance-​use dependence (Hagen et al, 2017a); • how one year of sobriety improves satisfaction with life, executive functions and psychological distress among individuals with polysubstance-​use dependence (Hagen et al, 2017b); • how significant psychiatric symptoms are when measuring cognitive impairment in young adults with polysubstance-​use dependence (Hagen et al, 2019); • why individuals in residential substance-​use-​dependence treatment should be routinely screened for cognitive impairment as such challenges predict drop-​out from treatment (Sømhovd et al, 2019); and • in what ways trajectories of psychological distress occur during recovery from polysubstance-​use dependence (Erga et al, 2020). 44

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The study results referred to are relevant in several aspects of substance-​use treatment. They underline the significance of systematic follow-​up of people using substances and the various psychological and psychiatric functions that are affected by such use. This enables service providers to tailor treatment efforts to respond optimally to an individual’s needs and change processes. This is also important for the often challenging pathway from residential treatment into a life not dominated by substance use (Robertson and Nesvåg, 2018). Several of the studies showed that abstaining from substance use for a period of time in itself leads to improvement in several important aspects of life and helps relieve psychological distress. This knowledge could help people wanting to stop their substance use by emphasising the known positive effects of abstaining from substance use for a period of time.

Studies on full clinical and social recovery Recovery processes commonly demand long periods of time and often involve new, individual life choices and comprehensive changes in substance use. It is important to consider which are the most significant perspectives to take into consideration when such comprehensive life changes are desired? In the Stayer study’s four-​to-​five year follow ups, 30 participants that met the criteria of full clinical and social recovery were recruited through a screening process based on objective criteria for stable substance abstinence and social recovery for a minimum of two years, namely: stable housing and income, having a friend without addiction and involvement with work/​ school. Through qualitative interviews conducted by two clinically recovered service users, the following factors relating to the participants’ recovery processes were investigated: 1. person-​specific factors; 2. environmental factors; and 3. treatment-​related factors. The participants were also asked questions about their experiences of being part of the Stayer study over several years. Svendsen et al (2020) report how participation in the Stayer study had positive connotations for participants’ recovery processes through feedback on data results and ongoing, biweekly SMS (short message service, also known as a mobile phone text message) monitoring: ‘It has been super cool to see. I have taken many of these tests when I used and was intoxicated and everything. And from when I started to get a few months abstinent and meet [the research assistant], and he has told me about the differences between then and now, and my 45

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reaction functions and all this brain stuff. He has showed me results that there is no doubt that it is starting to re-​connect … the system.’ (Svendsen et al, 2020, p 5) An overarching theme across all recovery factors in the 30 qualitative interviews was participants’ retrospective descriptions of change processes lasting several years. Different processes and challenges were described in relation to a number of factors and events, with permanent cessation of substance use as a baseline for the start of most of their stories. Participants described how, at a point in their lives, they had to ‘surrender’ to treatments in the phase following detoxification, with experiences of paranoia, ambivalence and drug cravings, in recognition of the fact that they were not able to change their lives in the directions they desired without professional assistance (Bjornestad et al, 2019a). After a period of time, often described by the participants as an ongoing process over one or several years after detoxification, attention was focused on establishing trusting relationships, integration of new roles, such as that of being an employee, and an appreciation of being accepted and needed: ‘The feeling that I am needed by others, I think that’s important. Because if I feel useless, I act useless. Working with my colleagues has made me take a role at work which makes it easier for me to stay away from drugs. My closest colleagues have meant a lot to me.’ (Bjornestad et al, 2019a, p 5) Close relationships were also described as paramount for participants’ recovery processes in the study, and the roles these relationships played in the recovery course changed over time (Veseth et al, 2019). In the early period after stopping substance use, participants described the importance of social relationships which provide essential stability and support. Many suggested that these relationships took different forms as various recovery processes unfolded, underlining that more knowledge about people’s everyday lives of recovery and the role their social world plays in these processes is needed. Participants described multiple paths of recovery and the diverse roles that people’s close relationships may play. Importantly, Veseth et al (2019, p 11) state: ‘Even though all participants were defined as fully and clinically recovered for a minimum of 2 years, they still described challenges in relation to building a good, meaningful life. We argue that this needs to be taken into consideration both on a community level and in designing health care services.’ Another important aspect of recovery processes identified by the study participants was the perceived benefits of using substances, their need for intense experiences and the personal importance of their being unconventional 46

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members of society (Bjornestad et al, 2019b). Such issues are seldom an integrated part of substance-​use treatment. In the study, the participants underlined how using substances connected people as an important social glue, and how stopping using substances was compared to saying goodbye to an old friend, which was perceived as difficult. Bjornestad et al (2019b, p 1) suggest that the perceived benefits of drug use could be a relevant factor in treatments, to ‘increase the service user’s ability to understand drug use benefits in a wider context –​one that includes downsides, reconcilability with a responsible social life and possible non-​toxic benefit replacements, and hence be of significant clinical value.’

Implications for development of treatment services and future research Reflecting on research presented in this chapter, recovery processes for individuals with substance dependence are characterised by long-​term efforts, often over several years, connected to stopping using substances, staying abstinent and participating in various social arenas in which individuals often lack prior participation and experience. Stopping using substances and staying sober long term is therefore not solely about abstinence, but is clearly linked to changes in self-​identity and the need to find routes back into society as an active, normative citizen. The various routes to long-​term recovery are found and followed over several years. The desired changes in diverse areas of people’s lives, such as employment, housing and social networks, need to be recognised by society as challenging, long-​term processes which can usefully be supported by formal treatment that includes social support following treatment. Further, treatment efforts have traditionally targeted the more acute, basic needs, with a primary focus on abstinence (Kelly, 2017). The integration of activities that promote connection to and involvement in groups in the community, as well as those that promote a sense of purpose, meaning and well-​being, will be an important aspect of treatment development (McKay, 2017). As change processes take time, treatment services should continue developing long-​term follow-​up programmes, because individuals could experience a need for support after formal treatment sequences finish. Factors such as telecommunication, online support and digital intervention seem promising for individuals that experience help needs (Nesvåg and McKay, 2018), alongside contingency care management programmes that can be used for several years if needed (Dennis et al, 2014; McKay, 2009). Although the Stayer study described in this chapter does not have a randomised treatment control or comparison group, it has collected data bi-​ weekly since 2012 and has assessed participants through multiple follow-​up contacts. This permits prospective analysis of trajectories, mechanisms and 47

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mediators that can show how treatment factors shape long-​term outcomes. There is a need for further development of research projects that follow participants over several years in order to build knowledge bridges between treatment efforts and community integration. Long-​term research projects would also demonstrate the impact of long-​term change processes on individuals with substance-​use dependence (Svendsen et al, 2020). If feedback on data is provided and close monitoring and contact between participants and research staff is maintained over longer periods of time. Recruitment of individuals with first-​hand experience with recovery processes after substance-​use dependence is a valuable component of both follow-​up and treatment services and recovery research projects, because their experience facilitates high levels of recognition and trust. Veseth et al (2019, pp 4–​5) elaborate on this theme using interviewers with first-​hand experience of substance use recovery over the same amount of time as the study participants, ‘facilitating an interplay that differed from most traditional interviews’: Participant: Interviewer: Participant: Interviewer:

How long have you been clean? Five years. Me too. That’s a helluva long time, huh? It sure is. But I notice it’s sort of a process. Or that things suddenly dawn on me. Like, ‘Oh, yeah, shit!’ Participant: It’s awesome that you’ve been sober as long as me. You have your things and I have mine. Interviewer: So we’ve both come far. Participant: Yeah. Interviewer: Yeah. And when I’m asked what keeps me from going out and getting high … For example, if I were to lose my job and lose custody of my boy too. What would keep me from going out and getting high then? That’s interesting to think about. Participant: It’s a hard question. Interviewer: Yeah, it is.

Conclusion This chapter has described the diverse, long-​term change processes that are often required when individuals with present or former substance-​use dependence want to develop meaning and purpose in their ongoing lives, illustrated through several examples from the Norwegian Stayer study. A brief summary of the nature and extent of substance use in Norway, the welfare state model and substance-​use treatment and service organisation 48

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in the country was presented, followed by a description and discussion of the multifaceted term ‘long-​term recovery’ linked to substance dependence (Gagne et al, 2007; Leamy et al, 2011) and substance-​use recovery research (Bjornestad et al, 2020). Finally, practical improvements in the field of long-​ term recovery services and research for individuals with both present and former substance-​use dependence were suggested, underlining the need to promote connection to and involvement in groups in the community and activities that promote a sense of purpose, meaning, and well-​being (McKay, 2017). References Bjornestad, J., Svendsen, T.S., Slyngstad, T.E., Erga, A.H., McKay, J.R., Nesvåg, S., Skaalevik, A.W., Veseth, M. and Moltu, C. (2019a) ‘ “A life more ordinary” processes of 5-​year of recovery from substance abuse experiences of 30 recovered service users’, Frontiers in Psychiatry, 10: 689, doi:10.3389/​fpsyt.2019.00689 Bjornestad, B, Veseth, M., Berg, H., Davidson, L., Mckay, J.R., Moltu, C., Skaalevik, A.W., Slyngstad, T.E., Svendsen, T.S. and Nesvåg, S. (2019b) ‘Reports of the benefits of drug use from individuals with substance use disorders’, Psychotherapy Research, 30(6): 718–​27. Bjornestad, J., McKay, J.R., Berg, H., Moltu, C. and Nesvåg, S. (2020) ‘How often are outcomes other than change in substance use measured? A systematic review of outcome measures in contemporary randomised controlled trials’, Drug Alcohol Review, 39(4): 394–​414. Blodgett, J.C., Maisel, N.C., Fuh, I.L. and Wilbourne, P.L. (2014) ‘How effective is continuing care for substance use disorders? A meta-​analytic review’, Journal of Substance Abuse Treatment, 46(2): 87–​97. Burgess, A., Carretero, M., Elkington, A., Pasqual-​Marsettin, E., Lobaccaro, C. and Catalan, J. (2000) ‘The role of personality, coping style and social support in health-​related quality of life in HIV infection’, Quality of Life Research, 9(4): 423–​37. De Maeyer, J., Vanderplasschen, W. and Broekaert, E. (2010) ‘Quality of life among opiate-​dependent individuals: A review of the literature’, The International Journal on Drug Policy, 21(5): 364–​80. Dennis, M.L., Scott, C.K., and Laudet, A. (2014) ‘Beyond bricks and mortar: Recent research on substance use disorder recovery management’, Current Psychiatry Reports, 16(4): 442. Dølvik, J.E. and Martin, A. (eds) (2015) European Social Models from Crisis to Crisis: Employment and Inequality in the Era of Monetary Integration, Oxford: Oxford University Press. EMCDDA (2019) Norway Drug Report 2019, EMCDDA, available online from: https://​www.emcdda.europa.eu/​system/​files/​publications/​11348/​ norway-​cdr-​2019_​0.pdf 49

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Erga, A.H., Hønsi, A., Anda-​Ågotnes, L.G., Nesvåg, S., Hesse, M. and Hagen, E. (2020) ‘Trajectories of psychological distress during recovery from polysubstance use disorder’, Addiction Research and Theory, 29(1): 64–​71. Fomiatti, R., Moore, D. and Fraser, S. (2019) ‘The improvable self: Enacting model citizenship and sociality in research on ‘new recovery’, Addiction Research and Theory, 27(6): 527–​38. Gagne, C., White, W. and Anthony, W.A. (2007) ‘Recovery: A common vision for the fields of mental health and addictions’, Psychiatry Rehabilitation Journal, 31(1): 32–​7. Hagen, E., Erga, A.H., Hagen, K.P., Nesvåg, S.M., McKay, J.R., Lundervold, A.J. and Walderhaug, E. (2016) ‘Assessment of executive function in patients with substance use disorder: A comparison of inventory-​and performance-​ based assessment’, Journal of Substance Abuse Treatment, 66: 1–​8. Hagen, E., Erga, A.H., Nesvåg, S.M., McKay, J.R., Lundervold, A.J. and Walderhaug, E. (2017a) ‘One-​year abstinence improves ADHD symptoms among patients with polysubstance use disorder’, Addiction Behaviour Reports, 6: 96–​101. Hagen, E., Erga, A.H., Hagen, K.P., Nesvåg, S.M., McKay, J.R., Lundervold, A.J. and Walderhaug, E. (2017b) ‘One-​year sobriety improves satisfaction with life, executive functions and psychological distress among patients with polysubstance use disorder’, Journal of Substance Abuse Treatment, 76: 81–​7. Hagen, E., Sømhovd, M., Hesse, M., Arnevik, A. E., Erga, H. A. (2019) ‘Measuring cognitive impairment in young adults with polysubstance use disorder with MoCA or BRIEF-​A: The significance of psychiatric symptoms’, Journal of Substance Abuse Treatment, 97: 21–​7. Herold, M.D. and Søgaard, T.F. (2019) ‘Disturbing the “spoiled-​unspoiled” binary: Performances of recovering identities in drug-​experienced youths’ friendship narratives’, Addiction Research and Theory, 27(3): 226–​34. Hustvedt, I.B., Bosnic, H. and Håland, M.E. (2020) Brukere med rus-​og psykiske helseproblem i norske kommuner (Brukerplan –​statistikk 2019) (‘Statistics on substance abuse in Norway’), Stavanger: KORFOR. Kelly, J.F. (2017) ‘Tens of millions successfully in long-​term recovery –​let us find out how they did it’, Addiction, 112(5): 762–​3. Klingemann, H. and Sobell, L.C. (2007) Promoting Self-​Change from Addictive Behaviors: Practical Implications for Policy, Prevention, and Treatment, Boston, MA: Springer-​Verlag US. Leamy, M., Bird, V., Le Boutillier, C., Williams, J. and Slade, M. (2011) ‘Conceptual framework for personal recovery in mental health: Systematic review and narrative synthesis’, British Journal of Psychiatry, 199(6): 445–​52. McKay, J.R. (2009) Treating Substance Use Disorders with Adaptive Continuing Care, Washington, DC: American Psychological Association.

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McKay, J.R. (2017) ‘Making the hard work of recovery more attractive for those with substance use disorders’, Addiction, 112(5): 751–​7. Moreno-​López, L., Stamatakis, E.A., Fernández-​Serrano, M.J., Gómez-​ Río, Rodríguez-​Fernández, M.A., Pérez-​García, M. and Verdejo-​ García, A. (2012) ‘Neural correlates of hot and cold executive functions in polysubstance addiction: Association between neuropsychological performance and resting brain metabolism as measured by positron emission tomography’, Psychiatry Research: Neuroimaging, 203(2): 214–​22. Mudry, T., Nepustil, P. and Ness, O. (2019) ‘The relational essence of natural recovery: Natural recovery as relational practice’, International Journal of Mental Health Addiction, 17(2): 191–​205. Nesvåg, S. and Lie, T. (2010) ‘The Norwegian substance treatment reform: Between new public management and conditions for good practice’, Nordic Studies on Alcohol and Drugs, 27: 655–​66. Nesvåg, S. and McKay, J.R. (2018) ’Feasibility and effects of digital interventions to support people in recovery from substance use disorders: Systematic review’, Journal of Medical Internet Research, 20(8), e255, doi:10.2196/​jmir.9873 NOU (2019) Rusreform –​fra straff til hjelp. Oslo: Helse –​og omsorgsdepartementet. Norwegian Government (2016) Opptrappingsplanen for rusfeltet (2016–​ 2020) (‘The escalation plan for the drug field’). Prop. 15 S. Oslo: Helse-​ og omsorgsdepartementet. Price-​Robertson, R., Obradovic, A. and Morgan, B. (2016) ‘Relational recovery: Beyond individualism in the recovery approach’, Advances in Mental Health, 14: 1–​13. Robertson, I. and Nesvåg, S. (2018) ‘Into the unknown: Treatment as a social arena for drug users’ transition into a non-​using life’, Nordic Studies on Alcohol and Drugs, 36(3): 248–​66, doi:10.1177/​1455072518796898# Slade, M. (2009) Personal Recovery and Mental Illness: A Guide for Mental Health Professionals, Cambridge: Cambridge University Press. Sømhovd, M., Hagen, E., Bergly, T. and Arnevik, E.A. (2019) ‘The Montreal Cognitive Assessment as a predictor of dropout from residential substance use disorder treatment’, Heliyon 7; 5(3): e01282, doi:10.1016/​ j.heliyon.2019. Svendsen, T.S., Erga, A.H., Hagen, E., McKay, J.R., Njå, A.L.M., Årstad, J. and Nesvåg, S. (2017) ‘How to maintain high retention rates in long-​ term research on addiction: A case report’, Journal of Social Work Practice in the Addictions, 17(4): 374–​87. Svendsen, T.S., Bjornestad, J., Slyngstad, T.E., McKay, J.R., Skaalevik, A.W., Veseth, M., Moltu, C. and Nesvåg, S. (2020) ‘ “Becoming myself ”: How participants in a longitudinal substance use disorder recovery study experienced receiving continuous feedback on their results’, Substance Abuse Treatment Prevention Policy,15(1): 8, doi:10.1186/s​ 13011-0​ 20-0​ 254-x​ 51

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Veseth, M., Moltu, C, Svendsen, T.S., Nesvåg, S., Slyngstad, T.E., Skaalevik, A.W. and Bjornestad, J. (2019) ‘A stabilizing and destabilizing social world: Close relationships and recovery processes in SUD’, Journal of Psychosocial Rehabilitation and Mental Health, 6(1): 93–​106.

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5

Provider and user perspectives on long-​term recovery in England: how do we know when we are done? Maike Klein and John Hill

Introduction This chapter is reflective in nature and aims to demonstrate the dynamic, non-​linear and complex trajectories involved in the journey towards long-​ term recovery from substance misuse.1 The authors first discuss some of the challenges in identifying and analysing long-​term recovery. They then present two real-​life examples of people with lived experience of long-​term recovery and offer clinical reflections on these. The chapter ends with a discussion of these case examples and their limitations, offering recommendations for future research and a way forward that is more sensitive to the needs of people in long-​term recovery.

Context Substance misuse continues to pose a risk to public health and the safety of people living in the United Kingdom (UK). The 2019 European Drug Report indicated that treatment entrants for opiate and crack cocaine clients in the UK have recently increased (EMCDDA, 2019). In 2019, the UK had the highest overdose mortality rate in Europe (National Records of Scotland, 2019). Although this information does not provide a complete picture of the drug situation, it could indicate that drug treatment providers are struggling to keep up with the British government’s target of ‘increas[ing] the rate of individuals recovering from their dependence’ (H.M. Government 2017, p 6). This shows that there remains a need for the scientific community to focus on recovery from substance misuse and its various trajectories and manifestations. Traditionally, recovery has been analysed and understood by addiction science as either the non-​use of substances or the absence of symptoms relating to addictive behaviours; in other words, as a quantifiable treatment outcome (Ashford et al, 2018). However, Brown and Ashford (2019, 53

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p 2) argue that ‘the absence of pathology reveals little information about the initialisation and sustainment of recovery’. In other words, the traditional way of studying recovery from substance misuse predominantly involves studying causes and effects of the substance-​use disease (that is, pathology), which has reduced our understanding of recovery as being the absence of substance-​misuse symptoms (Brown and Ashford, 2019). When, for example, an individual with co-​occurring substance misuse and mental health issues stops using substances, they may still suffer from mental health issues which might make it hard to consider them as recovered. As such, this way of defining recovery poses a challenge for identifying, analysing and exploring long-​term recovery (LTR). For instance, it accounts for neither the changes made by a person with lived experiences (PWLE) outside of treatment parameters, such as having gained new employment, nor for lapse/​relapse experiences, which arguably play an important part in the journey to LTR. Relapse is commonly identified as the resumption of drug-​using behaviour after periods of abstinence/​reduction (Hendershot et al, 2011), and has been recognised to increase the propensity for drug-​ overdose death (Chalana et al, 2016). The likelihood of a PWLE relapsing back into Class A2 substance misuse lies between 50 and 80 per cent during the first 12 months after exiting treatment (Pasareanu et al, 2016; Klein, 2020). Therefore, our collective understanding of LTR must be sensitive to these challenges. Additionally, the person presenting back to a service upon having relapsed is not traditionally viewed as ‘in recovery’ but as ‘back to misuse’ and starting the treatment cycle again. For instance, local treatment services in England are eager to obtain positive treatment outcome data, as recorded by the Treatment Outcome Profile (TOP) form, to aide in their bidding competition for financial support (Mohammadi, 2014; Drummond, 2017). However, their data counts PWLE who have been discharged for at least six months and have not re-​presented to the service as ‘recovered’. Identifying those who re-​present to a service, whether due to lapse or relapse or other circumstances, as ‘not in recovery’ may seriously undermine their recovery efforts pre-​relapse (Klein, 2020). As such, this approach seems to skew the collection and production of statistical treatment outcome data. A contrasting approach involves exploring the subjective recovery accounts of PWLE, with recovery scientists evidencing that recovery is indeed a process spanning over multiple life ecologies and involving various interpersonal dimensions (that is, between people, such as socio-​cultural or systemic dimensions) and intrapersonal dimensions (that is, within people, such as psychological or spiritual dimensions) (see Laudet, 2007; Flaherty et al, 2014; Neale et al, 2015). This understanding was developed through pioneering works of recovery-​oriented systems of care (ROSC) and recovery-​identity models. ROSC are ‘networks of organisations, agencies, and community members that coordinate a wide spectrum of 54

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services to prevent, intervene in, and treat substance use problems and disorders’ (Sheedy and Whitter, 2013, p 227). This approach to recovery was introduced by White (2008) to better facilitate the transition from a person’s state of illness (addiction) to a state of health (recovery) and as an alternative to acute care treatment (that is, detox by professionals or in hospitals). Recovery-​identity models offer frameworks for understanding the individual-​and group-​level changes in identity which are experienced, sometimes even desired, by people who seek recovery from substance misuse. Evidence on this subject was first generated by McIntosh and McKeganey (2000), and was further developed into the social-​identity model of cessation maintenance (SIMCM; see Frings and Albery, 2015) and the social-​identity model of recovery (see Best et al, 2016). These conceptualisations of recovery have been found to be more useful in the quest to understand LTR. As has become evident, objectifying recovery as an outcome variable hinders us from identifying the processes of LTR, a phenomenon in which the lines between wellness (that is, recovery) and pathology (that is, substance misuse) become blurry. To illustrate this further, the authors now present two contrasting clinical case studies from their real-​life practice and then offer their clinical reflections, supporting their argument that it is important to consider LTR from the perspective of PWLE when developing scientific judgements.

How is long-​term recovery experienced? Insights from clinical case examples The intention of this section is to encourage the reader to consider how LTR might be understood by PWLE. Both authors (MK, JH) are, at this time, certified drug and alcohol practitioners and have experience of therapeutic work within drug and alcohol treatment services, nationally as well as internationally. The following case examples were taken from one-​to-​one client work within an independent charity in South West England. Both clients were asked for permission to use their case for the purposes of this book and provided their informed consent. All identifying information has been anonymised, including the use of pseudonyms instead of real names and changing some of the biographical details. Case Example 1: Timothy The person Timothy first engaged with our service in 2017 after a recommendation from a client that had previously attended the service. He was in his late 20s, had a young daughter and had been with his partner, the mother of his daughter, for approximately eight years. He was self-​employed and had 55

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just started running his own business locally. He was very actively involved in playing football and considered himself very sociable. Timothy had been engaging in prolonged, heavy use of alcohol since he was 13 years of age, and began using cocaine when he was 19 years old. He further reported that he had previously made two suicide attempts. His persistent and prolonged alcohol and substance use led to numerous conflicts with his partner. She and her daughter moved out as she was no longer prepared to put up with the conflict and his ongoing behaviour. After another prolonged binging session, Timothy felt suicidal again, which led him to phone his parents. He was taken to a private clinic for an immediate detox. Timothy explained that after completing his detox he had been unable to access continuing psychological support following his time at the clinic, as neither he nor his family could afford this option, and he therefore sought help from our service. When he engaged with our service, his anxiety levels were high as he was very concerned about relapsing back into his previous behaviours. His motivations to remain abstinent included a history of depression, his fragile relationship with his partner and daughter, the risk that his new business would collapse and his inability to engage in leisure activities such as football. The start of his recovery When first seen, Timothy had been free from all drugs for one week and agreed to work on relapse prevention with us. This included the areas that he would like to address first, in order of importance to him. He chose to focus initially on his worries about his daughter. He considered what home life would be like for a child if the parents were arguing or shouting. Together we looked for conflict resolution skills and how he could deal with conflict more effectively. His first goal was therefore to discuss with his partner how best to handle future conflict without affecting their daughter. Next, we looked at what he could do to improve the quality of his own life without alcohol and cocaine. We examined what substance use had stripped away from his life over the years and what he could now regain. The issue of regular routines around sleep, eating and parenting was also discussed. Over the weeks and months of working with us, Timothy started to make improvements and his confidence grew. After a period of time, we worked through decisional balance, which looks at the positives of abstaining from substances (for example, what differences it made to him and his family, what he was observing that was different about himself and what others were noticing about him) versus what he missed about those substances. Within a short period of time, Timothy came up with ten positive statements about what his life would look like without alcohol and cocaine. 56

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Life in long-​term recovery Timothy has been free from all substances since he left our service in 2017, having received 13 sessions. Every six months since, he has been sending us a check-​up text message to share his recovery progress with us. Timothy lapsed once when he consumed alcohol and cocaine at a party with his work colleagues. This led him to a relapse for a period of 3 weeks, for which he pursued community detox (that is, self-​detox under professional supervision). Timothy was able to resolve this incident, without any other additional help, by adhering to a strict routine of gradual reduction and detox and by speaking with his partner, a support worker and us. Timothy shared that his partner and daughter subsequently moved back in with him and that they continue to work on their relationship (for instance, how they communicate and resolve conflict with each other). Timothy explained that he has also been able to spend more time doing things with his daughter, such as baking together or reading her stories. Further, Timothy has established a routine for himself involving getting up at 5 am to exercise at the local gym. He said that he would like to become a football coach for his local team. Additionally, Timothy’s business has been going well, as he is able to concentrate and follow through on work. Timothy has also been able to re-​engage with some old friends that he had lost over the years due to his drinking and cocaine use. He added: “I can still be sociable even without alcohol and cocaine.” Lastly, Timothy has started to take a craftsman course, which has been his dream, and he has started to read more books. In conclusion, Timothy’s recovery has not miraculously taken away the challenges in his life, but it has given him a space to learn, grow and develop positive changes which help him overcome his challenges. Case Example 2: Rachel The person Rachel was referred to us by her general practitioner (GP) in 2017. She was in her mid 60s and retired on medical grounds. Rachel had been diagnosed with severe obsessive compulsive disorder (OCD) and explained to us that she felt the need to control her life routines, which included alcohol intake and sleep patterns. She explained that she goes to sleep at 7 am and wakes up around noon to start off her day. According to Rachel, this behaviour was further exacerbated by anxiety and fear around pleasing others in her life. Rachel had a long-​term history of alcohol dependence from her early 20s onwards. When we first met Rachel, her alcohol intake was approximately 140 units per week. We further identified that her irregular sleep patterns stem from her fear of “dying while sleeping”. For instance, Rachel would not go to bed if the weather was bad, such as during a thunderstorm, because 57

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of a fear that lightning would strike and kill her. Rachel’s OCD played an important role in her decision to start drinking large amounts of alcohol. However, she had begun to recognise that this affected other areas of her life, such as her finances and health. She expressed a desire to change but was reluctant to believe that she could achieve this. The start of her recovery Due to Rachel’s high weekly alcohol intake, we agreed to start working towards a slow reduction in her alcohol units. She decided to do this first in view of the risk to her physical health. Rachel indicated that changing her drinking behaviour was important to her because of concern for her own safety and the safety of her family members (through drink driving, for example). We then examined what would encourage her to grow in confidence around change (self-​efficacy). Rachel also voiced that, due to her OCD diagnosis, she was quite particular around what she drank, the precise amounts she drank and the starting and finishing times of her drinking. We agreed that her not being confident in changing but knowing that it was important was going to be the motivation behind our work. We began by highlighting Rachel’s strengths, which included attention to detail, planning skills and being disciplined. Next, based on the idea that alcohol was an acquired taste for her, she decided to work on ‘acquiring’ a taste for something with a lower alcohol content. Within a few weeks, she had reduced her alcohol intake by about 10 per cent. This had the effect of slowly boosting her confidence. We then involved her attention to detail by encouraging her to measure her alcohol intake (for instance by using a pub measure). Rachel decided to buy a measure for herself and started to regularly measure her alcohol intake at home. Lastly, we considered her irregular sleeping pattern. Rachel explained that, due to the hot summer weather, she had moved her mattress downstairs in her house, as it was cooler than the upstairs. This meant that the downstairs room, which she had associated with drinking, was no longer available to drink in as it had now become her bedroom. This action also encouraged Rachel to go to bed earlier, which allowed her to sleep longer. She commented that it “challenged the assumption that I have to drink a certain amount at certain times”. These small victories sparked her motivation and confidence towards making further changes towards alcohol reduction. Life in long-​term recovery Rachel is now in her third year of recovery, is drinking approximately four units of alcohol per week and is considering reducing further. She continues

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to send us text messages every nine months. She has been measuring her alcohol intake, feeling less anxious and fearful of sleeping at night, and has been able to have the energy to engage with her family and friends. She further explained that, due to her alcohol reduction, she has been saving about £240 a month. The last message she sent us included the following statement: ‘Something else remarkable has happened, I no longer have trouble with my arthritis, I don’t feel a thing, it’s gone.’ As has become evident, her recovery work was effective because of two factors: a change of circumstances that interrupted her set routine and way of thinking, and her growing confidence in believing and experiencing that change was possible.

Clinical reflections Working with these two individuals has demonstrated that LTR is perceived and explored differently by different people. In each of these presented case studies, the practices or features that these people added to their lives supported long-​term change. For Timothy, LTR involved abstinence, a lapse/​relapse, improving his relationship with his partner and child, building a healthy routine of exercise, time with his friends and thriving in his new business. For Rachel however, LTR involved reduced amounts of drinking, better sleeping patterns, less anxiety and improved self-​efficacy. These differences mean that it is difficult to categorise or label LTR without exploring the lived experiences and interpretations of those who self-​identify as being in LTR. Recovery may be in the language we use as professionals, but it isn’t necessarily used in the language of those that we support. For example, Timothy once asked us: “Am I an addict/​alcoholic?” We asked him why he thought that he might be and how much he was using/​drinking. Timothy replied that he was not using or drinking anymore. We asked again if he thought that label applied to him now, and after a short pause he said, “No, I guess not.” The same is true for LTR. Both, Timothy and Rachel have been working on their life choices for over three years now, but have not once identified themselves as ‘being in long-​term recovery’. When we asked Timothy what being recovered means to him, he provided the analogy of a broken down car which received a vehicle-​recovery service and is now back on the road again. He further said that it is not about an outsider fixing his car but about a beneficial change that can help him fix the car himself. As professionals in the supporting role, we must carefully consider whether or not being in recovery, being in LTR or being still in recovery implies that another breakdown will happen. If so, we need to ask ourselves whether labelling PWLE in this way, without asking them for their personal opinion, is useful or not.

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Discussion This chapter set out to demonstrate that LTR is experienced in a variety of ways, thereby challenging the assumption that our understanding of LTR, or of recovery in general, can be reduced to one particular definition. The chapter began by identifying some of the challenges for robustly analysing and investigating LTR. Historically, recovery from substance misuse has been framed as a treatment outcome or as the absence of addictive behaviours, which neglects the dynamic processes involved. This way of understanding recovery also challenges the collective understanding of LTR. The chapter then presented two case studies from clinical work with people in LTR and offered clinical reflections from a service provider perspective. In both cases, recovery was fostered through an improvement of key personal and social resources and vice versa. For example, both cases illustrated an improvement in relationships (for example with a child and spouse), in self-​actualisation (engaging in a steady job for instance) and in physical as well as mental health (for example better sleep and less anxiety). These life improvements in turn fostered the maintenance of the individual’s LTR. The literature refers to resources which help an individual overcome their substance misuse as ‘recovery capital’ (Granfield and Cloud, 1999). Recovery capital has been identified as a strong indicator of a person having overcome substance misuse and of their maintaining recovery without any engagement in treatments or services. Granfield and Cloud (2001) referred to this type of recovery as ‘natural recovery’. Granfield and Cloud (2001) argued that natural recovery will most likely be chosen by those individuals who already possess stable social capital (family relationships, for example) at the onset of their substance misuse. Therefore, although our case studies draw on experiences from individuals within a service context, they demonstrate a strong resonance with the recovery experiences of people who did not engage in services. In terms of recovery dynamics, it may not be very relevant whether the PWLE has chosen to engage with recovery services or not. Lastly, the case studies highlighted that the use of language such as ‘being done’ or ‘being in recovery’ might not necessarily fit the experiences of people in recovery. In summary, these case studies illustrate that LTR is experienced uniquely and differently by individuals, and may entail setbacks, relapse, comebacks and victories. As such, people in LTR could be viewed as sojourners who, along their path, put stakes in the ground to mark meaningful experiences. Hence, to prevent our scientific understanding from objectifying LTR, which has proven to be rather subjective, relational and context specific, a paradigm shift may need to be facilitated. Brown and Ashford (2019) have argued that such a paradigm shift could be kick-​started by scientists adopting 60

Provider and user perspectives Figure 5.1: Framework for the recovery-​informed approach

Source: Printed with permission from Austin M. Brown and the Kennesaw State University Centre for Young Adult Addiction and Recovery

a recovery-​informed approach (see Figure 5.1) and by their beginning to view recovery as an independent science that needs its own methodology. They assert that ‘to best facilitate recovery, and research concerned with the process of recovery, it is important to have an interdisciplinary approach that considers cultural factors, psychological factors, sociological factors, medical variables, and neuroscience’ (Brown and Ashford, 2019, p 9). It may be best practice to start investigating recovery from a user perspective and to consider user-​led interpretations before making more general claims about LTR. Therefore, future research on LTR would benefit from exploring not only lived experiences of recovery but also those of people who are directly impacted by these experiences, such as immediate family members or support workers. One way in which this could be done is via the employment of experiential, qualitative research designs, such as multi-​perspectival interpretative phenomenological analysis (IPA). This particular design ‘retains a commitment to idiography in data collection and analysis but extends this by combining two or more focal perspectives, permitting us to consider the relational, intersubjective, and microsocial dimensions of a given phenomenon’ (Larkin et al, 2019, p 183). Employing such a design for research on LTR would allow us to construct a more comprehensive understanding of the processes as well as of the people involved. 61

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Another way in which this could be done is via the direct or indirect involvement of PWLE in research. For instance, PWLE could be asked to collaborate with a research team by being part of their steering group and being part of the team that develops ideas and makes relevant decisions. Additionally, PWLE could be part of the research team by helping collect and analyse data. Conclusively, we call on scholars, scientists and practitioners to consider seeking to understand LTR, rather than categorising or measuring it, from the multiple perspectives of all of those involved. This collective knowledge will then be useful in building a stronger, more accurate and more compassionate evidence base for LTR, all of which will help improve local policy and treatment services. Limitations Although the intention of this chapter is to offer a reflective commentary on how LTR is perceived by PWLE, rather than empirical data, the reader is encouraged to bear several limitations in mind: Firstly, the validity of the presented case studies and reflections could be questioned. These studies were selected with the aim in mind of illustrating two different perspectives on LTR. They were written up with the help of clinical case records, and were selected from a wide range of potential cases who were familiar to both authors and from clients who were prepared to provide informed consent for their stories to be published in this book chapter. Secondly, these case studies do not offer sufficient evidence to make general claims about LTR experiences. The authors acknowledge that these two case illustrations, which focussed on alcohol and cocaine misuse experiences, do not necessarily speak for other alcohol and cocaine users, and cannot speak for PWLE of addictive behaviours or other drugs, such as smoking. However, the intention was not to generalise these experiences but to promote transferability through which the reader is encouraged to use their own judgement on how these illustrations can fit with their professional experience and the wider literature.

Conclusion In the battle against substance misuse, the scientific understanding of LTR seems to have become disconnected from actual LTR experiences. To restore this connection, and thereby advance our scientific understanding, we must give up objectifying LTR and instead become curious about the perspectives of people with lived experiences. We need to ask our clients about their interpretations and understandings of the processes involved before assuming that we know what they need to do or what is best for them. Such an 62

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approach may involve starting with what we know from experience (that is, asking about lived experiences), then synthesising this into robust knowledge and theoretical orientations and lastly operationalising this in a way that is useful for treatment and support services. Such a recovery-​informed approach is likely to yield more developed and person-​centred evidence and lead to an approach that is more sensitive to the needs of people in LTR. Notes Parts of this chapter were directly taken from one of the author’s (MK) doctoral thesis, which will be publicly available on the University of Bath’s online repository ‘Pure’ on substance misuse relapse. 2 Class A drugs are organised by the Misuse of Drugs Act 1971 and include heroin, methadone, cocaine (including crack cocaine), ecstasy, magic mushrooms and crystal meth. See www.release.org.uk 1

References Ashford, R.D., Brown, A., Brown, T., Callis, J., Cleveland, H.H., Eisenhart, E., Groover, H., Hayes, N., Johnston, T., Kimball, T. and Manteuffel, B. (2018) ‘Defining and operationalizing the phenomena of recovery: A working definition from the recovery science research collaborative’, Addiction Research and Theory, 27(3): 179–​88. Best, D., Beckwith, M., Haslam, C., Alexander Haslam, S., Jetten, J., Mawson, E. and Lubman, D.I. (2016) ‘Overcoming alcohol and other drug addiction as a process of social identity transition: The social identity model of recovery (SIMOR)’, Addiction Research and Theory, 24(2): 111–​23. Brown, A.M. and Ashford, R.D. (2019) ‘Recovery-​informed theory: Situating the subjective in the science of substance use disorder recovery’, Journal of Recovery Science, 1(3): 1–​15. Chalana, H., Kundal, T., Gupta, V. and Malhari, A.S. (2016) ‘Predictors of relapse after inpatient opioid detoxification during 1-​year follow-​up’, Addiction, 6: 1–​7, doi:10.1155/​2016/​7620860 Drummond, C. (2017) ‘Cuts to addiction services are a false economy’, British Medical Journal, 357, j2704, doi:10.1136/​bmj.j2704 EMCDDA (2019) European Drug Report 2019: Trends and Developments, Luxembourg: Publications Office of the European Union. Flaherty, M.T., Kurtz, E., White, W.L. and Larson, A. (2014) ‘An interpretive phenomenological analysis of secular, spiritual, and religious pathways of long-​term addiction recovery’, Alcoholism Treatment Quarterly, 32(4): 337–​56. Frings, D. and Albery, I.P. (2015) ‘The social identity model of cessation maintenance: Formulation and initial evidence’, Addictive Behaviors, 44: 35–​42. Granfield, R. and Cloud, W. (1999) Coming Clean: Overcoming Addiction without Treatment, New York: New York University Press. 63

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Granfield, R. and Cloud, W. (2001) ‘Social context and “natural recovery”: The role of social capital in the resolution of drug-​associated problems’, Substance Use and Misuse, 36(11): 1543–​70. H.M. Government (2017) Drug Strategy 2017, London: H.M. Government. Hendershot, C.S., Witkiewitz, K., George, W.H. and Marlatt, G.A. (2011) ‘Relapse prevention for addictive behaviors’, Substance Abuse Treatment, Prevention, and Policy, 6(1): 1–​17, doi:10.1186/​1747-​597X-​6-​17. Klein, M. (2020) ‘Relapse into opiate and crack cocaine misuse: A scoping review’, Addiction Research and Theory, 29(2): 129–​47, doi:10.1080/​ 16066359.2020.1724972 Larkin, M., Shaw, R. and Flowers, P. (2019) ‘Multiperspectival designs and processes in interpretative phenomenological analysis research’, Qualitative Research in Psychology, 16(2): 182–​98. Laudet, A.B. (2007) ‘What does recovery mean to you? Lessons from the recovery experience for research and practice’, Journal of Substance Abuse Treatment, 33(3): 243–​56. McIntosh, J. and McKeganey, N. (2000) ‘Addicts’ narratives of recovery from drug use: Constructing a non-​addict identity’, Social Science and Medicine, 50: 1501–​10. Mohammadi, D. (2014) ‘Addiction services in England: In need of an intervention’, The Lancet Psychiatry, 1(6): 421–​2. National Records of Scotland (2019) Drug Related Deaths in Scotland in 2018 National Records of Scotland, 16 July, available online from: https://​www. nrscotland.gov.uk/​statistics-​and-​data/​statistics/​statistics-​by-​theme/​vital-​ events/​deaths/​drug-​related-​deaths-​in-​scotland Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T. and Strang, J. (2015) ‘ “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery’, Drugs: Education, Prevention and Policy, 22(1): 26–​34. Pasareanu, A.R., Vederhus, J.-​K., Opsal, A., Kristensen, Ø. and Clausen, T. (2016) ‘Improved drug-​use patterns at 6 months post-​discharge from inpatient substance use disorder treatment: Results from compulsorily and voluntarily admitted patients’, BMC Health Services Research, 16(1): 291. Sheedy, C.K. and Whitter, M. (2009) ‘Guiding principles and elements of recovery-​oriented systems of care: What do we know from the research?’ HHS Publication No. (SMA) 09-​4439. Rockville, MD: Center for Substance Abuse Treatment, Substance Abuse and Mental Health Services Administration White, W.L. (2008) Recovery Management and Recovery-​Oriented Systems of Care (vol 6), Chicago: Great Lakes Addiction Technology Transfer Center, Northeast Addiction Technology Transfer Center and Philadelphia Department of Behavioral Health and Mental Retardation Services.

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PART II

Intimate relationships, trauma and long-​term recovery

In Part II of this book we delve deeply into the lives of people with lived experience of substance use and histories of complex, often highly abusive close relationships. Because of this, it comes with a health warning; some of the data and voices contained within these chapters are deeply personal, sensitive, powerful and moving. We have utmost respect for the people who spoke out about their experiences and the researchers who enabled discussions that are not often heard in research on this topic, if at all. In Chapter 6 the focus is on the impact of substance use on the longer-​term recovery of people’s sexual selves. The authors graphically highlight how sexuality and sexual activity are experienced under the influence of drugs, and the fear, guilt, loss and shame people experience when the drugs are no longer there. Both men and women discuss their ignorance of sexuality and sexual performance when substance free, and the associated fear that they cannot perform sexually or have ‘normal’ sexual relationships. The authors emphasise the need for treatment services to include discussion of sexuality to help people to overcome the ‘sexual stigma’ of drug use and the limited and limiting ‘sexual script’ relating to substance use and sexuality. In Chapter 7 the authors introduce the centrality of trauma to women’s experience of substance use and long-​term recovery. In a powerful and moving pen portrait of ‘Laura’, the authors highlight the complexities of substance use recovery when combined with recovery from violent victimisation. The recovery from violence and abuse becomes an ‘additional dimension’ to Laura’s long-​term recovery process. Indeed, they challenge the limiting notions some definitions place on long-​term recovery, pointing out that for someone with a 50-​year history of using substances, three years is a very long recovery period. It is important for practitioners, they state, to engage with the potential ongoing trauma women with such experiences face, and to understand that substance use can be a coping mechanism which should be removed with care and with support in place. Chapter 8 places women partners of people using substances at the core of the chapter. The authors discuss the impact of being in a relationship with someone in long-​term recovery and how, as partners, they influence, and can be influenced by, their substance using partner. They remind us how long-​term recovery is not only 65

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about individuals but also those close to them who experience that recovery process with them. Through narration by Anna and Maria, the authors present some deeply person examples of stories and scripts, demonstrating the fluidity and highly contextual nature of the two women’s experiences and their interpretations of how to live with someone in long-​term recovery and cope with the highs and lows this brings. The final chapter in this part is Chapter 9. The authors focus on the testimonies of adults whose childhood involved living with the impact of parental substance on their adult selves. We hear testimony from six adults about the anxiety, isolation and lack of self-​esteem that followed them through adolescence into adulthood as a result of living with a parent using substances problematically. We also hear of their determination to address that emotional and psychological damage through counselling, psychotherapy, 12-​step fellowships and support in order to avoid negatively influencing their own children and family members.

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6

Women’s and men’s stories about sex and intimate relationships in long-​term recovery from problematic drug use Anette Skårner and Bengt Svensson

Introduction ‘I think that I associate sex with that dirty, strange world. That it’s something you did then and there. For me it is connected with drug use.’ (Ulla) These words belong to Ulla, who, after many years of problematic drug use, lives an ‘ordinary’ life without drugs. They illustrate how the transition from the subcultural drug context into life in mainstream society can be complex with regard to sex and intimate relationships. A large body of research has highlighted the role of personal relationships in recovery (see Biernacki, 1986; McIntosh and McKeganey, 2001). However, despite the fact that sexuality is a core aspect of being human, scant attention has been paid to how sexual practice is experienced and played out in the lives of recovering users. Drawing from accounts of people who, like Ulla, have left drug use behind, this chapter aims to deepen our understanding of sexuality throughout the recovery process. Some preliminary implications for how sexuality can be addressed in drug treatment are also discussed. This chapter is based on a qualitative study, conducted in Sweden, of sexuality, intimate relationships and drugs in the context of long-​term recovery from problematic drug use. The overarching long-​term goal for Sweden’s drug policy is ‘a drug-​free society’ (Government Office of Sweden, n.d.), and all handling of illicit drugs, including own use, is criminalised. Drug treatment is free of charge for the client and includes various forms of psychosocial treatment, often based around 12-​step models, as well as opioid substitution treatment (OST). Although poly-​drug use is common in Sweden, amphetamine is the dominant stimulant used, and heroin is the most used opioid.

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The study: data and analytic framework A total of 35 individuals (19 men and 16 women) were interviewed, constituting a varied sample in terms of experiences of drug use as well as general life circumstances. The participants were aged between 21 and 63 years old, and their time period of problematic drug use ranged from three to 37 years, most of them having used drugs for more than eight years. Twenty-​two of the participants had used amphetamine or other stimulants as their main drug, while 13 had primarily used heroin. The time span that had elapsed since their last previous drug use varied between 1.5 to 13 years. All described their recovery as stable, and they all now lived in their own homes. All the participants identified as heterosexual, and ten of the men and nine of the women were in relationships. The purpose of the interviews was to capture the participants’ constructions of meaningful sexual practice and explore how their sexual practice was experienced and how it played out both during their drug use and in their current drug-​free lives. It is vital to bear in mind that the participants looked back on a time they had left behind. One part of adjusting to a life in recovery can involve retrospectively emphasising negative aspects of the old life, which may influence the narratives within this research. It also needs to be pointed out that an interview is the result of an interaction between two people who react to each other and mutually impact upon each other. Issues related to sexuality can be difficult to talk about, and we placed great emphasis on creating a safe and open climate for the participants to share their experiences. We recruited the participants through treatment centres and users’ organisations where we knew people who could recommend or vouch for us. We used the so-​called snowball method of recruitment, which entails one participant providing the research team with a contact for another potential participant. We were careful to adopt an open, non-​moralising and responsive approach during the interviews in order to give space for a reflexive dialogue and spontaneous stories and associations. We found there was great interest in our study among the people we came into contact with. We believe that they perceived it as important and empowering to share their experiences –​both for their own sake and to help other people in similar situations. Our analytical framework is guided by concepts and ideas from the interactionist tradition. Thus, the recovery process is understood as an ongoing renegotiation of identity which takes place through interaction with other people (Biernacki, 1986). This ‘fluid’ transformation of identity is characterised by a tension between the past, the present and the future (Fuchs Ebaugh, 1988) and plays out in a context of available social, material, emotional and discursive resources (Neale et al, 2011). The complex process of transition revolves around individuals’ attempts to go along with the various sexual scripts made available to them. Gagnon and 68

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Simon (2005) use ‘scripts’ as a metaphor to analyse how the choice of sexual behaviour comes about in social life. The scripts can be layered through three interacting dimensions: cultural, inter-​personal and intrapsychic scenarios. The cultural scripts affect societally dominant values of sexuality, while the inter-​personal scripts organise relations between people. The intrapsychic scripts contain the individual’s subjective motives for having sex, such as sexual desire and pleasure. Thus, the scripts are not static but change over time and vary according to the contemporary cultural context that provides the information from which people piece together their knowledge and conceptions about sex and the ideas and fantasies for their personal, intrapsychic scripts. For the people we interviewed, the transition from the subcultural drug context into a life without drugs presented a real challenge, especially concerning their managing to decipher the rules and expectations of sex and intimate relationships, namely the when, where, how and why of sexuality.

Sexual practice during drug use ‘You simply fuck better, it’s probably something to do with self-​ confidence. You get a little wilder, harder, a little more like a porn film, and a more intense feeling when you come.’ (Viktor) In order to better understand how the participants managed their sexuality during recovery, we use the experiences they brought with them from their time of active drug use as a starting point. As noted by Viktor, our participants highlight the strong connection between drugs and sexuality in the amphetamine culture. With amphetamine use came enhanced self-​ esteem, increased sexual desire, pleasure and lack of inhibitions, as well as the added sexual contacts that the drug-​use context provided (Lorvic et al, 2012; Skårner and Svensson, 2013). Intercourse could go on for hours, sexual variation was greater and the orgasms more intense. As Ulla explained: “It might be because I’m inhibited otherwise, but if I compare with normal … whatever that is … But I guess it’s normal that some kind of foreplay is necessary to reach climax, but it wasn’t, you could still have multiple orgasms.” Thus, amphetamine was clearly perceived as a ‘sex drug’. The expression ‘fuck shot’ was used to denote an amphetamine injection taken during intercourse. The expression constitutes a symbol for the intimate connection between the amphetamine high and sex, and points to how rituals around drug use are given an erotic charge. As Sven reflected: ‘Yeah, whether it’s a sex drug or it’s something made up, that’s the question. But there is pleasure. It is a sex drug in the sense that you get aroused, you get excited, you get sensitive. Then you become 69

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totally manic in your behaviour, just like with everything else you do on amphetamine.’ (Sven) What is striking is the strong focus on performance, perhaps an adaptation to the hetero-​normative pornography that strongly influences the sexual perceptions of the amphetamine culture. It is important to note that this sexual repertoire was experienced by the participants themselves as outside the frames of normality. Even if the sexual acts mentioned in the interviews are also practiced outside the drug world, the participants attributed them to subcultural sexual scripts, as expressed by Ulla in the opening quote. Some of the women related that the drug use helped them to cope with uncomfortable sexual experiences from their past or present life and to adapt to the sexual expectations of men. In these accounts, the exchange in sexual relations seemed to be more about receiving validation through pleasing the man than embracing their own desire. Sara related that she has always had a hard time enjoying sex: ‘I don’t feel like I have a sexuality. I’ve always sought confirmation from men and that somehow has been through sex. The drugs gave me the courage, at the same time as they exposed me to things that I might not have been exposed to otherwise. That is, not having sex for me but having sex for him. To live up to the image of being a damn sexy woman and hiding behind that. If someone wants to fuck you, you are worth something. At least he wants to fuck me.’ (Sara) Another recurrent theme represented by some of the men was that amphetamine-​related sexual interest was channelled into intensive masturbation, where a real-​life sexual partner was replaced by fantasy images from the world of pornography. The masturbation could serve both as a replacement for a sexual partner and as an assurance that the amphetamine high would not be disrupted by the involvement of a live partner. The accounts also revealed an escalation in which one dimension seemed to be mastery over failing potency. Looking back, the men described this behaviour as shameful and abnormal: ‘Amphetamine, masturbation and porn, and we’re not talking about 20 minutes to oneself but many hours of hardcore pornography. It takes up all your mental energy and you can’t break free from it. To have sex with a person was connected with other demands. You know, winning someone and showing interest … get it up. After all, it’s a person, and that’s a distraction in this total focussing on the world of your own thoughts.’ (Per) 70

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In the accounts centred on heroin use, there is a striking contrast to the sexual practices of the amphetamine culture. Here, sex is not a focal point in the narratives. Rather, the pleasure seemed to be linked to the drug itself, and the use of heroin generally caused reduced sexual interest (Rawson et al, 2002). Samuel, one of our participants, illustrates this point: “There was not a lot of sex for me. Probably because when on heroin you don’t care so much about sex. I got all my sex from the needle in my arm. It was simply better than sex.” Berit described how sexual intimacy took the backseat when she and her partner started using heroin more regularly: “With heroin it becomes more about affection. And when you take opiates you lose the feeling. You can’t orgasm.” Taken together, a complex picture emerges in which the function of drugs as a regulator for both sexual desire and discomfort takes a prominent role. The accounts also indicate a shift over time. The positive and adventurous broadening of the sexual repertoire appeared to be primarily associated with the initial phase of drug use, while long-​term use with problematic effects on social life and mental and physical health were associated with repetitive, mechanical patterns and sexual problems, including lack of sexual interest or failing potency.

Sexuality after leaving problematic drug use ‘Sure, I would like to wake up with a woman next to me and sit on the couch and cuddle. The emotional thirst is still there, but the sexual drive can be turned off.’ (Sven) Leaving the world of drug use behind and striving to (re)enter mainstream society caused many of our participants to feel lost, and one of the most sensitive questions was how their sexuality would function without drugs. This resonates with Fuchs Ebaugh’s (1988) classic theory of ‘role exit’, which emphasises the management of new intimate relationships as a key challenge on the path towards a new role in life. The rules of conduct in today’s individualised society are informal and defined by a high degree of change and sexual diversity whereby different sexual scripts exist alongside each other (see also Skårner et al, 2017). Fundamentally, this includes everything from flirting to post-​coital behaviour. Thus, there are no given norms for how to act. Being unaccustomed to managing ‘the rules of the game’ in sexually charged situations creates confusion and insecurity and undermines sexual confidence and self-​esteem for both women and men. Signe and then Sven explain: ‘I am scared. I haven’t had sex since I’ve been sober. It’s been more than three years. Mostly because I didn’t want to. First I was obese and 71

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felt sick with myself because of that … and I don’t go out dancing or anything like that.’ (Signe) ‘Since the amphetamine has been such a big part of sex, it’s a huge thing I feel guilty and ashamed about. It affects my sexuality now. I carry those feelings of disgust with me and I think that makes me overly careful with girls. You feel awkward: Can I do this? What will she say? Does she think this is wrong? Because you want to be nice, overly nice, and that’s because of the dirt, all the shit you’ve seen. Can I be with a normal girl? Am I able? Am I big enough? I feel really insecure and then it’s easier to skip it.’ (Sven) The insecurity the participants revealed about which sexual scripts were valid in a drug-​free life goes hand-​in-​hand with unpleasant memories and feelings of shame and guilt linked to past experiences. Many of the participants also revealed a fear of not being ‘good enough’ in the eyes of their sexual partners. The women, exemplified here by Ingrid, described how the prospect of sex made them feel unattractive and uncomfortable: “I don’t like myself. I don’t think I look good. The idea of having sex feels uncomfortable, disgusting. I feel scared. On several occasions when I have had sex with my partner I have felt disgusted. It felt wrong.” The problems for the men centred more on a fear of not being able to perform sexually. Tommie explained: ‘If you meet a girl in a pub and go home together, things get so intense, now it has to work. You don’t know each other, then it’s difficult to say, “I’ve had some issues for seven years, so I’ve always taken speed when fucking, so you have to be a bit patient with me.” It’s a hard thing to say the first time, it’s embarrassing and you have low enough self-​esteem as it is.’ (Tommie) The idea of recovery as a way of moving forward was shared by many of the participants. At the same time, the past reappears. The feeling of not being sufficiently attractive or potent, as expressed in the accounts discussed, was accentuated when compared with previous experiences of more free and undemanding sexual encounters. The accounts reveal that sexual activity in some ways was more exciting and pleasurable during drug use and later becomes more repressed and dull. When considering this option, it is evident that drug use holds a certain appeal. “I feel a bit damaged when it comes to sex,” Signe stated. “Perhaps I expect too much.” Tommie explained that sex was never a problem as long as he was using amphetamine. He did not express feelings of shame or guilt, rather a sense of loss: 72

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‘You miss the amphetamine. Because now, either you come too fast or you get horny but just can’t get it up. With amphetamine it was full pelt all the time, better for the girls too, I think, because it usually takes longer for them. You had more energy before. There are so many thoughts popping up now, perhaps you should have taken some speed.’ (Tommie) Characteristic of the marginal conflict, in transition from one world to another, is the ambivalence about the new, which in turn is connected to a striking social insecurity enhanced by the fact that drug use is strongly associated with stigma (Biernacki, 1986). A central aspect of the stigmatisation process is that the individual applies the acquired identity standard to themselves without managing to live up to it, which causes feelings of identity ambivalence and shame (Goffman, 1963). One way of dealing with this tension is to ‘reframe’ the previous sexual experiences as something completely negative, or as Sven put it: “What you did when you were high, you don’t want to do when you’re sober.” In this reorientation, sexual partners who represent the old life style no longer fit in, and at the same time a complete break with the previous sexual scripts seems hard to achieve. Or as Fuchs Ebaugh states (1988, p 156), ‘The “hangover identity” from a previous status often impacts current expectations and evaluations.’ Julia described an intense relationship with a man she met at an NA meeting and how “destructive” sexual patterns from the past were reproduced: ‘He was still involved in crime. I never got any confirmation from him and that made him more exciting. We had an amazing sex life. There was a lot of rape role play and him holding me down and … yeah, we both agreed to it. I found it hard to accept that it turned me on. I thought it was connected to what I’ve been through in the past and I felt that was a bit sad that it had made me, like … twisted.’ (Julia) Our analysis clearly emphasises that sexuality under the influence of drugs contrasts with the participants’ ideas about ‘normal’ sexuality. One strategy for handling the anxiety about how to manage sexual encounters in the new life project was to simply avoid sexual contact. With the fear of repeating sick, unhealthy and “twisted” patterns of behaviour, some of the participants found it easier to put sex on hold. This theme is articulated by Tom: “I don’t see any girls now. I don’t feel like I have any luck anymore, or that I have the courage to put myself through it, because I’m scared of what sex will be like.” Some viewed single life as a sad defeat, and others saw it as a liberation from the demands associated with sex. However, most of them shared a 73

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desire to establish a stable, intimate relationship when ‘the time was right’. One of these was Agnes: ‘It feels really shitty not being able to have a normal relationship. I’m scared of not being good enough … that my body … I don’t know. To get into the same behaviour as when I was using drugs … this submissive … lose myself and my will power. But sometimes I feel so damn lonely. I don’t want to grow old alone, I suppose no one does. You want a life companion.’ (Agnes) Another strategy for dealing with the tension and insecurity that accompanied the transition was to find partners with their own history of drug use, where the shared experience could facilitate recognition and understanding of possible sexual failures. Sven explained: ‘A girl who has her own drug problem, who knows a bit about how you get, it’s more okay to mess up. Because she can say, “Hey, it’s alright, I know, I have some problems myself ” … Also, for us older addicts, when you finally get it up, you think, goddamn, now I have to strike while the iron is hot, and then it’s already too late and the knight’s sword goes down, so to speak.’ (Sven) These relationships were generally described as founded on friendship and security rather than passion, and thus sex played a less important role. Julia also met her current partner at an NA meeting, and this relationship constitutes a break from her previous pattern of going for “bad boys”: ‘He was the first nice guy that I don’t completely despise. He is humble and careful and has no desire to get involved in crime. And that made me think, “My God, who is this person?” I’ve probably never been in love with him like that, not in that unhealthy way that makes me super self-​conscious, “Am I good enough, not good enough?” He is sweet and kind and loving, one of those who it will work out with in the long run. But it’s not like “wow”. I’m not his slave in the same way that I have been in previous relationships. This is more mutual.’ (Julia) Julia described their sexual life as complicated. Both partners harbour traumatic experiences that must be dealt with while negotiating their way towards new sexual scripts based on intimacy: ‘Our sex life needs time to meet. That obsession isn’t there and the fact that there’s nothing to hide behind makes it more naked and vulnerable. Sometimes I’ve started crying afterwards without being able 74

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to say what it’s about. But more honest and present. Not like entering into a role. We need time for it to work. But the real medicine is that we are honest with each other. I know where he’s coming from and he knows where I’m coming from. He was sexually abused as a child and he’s sold sex, so his sexuality is not uncomplicated either.’ (Julia) For Olof it was easier to adjust to a genuine and satisfactory sex life without drugs. Over the years he had maintained an ‘ordinary’ social life separate from the world of drugs. Additionally, both before and after he changed his substance use, he has had partners without their own history of drug use. ‘I was really scared at first: Will it work? But at the same time, I remembered how even when I was into drugs I thought that sex without drugs was the best sex. I guess I am a romantic. On the other hand, I’ve realised that … I am in a relationship now where I can push the boundaries too. We have different sex from time to time, there is an openness between us.’ (Olof) To sum up, a majority of our participants were not contented with their current sex lives, and the accounts reflect much uncertainty and ambivalence in relation to sexual issues both within and outside of long-​ term relationships. It is evident how personal choices and coping strategies intersect with the recovery process as a whole and the transformation of identity and the new outlook on life that lies at the heart of this process. It is not possible to decipher any general patterns indicating that ‘time heals all wounds’, as there are examples of those who have had a relatively easy time adjusting to new life circumstances whereas others still struggle despite having been in recovery for a long time. Feelings of shame related to past events were triggered by a strong desire to create a new ‘ordinary’ identity, where the significance of the ordinary corresponds to what others do (see Nettleton et al, 2012). Yet, they were not sure how ‘ordinary’ people actually act in sexual situations and what was deemed ‘normal sexuality’. The experience of sexual stigma remains a dominant theme in the participants’ narratives; the sense of being sexually exhausted was clear as was their perception that they had somehow damaged their ability to have ‘normal and loving’ relationship. The preferred option, then, appeared to be to refrain from or play down sex even though this may result in feelings of frustration and longing. According to Biernacki (1986), this can be understood as an aspect of the sexual moratorium that often takes place during the recovery process. To some, this was a welcome respite even if others perceived it as a meaningless wait for a fresh start: they wondered: Why does the “beautiful and lovely” sexuality never come? 75

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Treatment and sexuality ‘I think that the 12-​step programme sometimes makes issues about sex to be shameful. It’s either/​or. I think they go about it [sexuality] the wrong way, like there is a defect in you that you need to work away at by following the steps, going to meetings or having a sponsor. I’d like a treatment where you explore what it is and how I’d like it instead and what I’m prepared to change.’ (Per) With one exception, the participants had previous or ongoing experiences of treatment, including OST as well as various forms of psychosocial treatment. Several were or had been involved in the NA movement. From what the participants related, sexuality appeared to be a non-​issue in OST, although a common side effect of the medication is low sex drive. Similar descriptions were given by both the women and the men, here represented by Ingrid and then Henry: ‘Methadone blunts your feelings. It’s much harder to orgasm. I’ve always had a hard time orgasming during intercourse; it’s worked better when I stimulated myself. But those orgasms also got less intense and my sexual desire got reduced.’ (Ingrid) ‘It happened very quickly, from getting admitted to the [OST] programme to getting involved in a relationship. But I still had a low sex drive and that was hard for me because my girlfriend had a normal sex drive compared to me. And I was healthy before, so I do know what a normal sex drive is.’ (Henry) Another treatment experience was connected to the 12-​step programmes and the so-​called ‘one-​year rule’. This refers to the recommendation not to have sex during the first year of recovery, at least not outside of a formerly established relationship. Some of the participants found this recommendation helpful, whereas others perceived it as confusing and even moralising. George had lived alone for the seven years that he had been in recovery. He argued that getting involved in relationships means that one is not fully receptive to the changes required in order to complete the 12 steps: ‘Yes, now new rules apply. For it [sex] is a drug too. Total abstinence from everything. Some people escape into one another so they don’t have to deal with themselves and that is dangerous. So I am wary of relationships, because it’s hard stuff. The thing is that I want to get to know myself first. Without drugs, that is. So I thought I’d do the 12 steps and then we’ll see.’ (George) 76

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This account differs from that of Jenny, who represents a more critical stand point: ‘It was advised that you should keep your pants on for a year. End of. You were told that you might try to replace the drug with love, that you’ll fall in love with someone and forget yourself. If I’d had a chance to talk about sex when I was in treatment, maybe I would’ve been spared wandering off and trying sex and things ending up as before.’ (Jenny) Judging from these accounts, issues connected to sexual health and well-​ being are almost absent from treatment. That topics related to sexuality are poorly addressed in treatment is in agreement with previous mental health research (see Quinn et al, 2011). If the subject of sex was broached, it predominantly held negative connotations, exemplified by sexual abuse, prostitution or the risks associated with establishing sexual relationships during the early stages of recovery. Many of the sexual dilemmas that the participants spoke about are not unique to people in recovery. Still, they became intermingled with and intensified by the experience of using drugs and are thus attributed to this practice. By neglecting the fact that universal experiences such as a loss of libido, impotence and an inability to orgasm are also present in the lives of other people of similar ages, this idea could develop into a sexual stigma attributed to drug use, which, in turn, could become a self-​fulfilling prophecy. To sum up, the treatment had not provided the participants with tools consisting of functional sexual scripts that enabled them to better manage sexual encounters, whether they were related to sexual experiences during drug use, side effects of medication or were of a more universal nature. What was offered instead, if anything, was a limited and limiting sexual script.

Conclusion A part of the transition into a drug-​free life appears to involve drawing a marked line between the old lifestyle and the new existence that one seeks to establish. One aspect of this involves re-​evaluating sexual encounters that took place during drug use. A dichotomy between sexual practices in different social spheres was constructed, in which the uninhibited sexuality attributed to the subcultural context was described retrospectively as “inauthentic” and “dirty” while ‘conventional’ sexuality was regarded as “normal” and “desirable”. Our analysis confirms that leaving a problematic drug habit involves a great deal more than simply quitting the drug itself. Long-​term recovery involves great personal effort, scrutinising sexual practices and a reassessment 77

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of previous identity and lifestyle. Treatment often includes rituals to facilitate this process, and new norms and living rules are provided as tools for the identity transformation. However, people who experience and believe that drugs improved or eased their sex life could be in greater risk of relapse. Moreover, even for those who have a stable, longer-​term recovery, sexual problems can lead to a reduced quality of life. The interviews reflect a strong need for formal and informal support networks to process and gain perspective on issues related to sexuality. This requires counselling and sexual education based on a non-​judgemental and knowledge-​based approach in order to help individuals deal with sexual problems and enable the development of a functional and life-​affirming sexuality, as opposed to one that is governed by self-​contempt and fear. Hence, we conclude that sexuality, not least as an affirmative aspect of life, should play a greater part in the emotional processing in drug treatment. References Biernacki, P. (1986) Pathways from Heroin Addiction, Philadelphia: Temple University Press. Fuchs Ebaugh, H.R. (1988) Becoming an Ex. The Process of Role Exit, Chicago: University of Chicago Press. Gagnon, J.H. and Simon, W. (2005) Sexual Conduct. The Social Sources of Human Sexuality, London: Aldine. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs: Prentice-​Hall. Government Office of Sweden (nd) Swedish drug policy –​a balanced policy based on health and human rights, available online from: www.government.se Lorvick, J., Bourgois, P., Wenger, L.D., Arreola, S.G., Lutnick, A., Wechsberg, W.M. and Kral, A.H. (2012) ‘Sexual pleasure and sexual risk among women who use methamphetamine’, International Journal of Drug Policy, 23: 385–​92. McIntosh, J. and McKeganey, N. (2001) ‘Identity and recovery from dependent drug use: The addict’s perspective’, Drugs: Education, Prevention and Policy, 8: 47–​59. Neale, J., Nettleton, S. and Pickering, L. (2011) ‘Recovery from problem drug use: What can we learn from the sociologist Erving Goffman?’, Drugs: Education, Prevention and Policy, 18(1): 3–​9. Nettleton, S., Neale, J. and Pickering, L. (2012) ‘ “I just want to be normal”: An analysis of discourses of normality among recovering heroin users’, Health, 17(2): 174–​90. Quinn, C., Happell, B. and, Browne, G. (2011) ‘Talking or avoiding? Mental health nurses’ views about discussing sexual health with consumers’, International Journal of Mental Health Nursing, 20: 21–​8.

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Rawson, R.A., Washton, A., Domier, C.P. and Reiber, C. (2002) ‘Drugs and sexual effects: Role of drug type and gender’, Journal of Substance Abuse Treatment, 22: 103–​8. Skårner, A. and Svensson, B. (2013) ‘Sexual practices in the amphetamine world’, Nordic Studies on Alcohol and Drugs, 5: 403–​23. Skårner, A., Månsson, S.-​A. and Svensson, B. (2017) ‘ “Better safe than sorry”: Women’s stories of sex and intimate relationships on the path out of drug abuse’, Sexualities, 20(3): 324–​43.

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Multiple recoveries: substance use and trauma Sarah Fox and Karin Berg

Introduction The work in this collection so far has discussed the concept of long-​term recovery as having a multitude of meanings for a variety of people with lived experience of substance use. For some, long-​term recovery is about ongoing abstinence from specific or all substances; for others, it is about reducing the quantity of substance used or changing the type of substance used. For many, long-​term recovery may not be an experience that will ever be found. This current chapter argues that when exploring the concept of long-​term recovery from substance use, it is important to acknowledge the role of long-​term trauma,1 because substance use is about so much more than the drug itself, it is ‘a response to life experience, not simply to a drug’ (Maté, 2018, p 304). The idea of long-​term recovery from substance use must be contextualised within the long-​lasting impact of trauma. Problematic substance use is common among trauma survivors, as are anxiety, PTSD, depression and eating disorders (West and Merritt-​Gray, 2001; Lindhorst and Beadnell, 2011; McLaughlin, 2017). Victims of physical and sexual abuse ‘often develop long term reactions that include fear, anxiety, fatigue, sleep and eating disturbances, intense startle reactions, and physical complaints’ (Van Der Kolk, 2014, p 8). Symptoms of trauma may return at different stages of life (when having children, suffering significant personal losses or during new relationships), and a person with past trauma may return to treatment years after she considered herself ‘recovered’ (Herman, 2015). In turn, sudden symptoms of trauma could once again trigger the use of substances if they are used as a coping strategy (Smith, 2019). Moreover, both childhood and adult trauma, particularly experiences of physical and sexual abuse, have been described as an isolating, ‘disconnecting’ experience, removing the feeling of belonging to other people and the community (Herman, 2015). This is the result of spoiled trust, feelings of guilt, shame and inferiority caused by the trauma. As Herman puts it, ‘Traumatic events have primary effects not only on the psychological structures of the self but also on the 80

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systems of attachment and meaning that link individual and community’ (Herman, 2015, p 51). In addition, many women with experiences of intimate partner abuse report that they never fully recover from violence (Evans and Lindsay, 2008; Herman, 2015; Lim, 2015), rather, the experiences of abuse are displaced from ‘the centre of the women’s existence’, yet still incorporated in their lives (Evans and Lindsay, 2008, p 359). This concept acknowledges that traumatic events remain as an ‘additional dimension’ in the person (Evans and Lindsay, 2008, p 359), and are not something that can be reversed, removed, cured or something that should be hidden. This additional dimension must be acknowledged when exploring the concept of long-​term recovery from substance use, because it demonstrates the nuance of recovery, and moves away from the arbitrary definitions often presented in the literature, such as the Betty Ford Institute Consensus Panel’s definition of recovery as ‘a voluntarily maintained lifestyle characterised by sobriety, personal health and citizenship’ (The Betty Ford Institute Consensus Panel, 2007, p 221), or the UKDPC’s (2008, p 6) definition of it as ‘voluntarily-​sustained control over substance use which maximises health and wellbeing and participation in the rights, roles and responsibilities of society’. The focus on ‘sustained control over substance use’ assumes positive effects on both ‘health and wellbeing’ as well as ‘participation’ in the surrounding society. While some interpretations of recovery focus predominantly on abstinence from substances as a way of achieving positive well-​being, this chapter wishes to draw attention to the role of trauma in substance use and explore how, for some women, long-​term recovery is an ongoing process, centred primarily around day-​to-​day coping. The chapter will first present the lived experiences of Laura (pseudonym) drawn from research by Fox (2018). The study explored the support needs of women with histories of substance use and intimate partner abuse victimisation. In semi-​structured interviews, 12 women spoke in great detail about their experiences of substance use and domestic abuse, as well as their experiences of support and service provision. Interpretive phenomenological analysis (Smith et al, 2009) was used to present the lived experiences of the women, and the author reconstructed their interviews to produce pen portraits (a summative description of the women’s perceptions, experiences and feelings), ensuring a space in the research for their life stories to be heard (see Fox (2018) for further methodological detail). Following the presentation of Laura’s experience, the chapter will explore the personal, social and professional structures that are necessary to support the ongoing journey to long-​term recovery of women like Laura. This chapter will pay particular attention to the concept of safety as being a foundation in supporting women to achieve recovery both in the long and short term. Recommendations for better trauma-​informed practice and policy will also be presented. Overall, this chapter seeks to 81

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show the importance of a holistic approach to recovery, centred not on a binary, siloed experience concerned only with substance use, but as a concept that accounts for the nuances of lived experience and the place of long-​term trauma.

Case introduction Laura was 64 and substance free for nearly three years at the time of the research. While she did not have the most time substance free of all of the research participants, she was the oldest woman to take part in the research, with a history of nearly 50 years of substance use and traumatic experiences. Her pen portrait has been chosen for this chapter because it demonstrates the impact of, and relationship between, long-​term trauma and long-​term substance use, while also emphasising her resilience and strength.

Laura’s pen portrait Laura grew up with an alcoholic mother, who was violent towards her father. Her mother died and she was raised by her grandmother and her father. She began drinking at the age of 13, when she met her first boyfriend in school. She got pregnant at 14 but was forced to put the baby up for adoption. She explained that at that point her life just “spiralled out of control”. She entered psychiatric hospital for the first time at the age of 15 for self-​harming, a cycle that lasted for nearly 50 years. At the age of 15 she began using amphetamines, before moving onto heroin, which she used for nearly 20 years. She began to experience domestic abuse when she left home at 16, from a boyfriend who beat her up and prostituted her to make money. At 17 she met a new man and had a baby with him. They married when she was 18, a rebellious act against her family, she explained. She was training in hairdressing at this time, but stopped when she became pregnant again. She explained this was a good relationship, and he was not abusive; however, she was abused and raped by her husband’s brother. She left her husband to protect herself from the brother, but said that she continued in a cycle of bad relationships from that point on. She lived in a women’s refuge with her children, and was prescribed methadone to help her change her heroin use; however, she explained she would end up in more bad relationships. In her mid-​20s, Laura chose to put her children into foster care, where they were later adopted. She then chose to be sterilised because she believed she should not have children because her heroin use was “so bad”. From this point she explained that she made “bad decision after bad decision”. She entered prison multiple times for crimes relating to drug use. In her early 30s, in an attempt to stop using heroin, she moved out of her geographical location to a new area, however, her alcohol and cannabis use 82

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then increased. Around this time, she also stopped engaging with men, and has not had a relationship since, explaining during the interview that she never put herself in a situation where she could be around men unless in a group of friends. She said, ‘I don’t wanna rock the boat, I’m happy. I’m not saying I’d get somebody in a bad relationship, cause the first time they’d put their hand up to me I’d be gone now, cause I’m stronger but, I don’t want that now. I’m happy on me own, I got me friends, and that, I’m safer.’ From the point when she moved to her new location, Laura explained that for the next 30 years she continued to drink heavily and use various drugs. She self-​harmed and tried to take her life several times, continuing to move in and out of mental health units. When she was 63, Laura said she “went too far” in how she tried to take her life. She was sectioned, and detoxed, something she was used to from being in hospital previously. However, she stated that this time something within her changed and her “mind flipped”. The hospital supported her to engage with a local drug and alcohol service, and she was offered counselling. She talked about her first session with the counsellor. ‘And the first time I went, I couldn’t do it, I broke down crying, it was too bad, too hard, to start talking, but, eh, then I went back again and then I done it all, and then it was one of them (heavy sigh) ya know, like, to get it off me shoulders.’ She explained the impact this has had on her saying: “It’s only now I can talk, because before, finding these feelings is unbelievable, because all me life I’ve blanked it, I didn’t realise I had, but by being off me head constantly on either drink or drugs or both [I had blanked it].” At this point in the interview, she had been drug and alcohol free for nearly three years, and she described how she had “got piece of mind now”. While she did not describe this as long-​term recovery, it was the longest she was drug and alcohol free since she first began using at the age of 15. However, she also explained that she still struggled with her mental health and body image. She had last self-​harmed three months prior to the interview, explaining: “Instead of going for a drink or drugs I think ‘do summat’, ya know what I mean. And it’s a weird way I know, but it’s the only way I can be in control.” Laura talked about her recovery as being an ongoing experience, explaining, “I’m just learning to handle life.” She placed great importance on listening to others and being listened to as part of her recovery. She was accessing the drug and alcohol service daily, and explained that she had seen counsellors to talk about the abuse. She believed that talking 83

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about her life experiences had helped her in her recovery. She also spoke about the importance of friendship and peer support in her recovery, placing great importance in her recovery centre and her friends there: “We’ve all got troubles, cause otherwise we wouldn’t be here, right. And I know what true friendship is now, ya know what I mean?” Laura also spoke about her role as a peer-​support volunteer, explaining that being involved as a volunteer group leader not only helped other people accessing support but also helped her in her recovery, stating: “You’re never too old to learn.” While this pen portrait portrays Laura’s chronological life course, the interview itself shows how trauma is ‘not stored as a narrative with an orderly beginning, middle, and end’ (Van Der Kolk, 2014, p 135). Rather, trauma in Laura’s life has evolved, and she continues to learn how to respond to the trauma as she learns how “to handle life”, which she manages through various support mechanisms. The proceeding sections will discuss how people with often diverse experiences of trauma, substance use and recovery can best be supported.

Knowing trauma: personal coping strategies and agency Laura’s narrative clearly demonstrates a relationship between long-​term trauma and long-​term substance use, presenting a complex pattern over her life course. Laura’s many steps between trauma, substance abuse and recovery are highly personal and reveal personal agency and multiple attempts and strategies to cope with trauma, reduce substance use and establish safety from further violence. She explained how at the age of 14 her life “spiralled out of control” after being forced to give her child up for adoption. Laura’s life course was traumatic, she was physically and sexually abused by many partners and she used substances to cope with her physical, emotional and psychological pain. However, Laura was also trying to retain some agency, to remain in control where she could. While Laura may be perceived to be a victim because traumatic things happened to her, she also showed that she was not passive. As her pen portrait shows, she engaged in education, she left her husband to protect herself, she engaged in a women’s refuge and she went on a methadone script. During the interview she wanted to make it clear that she chose to put her children into care because she wasn’t able to look after them, and she chose to be sterilised because she believed she shouldn’t have children. She also went to the GP for support and moved locations in an attempt to stop using heroin. She made a decision to stop engaging with men to protect herself. She engaged with drug and alcohol support, and she started talking about her lived experience. She even made the decision to engage in the research interview because she wanted to tell her story so other woman could learn from her experience, explaining: 84

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‘I think I’ve got a lot of experience, like I’m 65 this year and what I’ve been through, what I’ve been through over my life and that, I think it could be valuable for some other people, younger people to see, ya know, to try and help them, ya know.’ At the time of the interview, Laura had stopped using substances, and she stopped engaging with men, constructing a sense of safety and stability that has made her “happier”, but elements of self-​harm and eating disorders remained as a way for her to stay “in control”. Fisher (2000) explains how trauma survivors often create compensatory strategies to help self-​regulate the feelings associated with trauma, noting that ‘self-​injury and eating disorders capitalise on the patient’s experience that the body can be used for, and is nothing more than, a vehicle for shifting or discharging tension’ (Fisher, 2000, p 1). Laura’s coping involved self-​inflicted harm, and yet it has helped her survive. For Laura, a woman with lifelong and changing trauma, recovery seems to be an ongoing process evolving around “learning to handle life” in a way that is manageable for her. Learning the function of less normative coping strategies such as self-​harm, she believes, is essential to support her long-​term recovery. In thinking about the relationship between, and recovery from, substance use and trauma, Fisher believes that substance use begins as a survival strategy, ‘as a way to numb, wall off intrusive memories, self soothe, increase hypervigilance, combat depression, or facilitate dissociating’ (Fisher, 2000, p 1). In accepting that it is a survival strategy, we must look at how the substances have helped traumatised women to survive. Knowing this is particularly important, because the trauma symptoms may increase when substance use is lessened. This understanding helps practitioners anticipate alternative coping strategies, it helps them to understand how the woman’s trauma may be triggered and helps them to identify the woman’s strength by recognising her attempts to cope (Fisher, 2000). In sum, knowing trauma’s relationship to substance use, its common symptoms, but also how it manifests differently depending on a woman’s individual experiences, coping and agency, is a prerequisite for supporting long-​term recovery from both substance use and trauma. While all women may not seek a resolution of their trauma, and their definition of ‘health and wellbeing’ may not be the same as definitions set out in policy (UKDPC, 2008, p 6), the following three components appear to be central tenets of being in long-​term recovery for both trauma and substance use. Safety first Striving for safety and stability is a central theme that runs through Laura’s story. At the time of the interview, Laura’s living situation appeared relatively 85

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stable, she had received support to quit her substance use and she was connected to a social network of peer and therapeutic support and was able to talk about her experiences of trauma. Her narrative shows that in order to be in the position to explore and subsequently recover from trauma, a ‘safety first’ framework must be established. Several trauma theorists argue that security and a safe environment are fundamental for trauma survivors and must be established before any trauma-​related work can be achieved (Van Der Kolk, 2014; Herman, 2015). Physiologically, in order to begin the recovery journey, trauma survivors need a complete feeling of safety. This involves the trauma survivor feeling a sense of control and safety in her own body; a secured living situation; regular sleep; eating; autonomy and self-​care. The dangers that need dealing with often involve the survivor’s own potentially self-​destructive behaviours, such as risk-​taking, self-​harm and substance use. Building a safe environment requires a structure of social support, including friends, family and sometimes professional support, because, ‘empowerment and reconnection are the core experiences of recovery’ (Herman, 2015, p 197). This may involve multiple support mechanisms, including treatment and support for substance use, mental health and eating disorders, and support from social services to ensure a stable living situation. Establishing a safe environment also means support from friends and family and removing social connections which are not safe, including people who blame the trauma survivor as well as contact with those who pose risks of further violence and trauma (Herman, 2015). From this perspective, the first step to long-​term recovery is to make sure women are safe, and this involves several dimensions of social and professional support. Social support Friendship and peer support was of fundamental importance for Laura, giving her a sense of safety and stability. She spoke a lot in the interview about the friends she had from the recovery centre she attended and the safety she felt with them: “I feel safe. Nobody cares whether you got two heads, three heads or no head at all. Honestly, they accept you for who you are.” The pen portrait also demonstrates how Laura values speaking about her own experiences with others as a way of learning in an emotionally safe environment. Social connections are essential for long-​term recovery. Van Der Kolk (2014) speaks of peer support as providing ‘physical and emotional safety, including safety from feeling shamed, admonished, or judged, and to bolster the courage to tolerate, face, and process the reality of what has happened’ (Van Der Kolk, 2014, p 210). Shared connection alleviates a ‘searing sense of isolation’ (Van Der Kolk, 2014, p 79), as Laura’s narrative has shown. This is reinforced within both substance-​use and trauma-​related literature, which 86

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emphasises that connection with others is an important part of recovery journeys (Brown et al, 2013; Bassuk et al, 2016). In establishing a safety-​first approach to care for trauma survivors using substances, a peer-​support group may be best placed to begin the engagement process because it ‘dissolves feelings of isolation, shame, and stigma’ (Herman, 2015, p 215), and can enable recognition and commonality that is hard to obtain with those who have not shared similar experiences. Many women with experiences of violence and substance use may be reluctant to contact professional support due to feelings of fear, stigma and shame (Fox, 2020). It is therefore important to explore other complementary sources of peer support. Anonymous online peer-​support groups can have a similar function as regular peer-​support groups, and can be considered a fundamental first step before reconnecting with the wider community (Berg, 2015). The set up of online peer support varies in many respects: that is, the types of communication involved and whether it is expert led and/​or linked to an organisation. However, common features for many online peer-​ support spaces, which contrast with regular peer support, include the often large number of members who primarily meet online, all-​day access and the possibility of participating or simply watching conversations anonymously (Berg, 2015). Sinclair et al (2016) highlighted how an online community for people wanting to change their problematic drinking patterns provided a safe space for members, offering them somewhere that they could be honest, providing a source of trusted information and a site for ongoing support. Berg (2015) explored an online support group for women with experiences of domestic violence. An online survey of forum members indicated that the forum can serve as a long-​term and flexible source of mutual support, alongside and between the gaps in professional support, and can also be an emotionally safe community for friendship. Moreover, a detailed textual analysis of posts written on the forum showed that support between members involved helping each other identify abusive acts and utterances as well as identifying emotions connected to trauma. These conversations were conceptualised as part of the process of understanding experiences of violence (Enander and Holmberg, 2008), and they also functioned to validate members’ experiences of violence and simultaneously challenge discourses of blame. Professional support One major turning point for Laura was when she engaged in counselling, however, her engagement was not easy, and she explained that it took time to get the words out: “I couldn’t do it, I broke down crying, it was too bad, too hard, to start talking.” Van Der Kolk (2014) highlights this challenge in first engaging in therapy, noting that anyone who enters talk therapy almost immediately confronts the limitations of language (Van Der Kolk, 2014). 87

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Laura’s feelings had also been ‘blanked’ with the help of drugs and alcohol, so being able to put words to her feelings with professional help made a great difference, and this was achieved through a combination of substance-​ related and trauma-​related support. Psychologically informed therapeutic support, such as counselling, and a stable and trained staff team are essential features in supporting people seeking long-​term recovery from trauma and substance use (Tompkins and Neale, 2016; Flash, 2017; Bailey, 2019a). When working with substance-​ using individuals, preaching about their self-​destructive behaviours does little good if support is not in place to explore the emotional dynamics driving the behaviour (Maté, 2018). Trauma-​informed practice should be ‘grounded in an understanding of and responsiveness to the impact of trauma, that emphasizes physical, psychological, and emotional safety … that creates opportunities for survivors to rebuild a sense of control and empowerment’ (Hopper et al, 2010, p 133). This should be sustained by ‘creating an environment through site selection [located at a safe site such as a women’s refuge, and near the communities the clients come from], staff selection, program development, content and material that reflects an understanding of the realities of women’s lives’ (Covington, 2002, pp 52–​ 3). Professionals must also demonstrate compassion and understanding of the links between trauma and substance use and aim to promote strength among the women (Fisher, 2000, p 5). However, in order to achieve this, a safety-​first approach must include a living environment where substance use and abstinence is not used as a bargaining chip for accessing safety; that is, women must not be told they can only have support if they stop using substances immediately, because for many trauma survivors, substances have been the tool that has helped them get through their traumatic experiences (Fox, 2018, 2020).

Implications for practice and policy Laura’s narrative and, indeed, the lived experiences of all the women who took part in Fox’s research (2018) suggest that long-​term recovery is not just about substance use but is about identifying, recognising and supporting recovery from trauma too. To understand and support women in their long-​ term recovery from substance use, a safety-​first approach is paramount and should include integrated or coordinated support that promotes external safety, teaches extensive coping skills, promotes emotional regulation and provides access to safe social support (Goodman, 2017; Bailey et al, 2019b). A trauma-​informed approach must look at substance use as a form of ‘maladaptive coping with unresolved traumatic experiences’ (Goodman, 2017, p 192), and professionals must be trained to recognise the existence and symptoms of trauma (Goodman, 2017). In doing so, it is imperative 88

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that drug and alcohol services are trauma informed, that all staff recognise the symptoms of trauma and understand that trauma can manifest itself in diverse and nuanced ways. For services that work with trauma, staff need to understand that substance use may play a role in how women (and men) may cope with the symptoms of trauma, and that their use should not be a barrier to them accessing the trauma support they need. However, in order for this to happen, there needs to be a commitment from policymakers and commissioners to ensure services are trauma informed. Unfortunately, this combination of support is not widely available in the UK (Holly, 2017; Fox, 2020), as professional support within the UK tends to adopt an either-​or framework, meaning that women either focus on substance use or trauma. While the UK government’s 2017 Drugs Strategy (Home Office, 2017) and the Ending Violence Against Women and Girls Strategy (Home Office, 2016) have noted the importance of integration and coordination across substance-​ use and domestic-​abuse services, and Drug Misuse and Dependence: UK Guidelines on Clinical Management (DHSC, 2017) has noted the importance of trauma-​informed care, the service landscape across the UK does not reflect these recommendations (Fox, 2020).

Conclusion This chapter has provided insight into the complexity of trauma and substance use and its implications for recovery both in the short and long term. As has been argued throughout, trauma and substance use are intertwined, and yet comprise their own separate problems with different consequences for women’s lives. It is therefore necessary that professional services take notice of the evidence and ensure that support for long-​term recovery includes long-​term support for recovery from trauma. In doing so, it is vital that commissioners fund recovery services that take a trauma-​ informed approach. Firstly, security must be considered the foundation for all recovery. Therefore, women’s safety cannot be made conditional upon their abstinence, because substance use is interwoven with trauma. Substance-​use treatment and the establishment of safety must be parallel foci. Secondly, to secure long-​term recovery from substance use, the long-​ term consequences of trauma require explicit recognition in order to enable sustained health and well-​being. Failure to recognise this may once again force women into a cycle of substance use and trauma, as Laura’s story conveys so clearly. Note Trauma is an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer-​term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea (APA, 2020).

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Acknowledgements The research referenced by Fox (2018) was funded by the Society for the Study of Addiction (SSA). The views expressed in this publication do not represent the views of the SSA. References APA (American Psychological Association) (2020) ‘Trauma’, American Psychological Association, available online from: https://​www.apa.org/​ topics/​trauma Bailey, K. (2019a) ‘A mixed-​methods study to evaluate the feasibility and acceptability of delivering an intervention to support women with experiences of interpersonal abuse, post-​traumatic stress disorder symptoms, and substance use, within an English substance use service’, Doctoral Thesis (PhD), Kings College London, available online from: https://​ kclpure.kcl.ac.uk/​portal/​en/​theses/​a-​mixedmethods-​study-​to-​evaluate-​ the-f​ easibility-a​ nd-​acceptability-​of-​delivering-​an-​intervention-​to-​support-​ women-​with-​experiences-​of-​interpersonal-​abuse-​posttraumatic-​stress-​ disorder-​symptoms-​and-​substance-​use-​within-​an-​english-​substance-​use-​ service(bbbe9cc0-​0014-​4408-​bda2-​7bed10b72b29).html Bailey, K., Trevillion, K. and Gilchrist, G. (2019b) ‘ “We have to put the fire out first before we start rebuilding the house”: Practitioners’ experiences of supporting women with histories of substance use, interpersonal abuse and symptoms of posttraumatic stress disorder’, Addiction Research and Theory, 28(4): 289–​297, doi:10.1080/​16066359.2019.1644323 Bassuk, E., Hanson, J., Green, N., Richard, M., and Laudet, A. (2016) ‘Peer-​ delivered recovery support services for addictions in the Unites States: A systematic review’, Journal of Substance Abuse Treatment, 63: 1–​9. Berg, K. (2015) ‘Online support and domestic violence –​negotiating discourses, emotions, and actions’, Doctoral Thesis (PhD), London Metropolitan University, available online from: https://​ethos.bl.uk/​ OrderDetails.do?uin=uk.bl.ethos.681216 Betty Ford Institute Consensus Panel. (2007) ‘What is recovery? A working definition from the Betty Ford Institute’, Journal of Substance Abuse Treatment, 33(3): 221–​8. Brown, S., Kyoung Jun, M., Min, M., and Tracy, E. (2013) ‘Impact of dual disorders, trauma, and social support on quality of life among women in treatment for substance dependence’, Journal of Dual Diagnosis, 9(1): 61–​71. Covington, S. (2002) ‘Helping women recover: Creating gender-​responsive treatment’, in Straussner, S. and Brown, S. (eds) The handbook of addiction treatment for women. San Francisco, CA: Jossey-​Bass.

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DHSC (Department of Health and Social Care) (2017) Drug Misuse and Dependence: UK Guidelines on Clinical Management, London: DHSC, available online from: https://​www.gov.uk/​government/​publications/​ drug-​misuse-​and-​dependence-​uk-​guidelines-​on-​clinical-​management Enander, V., and Holmberg, C. (2008) ‘Why does she leave? The leaving process(es) of battered women’, Health Care for Women International, 29(3): 200–​26. Evans, I., and Lindsay, J. (2008) ‘Incorporation rather than recovery: Living with the legacy of domestic violence’, Women’s Studies International Forum, 31(5): 355–​62. Fisher, J. (2000) ‘Addictions and trauma recovery’, International Society for the Study of Dissociation, San Antonio, 13 November, available online from: https://​janinafisher.com/​pdfs/​addictions.pdf Flash, P., Murray, C.E., Crowe, A. (2017) ‘Overcoming abuse: A phenomenological investigation of the journey to recovery from past intimate partner violence’, Journal of Interpersonal Violence, 32(22): 3373–​401. Fox, S. (2018) ‘ “They said if you come you can’t drink. I thought, I can’t stop”: Exploring the journeys to support among women who experience co-​occurring substance use and domestic abuse’, Doctoral Thesis (PhD), Manchester Metropolitan University, available online from: http://e​ -s​ pace. mmu.ac.uk/​622567/​ Fox, S. (2020) ‘ “… you feel there’s nowhere left to go”: The barriers to support among women who experience substance use and domestic abuse in the UK’, Advances in Dual Diagnosis, 13(2): 57–​71, doi:10.1108/​ ADD-​09-​2019-​0010 Goodman, R. (2017) ‘Contemporary trauma theory and trauma-​informed care in substance use disorders: A conceptual model for integrating coping and resilience’, Advances in Social Work, 18(1), doi:​10.18060/​21312 Herman, J. (2015) Trauma and Recovery: The Aftermath of Violence –​From Domestic Abuse to Political Terror, New York: Basic Books. Holly, J. (2017) Mapping the Maze –​ Services for Women Experiencing Multiple Disadvantage in England and Wales, London: AVA and Agenda, available online from: https://​www.mappingthemaze.org.uk/​wp/​wp-​ content/​uploads/​2017/​09/​Mapping-​the-​Maze-​executive-​summary-​for-​ publication.pdf Home Office (2016) Ending Violence against Women and Girls Strategy 2016–​2020, London: HM Government, available online from: https://a​ ssets.publishing. service.gov.uk/​government/​uploads/​system/​uploads/​attachment_​data/​ file/​522166/​VAWG_​Strategy_​FINAL_​PUBLICATION_​MASTER_​ vRB.PDF Home Office (2017) The Drugs Strategy 2017, London: HM Government, available online from: https://​www.gov.uk/​government/​publications/​ drug-​strategy-​2017 91

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Hopper, E.K., Bassuk, E.L., and Olivet, J. (2010) ’Shelter from the storm: Trauma-​informed care in homelessness services settings’, The Open Health Services and Policy Journal, 3: 80–​100. Lim, B.H.P., Valdez, C.E., and Lilly, M.M. (2015) ‘Making meaning out of interpersonal victimization: The narratives of IPV survivors’, Violence against Women, 21(9): 1065–​86. Lindhorst, T. and Beadnell, B. (2011) ‘The long arc of recovery: Characterizing intimate partner violence and its psychosocial effects across 17 years’, Violence Against Women, 17(4): 480–​99. Maté, G. (2018) In the Realm of Hungry Ghosts: Close Encounters with Addiction, London: Vermilion. McLaughlin, K. (2017) ‘The long shadow of adverse childhood experiences’, Psychological Science Agenda, available online from: http://​www.apa.org/​ science/​about/​psa/​2017/​04/​adverse-​childhood Sinclair, J., Chambers, S. and Manson, C. (2016) ‘Internet support for dealing with problematic alcohol use: A survey of the Soberistas online community’, Alcohol and Alcoholism, 52(2): 220–​6. Smith, J., Flowers, P. and Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research, London: Sage. Smith, P. (2019) ‘A qualitative examination of the self-​medicating hypothesis among female juvenile offenders’, Women and Criminal Justice, 29(1): 14–​31. Tompkins, C. and Neale, J. (2016) ‘Delivering trauma-​informed treatment in a women-​only residential rehabilitation service: Qualitative study’, Drugs: Education, Prevention and Policy, 25(1): 47–​55. UKDPC (2008) The UK Drug Policy Commission Recovery Consensus Group: A Vision of Recovery, London: UKDPC. Van Der Kolk, B. (2014) The Body Keeps the Score: Mind Brain and Body in the Transformation of Trauma, London: Penguin. West, J. and Merritt-​Gray, M. (2001) ‘Beyond survival: Reclaiming self after leaving an abusive male partner’, Canadian Journal of Nursing Research, 32(4): 79–​94.

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Being a partner in long-​term recovery: stories from female partners in Norway Sari Lindeman and Lillian Bruland Selseng

Introduction This chapter documents experiences of being a partner in a long-​term recovery process. The research about long-​term recovery from substance use gives the impression that recovery processes are about single people. However, this is illusory, and reflects the focus of most research into substance-​use difficulties. In this chapter, we look at romantic relationships in long-​term recovery from a Norwegian perspective. This is a perspective involving the context of the Scandinavian welfare state, well-​established public services and countries with high levels of gender equality. The aim of this chapter is to exemplify, from interviews, how women talk about their lives as partners to men in long-​term recovery. By doing so, the chapter provides insight into some of the complex experiences of being a partner in a long-​term recovery process, and how these women’s experiences are related to their social and cultural context. Close relationships with partners, family and friends are the factors that most affect human health and well-​being (Dunbar, 2018), and this also applies in the case of long-​term recovery from substance use. The role of people’s close relationships is not only important in relation to their motivation for treatment or in the short term but also in their day-​to-​day lives and ongoing recovery: ‘Being connected to others gave meaning to the hardships of working towards recovery. For many of them, this was a life-​long process in which the continual presence of family and friends was key’ (Veseth et al, 2019, p 100). There is a growing research interest in the role and importance of families in the recovery of individuals with substance-​use difficulties (Timpson et al, 2016; Ventura and Bagley, 2017). The main body of this research is about periods of treatment or recovery in the short term (Edwards et al, 2018; Dekkers et al, 2020). Family-​focussed research has mostly focussed on filling in the knowledge gap about the disruptive effect of ongoing substance 93

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use on family members (Ray et al, 2007; Rodriguez et al, 2014), or on reporting on the effects of family involvement in substance-​use treatment (Fletcher, 2013; Meis et al, 2013). We know less about how family members experience long-​term recovery, how it affects family relations or how family members may influence the long-​term recovery process (Andersson et al, 2018). There is almost no research about experiences of long-​term recovery from substance-​use difficulties from family perspectives (Dekkers et al, 2020). The few studies of family members’ perspectives on different stages of treatment and recovery processes point out that family members can contribute to recovery (Andersson et al, 2018; Edwards et al, 2018; Dekkers et al, 2020). However, these studies point out that family members may be especially vulnerable to possible cumulative negative consequences and strain (Andersson et al, 2018; Edwards et al, 2018). While the individual’s recovery can begin to repair damaged family relationships, some residual damage may remain (Edwards et al, 2018; Andersson et al, 2018). Both substance-​use problems and recovery are ambiguous concepts which can be understood and conceptualised in many ways (Cano et al, 2017; Edwards et al, 2018; Dekkers et al, 2020). However, our understanding is deeply embedded in cultural, institutional and social contexts (Russell et al, 2011; Hellman et al, 2016). How concepts like ‘substance-​use problems’ and ‘long-​term recovery’ are understood by professionals also influences how they understand the relevance of including family members in recovery processes; for example, in Norway, the prevailing understanding of recovery processes is often individual oriented and short term (Selbekk and Sagvaag, 2016; Kalsås et al, 2020). In Norway, there are political guidelines for increased involvement of families within the substance-​use and psychiatric health fields, but the dominant trends in Norwegian substance-​use services strengthen the individualistic perspective, and the possibility of performing integrated work with families is still limited (Selbekk and Sagvaag, 2016; Selseng, 2017). In this chapter, we understand long-​term recovery as a social process unfolding over time. This means recognising recovery as a journey and not an event (Kougiali et al, 2017; Dekkers et al, 2020). Attention needs to be paid to the processes involved in maintaining recovery as well as the processes related to building a meaningful and recognised daily life involving membership in significant social arenas (McKay, 2017; Veseth et al, 2019). Emphasising social processes that take place over time means that building a new identity and social life is central to our focus, and periods of substance use will not exclude a process from being defined as a long-​term recovery process. Seeing long-​term recovery as a social process means that people’s close relationships, such as with family, friends and colleagues, are decisive factors for how the recovery process is experienced and how it unfolds (Price-​Robertson et al, 2017; Mudry et al, 2019). Our aim in this chapter 94

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is to provide insight into how partners experience being part of a long-​term recovery process.

Long-​term recovery and couples Partner relationships differ from other family relationships. For the vast majority of people in Western cultures they are chosen relationships, based on mutuality and emotional ties (Aarseth, 2018). The different types of relatives occupy different positions in the family, which research into substance use in families also illustrates. Ólafsdóttir et al (2018) describe how feelings are expressed differently among different family members. They describe how siblings predominantly express aggression and rage, parents express fear, hopelessness, sadness and guilt, adult children express shame, lack of joy and lack of trust, while partners express that they felt both ashamed of and sympathetic towards their spouses. Research shows convincingly that ongoing substance use disrupts the balance of romantic relationships (Birkeland et al, 2018; Weimand et al, 2020). Weimand et al (2020) point out that relatives may need a long time to heal from their experiences. In addition, a person in long-​term recovery may need a long time before being able to deal with a close, romantic relationship (Macey, 2019). Keyes et al (2011) draw attention to the fact that additional stress arising from an exhausting romantic relationship can result in vulnerability to new episodes of substance use and difficulties in recovery. Fletcher’s (2013) systematic review of couple therapy treatments for ongoing substance-​use difficulties argues that there is an almost complete lack of focus on the implications of couple therapy for the non-​addicted partner. In addition, long-​term couple recovery processes remain absent from the literature (Navarra, 2007). In the field of physical health, spouses have been shown to play an important role when their partners are recovering from different types of illness or injury (Allan and Ungar, 2012). In the case of long-​term recovery from substance use, it seems that partners and their relationships are regarded as peripheral to the processes involved, and that this may narrow our understanding of these processes. To acquire a more extensive understanding of the experience of living in a romantic relationship with a partner in long-​term recovery, we explore the following research question: How do female partners talk about living with a male partner in long-​term recovery?

Methods The study, which was approved by the Regional Committee for Medical Research Ethics in Norway (Case number: 2019/​274), is based on interviews with two female partners in Norway. The interviews were 95

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loosely inspired by the free association narrative interview (FANI) (Hollway and Jefferson, 2008). We used open questions to produce narratives about experiences in couple relationships in long-​term recovery. The female partners were both in their early 50s, and both worked in health and social professions and had no substance-​use difficulties themselves. Their couple relationships had lasted longer than six years. Both Anna and Maria, as we call them, met their partners after the partner had been in treatment for substance-​use difficulties and while they were in a process of rebuilding a new social life. Their stories seem to have many initial similarities, but in the long-​term recovery process, Anna, unlike Maria, experienced several episodes of ongoing substance use in her partner’s recovery process and is now a widow.

Data analysis Stories help make sense of experiences, enable personal practice and are crucial factors in the ways people make sense of life (Frank, 2010). We used Frank’s (2010, 2012) dialogical narrative analysis to explore how being a partner in a long-​term recovery process is represented in the stories of these two women, and how the stories shape their sense of self. According to Frank, the specific stories people tell about their lives are intrinsically bound to existing narratives circulating in a society. These narratives are cultural resources providing people with templates, characters and plotlines with which they construct stories of their own. In our analysis, we have paid attention to what kind of narratives serve as the resources from which these women construct their stories. The presented stories are co-​constructed by the interviewer and the interviewed women, and the analysis is influenced by the researchers’ subjectivity. However, the focus of our presentation is on the women’s stories about being partners to men in long-​term recovery.

Findings We have identified four different stories that illuminate various aspects of how long-​term recovery is narrated. The four stories are intertwined but are analytically separated. We have labelled the four stories: a) a story about love; b) a story about commitment; c) a story about underlying vulnerability; and d) a story of normalisation. We present the four different stories, demonstrating how different positioning and practices come into play and how narratives about substance use and recovery are resources from which the women construct the stories they tell about their male partners’ long-​ term recovery processes. The quoted excerpts are slightly edited and have been translated into English, and the speakers have been given pseudonyms. 96

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“It was impossible not to be totally taken in by him”: a story about love A theme that is strongly evident in both Anna’s and Maria’s interviews is how their relationship with their male partners is portrayed as a love story. In the love story, their strong emotional attachment and close connection to their partners is highlighted. The relationship is described as being the result of strong affection and attraction: ‘You see, he was so exciting! He had so much energy, personality, and charm that … yes … I remember that. I remember … blushing when I was around him … It was impossible not to be totally taken in by him.’ (Anna) ‘He’s so funny, has loads of energy, and then he has lots of thoughts and ideas that I find fascinating. I was quite in love with him, you know, well actually very much in love with him I realised later … I know a lot about drug problems, but at the time didn’t think so much about the consequences if, for example, it didn’t turn out so well.’ (Maria) In the love story, their partners’ recovery from substance use is given little attention, and the love and attraction overshadow the demands and challenges associated with the recovery process. Stories take place in a specific cultural context, where accessible shared narratives are resources people use to construct their stories. What narrative resources people have access to depends on where they live and what kind of stories are told there. Anna’s and Maria’s stories about love draw on a narrative of romantic love which is dominant in Western culture (Evans, 2003; Øfsti, 2008; Haldar, 2013). A theme of the narrative of romantic love is that falling in love is a legitimate reason for starting a relationship, and falling in love is portrayed as a force we cannot choose (Øfsti, 2008). In the love story, Maria and Anna position themselves and their men as equal partners in their relationships. They use statements such as: “I feel safe. When the storms come, we stand together” (Maria), “We cope with things together” (Maria), and “We are both attentive to each other’s needs” (Anna). The positions their partners are given in the love story do not relate specifically to their long-​term recovery process but to social positions and attributes like ‘well educated’, ‘a health worker’, ‘a good listener’, ‘energetic’, ‘humorous’, ‘wise’ and ‘charming’: “He was a man with a good education who worked in mental health, and he was interested in me and my life” (Anna). The love story is filled with several examples of how Maria and Anna experience being accepted and valued by their partners in unique ways. 97

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An illustrative example is taken from the interview with Anna. She said that she had a lot of insecurity about her body and sexuality, but that her partner helped her: ‘I don’t think anybody else could have convinced me to have sex again. Other than him. And he used lots of energy to get me to feel secure in my own body. He took all my clothes off, stood me in front of the mirror and made me look at myself in the way that he saw me … talk about therapeutic!’ (Anna) When Anna and Maria faced challenges relating to their partners’ long-​term recovery processes (which particularly applies to Anna), they described how people around them understood poorly the emotional bond they had with their partners. For example, Anna described a situation when her partner had a relapse and she was told by the psychiatrist who came: “Just leave him lying here, you need to get home and just forget him.” “That’s what I was told to do, but of course there was no way I could do that,” Anna explained.

“I had to stick with it”: a story about commitment Another story that we find in the material is about how entering a relationship with someone who is in a long-​term recovery process creates an obligation to face challenges that may come. There is a plotline of ‘If you have said A, you must also say B.’ This plotline is referred to in statements such as the following: ‘That feeling that this was a blow I should have expected, and should have kept away, and all these problems, but as I’d taken the step myself, I had to stick with it. … It became an extra duty, in a way, to stand in all the strife because ... I knew through my work what drug use was about but still I crossed this boundary of my own free will. I tied myself to him emotionally. I took on the responsibility for all this and was determined to get him back to normal again.’ (Anna) ‘Even though I think that there are many forms of mental illness that would make me extra wary of going into a relationship, nevertheless it’s like a duty to get on with something. You must at least try. You can’t just give up at the very first hurdle. It would take a lot to change that for me and I still believe it.’ (Maria) The statements draw on a narrative describing how there may be troubles arising from being with someone with substance-​use problems, that you should know this, and that if you go into it anyway, you must endure it. 98

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The main theme of this narrative positions the partner as having a special responsibility to handle the challenges that may come. Some of the stories of commitment draw on a narrative that portrays care and love as contributing to recovery. For example, from Anna: “It’s a beautiful thought that if only someone is loved enough, believed in enough and valued enough, and if they have as comfortable a life as possible, they will be able to stay off drugs and function well.” Anna’s partner had several relapses. Anna explained how her understanding of commitment and co-​responsibility for the recovery process made her try to create positive change by enduring, accepting and showing boundless love: ‘When you believe, if you believe, that the solution is through love, where love is understanding, it’s acceptance, it’s inclusion, it’s everything, all the comforting during abstinence symptoms, paying bills or debts … if you do all that. If that’s what you must do to cure addiction, which is what I thought, then I am also responsible … and if it doesn’t work it’s because I have failed. I can’t be loving him enough. Do you see? … And that’s why I went back again and again. It was so ingrained.’ (Anna) In the interview, Anna described an ambivalence to this line of thinking, and talked about how her understanding of love and her role in the recovery process have been crucial to how she has acted. She explained how allowing herself access to other thoughts that challenged the understanding that love can heal led her to distance herself more from her husband’s recovery process, to set more boundaries and to eventually divorce him. But the experience of commitment did not let go. Her ambivalence to the claim that love can heal her partner is evident in Anna’s statement: ‘It’s a beautiful thought, but it means, too, that everyone got it wrong when it doesn’t work out that way. Then it’s our fault, right? That’s a logical conclusion, isn’t it? It can’t be right though, because then I can just condemn myself to death. And sometimes I do [cries] … It’s the same for all addictions, none of them can be controlled by external things. No matter what we have in place in life; he had interesting jobs, he had been promised further professional development. That was his greatest dream. He had beautiful apartments. He had nine cars. He had everything you could wish for. But still it was not enough. I truly believe that nobody could have been loved as much as him.’ (Anna) Although Maria also talked about her obligations as a partner, she restricted her role much more than Anna did: 99

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‘We agreed from the very outset that there was no way I could be responsible for his treatment. That would never work, never, and he also completely accepted this. And I think this has been good … because I’m supposed to be the partner, aren’t I, and not go into the role of therapist. I’m a human being and need to talk when there are challenges, and there are challenges in all relationships, aren’t there, and he’s also a person I can talk to when I’m worried about something. That’s what I try to do, we try as well as we can, and I think we’ve managed it quite well.’ (Maria) Maria points out the equality of the relationship and the fact that one partner being in a recovery process does not create any special positions in their relationship.

“What’s the matter with him really?”: a story about underlying vulnerability A third story we found in the material we have labelled, ‘A story about underlying vulnerability’. Both Maria and Anna presented stories in which they search for meaning in the difficulties they have experienced, even when substance use was not a current challenge. Their descriptions show a search for explanatory models regarding how emerging challenges are to be understood and their attempt to understand what their position is in meeting these challenges. Maria formulated this as follows: “In the past there has been constant drug use over time. All the confusion, all the fear that he must have felt about getting drug free: Can I cope with coming home, can I understand, has there been lasting damage, or what’s going on with me?” In this story, Maria positioned herself as someone who should be capable of coping with all this and understanding it: “We should be able to cope with this, this difficult part, this phase, we should be able to cope with this, given time … And it lasts a long time, some people say up to one year, and for some even longer.” Both Anna and Maria talked about the changes their partners had been through as powerful and great upheavals, and accepted that change takes time. Even so, they described it as a challenge of understanding and acceptance. They also described a curiosity as to why the substance-​use problem arose, and whether there was an underlying problem that still existed: “I think a lot about what underlies all this. What was it that maintained the addiction, that stopped him from recovering for such a long time? It must have been something very powerful,” said Maria. Maria told how her partner’s previous life, dominated by drug use, had consequences for their life together later: 100

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‘For example, in relation to finances, his moods and his vulnerability about his childhood. It was sort of hidden, but I’ve become much more aware of it now. Financially, we’re not as good at managing compared to your average 50-​year-​olds, and that’s something that can make me really angry.’ (Maria) Here, Maria draws on established cultural beliefs about normality, about what is ‘normal behaviour for 50-​year-​olds’. A narrative present among others in Norway characterises modern couples as equal and with equal responsibilities, a narrative which also conveys an expectation that both partners contribute to financial and practical matters (Flemmen, 2008; Aarseth, 2018). This narrative creates a cultural resource from which Maria can tell a story in which she and her partner are not as good at managing as others. Anna described difficulties in understanding the challenges she experienced with her partner, even when he was abstaining from alcohol, and she described a search for explanations of how her partner’s difficulties should be understood. She referred to mental health diagnoses, including borderline personality disorder and attachment disorders, as possible explanations: ‘This is where it’s so difficult for me to understand. What is substance abuse, and what is personality disorder? That’s why it’s been so very difficult for me to get a grip on these types of narrative. What’s the matter with him really? Was he evil, was he bad, was he ill? In that case, what type of illness, what on earth was it?’ (Anna) In trying to understand the challenges they faced, even when the main problem, the drug/​alcohol use, was not currently present, these women drew on established narratives of what causes troubles. One such culturally shared narrative is that challenges are associated with personality disorders; another is that challenges are associated with childhood experiences. The narrative that describes substance-​use problems as being a result of underlying vulnerability provides a basis for being curious about whether this vulnerability is still present.

“I don’t want to make our lives sound so special”: a story about normalisation One story, especially told by Maria, is that having challenges in a relationship is normal and not something special for people in recovery. A main theme running through this story is that everyone has a burden to carry: ‘In other people, there can be other things that are challenging; most adult people have something or other which is a burden they have 101

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to carry with them … Some have heart problems, some have mental illness, it can be all sorts of things, where you think that people aren’t looking after themselves properly or where you disagree with what they’re doing or get worried … There are so many ways of dealing with challenges that can be just as challenging. What about someone who goes into a deep depression, lies down, runs away, disappears, cuts himself off, or God knows how many other ways there are of not dealing with things, I don’t really know. I don’t want to make our lives sound so special.’ (Maria) In Maria’s story, having substance-​use problems is compared to other psychological and physical health difficulties, all different ways of “not dealing with things”. Being concerned about a partner is portrayed as a general experience and not as something that is special for partners of people in recovery. Talking about challenges in this way means that being the partner of someone who is in long-​term recovery does not become a special position to hold. Maria presents periods of substance use in terms of a story of normalisation, where these periods are not critical events and do not necessarily make things worse or more critical than what other couples may experience: “If a relapse happened, I wouldn’t have thought it critical. It’s just a question of working through it in some way. It’s a good way of thinking that relapse is not the worst of all worlds.” If a period of substance use happens, the solutions to this are normalised as “working through it in some way”. Maria said that her partner had one episode of use, as far as she knows: “Then he went up to our holiday cabin, so I never really saw it, but I was informed that he’d taken something and gone to the cabin to calm himself down. And that was it.” The episode of use in Maria’s story is not made out to be anything critical for their relationship. Nor does she position herself as a key agent, either of the cause or of the solution. This way of thinking about the recovery process and relapse means that events in her husband’s recovery process do not have an overwhelming impact on her everyday life. From this perspective, Maria seems to be challenging the cultural narrative that addiction is a very special problem. For Anna, who experienced several episodes of ongoing substance use by her partner, the story of normalisation is more fragile and ambivalent, nearly broken: “Yes, it could be destructive, but it was not destructive 24 hours a day. Then I would not be in that relationship.” It seems that the problems she experienced were so visible and overwhelming that it was difficult for her to talk about them as normal and understandable: “I can’t, and I’m not going to use a lot of effort explaining to people. I don’t do that. No one would understand it anyway.” 102

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Discussion The aim of this Norwegian study was to explore how women partners talk about their lives with men in long-​term recovery. This topic is at the crossroads of several research perspectives and areas of knowledge. Firstly, there is the perspective of research on long-​term recovery that highlights the highly complex problems resulting from substance use (Beccaria and Prina, 2016). Secondly, there are the relatives’ perspectives, including partners’ experiences, which in the research are also described as a process over time (Weimand et al, 2020). A third perspective shows how stories are templates for experiences. By identifying and naming the types of stories our interviewed women told, it may help other relatives to recognise and to think about what kind of stories they are telling. The analysis can also provide a basis for reflecting on what stories are fruitful to tell and what stories one wants to be liberated from. The analysis may help professionals and other support providers to more readily hear how relatives’ stories are multifaceted, as if woven together with different threads. Instead of relying, for example, on the dominant polarised understanding of the recovery process as either a demanding process of substance use in which the partner must protect herself, or as a resolved process wherein substance use and its associated challenges are over, this analysis is based on the assumption that experiences are highly contextual and fluid and that different voices exist side by side. Understanding partners in long-​term processes means understanding both the subject and the relationship as existing in multiple stories about what substance use problems are, what long-​term recovery is and what love is. If help providers manage to hear the different threads of the stories being told, they will more easily be able to provide support tailored to the individual’s specific needs. The findings of the study presented here illustrate how cultural narratives are resources from which people construct their stories. Narratives about love, about substance use and about recovery provide partners with themes, characters, images and plotlines that they use to construct their specific stories. For example, narratives of romantic love (Øfsti, 2008) and narratives of modern relationships as based on equality and the sharing of responsibility (Flemmen, 2008; Aarseth, 2018) are specific resources women can use to talk about their own relationships. Because of one partner’s earlier substance-​use problems, financial challenges may exist, social networks may be frayed and connections to employment may be loose. This, in turn, can make it difficult for the non-​using partner to tell a story that is consistent with established narratives. On the other hand, narratives about commitment and narratives saying that love contributes to recovery provide partners with resources to construct stories about obligations to face the challenges that may arise. To 103

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be aware of what kind of narratives are circulating in society is important, as these narratives form the basis of what stories can be told. Problems arise when existing narratives cannot help to make sense of the stories that are encountered (Frank, 2010). As Frank so descriptively expresses: ‘[A]‌story outside any narrative is a fish out of water: it can’t breathe and usually will have a quick end’ (Frank, 2010, p 122). The current study with two female partners has its strength in the comprehensive and detailed stories the informants told and in the close reading that the two interviews make possible. Narrative analysis asks specific questions about particular lives in a specific context (Emerson and Frosh, 2004). These women’s stories provide a deep insight into the research topic of this study. At the same time, our study is clearly limited in terms of filling knowledge gaps about families and long-​term recovery. Previous research has shown that substance-​use problems are contraindications for therapeutic work with couples, especially if the person using substances is unwilling to seek treatment (Vetere, 2012; Gottman and Gottman, 2015). At the same time, it has also shown that substance problems are long-​term difficulties marked by cycles of recovery, ongoing use and repeated treatment (Selseng and Ulvik, 2019). This chapter calls for further investigation of how partners’ multifaceted stories about love and commitment are met in practice. Within the dominant understanding of recovery as a short-​term process, and with a lack of knowledge about how families in long-​term recovery experience the recovery process, there is a risk that the welfare system may have little awareness of the need for support and help among family members. Further research is essential in order to address several important gaps in our knowledge, enabling us to help and understand families in long-​term recovery. We have focussed on female partners. It is equally important to examine the experiences and understanding of male partners, children, parents, siblings and, of course, the people in long-​term recovery themselves.

Conclusion The findings of this study identified four different stories that shed light on various aspects of how female partners’ experiences of long-​term recovery are framed. The four stories highlight love, commitment, worry about partners’ underlying vulnerabilities and the need for normalisation in couple relationships. The stories provide insight into some of the complexities related to being a partner of someone in a long-​term recovery process, and how the women’s experiences of being partners are culturally and socially embedded. We would argue that researchers and professionals in the fields of substance use, social work and family therapy need more awareness of how the experiences of partners in a long-​term recovery process are multifaceted and deeply embedded in a cultural context. 104

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Ray, G., Mertens, J. and Weisner, C. (2007) ‘The excess medical cost and health problems of family members of persons diagnosed with alcohol or drug problems’, Medical Care, 45(2): 116–​22. Rodriguez, L., Neighbors, C. and Knee, C. (2014) ‘Problematic alcohol use and marital distress: An interdependence theory perspective’, Addiction Research and Theory, 22(4): 294–​312. Russell, C., Davies, J. and Hunter, S. (2011) ‘Predictors of addiction treatment providers’ beliefs in the disease and choice models of addiction’, Journal of Substance Abuse Treatment, 40(2): 150–​64. Selbekk, A.S., and Sagvaag, H. (2016) ‘Troubled families and individualised solutions: An institutional discourse analysis of alcohol and drug treatment practices involving affected others’, Sociology of Health and Illness, 38(7): 1058–​73. Selseng, L.B. (2017) ‘Formula stories of the “substance-​using client”: Addicted, unreliable, deteriorating, and stigmatized’, Contemporary Drug Problems, 44(2): 87–​104. Selseng, L.B. and Ulvik, O.S. (2019) ‘Rusproblem og endring i eit diskursperspektiv: Ein analyse av praksisforteljingar’, Norsk sosiologisk tidsskrift, 3(6): 442–​56. Timpson, H., Eckley, L., Sumnall, H., Pendlebury, M. and Hay, G. (2016) ‘ “Once you’ve been there, you’re always recovering”: Exploring experiences, outcomes, and benefits of substance misuse recovery’, Drugs and Alcohol Today, 16(1): 29–​38. Ventura, A. and Bagley, S. (2017) ‘To improve substance use disorder prevention, treatment and recovery’, Journal of Addiction Medicine, 11(5): 339–​41. Veseth, M., Moltu, C., Svendsen, T.S., Nesvåg, S., Slyngstad, T.E., Skaalevik, A.W. and Bjornestad, J. (2019) ‘A stabilizing and destabilizing social world: Close relationships and recovery processes in SUD’, Journal of Psychosocial Rehabilitation and Mental Health, 6(1): 93–​106. Vetere, A. (2012) ‘Supervision and consultation practice with domestic violence’, Clinical Child Psychology and Psychiatry, 17(2): 181–​5. Weimand, B.M., Birkeland, B., Ruud, T. and Høie, M.M. (2020) ‘ “It’s like being stuck on an unsafe and unpredictable rollercoaster”: Experiencing substance use problems in a partner’, Nordic Studies on Alcohol and Drugs, 37(3): 227–​42.

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Long-​term recovery for the ‘adult children’ of parents who use alcohol in Iceland Jóna Ólafsdóttir and Amanda Clayson

Introduction The impact of substance use on the family unit remains an under-​ researched topic in Iceland. Research by one of the authors of this chapter (Ólafsdóttir, 2020) seeks to fill this gap, making an important contribution to understanding the impact of substance use upon various family members in Icelandic culture. The study on which this chapter is based focussed on the impact of substance use on a range of subgroups within the family system as a whole. This included parents, siblings, spouses, children and ‘adult children’ (that is, people who are now adults and who had grown up in a family setting where substance use was a feature) (Ólafsdóttir, 2020). While the primary focus of the core empirical study sought to understand the psychosocial, behavioural and physical effects of being brought up in a family impacted by substance use (Ólafsdóttir, 2020), we seek to extend this focus to consider the extent to which a notion of long-​term recovery for adult children is evident or supported within the Icelandic public health agenda. We begin with a brief overview of research, policy and practice within Iceland to provide background and context. First, we introduce the family as a key psychosocial influence, establishing a contrast between healthy family systems and the potential consequences of dysfunctional relations within families experiencing substance-​use disorder (SUD). We continue with a description of the wider Icelandic public health and specific substance-​use policy agenda, outlining the current support available to adult children who have grown up with parents engaged in problematic alcohol use. We finish this section by offering a broad introduction to recovery as a concept, before developing our thinking further with the introduction of a number of models and concepts pertinent to the recovery landscape. In particular, we present concepts of ‘recovery capital’ (Cloud and Granfield, 2008), social identity (Jetten et al, 2017) and the social identity model of recovery (Best et al, 2016). We use these models to provide a recovery-​focussed lens 108

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through which we examine the lived experiences of six adult children drawn from our core study. We conclude with our reflections and discussion of the specific context of adult children and long-​term recovery, the implications for policy and practice and recommendations for further study on this topic in Iceland and beyond.

The Icelandic context: research, policy and practice The family Research into the health of the family unit in Iceland and elsewhere indicates that a healthy family functions as an effective system when it operates in ways that provide a sense of safety, unity and contentment for its members (Júlíusdóttir, 2001; Johnson and Stone, 2009). Relationships in a healthy family are characterised by warmth and cohesion; family members consider themselves equally valuable and are conscious of their roles in contributing to each other’s needs (Júlíusdóttir, 2001; Johnson and Stone, 2009). Families experiencing SUD, however, often experience dysfunctional family relationships. Living with a parent’s alcohol dependence can cause great stress for a child, which can result in both short-​term and long-​term harm. It can make it more likely that the child, in their adolescent and adult years, may start to misuse alcohol or other drugs in order to cope with difficult feelings, such as anxiety and depression, brought about by their history of parental substance use (Orford et al, 2005, 2010; Velleman et al, 2008; Johnson and Stone, 2009). Predominant emotions for children and adult children who were brought up by parents with SUD include anxiety, fear, guilt, anger, low self-​esteem and impaired self-​confidence (Velleman and Templeton, 2007; Velleman et al, 2008). These emotions can reduce the quality of life of individual family members from childhood through to adulthood and can prevent healthy emotional connections, healthy intimate relationships and positive communication in their interactions with others as they mature (Earley and Cushway, 2002). Public health policy and substance use The notion of a good quality of life is presented as an aspiration for all citizens by the Icelandic government. A recent unveiling of a ‘Wellbeing Framework’ by the Prime Ministerial Committee proposed 39 indicators that cover social, economic and environmental dimensions of quality of life (Government of Iceland, 2019). The framework recognises that psychosocial health is an important part of a broader well-​being agenda. According to a survey commissioned by the Prime Minister’s Committee, the general public in Iceland views good health and access to healthcare as the most significant factors affecting their quality of life. These are followed by relationships 109

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with friends, family, neighbours and colleagues, housing (secure housing, cost of housing, supply of housing) and making a living (income and assets) (Wellbeing Economy Alliance, 2019). Current substance-​use policy in Iceland recognises it as a healthcare issue which can have implications beyond the individual with the SUD. This acknowledgement of the negative consequences of growing up within a substance-​affected family environment is embedded within the Icelandic legal system. In Act no. 40/​1991, Assistance for alcoholics and the prevention of drug abuse, it is stated that family members of relatives with substance dependence should be provided with appropriate counselling and assistance (Ministry of Welfare, n.d.). One of the core goals is to support vulnerable groups, especially the children of parents who are substance dependent. Publicly funded support is open to any family member of an individual identified as having a SUD. Access to this support is not dependent on the substance-​using individual participating in any form of treatment or support service. The four-​week programme, referred to as family group therapy, covers a range of topics aimed to deepen participants’ understanding of substance dependence and its harmful effects on families. It aims to teach families how to manage or eliminate the negative impact that substance dependence has had on their family of origin, and thus how to ‘recover’ from the resulting distress and generally poorer quality of life. Promotion of self-​help groups such as Alcoholics Anonymous (AA) and Al-​Anon form part of the programme. Although termed ‘therapy’, the programme is more accurately described as psychoeducation. It centres around whole-​group workshops attended by numerous family groups with little tailoring to the specific needs of particular individuals. Although there is some access to social workers and specialist addiction counsellors, such access incurs a small cost and is not routinely offered. For those with the financial means, there is access to private practitioners across a range of psychological and other talking therapies. Recovery While there is an informal understanding of a concept of recovery in Iceland, it is not explicitly referenced in substance-​use policy. The language of ‘disorder’ and treatment could suggest a closer alignment with a more bio-​medical approach rather than one grounded in recovery principles. At the moment, there do not seem to be explicit links between substance-​use policy and the wider public health and well-​being agenda. Our aim here is not to define or reduce recovery to a set of features or characteristics. In line with Best et al (2015, p 194), we prefer to concentrate on what they refer to as ‘the mechanisms of change or the social context in which change occurs’, as a more productive backdrop to evolving welfare 110

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policy and practice within Iceland. Recovery is a complex, multidimensional and dynamic process, as is the psychological environment where recovery unfolds. As a result, factors that are helpful, or harmful, to recovery at a given time may be less relevant at other times (Laudet et al, 2008). Recovery is not understood as something that has an ‘end state’ (White et al, 2005) but rather as the ‘ongoing quest for a better life’ (Best and Laudet, 2010, p 2).

Examining the experiences of adult children through a recovery-​focussed lens The research subgroup of adult children is our focus within this chapter. The core research examined how adult children experienced negative side effects of parental substance use upon their mental, physical and social states. It also explored negative impacts on communication and cohesion within the family and the impacts this had on their own intimate relationships with their partners and children. The overall research project used a mixed methodology combining quantitative and qualitative studies. The quantitative study focussed on two areas. These included determining if participants who had lived with an alcohol dependent person in their childhood had been negatively affected by this experience, and whether they reported any negative effects from others’ alcohol consumption within the last 12 months. Here we draw upon the data from the qualitative part of the study provided by a sample of six adult children who took part in the research. The six people were identified through purposive sampling from some form of support or therapy service. There were three men and three women; all were between 20 and 30 years of age. Three had grown up with an alcohol-​dependent mother and three with an alcohol-​ dependent father. Four of the participants reported that they had sought professional help from a psychologist or a psychiatrist, and two of them had been assisted by a social worker as well. Four of the six had sought family group therapy. The nature of the support and the reason for seeking it was varied. Two of the male participants had been in treatment because of their own drinking problems and had been sober for more than four years. The remaining four individuals did not report issues with problematic substance use themselves. Within the qualitative aspect of the study, participants were invited to express themselves openly about their own perceptions and experiences of growing up in a family where one or both parents were, or continue to be, dependent on alcohol. The interviews were analysed using a phenomenological approach as a tool to identify or categorise concepts that arose from the experiences of interviewees (Padgett, 2017). Analysis resulted in identification of six main themes from across all participant interviews. Here, we focus on the four themes that connect with our 111

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exploration of a notion of recovery (although this was not explicitly discussed at the time). First, all six interviewees, irrespective of why they sought support, described how their parent’s alcohol use had negatively affected their own mental, physical and social states. Second, they expressed low self-​worth and lack of confidence in their adult years. Additionally, these interviewees reported high levels of depression, anxiety and stress as well as experiencing low communication and cohesion within their own (adult) family (Ólafsdóttir et al, 2018, 2020). The third finding among the subgroup was that they had all experienced responsibility in childhood which did not fit with their individual maturity level or their age. The fourth finding was that their parent’s alcohol consumption had a negative influence on the communication and cohesion between the child and the parental subsystems within the family of origin in their adult years. These results support other European studies by Velleman and Templeton (2007) and Velleman et al (2008), who found that individuals with alcohol-​ dependent parents may develop negative feelings like anxiety, fear, guilt, anger and low self-​esteem. Recovery frameworks Here, we present a number of recovery concepts and models against which we interpret the experiences of the adult children shared through their interviews. It is not our intention to go into detail about the models chosen but to offer them as a helpful lens through which to interpret the experiences of the adult children. Recovery capital The concept of recovery capital reflects the notion of an individual recovery journey, yet one practised within a social context (Cox et al, 2016). Here, capital represents distinct areas of assets that could be enhanced and barriers to be addressed in an individual’s recovery process. There are a number of different ways to organise and identify types of capital. Cox et al (2016) highlight four interrelated components: social capital (concerned with relationships, for instance families, friends and groups), physical capital (property, housing, savings), human capital (educational and personal, affective resources) and cultural capital (values and beliefs adapted to the membership of cultural groups). Mawson et al (2015) view social capital as things such as supportive social groups and family relationships. They also split personal capital into material resources, such as finances and housing, and intra-​personal capital (such as self-​esteem, motivation and self-​worth). In Table 9.1 we use the grouping of personal, social and community capital (White et al, 2008). 112

Adult children of alcoholics Table 9.1: Examples of recovery capital by type Recovery capital type

Examples of recovery capital

Personal

Values Knowledge Educational/​vocational skills and credentials Problem-​solving capacities Self-​awareness Self-​esteem Self-​efficacy Self-​confidence in managing high-​risk situations Hope and optimism Perception of one’s past/​present/​future Sense of meaning and purpose in life Interpersonal skills

Social and familial

Intimate relationships Family and kinship relationships (defined here as family of choice) Social relationships supportive of recovery efforts

Community

Mutual aid Other peer organisations

Source: White et al, 2008

While we recognise that the sample size of this study is small and not reflective of all adult children of substance-​using parents across Iceland, the experiences of the six individuals here offer a useful illustration. The following quotes reflect common experiences across all six participants and offer a way of interpreting the issues faced by the adult children within the study; this may contribute to further exploration of recovery-​ oriented support systems. Individuals’ names have been changed to protect their identity. Personal recovery capital While all of the individuals reported significant material capital such as high educational achievement and financial stability through employment, there was a clear lack of what Mawson (2015) describes as intra-​personal capital such as self-​esteem, self-​worth and self-​confidence. For some, this is presented in a way that can seem pervasive and emotionally very demanding: “My self-​confidence is very low, and it is a huge obstacle to deal with … I am always doubting myself and feel I am not good enough” (Dóra, female). For others, a more context-​specific experience is evident. Here, a sense of efficacy and value can be interpreted as role-​and context-​dependent and fragile: 113

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‘I can feel that I have good confidence in my work … [but] in my personal life, I don’t feel self-​confidence and I cannot talk about how I feel … if someone asks me, I can feel the stress rising and I get very small inside myself, then I lose my self-​worth.’ (Lilja, male) Social and familial recovery capital While all six participants reported a range of familial relationships, with their family of origin and/​or their own adult family relationships, it is not clear to what extent these may be seen as positive social recovery capital or, as White et al (2008) describe, as supportive of a recovery process. What is evident, however, is an awareness and acknowledgement among the participants of the negative impact of growing up in such circumstances and their family dynamics. This insight can be viewed as a helpful contributor to the development of social recovery capital in the future, especially in supporting the growth of healthy intimate relationships: ‘I have been anxious and felt depressed from childhood and I have difficulty trusting others. My father cheated on my mother many times and me and my siblings were witnesses to her anger, sorrow and rejection in our childhood years. I can feel that distrust of others impacting my own partnership.’ (Katrín, female) For others, such self-​awareness has progressed to a change in behaviour. Here we can see a conscious and discerning shift in the relationship between adult children and their parents that could be interpreted as contributing to a recovery process: ‘I am in contact with both of my parents but no more than necessary; for example, we don’t spend holidays together like normal families do. In my mind, my mum is a chronic alcoholic and my dad is suffering from chronic co-​dependency. I can always talk to my father and he is always ready to help me if I need it.’ (Benedikt, male) Community recovery capital Community resources can be diverse and can include policies, attitudes and resources specifically related to helping individuals resolve issues associated with SUDs (White et al, 2008). In particular, mutual aid organisations and other peer organisations represent key community assets and recovery support (Best et al, 2015). Here, insights from two of the adult children reflect a common experience across the whole group. For those attending groups such as AA, membership is reported as helping them stay away from 114

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relapse (in terms of their own substance use) as well as helping them cope with everyday life: “The AA meetings help me stay in the day and remind me how lucky I am to be sober and have my own family” (Siggi, male). Similar positive accounts concern those accessing support related to their family connections to alcohol use rather than their own personal use: ‘Professional help and Al-​Anon meetings have totally saved my life. I was broken inside, which I related to my childhood … and also helped me into long-​term recovery, so my own family today, my spouse and children are not affected by my childhood experience of being brought up by a heavy alcohol-​drinking parent.’ (Guðmundur, male) Here we see the interconnectedness of all three domains of recovery capital in one shared experience: community capital through attendance at Al-​ Anon impacting the development of social and familial capital through the individual’s affirming relationships with his spouse and children. Although not mentioned explicitly, a degree of personal recovery capital seems evident through the articulation of positive change from their past to present experience and optimism for the future.

Long-​term recovery and identity We continue our recovery-​focussed exploration by considering the notion of social identity. Here, we introduce the concept and consider its value in interpreting the lived experiences of our sample group. Jetten et al (2017) suggest a social-​identity approach starts from the assumption that developing an understanding of a person’s thoughts, beliefs and actions requires insight into how they categorise themselves in relation to others. They highlight the importance of social identities as powerful psychological resources that have an important role to play in managing and improving health. In their social identity model of recovery, Best et al (2016) frame recovery as involving changes in a person’s social world that coincide with changes in a socially derived sense of self. For them, a social-​identity approach involves the emergence of a new sense of self. Recovery is seen not as a personal attribute that can be observed and measured (Best and Lubman, 2012) but rather as a socially mediated process. This can be facilitated and structured by changes in group membership, resulting in the internalisation of a new social identity. For adult children who grew up in family units with alcohol-​ dependent parents, recovery can be seen to represent a shift from the initial social identity of the family of origin to a recovery-​based social identity. As Dóra (female) demonstrates here, this can be complex and nuanced, as the hurts and harms of the past prove to be enduring: “I don’t recognise anything else [other] than being a child and an adult suffering with anxiety.” 115

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While this does not detract from the significance of the notion of identity change presented by Best et al (2016), it is helpful to see this as a continued conversation between the past, the present and the future. Cox et al (2016, p 5) point to the potential role of communities in ‘providing direction and support for the forging and maintaining of new social identities for individuals’. Their view is that successful recovery is premised on the relationship to and with the social context(s) in which recovery will be sustained. In this study, mutual aid groups such as AA and Al-​Anon provide potential for the development of a recovery-​based social identity, enabling members to use the group as a basis for self-​definition (Best and Lubman, 2012). Here, we can see this as a process that can manifest in an evolving recognition and reframing of identity over time: ‘When I started the AA programme, I just thought I was an alcoholic and I was the problem, but after a while I understood that I am also an adult child of an alcoholic, so I started to go to Al-​Anon meetings, and they worked for me too.’ (Siggi, male) Webb et al (2020) add to the current recovery and social-​identity discussion with their focus on identity growth in long-​term recovery. For the authors, the notion of identity change in recovery resonates with identity development theories, whereby identity evolves and matures throughout the lifespan. Long-​term recovery and the family Development theory indicates that maturation is a process of growing away from our early social identity within our families and childhood social group towards a more personal identity that can be far removed from our parents or cultural roots (Côté, 2002). So too in recovery, Webb et al (2020) show that in longer-​term recovery a person can grow from their early identity of being a drug user, alcoholic or a person with a mental illness to having a new identity that is more resonant with a sense of real self (Rogers, 1961). Recovery processes such as recovery capital and identity change resonate with notions of maturation from earlier selves, but for some this requires work, especially where there is trauma that undermines a person’s sense of autonomy. As Kerr and Bowen (1988) show, autonomy is an essential element of being able to have healthy relationships, and transition from dependence to autonomy is key to being able to return to a state of togetherness in an adult relationship. Self-​determination is recognised as a goal in family therapy and wellness (Ryan and Deci, 2017; Anderson, 2020). Recovery processes may lead to a redefining of relationships and early socialised roles with the family of origin. This may manifest as a healing or possible distancing. Here, a sense of autonomy, agency and establishment of clear boundaries is evident: 116

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‘Six years ago, I was in the position where I needed to move back in with my parents after my divorce. I decided to ask my father not to drink every other weekend when I had my daughter during the time I was staying in their house. My father agreed to this but the second weekend I had my daughter he drank, so I just moved out. Today our communication is very shallow or on the surface, if we have any.’ (Benedikt, male)

Discussion ‘Finding’ recovery: a hidden path? The experience of adult children who grew up in family units where one or both parents engaged in problematic alcohol use is varied both in terms of the circumstances of this experience and the consequences of this for them later in life. For some, there may be minimal negative impact from these experiences. Having developed resilience to cope with difficult situations, some find that they are able to lead a fulfilling and positive life seemingly unaffected by their childhood past (Velleman and Templeton, 2007; Park and Schepp, 2015). For others, however, the impacts are significant, variable and potentially lifelong. Although not explored in detail here, studies by Ólafsdóttir (2020) shed light on these adult children’s attitudes and behaviours in later years; for example, some choose to remain abstinent from alcohol due to negative experiences around parental alcohol dependence. For others, however, a claim not to have been affected by their childhood environment may be at odds with their own unhealthy drinking patterns in adult life. This indicates that, for some, early childhood difficulties can go unrecognised or unacknowledged, while others recognise the effects of these early life experiences and seek out help and support. Recovery in the context of adult children does not always hinge on their own personal substance use. For those adult children who experience their own problematic substance use, channels to support are more explicit within the current Icelandic system. Their own diagnosis of SUD opens up a pathway of support that helps them to understand their own substance use and make links with and address the consequences of their childhood experiences. For others, however, where personal problematic substance use is not present, the consequences and significance of their early life experiences may remain unclear. For them, the route to recovery may begin with seeking help for a range of psychosocial issues. For example, this might include issues such as their own depression or anxiety. For others, this can manifest in problems within their own adult family relationships and dynamics. This might be compounded by the fact that those around them, such as other family members or professionals, have not made the connection between their past life experiences and current, seemingly unrelated events 117

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or issues. In whatever way the person (and those around them) is impacted, a key aspect of their journey towards recovery is influenced by the ability to make these links and to make peace between these experiences and some of the issues they experience later in life. The Icelandic health system leans towards a more diagnosis-​focussed approach, with support for adult children being piecemeal and deficit oriented rather than grounded in wellness, strength and growth. The issue of long-​term recovery in this context is a somewhat hidden issue. This is not only due to individuals not understanding the issues themselves but also to a lack of understanding by many professionals or the systems they work within. For practitioners, such as social workers and other healthcare professionals, more needs to be done to help them to recognise the emotional and mental health challenges faced by adult children of parents who used substances, and to be confident, competent and committed to addressing them. For example, when individuals seek support for psychosocial issues such as depression or anxiety, practitioners need to routinely ask about their upbringing as part of the exploratory process. This is not currently the case in Icelandic health and social care practice. Opportunities for earlier recognition and support for adult children, wherever they or their families come into contact with social services, childcare services or healthcare services, may open the gates to a recovery process. Emerging evidence from the research by Ólafsdóttir (2020) points to higher levels of unemployment and lower educational attainment within some of the study’s participant groups. It is not particularly surprising, given their access through private therapeutic services, that the adult children within the core study explored here had higher levels of what White et al (2008) refer to as personal or physical capital (employment, educational credentials, financial security) as compared to children of alcoholics who are not in private therapeutic services. Opportunities to ‘find’ and sustain long-​term recovery seem to be influenced by an unbalanced system that compounds the hidden nature of the issue. Recovery-​oriented support systems It is not our intention to suggest the development of a specific package of support to progress adult children on a path to long-​term recovery but to offer a number of insights that may frame further consideration and conversation within the Icelandic context. Although designed to support communities in the coordination of services supporting recovery from SUD, the guiding principles behind what is referred to as the recovery-​oriented systems of care–​model (ROSC model) resonate with our understanding and experiences to date. As Ashford et al (2019, p 3) describe: ‘Recovery looks different for different individuals and matches should be made to where an individual is in their recovery process with appropriate interventions and 118

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resources. Recovery is a process along a continuum. Peer support, family support and involvement are important components of any recovery process. Any notion of ‘long-​term-​ness’ is likely to have a different connotation for different people in different contexts. Although not without challenge, we find the notion of recovery capital to be a useful broad container with which to conceptualise a more progressive recovery-​oriented approach. For us, however, the notion goes beyond the focus on the individual and needs to extend to the family system, community and wider society. We interpret long-​term recovery as an unfolding, layered process influenced by a complex set of ‘ingredients’. This may involve learning, unlearning or relearning how to establish and sustain boundaries, positive relationships and interpersonal communication. For many adult children, this involves working through issues around loss and grief or possibly the implications of ongoing ties and responsibilities, especially for adult children whose parents remain in active alcohol dependence. Access to appropriate psychosocial support is a key component in a cohesive and responsive system that is open to all citizens. Professionals may need to develop skills in recognition and intervention for individuals and for family work, as appropriate. This might include working directly with the family (of origin or the adult family) or considering family dynamics when working with the individual in helping them to resolve their issues around the socialisation they experienced in the family when they were children. Any discussion around long-​term recovery must consider the contribution of lived experience, peer support and mutual aid. Although there was a clearly expressed positivity around attendance of mutual aid groups such as AA and Al-​Anon for the adult children within our core study, it was outside the scope of the study to probe further into the specific contribution these made. Personal experiences of long-​term participation, activism and development of recovery-​oriented social networks in the UK underpin our experience, expertise and interest in exploring the potential in Iceland. Supporting the growth of grassroots community activity would enhance the scale and scope of recovery activity beyond the current narrow focus of 12-​step fellowship groups. We argue that this would not only extend opportunities to develop and embed all forms of recovery capital but would also reinforce a more strength-​based approach that lies at the heart of recovery principles. Despite arguments that the move to self-​management in healthcare is based on the economic demand for cost effectiveness, it also supports wellness and recovery principles through personal ownership and empowerment. Open and visible recovery can be a key contributor to helping others find and sustain recovery. Identification, resonance and trust form the bedrock for exploring potentially painful and perplexing emotions and behaviour. People in long-​term recovery often highlight a notion of reciprocity as playing 119

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a key role in their own recovery processes as well as influencing a wider community and societal agenda to reduce stigma and promote social justice.

Conclusion The primary goal for our chapter was to explore the extent to which a notion of long-​term recovery for adult children is evident or supported within the Icelandic public health agenda. For the six individuals in our core study, the situation appears varied. While a number of participants make specific reference to an experience of long-​term recovery, others appear to be at earlier points in a recovery process (however that is framed). The fact that all participants sought personally funded support suggests a need that is not being adequately met within the current system. In considering the circumstances of this particular group, we believe we have opened up the issue for wider consideration across broader areas of substance use and mental health. Although little explicit reference to recovery is currently present in Icelandic substance-​use policy, we recognise fundamental elements of what we have presented as recovery capital as present within the newly emerging well-​being agenda. While Iceland appears to be embracing the principles of wellness and resilience as aspirations for all citizens, it has yet to develop its health systems fully to support these principles in the mechanisms of service provision and access. Despite being in its early stages of development, we see opportunities for Iceland to move towards more recovery-​centred approaches across substance use and mental health. This would align policy and practice with wider international perspectives, and ground services and support within recovery principles, shaping practices based on social assets rather than diagnoses and the presence of symptoms. Moving forward, we see the value of closer consideration of the social and political context and the significance of the family as key influencers of intergenerational health and well-​being. In bringing our chapter to a close, we reiterate our call to draw together the expertise of those with lived experience and professionals in a process of genuine co-​production as the basis for developing a truly recovery-​focussed system. References Anderson, J. (2020) ‘Inviting autonomy back to the table: The importance of autonomy for healthy relationship functioning’, Journal of Marital and Family Therapy, 46(1): 3–​14. Ashford, R., Brown, A.M., Ryding, R. and Curtis, B. (2019) ‘Building recovery ready communities: The recovery ready ecosystem model and community framework’, Addiction Research and Theory, 28(1): 1–​11, doi:10.1080/​16066359.2019.1571191

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Mawson, E., Best, D., Beckwith, M., Dingle, G.A. and Lubman, D.I. (2015) ‘Social identity, social networks and recovery capital in emerging adulthood: A pilot study’, Substance Abuse Treatment, Prevention, and Policy, 10: 45, doi:10.1186/​s13011-​015-​0041-​2 Ólafsdóttir, J. (2020) ‘Addiction within families: The impact of substance use disorder on the family system’, Doctoral Thesis (PhD), University of Lapland, Finland. https://​lauda.ulapland.fi/​bitstream/​handle/​10024/​ 64444/​Olafsdottir_​Jona_​Margret_​Acta_​electronica%20Universitatis%20 Lapponiensis%20292.pdf?sequence=1&isAllowed=y Ólafsdóttir, J., Hrafnsdóttir, S. and Orjasniemi, T. (2018) ‘Depression, anxiety, and stress from substance use disorder among family members in Iceland’, Nordic Studies on Alcohol and Drugs, 35(3): 165–​78, doi:10.1177/​ 1455072518766129 Ólafsdóttir, J., Orjasniemi, T. and Hrafnsdóttir, S. (2020) ‘Psychosocial distress, physical illness, and social behaviour of close relatives to people with substance use disorders’, Journal of Social Work Practice in the Addictions, 20(2): 136–​54, doi:10.1080/​1533256X.2020.1749363 Orford, J., Natera, J., Copello, A., Atkinson, C., Mora, J., Velleman, R., Crundall, I, Tiburcio, M., Templeton, L and Walley, G. (2005) Coping with Alcohol and Drug Problems: The Experience of Family Members in Three Contrasting Cultures, London: Taylor and Francis Group. Orford, J., Copello, A., Velleman, R. and Templeton, L. (2010) ‘Family members affected by a close relative’s addiction: The stress-​strain-​coping-​ support model’, Drugs: Education, Prevention and Policy, 17(1): 36–​43, doi:10.3109/​09687637.2010.514801 Padgett, D.K. (2017) Qualitative Methods in Social Work Research (3rd edn), Thousand Oaks, CA: Sage. Park, S. and Schepp, K.G. (2015) ‘A systematic review of research on children of alcoholics: Their inherent resilience and vulnerability’, Journal of Child and Family Studies, 24(5): 1222–​31. Rogers, C.R. (1961) On Becoming a Person: A Therapist’s View of Psychotherapy, Boston, MA: Houghton Mifflin. Ryan, R.M. and Deci, E.L. (2017) Self-​Determination Theory: Basic Psychological Needs in Motivation, Development and Wellness, New York: Guilford. Velleman, R. and Templeton, L. (2007) ‘Understanding and modifying the impact of parents’ substance misuse on children’, Advances in Psychiatric Treatment, 13(2): 79–​89, doi:10.1192/​apt.bp.106.002386 Velleman, R., Templeton, L., Reuber, D., Klein, M. and Moesgen, D. (2008) ‘Domestic abuse experienced by young people living in families with alcohol problems: Results from a cross-​European study’, Child Abuse Review, 17(6): 387–​409, doi:10.1002/​car.1047

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Webb, L., Clayson, A., Duda-​Mikulin, E and Cox, N. (2020) ‘ “I’m getting the balls to say no”: Trajectories in long-​term recovery from problem substance use’, Journal of Health Psychology, available online from: https://​ journals.sagepub.com/​doi/​10.1177/​1359105320941248?url_v​ er=Z39.88-​ 2003andrfr_​id=ori:rid:crossref.organdrfr_​dat=cr_​pub%20%200pubmed Wellbeing Economy Alliance (2019) ‘Iceland government unveils wellbeing framework’, available online from: https://​wellbeingeconomy.org/​ iceland-​government-​unveils-​wellbeing-​framework White, W. and Cloud, W. (2008) ‘Recovery capital: A primer for addictions professionals’, Counselor, 9(5): 22–​7. White, W. and Kurtz, E. (2005) The Varieties of Recovery Experience, Chicago: Great Lakes Addiction Technology Transfer Center

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PART III

Diversity across the lifespan in long-​term recovery

This final part of the book provides a reminder of the breadth and reach of long-​term recovery issues. These five chapters illustrate specific circumstances and contexts all too often not readily associated with explorations of long-​ term recovery. They also include a variety of approaches and styles adopted by the authors. A more theoretical approach frames the focus in Chapter 10. Here, the authors blend two distinct evidence reviews to critically explore resources that may hinder or support the recovery process of persons who identify as migrants and ethnic minorities (MEM). This includes a critical literature review of the concept and implementation of cultural competence and a narrative review of recovery capital through the first-​person recovery perspectives of a number of migrant people and people from ethnic minorities. Their resultant analysis signals the importance of considering social and structural determinants and resources in supporting stable recovery among MEM both in theory (epidemiology, cultural competence and recovery capital) and practice. Chapter 11 presents a compelling and novel comparison between identity transitions for children leaving care and for adults in recovery. Drawing on empirical research from two studies, the authors compare the process of ‘maturation’ from a largely passive, socially influenced identity to ‘individualisation’ and agency. They argue that this emanates, primarily, as participants in the studies gain greater confidence through volunteering and employment activities, while at the same time providing a context of communitas from shared experience. At the other end of the age spectrum, Chapter 12 presents a comprehensive picture of the realities and issues that can make long-​term recovery seem out of reach both for the older opioid users (OOU) and the practitioners involved in their care and support over many years. The research findings about implementation of a psychosocial intervention adapted for OOU highlight the significance of individual-​oriented definitions of success for the effectiveness of such interventions and how they can help OOU to improve their lives. Our final chapter in this section, Chapter 13 centres around the learning derived from a two-​year UK-​based research project around end-​of-​life care for people impacted by substance use. Insights from a series of poignant vignettes offer a powerful picture of how the complexities in people lives can endure 125

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and impact their experience of care at this most vulnerable of times. The authors draw on their knowledge of palliative care to suggest an alternative and nuanced conceptualisation of recovery. They offer a persuasive set of recommendations for the enhancement of substance-​use policy and practice that promotes a more inclusive, compassionate and person-​centred approach not only to people who are approaching the end of their life but to all people using substances.

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Social and structural issues in recovery among migrants and ethnic minorities: an exploration of cultural competence and individual recovery perspectives Charlotte De Kock and Aline Pouille

Introduction European population-​based studies on substance ​use prevalence among migrants and ethnic minorities (MEM) are scarce (De Kock, 2020b). The studies (for example Salama et al, 2018; Harris et al, 2019) suggest that substance ​use prevalence rates among first-​generation MEM (people who have migrated themselves) are lower compared to European host populations and that this may reflect substance ​use behaviours in countries of origin (Lemmens et al, 2017; De Kock, 2020b). Nevertheless, prevalence in this group is expected to become similar to that in the general population over time (Priebe et al, 2016). Less is known concerning the mechanisms that underlie substance use among MEM in Europe. MEM are often more exposed to known risk factors (for instance depressive symptoms, societal exclusion, pre-​and post-​migration circumstances) for substance use compared to non-​MEM counterparts (Missinne and Bracke, 2012; Giacco et al, 2018). Moreover, they often have less access to treatment, both because of issues with healthcare entitlement (especially undocumented migrants) and due to limited health-​ system responsiveness and access barriers (WHO, 2010; IOM, 2016). These risk factors can influence the initiation of substance use, as well as hinder the achieving of stable recovery (Matsuzaka and Knapp, 2019). Stable recovery is understood here as ‘a dynamic process characterized by increasingly stable remission resulting in and supported by increased recovery capital and enhanced quality of life’ (Kelly and Hoeppner, 2015). Although more population-​based prevalence research among European MEM is needed (De Kock, 2019), knowledge about population prevalence alone is insufficient to meet MEM needs in treatment. As stated by Ritter 127

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and colleagues (2019, p 22) the study of prevalence ‘is limited in its usefulness unless it is matched with consideration of different treatment types and their relative intensity, and/​or explored as a function of geography and subpopulation’. Currently, little is known about stable recovery of MEM and  the way treatment services, as well as policy guidelines, can better respond to their diverse needs. Although varying influences may affect individuals with similar ethnic and migration backgrounds differently, societal responses to ethnic diversity are often predominantly centred around culture-​based adaptations, such as trying to understand generic ‘Muslim values’ (Rondelez et al, 2018). This points to a need for researchers and practitioners to develop a deeper understanding of inter-​and intra-​personal variation. Indeed, religious experiences and identities may pose specific challenges to, for instance, Muslim problem users that need consideration in a social recovery perspective (De Kock, 2021) rather than a conception of Islam as an invariable cultural background in the treatment context. The over-​reliance on individual client culture has led to the development of a discourse of ‘cultural competence’ in European treatment cultures. This development urges us to question what culture and which competencies are targeted as well as whether these interpretations align with definitions of recovery resources identified by MEM. Subsequently, this chapter compares results from a literature review on cultural competence, on the one hand, with a literature review on recovery resources defined by MEM themselves on the other. The discussion focusses on the importance of considering social and structural determinants and resources in supporting stable recovery among MEM both in theory (epidemiology, cultural competence and recovery capital) and practice. We highlight that comprehensive substance ​use treatment for MEM is sensitive to the structural disparities many MEM are exposed to, in addition to social, minority-​, ethnicity-​and culture-​related issues. Moreover, critical consideration of supports outside the individual, dominant treatment cultures and provider structural competence is key in reaching stable recovery.

Cultural competence: what’s the problem represented to be? The cultural competence review (De Kock, 2020a) was based on the ‘what’s the problem represented to be’ approach (Bacchi, 2018) and on an ecosocial perspective on treatment disparities (Alegría et al, 2011; De Kock et al, 2017). This framework allowed us to identify the origin, nature and presuppositions of ‘cultural competence’ at the micro (service users, providers and service user–​provider interaction), meso (substance use 128

Recovery among migrants and ethnic minorities Figure 10.1: Ecosocial perspective

MACRO MESO MICRO (MEM) Client

Practitioner

Community

SUT service

Health system & broader policies

Socio-political context Source: Adapted from De Kock et al, 2017

treatment service and MEM community) and macro levels (health systems and dominant treatment perspectives) (see Figure 10.1). Forty-​one mainly USA-​based studies published between 2007 and 2017 were included in the review after screening a variety of databases including Campbell, Cochrane, Web of Science and PubMed. For the full method we refer to the review article (De Kock, 2020a).

The nature and origin of the concept Cultural competence has become a buzz concept in many European mental health and substance use treatment (SUT) settings. Cross and colleagues (1989) defined it as ‘a set of congruent behaviours, knowledge, attitudes, and policies that come together in a system, organization, or among professionals that enable effective work in cross-​cultural situations’. However, there is little evidence to guide the implementation of cultural competence in SUT (Gainsbury, 2017). Additionally, the proper nature of the concept remains understudied (Jongen et al, 2018). Most authors in our review built on Cross and colleagues’ (1989) definition of cultural competence. This definition includes a macro-​, meso-​and micro-​ level focus respectively on the health and service system, organisational service level and individuals (professionals and clients). Nevertheless, some authors argue that the macro-​system level is often overshadowed or insufficiently accounted for by an exaggerated focus on the individual and organisational levels (Sue et al, 2009; Kirmayer, 2012). The fact that the operationalisation of cultural competence differs considerably across countries adds to conceptual blurriness. Moreover, overlapping concepts exist, such as ‘cultural safety’ (mainly in New Zealand), ‘transcultural 129

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competence’ (in Europe) and ‘cultural consultation procedures’ (in the UK), although it is not always clear how these derivatives differ from the cultural competence concept.

Underlying reasons for applying cultural competence and derivatives The reasons for applying a cultural competence discourse or culture-​based methods were mainly situated at macro and micro levels. On the macro level, authors referred to (mental) health and other disparities between MEM and non-​MEM populations as well as societal diversity and changing dominant treatment perspectives. At the micro level, reasons to develop cultural competence focussed on reflecting the characteristics of (potential) clients such as by speaking their language or understanding their trauma and also shame and stigma concerning substance use. Authors referred to a much lesser extent to shortcomings at the provider level or meso-​organisational level. This implies that organisational cultures and provider competencies were less prioritised in developing cultural competence or applying culture-​ based methods.

Questioning cultural competence The results of the literature review identified three main ways in which studies questioned the cultural competence discourse and the related culture-​ based methods: Are culture and cultural competence sufficient as means to reduce inequalities? Authors highlighted the potential stereotyping effect of cultural competence and its derivatives. Some also signalled that beside service users’ culture, other issues are paramount in meeting the service needs of MEM. These issues include intersecting service-​user characteristics (for example, the combined effects of gender, migration background and low socio-​economic status and social inclusion), service provider bias, client–​provider ethnic matching and the ability of services to focus on MEM in contexts of austerity. The universalist stance: aren’t we all the same? A minority of authors argue a universalist stance which suggests that competent counsellors and therapists should be able to work with a range of diverse service users (Sue et al, 2009). However, as outlined by Fountain (EMCDDA, 2013), the pertinent issue is to what extent generic 130

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services can demonstrate that they are able to provide services that operate effectively for all clients, whatever their migration or ethnic background. When equitable access, experience and outcome (Starfield, 2001) cannot be guaranteed, additional targeted interventions are warranted in the framework of proportionate universalism. What about evidence-​based practice? The majority of authors of the reviewed papers suggested that the absence of outcome studies (that is, those including mediator and moderator analyses) results in insufficient evidence about the effectiveness of cultural competence and its derivatives. Some authors additionally argue that an outcome commitment should be included in the definition of cultural competence (for instance, a commitment to reducing inequalities in access, quality and/​ or outcome of treatment).

Issues left unquestioned in theorising cultural competence We identified a number of issues which have been left unquestioned in the reviewed literature. First, only a minority of the authors included a definition of culture. Even those who defined culture predominantly staged it as a seemingly agency-​free concept ‘acquired by a human as a member of society’ (Fedorova, 2012, p 78) or ‘developed by a group of people’ (Gainsbury, 2017, p 24). These definitions insufficiently address how culture operates distinctively at individual, organisational and institutional levels. Providers, for instance, are likely influenced by specific SUT service cultures that will in turn influence service access, experience and outcome. The client, in this discourse, appears to be a passive and voiceless product of the culture he or she is believed to identify with. We argued in the review and elsewhere (De Kock, 2020b) that viewing client and provider culture as flexible and unfinished allows exploration of how cultural or ethnic boundary-​making hinders or supports recovery. Second, the under-​representation of certain MEM populations in SUT will likely be influenced by formal healthcare access requirements and structural barriers besides individual characteristics. These structural service disparities are mentioned only marginally in the included studies. Nevertheless, these access restrictions very likely contribute to disparities among specific MEM populations and should thus be considered in tackling them. Our empirical research, for instance, demonstrated that language is often an exclusion criterion in residential SUT settings in Belgium (De Kock et al, 2020). Third, the presupposition of distinctive substance ​use prevalence rates across MEM populations is left unquestioned. Population prevalence studies 131

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often insufficiently granulate ethnicity or account for additional distribution variables (education, labour or other social circumstances, for example) (De Kock et al, 2017). This can lead to reversing causality: attributing the reasons for observed differential substance use to the presumed cultural characteristics of a MEM population while other intersecting issues are likely the root causes. Lastly, only a minority of the studies included the voices of service users themselves, which is an important deficit in the existing knowledge base (Vanderplasschen et al, 2019). In what follows, we will subsequently focus on how individuals who identify with various MEM populations experience the recovery process and what they consider to be important in order to achieve stable recovery.

Recovery capital: voices of migrants and ethnic minorities The second review (Pouille et al, 2020) aimed to identify recovery resources on the personal, social and community level, as well as negative recovery capital that hinders sustained or long-​term recovery among MEM (White and Cloud, 2008). An electronic search of Medline, Embase, CINAHL, Cochrane Library, PsycARTICLES, ERIC, Web of Science and Scopus, using a variety of terms concerning the core concepts ‘recovery’, ‘problem substance use’ and ‘migrants and ethnic minorities’, yielded 15 studies (published online before August 2020) that matched the eligibility criteria. For the full review methods, we refer to the published review (Pouille et al, 2020). Personal capital: coping, belonging, identity and beliefs We identified three key elements of personal capital. First, addressing root causes of problem substance use was considered essential for recovery since substance use was often a way of ‘numbing the pain’ of harmful past experiences and trauma (Ehrmin, 2002). Besides personal experiences of physical or sexual abuse and the death of loved ones, ongoing minority-​ related oppression affected individuals, families and communities (feelings of rejection, identity disruption, acculturation stress and poverty, for example) through intergenerational transference of trauma and substance use. Second, mechanisms of minority-​related oppression such as racism harmed self-​worth and induced identity disruption by inflicting feelings of rejection and inferiority. Therefore, (re)gaining a personally relevant cultural identity and belonging to a community were considered paramount. These new identities may allow MEM people in recovery to expand their role repertoires within the community by means of, for instance, being role models for future generations. For some MEM, the relationship with a religion or 132

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higher power (for instance, praying and going to church) enabled them to get through difficult moments and stay clean: ‘I just felt a lot of love there [Native American Church], a real positive atmosphere. I seen a lot of real caring people there and I thought, this is something that I’ve been searching for all my life. That need to belong – l​ike hey, I’m an Indian and I have every right to be an Indian, I have every right to be here and this is our home, and I really liked that feeling.’ (Prussing, 2007, p 517) Third, finding new –​culturally and personally relevant –​coping mechanisms was pivotal for dealing both with cravings and painful past experiences. Instead of substance use as a coping mechanism, respondents turned to social activities, hobbies, chores, school, prayer and active participation in other types of activities that are incompatible with alcohol and drug use. Social capital: support of family, role models and others The love and support of family and significant others functioned as a motivator for initiating and a resource for sustaining recovery. Being or becoming a mother and the corresponding responsibilities can be a great motivator for recovery. Family or community members that have been through a recovery process can provide a hopeful example of stable recovery. These role models can inspire, guide or mentor MEM in recovery by sharing recovery-​and minority-​related experiences. Furthermore, this facilitated MEM to share their own experiences with others, expanding their role repertoire in the community and in turn contributing to their personal cultural identity and belonging: “It’s mainly my sister … . If I’m stressed about something, or I’m, you know, just ready to give up, or whatever … . ‘Cause she’s been down the same road I’ve been down, you know. She’s sober for like 10 years, so she’s just there too” (McCarron et al, 2018, p 326). Community capital: treatment, cultural and spiritual values, activities and traditions Formal treatment interventions and 12-​step programmes can serve as bridges towards recovery-​supportive communities and facilitate recovery. A trusting relation with counsellors and support that is both practical and emotional were considered prerequisites in professional support systems. While some MEM valued the availability of specialised treatment geared for people with the same background (for instance by employing professionals with similar backgrounds), others stressed the importance of generalist treatment that embraces cultural sensitivity or integrates cultural aspects in treatment. Some 133

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found comfort in cultural and spiritual values, activities and traditions. Since problem substance use was often perceived as incompatible with these values, the latter could be a motivator to quit using, to stay clean, and could help people to cope with emotionally difficult experiences. ‘You know because the counselors here are Latina you feel like wow, they understand, they come from the same background I have. They eat tamales for Christmas and beans and rice when they didn’t have anything else. It [makes me] feel comfortable.’ (Hohman, 1999, p 74) ‘I think you can talk better with an Indian person … those White counselors –​they tried to make me cry –​because all those other people they would cry. But when it comes to a[n]‌Indian person they wouldn’t cry. … But if I go in the [sweat] lodge, you know there are Indian people around there if I did something wrong you know, somebody died or something –​that’s how I’d let my feelings out –​in the lodge. You go in and get all the evil out of you. Get in there and leave it there. I’d go to a sweat before I’d go to an AA meeting.’ (Matamonasa-​ Bennett, 2017, p 1150) Barriers to recovery: negative recovery capital Doty-​Sweetnam and Morrissette (2018) discussed the vicious circle of the interdependent problems of substance use, guilt and shame. Subsequently, not addressing these feelings appropriately could induce relapse. On the social level, substance-​using social networks as well as disruptive family circumstances could negatively influence recovery processes. Relating to substance-​using (sub)cultures or communities could increase the (social) pressure to use. ‘People started calling me down. “Angel, perfect woman, she doesn’t want to drink with us.” I would say, “No one offers me beer or money when I have a hangover, but I hustle for all of you. You have no one to hustle for you now.” I lost all my friends. I would still talk to good friends, encourage them to quit –​no more hangovers. But they call me down, talk about me behind my back. So I am alone. I say “Hi, how are you”, but it’s not like before.’ (Prussing, 2007, p 512) On the community level, a ‘culture of silence’ (Laus, 2013) –​inhibiting participants to talk about their problem and to seek help –​could increase the barriers towards recovery resources: “You know how Filipino are, their kind are proud. They’re always in denial. They know you’re using but they get in denial like you’re not using. It’s their pride, especially if their family is known” (Laus, 2013, p 1099). 134

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In formal treatment interventions, a lack of cultural sensitivity and feelings of mistrust towards counsellors due to past minority-​related experiences were mentioned as recovery inhibitors. ‘But this professional person, they are not going to look into a medicine man, because his profession is a straight line, the White man’s way. He is not going to send that person to the sweat lodge or anything. … I don’t trust doctors, nurses, and mental health workers. They all judge. I work in the system and I know how most professionals feel about clients. They know what is right for Native people from their White perspective.’ (Doty-​Sweetnam and Morrissette, 2018, p 11)

Discussing the importance of structural and social resources The results of both literature reviews support the idea that external, macro-​ level, structural and social contributors to the onset and sustaining of substance use should be considered more scrupulously in both recovery research and practice. Both the cultural competence and the recovery-​capital frameworks insufficiently address how these issues play a major role in sustaining long-​ term recovery. Additionally, both frameworks focus predominantly on the individual client, whereas the professional, the service, and external resources all have a role to play in building steady recovery capital, especially in MEM populations. In what follows, we examine how our confronting of the cultural competence discourse with lived recovery experiences among MEM can inform recovery theory and treatment practice. Theory: the social over the cultural in research Both in traditional epidemiological studies (mainly in USA-​based literature) and in the cultural competence discourse there is an over-​emphasis on the individual micro culture as a risk factor for substance use and treatment success. By employing a static notion of individual culture, the influence of intersecting issues such as experiences of deprivation become invisible and are decoupled from ethnicity or culture, turning the latter in static characteristics. Accounting for how intersecting socio-​political, psychosocial, ecological and historical phenomena become embodied and affect disparities in treatment and support at the population level (Alegría et al, 2011) can inform future policymaking on recovery and broaden health professional’s action radius. Many of the recovery resources identified by MEM were not only personal but social at their core. Overlapping social and community resources were a prerequisite to preserving or reinventing (personal) cultural identities and to a feeling of (cultural) belonging. Inventing new social and aspirational 135

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identities is key in the recovery process (Dingle et al, 2015) and the availability of external resources that support these processes are also important. In other words, personal identity processes are deeply embedded in meso and macro environments (Savic and Bathish, 2019; De Kock, 2020b). Although recovery capital is described in ecological terms by many, such descriptions often fail to account sufficiently for external macro-​influences on the recovery process. Moreover, there is a clear overlap between personal resources on the one hand and community and social resources on the other. How can one create a positive, community-​related identity if this identity is countered with discrimination or exclusion in society? The recognition of the intertwinement of personal, community and social resources is key to supporting stable recovery, especially among MEM, since identity disruption infused by social disparities is likely to be particularly prevalent among these populations (De Kock, 2019). This brings us to the question of who provides which types of recovery capital. The literature predominantly addresses capital from an individual perspective, while the prerequisite of external resources has only been studied to a limited extent. Researchers and practitioners should consider to what extent dominant treatment cultures, service organisational cultures and societal opportunities or barriers among MEM align with, facilitate or hinder recovery among MEM. In line with this argument, our cultural competence review demonstrated that most authors argued in favour of cultural competence as a critique to traditional treatment –​mainly biomedical –​views on problem use. Instead of focussing research on identifying individual recovery capital, there is an urgent need to study the degree to which SUT services and policymaking facilitate or hinder the development of recovery capital among MEM. Practice: the social in supporting stable and long-​term recovery The recovery review showed that what is perceived by an individual as their culture can well be a recovery resource, whereas in literature it is commonly described in terms of risk (De Kock, 2020b). Moreover, a predominant risk-​factor focus on problem substance use does not align with the need to identify strengths in order to achieve stable recovery (Best and Lubman, 2012). Subsequently, to identify pathways to stable recovery, a life-​course perspective should help disentangle the entwinement of cultural and other mechanisms such as social processes that underlie them (Alegría et al, 2011). Cultural communities as well as identities can also hinder recovery by, for example, inflicting (perceived) stigma and taboo. Stigma and taboo can be a result of ethnic boundary-​making processes rather than identifiers of a specific static culture (De Kock, 2020b). Ethnic boundary making is often 136

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used to create ethnic group boundaries that enable groups to create distinctive group identities, especially in hostile societal environments. These boundaries define a group rather than ‘the cultural stuff that encloses it’ (Barth, 1969; De Kock et al, 2017). Our previous research, for instance, demonstrates that among Turkish substance users, ethnic identity processes caused mental pressures because of their not feeling welcome in a mosque, a feeling of guilt towards their religion and also the anticipation of stigma in their own families, causing social isolation (De Kock, 2020b). We posited that these users experienced triple stigma: i) in society because of being a substance user, ii) having a migration background and iii) in the family because of substance use. ‘They will all look at me, like, “Oh there’s that junkie”, that’s how they’ll look at me. I’ll get angry with myself, while I’d want to do something good, it wouldn’t turn out well. I won’t feel good. Better to stay at home, pray at home and ask God for forgiveness.’ (Heroin user in De Kock, 2020a, p 118) Translated into the context of stable and long-​term recovery among MEM, it is rather the function and consequences of ethnic boundary-​making than what is perceived of as the content (that is, a particular culture or ethnicity) that should be up for discussion or confrontation during the recovery process (De Kock, 2020b). Importantly, substance users should not be viewed as having a stable set of predetermined or underlying attributes (Savic and Bhattish, 2019). It is rather these volatile functions culture and ethnicity can have and not the cultural or ethnic ‘characteristics’ that are of importance in achieving stable and long-​term recovery. A recommendation for providers is consequently to focus on building recovery capital that is sensitive to these entwined cultural, ethnicity-​and minority-​related issues and strengths and acquiring ‘structural competence’ in treatment: anticipating the influence of structural and social rather than only cultural factors on problem use (Kirmayer et al, 2018). Moreover, supporting aspirational identity processes with the final aim of addressing root causes, supporting a change in coping mechanisms and subsequently achieving long-​ term recovery is key. Professionals can achieve this by collaborating with participants’ social and community networks, by questioning the issues of ethnic boundary-​making and by identifying external macro-​influences (for instance, employment and education) in the therapeutic context as well as durable recovery enablers (De Kock, 2020b) to achieve long-​term recovery. Rather than focussing on the perceived characteristics of an ethnic community, professionals and services should equally focus on SUT service cultures, the (social) process of ethnic boundary-​making that affects a substance user, the hindering control mechanisms it involves, as well as the 137

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supportive effect that bonding with multiple communities can have in the recovery process (Jetten et al, 2015).

Conclusion While most of the reviewed literature originated in the USA, Canada and New Zealand, European individuals with a MEM background also experience additional difficulties in (re)creating renewed and aspirational identities compared to non-​MEM populations. They are often confronted with perceived and structural discrimination and minority related stress or trauma (WHO, 2010; De Kock, 2021). Overemphasising individual agency and strengths (over macro structural and biopsychosocial factors) in recovery may lead to further marginalisation of people who are already marginalised or excluded (Savic and Bathish, 2019) if they are less successful in achieving stable recovery. Subsequently, we advocate for the implementation of an anti-​racist (Matsuzaka and Knapp, 2019) and ecosocial (De Kock et al, 2017; De Kock, 2020b) focus in SUT rather than a culture-​focussed approach. Although cultural(ised) elements can have their role in recovery (that is, through the formation of identity and belonging), providers should be wary not to impose these presupposed identities on clients but rather discover agentically the voice of the client and hear him or her out on these identity constructions and how ethnic boundary-​making influences stable recovery. While problem substance use is known to have severe negative consequences on the lives of users and their environment (Tsai et al, 2019), these consequences can accumulate among some MEM (De Kock and Decorte, 2017). Reflecting on these consequences, the consideration of root causes of substance use (including intergenerational and minority-​ related trauma, poverty and perceived and structural discrimination) is key in supporting stable recovery processes. References Alegría, M., Pescosolido, B., Williams, S. and Canino, G. (2011) ‘Culture, race/​ethnicity and disparities: Fleshing out the socio-​cultural framework for health services disparities’, in B. Pescosolido, J. Martin, J. Mcleod and A. Rogers (eds) Handbook of the Sociology of Health, Illness and Healing, New York: Springer, pp 363–​82 Bacchi, C. (2018) ‘Drug problematizations and politics: Deploying a poststructural analytic strategy’, Contemporary Drug Problems, 45(1): 3–​14. Barth, F. (1969) Ethnic Groups and Boundaries: The Social Organization of Culture Difference, reprint, Long Grove: Waveland Press, 1998.

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Bazron, K.W. Dennis, and M.R. Isaacs (1989) Towards a Culturally Competent System of Care: A Monograph on Effective Services for Minority Children Who Are Severely Emotionally Disturbed, Washington DC: Georgetown University Child Development Centre. Best, D.W. and Lubman, D.I. (2012) ‘The recovery paradigm: A model of hope and change for alcohol and drug addiction’, Australian family physician, 41(8): 593–​7. Cross, T.L., Bazron, B.J., Dennis, K.W. and Isaacs, M.R. (1989) Towards a Culturally Competent System of Care: A Monograph on Effective Services for Minority Children Who Are Severely Emotionally Disturbed, Washington, DC: CASSP Technical Assistance Center Georgetown University Child Development Center, available online from: ED330171.pdf De Kock, C. (2019) ‘Migration and ethnicity related indicators in European drug treatment demand (TDI) registries’, Journal of Ethnicity in Substance Abuse: 1–​27. De Kock, C. (2020a) ‘Cultural competence and derivatives in substance use treatment for migrants and ethnic minorities: What’s the problem represented to be?’, Social Theory and Health, 18(1): 358–​94. De Kock, C. (2020b) ‘Risk factors and dangerous classes in a European context: The consequences of ethnic framing of and among Turkish drug users in Ghent, Belgium’, in B. Thom and S. Macgregor (eds) Risk and Substance Use: Framing Dangerous People and Dangerous Places, New York: Routledge. De Kock, C. (2021) ‘Equitable substance use treatment (SUT) for migrants and ethnic minorities (MEM): An emerging research domain’, Background paper commissioned by EMCDDA for the social response guide. De Kock, C. and Decorte, T. (2017) ‘Exploring problem use, discrimination, ethnic identity and social networks’, Drugs and Alcohol Today, 17(4): 269–​79. De Kock, C., Decorte, T., Vanderplasschen, W., Derluyn, I. and Sacco, M. (2017) ‘Studying ethnicity, problem substance use and treatment: From epidemiology to social change’, Drugs: Education, Prevention and Policy, 24(3): 230–​9. De Kock, C., Mascia, C., Toyinbo, L., Laudens, F., Leclerq, S., Jacobs, D. and Decorte, T. (2020) Mapping and Enhancing Substance Use Treatment for Migrants and Ethnic Minorities. MATREMI (DR/​00/​84), Brussels: Belspo. Dingle, G.A., Cruwys, T. and Frings, D. (2015) ‘Social identities as pathways into and out of addiction’, Frontiers in Psychology, 6: 1–​12. Doty-​Sweetnam, K. and Morrissette, P. (2018) ‘Alcohol abuse recovery through the lens of Manitoban First Nations and Aboriginal women: A qualitative study’, Journal of Ethnicity in Substance Abuse, 17(3): 237–​54. Ehrmin, J.T. (2002) ‘ “That feeling of not feeling”: Numbing the pain for substance-​dependent African American women’, Qualitative Health Research, 12(6): 780–​91. 139

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EMCDDA (2013) Drug Prevention Interventions Targeting Minority Ethnic Populations: Issues Raised by 33 Case Studies, Luxembourg, European Monitoring Centre for Drugs and Drug Addiction, available online from: https://​www.emcdda.europa.eu/​publications/​thematic-​papers/​ prevention-​minority-​ethnic-​populations_​en Fedorova, O. (2012) ‘Transcultural drug work: A handbook for practitioners working with drug users from different ethnic and cultural backgrounds’, Co-​operation Group to Combat Drug Abuse and Illicit Trafficking in Drugs (Pompidou Group), available online from: 16807b6acd (coe.int) Gainsbury, S.M. (2017) ‘Cultural competence in the treatment of addictions: Theory, practice and evidence’, Clinical Psychology and Psychotherapy, 24(4): 987–​1001. Giacco, D., Laxhman, N. and Priebe, S. (2018) ‘Prevalence of and risk factors for mental disorders in refugees’, Seminars in Cell and Developmental Biology, 77: 144–​52. Harris, S., Dykxhoorn, J., Hollander, A.-​C., Dalman, C. and Kirkbride, J.B. (2019) ‘Substance use disorders in refugee and migrant groups in Sweden: A nationwide cohort study of 1.2 million people’, PLoS medicine, 16(e1002944): 1–​19. Hohman, M.M. (1999) ‘Treatment experiences of women in a recovery home for Latinas’, Alcoholism Treatment Quarterly, 17: 67–​78. International Organization for Migration (IoM) (2016) Summary Report on the MIPEX Health Strand and Country Reports, Brussels: IOM and European Commission’s Directorate General for Health and Food Safety (SANTE), available online from: https://​publications.iom.int/​books/​ mrs-​no-​52-​summary-​report-​mipex-​health-​strand-​and-​country-​reports Jetten, J., Branscombe, N.R., Haslam, S.A., Haslam, C., Cruwys, T., Jones, J.M., Cui, L., Dingle, G., Liu, J. and Murphy, S. (2015) ‘Having a lot of a good thing: Multiple important group memberships as a source of self-​ esteem’, PloS one, 10(e0124609): 1–​29. Jongen, C., Mccalman, J. and Bainbridge, R. (2018) ‘Health workforce cultural competency interventions: A systematic scoping review’, BMC Health Services Research, 18(1): 1–​15. Kelly, J.F. and Hoeppner, B. (2015) ‘A biaxial formulation of the recovery construct’, Addiction Research and Theory, 23(1): 5–​9. Kirmayer, L.J. (2012) ‘Rethinking cultural competence’, Transcultural Psychiatry, 49: 149–​56. Kirmayer, L. J., Kronick, R. and Rousseau, C. (2018) ‘Advocacy as key to structural competency in psychiatry’, JAMA psychiatry, 75(2): 119–​20. Laus, V. (2013) ‘An exploratory study of social connections and drug usage among Filipino Americans’, Journal of Immigrant and Minority Health, 15(6): 1096–​106.

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Lemmens, P., Dupont, H. and Roosen, I. (2017) ‘Migrants, asylum seekers and refugees: An overview of the literature relating to drug use and access to services’, EMCDDA, available online from: https://​www.emcdda.europa. eu/​document-​library/​migrants-​asylum-​seekers-​and-​refugees-​overview-​ literature-​relating-​drug-​use-​and-​access-​services_​en Matamonasa-​Bennett, A. (2017) ‘ “The poison that ruined the nation”: Native American men, alcohol, identity, and traditional healing’, American Journal of Men’s Health, 11(4): 1142–​54. Matsuzaka, S. and Knapp, M. (2019) ‘Anti-​racism and substance use treatment: Addiction does not discriminate, but do we?’, Journal of Ethnicity in Substance Abuse, 19: 567–​93. Mccarron, H., Griese, E.R., Dippel, E. and Mcmahon, T.R. (2018) ‘Cultural and social predictors of substance abuse recovery among American Indian and non-​American Indian pregnant and parenting women’, Journal of Psychoactive Drugs, 50(4): 322–​30. Missinne, S. and Bracke, P. (2012) ‘Depressive symptoms among immigrants and ethnic minorities: A population based study in 23 European countries’, Social Psychiatry and Psychiatric Epidemiology, 47(1): 97–​109. Pouille, A., De Kock, C., Vander Laenen, F. and Vanderplasschen, W. (2020) ‘Recovery capital among migrants and ethnic minorities: A qualitative systematic review of first-​person perspectives’, Journal of Ethnicity in Substance Abuse. Priebe, S., Giacco, D. and El-​Nagib, R. (2016) Public Health Aspects of Mental Health among Migrants and Refugees: A Review of the Evidence on Mental Health Care for Refugees, Asylum Seekers and Irregular Migrants in the WHO European Region, Copenhagen: WHO. Prussing, E. (2007) ‘Reconfiguring the empty center: Drinking, sobriety, and identity in native American women’s narratives’, Culture, Medicine and Psychiatry, 31(4): 499–​526. Ritter, A., Mellor, R., Chalmers, J., Sunderland, M., and Lancaster, K. (2019) ‘Key considerations in planning for substance use treatment: Estimating treatment need and demand’, Journal of Studies on Alcohol and Drugs, Supplement s18: 22–​30. Rondelez, E., Bracke, S., Roets, G., Vandekinderen, C. and Bracke, P. (2018) ‘Revisiting Goffman: Frames of mental health in the interactions of mental healthcare professionals with diasporic Muslims’, Social Theory and Health, 16(4): 396–​413. Salama, E., Niemelä, S., Suvisaari, J., Laatikainen, T., Koponen, P. and Castaneda, A. E. (2018) ‘The prevalence of substance use among Russian, Somali and Kurdish migrants in Finland: A population-​based study’, BMC public health, 18(1): 1–​13.

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Savic, M. and Bathish, R. (2019) ‘Rethinking agency, strengths and change in desistance and recovery: An actor network approach’, in D. Best and C. Colman (2019) Strengths-​Based Approaches to Crime and Substance Use: From Drugs and Crime to Desistance and Recovery, Abingdon: Routledge, pp 105–​25. Starfield, B. (2001) ‘Improving equity in health: A research agenda’, International Journal of Health Services, 31(3): 545–​66. Sue, S., Zane, N., Nagayama Hall, G.C. and Berger, L.K. (2009) ‘The case for cultural competency in psychotherapeutic interventions’, Annual Review of Psychology, 60: 525–​48. Tsai, A.C., Alegría, M. and Strathdee, S.A. (2019) ‘Addressing the context and consequences of substance use, misuse, and dependence: A global imperative’, PLoS Medicine, 16(e1003000): 1–​18. Vanderplasschen, W., Rapp, R.C., De Maeyer, J. and Van Den Noortgate, W. (2019) ‘A meta-​analysis of the efficacy of case management for substance use disorders: A recovery perspective’, Frontiers in Psychiatry, 10: 1–​19. White, W., and Cloud, W. (2008) ‘Recovery capital: A primer for addictions professionals’, Counselor, 9(5): 22–​7. World Health Organisation (2010) ‘How health systems can address health inequities linked to migration and ethnicity’, Copenhagen: WHO, available online from: https://​www.euro.who.int/​_​_​data/​assets/​pdf_​file/​0005/​ 127526/​e94497.pdf

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Transitions in long-​term recovery: mapping adolescent development theory to better understand identity change in recovery Lucy Webb, Amanda Clayson and Nigel Cox

Introduction The importance of social identity in the process of recovery from substance use is increasingly supported by evidence, particularly from the UK and Australia. Social identity as an important element in recovery appears crucial in developing a recovery identity rather than an addict identity, particularly when strengthened by validating factors of social belonging and recovery-​group membership (Orford, 2001; Best et al, 2014, 2018; Beckwith et al, 2019). The definition of recovery in substance use is debated, as many interpretations align it with sobriety and abstinence (Groshkova et al, 2013), but to view recovery as a trajectory, as we accept it in this chapter, suggests multiple stages and transitions towards a self-​defined state of recovery. Important factors in support of recovery are elements brought together under the umbrella of ‘recovery capital’, those internal and external resources that aid a person in their recovery from substance use (Mawson et al, 2015). These may include personal resilience and motivation, problem-​solving skills, education and a sense of purpose, and extra-​personal assets such as supportive social and family relationships, socio-​economic opportunities and supportive connections (Cloud and Granfield, 2008). It is clear that external recovery capital stems from theories of social capital, in which links with external social bonds give a sense of community (Putnam, 1995; 2001) and facilitate access to resources through social connections (Bourdieu, 1977). However, the internal sense of recovery capital has more resonance with identity capital and intra-​personal resources. In this, we see parallels with the development of resilience and sense of self that stems from developmental theories. In this chapter, we describe two studies which together illustrate the parallels and common theoretical origins of the development of recovery capital and developmental theory, and demonstrate how developmental 143

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theory helps explain and map transitions to long-​term recovery through personal maturation and individualisation.

The care-​leaver study One of the studies included here explored the maturational impact of offering volunteering opportunities to young people transitioning out of care, using an agency-​identity model to track identity development (Webb et al, 2017). Eighteen young people between 14 and 21 years of age, in care and leaving care and with a range of genders, ethnicities and disabilities, were interviewed during their experiences of volunteering projects. We used narrative analysis to identify a priori themes from the development model, mapping stages of transition from a social, or ‘given’ identity (from family, culture, social group) to an agentic identity representing individuality, autonomy and sense of self.

Adults in long-​term recovery study The long-​term recovery study was part of a longitudinal co-​productive project to explore the experience of recovery with a cohort of six people in recovery over a three-​year period, from 12 months post-​treatment for substance use (early-​stage recovery), to four years post-​treatment (late-​ stage recovery) (Webb et al, 2020). We analysed cross-​sectional data from video/​audio diaries and interviews, representing early, mid and late stages of recovery. Framework analysis of narratives allowed us to impose a priori themes from the agency-​identity model, and to map these by stage of recovery. Participants had completed an elective activity course immediately following discharge from substance-​use treatment. This offered a range of normalising activities including sports, arts and skills training such as entrepreneurship or cooking. Participants were all also active in recovery groups at least at the early stages, and were co-​productive within the overall research project, all providing social and personal opportunities for new experiences. Themes mapped across the developmental stages emerged as ‘staying safe’, ‘exploring’ and ‘self-​determination’.

Identity development theory Adolescent psychosocial development theory stems from work by Erik Erikson (1950) and James Marcia (1966). Erikson’s eight-​stage model of development locates adolescence as a crucial time –​‘identity crisis’ –​necessary for successful achievement of healthy maturation. According to Erikson, unsuccessful transition at this stage results in a confused identity, continuing social dependence and, ultimately, dissatisfaction and embitterment as an adult. Marcia extended this adolescent stage to describe four status outcomes: 144

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1. identity achievement, characterised by a sense of self, values and boundaries (who I am, who I am not); 2. foreclosure, characterised by premature commitment to an externally acquired identity and vulnerability to conforming to others’ expectations and values (I am who others say I am); 3. moratorium, characterised by continuing exploration of self or avoidance of commitment (‘Peter Pan’ syndrome); 4. diffusion, characterised by a poor sense of self and the lacking of boundaries of self and others, typical of borderline personality disorder (Jørgensen, 2009) (identity driven by emotional state). Erikson’s theory is epigenic in that successful maturation requires building blocks developed from an interchange between internal and external resources; experiences of stable interpersonal relationships at home as well as opportunities to explore and have exposure to learning about the self. In Western societies this is seen as providing a nexus between self-​agency, interpersonal relationships and environments (Lerner, 2006; Luyckx et al, 2011), exploiting the resources from the social environment as opportunities to grow (Ungar, 2011). Our studies adopted Côté’s theory of adolescent individualisation (Côté, 2002, 2005), according to which there is a continuum of personhood between a passive acceptance of identity, given or conferred by family, social and environmental cultures, and liberal ‘choice’ of identity gained from active exploration, self-​testing, adoption and rejection of personal attributes, based on sought experiences rather than given values. Agentic individualisation, for Côté, is acquired by opportunity-​seeking, and requires identity capital, namely the availability of opportunities to explore and the inner resources to test the self. Our contention here is that this identity development is akin to identity change in recovery, where early-​stage recovery relies on a given identity as a person in recovery, ultimately leading to a mature individualised self, able to exercise autonomy and self-​agency. Schwartz et al (2005) identified the factors associated with agency as: exploration, self-​esteem, ego strength and internal locus of control and passive acceptance associated with avoidance, conformity and diffuse identity, clearly overlapping Marcia’s four-​status model. We combined Côté’s individualisation model of passive, transitional and agentic positions with Schwartz et al’s agentic factors, and incorporated Marcia’s four statuses of identity as a framework to map the narrative data for both study cohorts (Figure 11.1). We also mapped the recovery study themes of ‘staying safe’, ‘exploring’ and ‘self-​determination’ into the framework. For this chapter, we have compared the two cohorts to examine how transitioning into long-​term recovery can be seen as maturation from social identity towards individualisation in the same way that adolescents move from a given or passive identity to an agentic identity. 145

Long-​Term Recovery from Substance Use Figure 11.1: Framework adapted from Côté’s (2002) individualisation hypothesis and Schwartz et al’s (2005) agency-​identity model incorporating Marcia’s four statuses of identity formation PASSIVE (STAYING SAFE)

TRANSITIONAL (EXPLORING)

AGENTIC (SELF-DETERMINATION)

Conforming (to norms)

Exploration

Foreclosure (premature identity formation)

Exploitation

Ego strength (surety of identity, sense of purpose, integrity)

Avoidance coping Moratorium (delaying, lack of commitment)

Risk-taking Opportunityseeking

Self-esteem (pride, self respect) Choice (able to decide for oneself) Confidence Commitment

Findings As our study of long-​term recovery suggested, adults recovering from substance-​use dependence tend to move from passive, given stages of identity in early-​stage recovery to agentic individualisation in later stages of recovery. The recovery cohort tended to adhere to their newly acquired identities as being ‘in recovery’ in the first year to 18 months post-​treatment, and then showed signs of wanting more experiences following their social activity courses. All either volunteered as ‘recovery champions’ or joined fellowship groups, mostly either Alcoholic Anonymous (AA) or Narcotics Anonymous (NA), or Self-​Management and Recovery Training (SMART) groups, and were heavily involved in the recovery project. In the later stage of recovery, after four years post-​treatment, most of the recovery cohort members clearly ‘moved on’ from these roles and sought to distance themselves from earlier enthusiastic adherence to recovery activities. In similar ways, the care leavers demonstrated the stages of identity formation indicated by the model when exposed to volunteering opportunities, showing early reluctance and protectiveness in engaging in new activities, experiencing positive feelings and enthusiasms associated with engaging, and developing and recognising personal strengths acquired from the process. While there are many parallels between the two cohorts, individuals in both groups also demonstrated alternative identity formation that equally supports the dichotomies within the individualisation model. In the long-​term recovery study, initials have been used after quotations to preserve anonymity, and in the care-​leaver study we have used age and gender. 146

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Passive/​staying safe This stage of development is characterised by conforming to norms and others’ expectations and avoidance coping, such as adopting a ‘safe’ identity. For the adults in recovery, early-​stage comments demonstrated nervousness about engaging in new experiences and reluctance to commit to opportunities; ‘I was a little anxious if I’d understand [the course], worried if it was the right thing for me.’ (E.C., early stage) ‘I had the opportunity to [do] something I used to enjoy. Made me feel less anxious. I was a bit nervous just [doing] something I have done before.’ (G.S., early stage) It was clear from the care-​leaver study that staying safe and being reluctant to commit were also key features of engagement with volunteering activities: ‘I’d never done it before [rock climbing], I was a bit nervous. The staff encouraged me to do it.’ (Female, 19 years old) ‘I’m more confident to talk to people because I was before … I shouldn’t even come here [to volunteering].’ (Male, 18 years old) One 16-​year-​old female care leaver, in contrast, showed evidence of identity vulnerability in foreclosure and premature identity formation through an extreme reluctance to engage. Note her firm statements of identity: Field note: The interview took place with YP4 looking down most of the time and having the hood of her track suit up. YP4 commented that she hadn’t had anything to eat the whole day. I asked her if she didn’t even have breakfast and she said, ‘No, I’m a fussy eater.’ I offer her my apple and I’ve brought some chocolates, but she refused them, saying, ‘I don’t eat fruit.’ Asked about how she decided to do childcare [for a career], she says she has been ‘wanting to do that for ages’. She refers to having looked after her little sister and little cousin … and says, ‘I love children.’ She also found it difficult to make choices or commit to a view of the project: Field note: EG commented about YP4’s inability to make choices. When EG offered her a £10 shopping voucher, she didn’t know which shop she wanted it for. 147

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Field note: As soon as the interview starts, she claims that she doesn’t remember them [volunteering activities] and generally says that she cannot say which ones stood out for her, either in a positive or negative way. This premature foreclosure was also evident for one adult in the recovery study who appeared to remain reliant on the social identity, validation and support of the recovery community and her own recovery identity. AB frequently uses fellowship language and phrases, which are part of the 12-​ step approach, as mantras throughout her recovery. Note her self-​labelling and her external locus of control: ‘How lucky I was to be going on this course for free … “An addict with an attitude of gratitude is an addict who won’t fail.” ’ (E.C., early stage) ‘Recovery is everything to me, it’s my life, my new life. Recovery from my addiction means happiness, sunshine. A real life where I feel things. I’m always moving towards another day being sober.’ (E.C., mid stage) ‘It’s not easy being an ex-​addict [corrects herself], an addict. My story keeps me well. I’m in fellowship and what we know is your past is your greatest asset. … My voice, my experience, my pain can benefit others, it’s what feeds me. [About experiencing a non-​ recovery job] They’re not like us [people not in recovery].’ (E.C., late stage) At mid-​stage of recovery, between 18 months and 2 years after treatment completion, there was evidence of trepidation about ‘moving on’ among both groups of participants, suggesting a need to remain in the ‘staying safe’ stage, especially if they felt rushed into taking more responsibility: “We need people to help us along the way … [but] not be pushed” (T.K., mid stage). BA expressed a lot of fear about having to attend a disability-​ benefit assessment. She did not feel ready to move on to employment and was anxious about it: “Been up since 6 am [worrying]” (B.A., mid stage). Some of the young people also showed signs of retreating to a passive stage if they felt threatened: ‘With netball we just stopped going … it wasn’t the original team that she had started with … they formed their own team and sort of left [her] out … They weren’t making her feel part of it, so we just stopped going.’ (Foster carer to female, 14 years old)

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‘Now I have got used to being in a group and working all together. When I was in the group at school I got bullied so I turned round and said I don’t want to be in that group.’ (Female, 19 years old)

Transitional/​exploring It is apparent from both cohorts that once opportunities to explore were taken, there was a clear drive for them to take risks and test themselves: ‘I come to groups to volunteer. It’s liberating.’ (E.C., early stage) ‘I now deliver a self-​help group. That’s a big step for me.’ (L.G., mid stage) ‘I was getting stronger in myself, taking care of myself again. I learned there was nothing to be scared of.’ (G.S., early stage) ‘I never used to do the group things I do now, I just used to do the one-​to-​one, but when I started doing [volunteering] I was like, “What the hell”, and got stuck in doing the group stuff.’ (Male, 18 years old) ‘She would never have done this [abseiling]. She didn’t do it at first; she was the last person to do it, but once she’d done it, she wanted to do it again and again. So that gave her lots of confidence.’ (Foster carer to female, 14 years old) ‘I was dead eager to get in there, get it done, do what I’m supposed to be doing.’ (Male, 18 years old) Several of the recovery cohort also expressed frustration when they faced barriers to their continuing development. A.B. posted a video diary when she felt unwell and couldn’t attend her recovery group activity: ‘I need a cuddle. Feeling really low. I hate not doing something with my time. I’m feeling frustrated because I’m stuck in this flat! I hate it but I know I’ve got to take time out. I’m BORED, BORED! I needed to say it out.’ (A.B., mid stage) ‘There’s a whole new world out there in your community. Never enough events going on for me.’ (L.G., mid stage)

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Key to continued engagement with exploring for both cohorts was their feeling supported and not pressured. There may be a fine line between encouraging and pushing people into feeling unsafe: ‘Having somewhere to be at a specific time benefits me a lot.’ (R.M., early stage) ‘I learnt that I have got skills I didn’t think I had, through encouragement and motivation to do tasks.’ (Female, 19 years old) ‘I look back and I think, “Alright, I was negative then but look at me now”, I’m doing something more positive and it’s pushed me.’ (Female, 21 years old)

Agentic/​self-​determination By later-​stage recovery, nearly all the adult recovery participants were making statements that showed they were growing away from the social milieu and values at earlier stages. There was evidence of autonomous choices being made against the social grain. Some adult and care-​leaver participants expressed frustration at being held back from being who they wanted to be: “[I]‌asked myself, ‘What does “looking after [me]” look like?’ So I said to the lady [at the volunteering centre], ‘I’m not coming in today. I’m going to my friend’s, do a bit of gardening, which I enjoy’” (B.A., late stage). T.K. was feeling frustrated because he couldn’t find work and felt what he had to offer was not supported: “We’re not all useless. [But] we need people to … help us along the trip” (T.K., mid stage). This frustration was much in evidence for some of the older care leavers too: ‘Soon as I’m 21 I don’t have a social worker … [In response to being asked how that feels] Relieved because I’ve had that most of my life, it will be good to fend for myself, it’s what I want to do now but I can’t … because staff at my house say, “He’s doing that” … so I don’t really have a choice at the moment.’ (Male, 18 years old) Many adults in recovery expressed a sense of becoming themselves and exercising choice: ‘Recovery is when you are on your own, making your own decisions. I’m getting the balls to say no [to being asked to volunteer].’ (T.K., late stage) ‘Recovery, they [people generally] should call it something else –​it’s not recovery, it’s living again.’ (T.K., late stage) 150

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‘I just learned about my own well-​being and confidence. I’ve learned that I’ve got choices. The courses have helped me along –​made me grow as a person. I take notice of things more.’ (G.L., late stage) This was also evident among the young care leavers: ‘If you ask me a question I will just give the answer straight away, you know, so they make me to be more confident when I’m saying something and they give me that power to express myself every time in any situation.’ (Male, 18 years old, recent immigrant to UK) Statements of agency and self-​determination were clear from the recovery cohort in the later stage: ‘I can’t think of one negative thing. I don’t need to … I’ve met a nice girl. Good luck to everyone.’ (R.M., late stage) ‘Not being scared –​a lot of things change –​you’re scared of change, scared to test the water and other places, but not being scared because, how can you be scared of anything when you’ve faced your life in a bad way and then a good way. I’m not scared of anything, I’m not scared of embarrassing myself because I’m not embarrassed myself because that’s part of me.’ (T.K., late stage) ‘I’ve got to plan it [life ahead], I might go to SMART … I’m glad in a way [being off benefits]. I want a paying job, but I want to do something I like. I like helping people like me … I can point them in the right direction.’ (T.K., late stage) One participant (L.G.) later explained to the interviewer off camera that he had stopped volunteering because he had started to feel exploited. He had been enthusiastic and proud to be a recovery champion in the early and mid stages, but by the late stage he had moved from feeling grateful for the opportunity to volunteer to feeling he should be paid to work. Some also indicated their sense of autonomy and agency, having made a decision about themselves and who they were: ‘I made a brave decision to become what I wanted. I’ve done it. Able to keep a job, be reliable.’ (G.S., late stage) ‘I have become comfortably vulnerable … But I’ve matured. My sobriety … that’s the most important thing. I hope everything pans

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out for everyone but I can only look out for me and [family]. That’s my priority and it’s going to stay that way.’ (R.M., late stage) ‘I’ve become stronger of character … faith. I’m not afraid to look at my faults –​to be vulnerable.’ (C.E., late stage) This was also apparent among the care leavers when they reflected on their time volunteering: ‘I left school with rubbish GCSEs … I did something negative then, but look at me now, I’m doing something positive … it’s helped me to build up my confidence, helped me to speak to other people and share my opinions.’ (Female, 17 years old) ‘My idea is, I’m going to do this as volunteer work and then if I’m really into it … go back to [mentor] and say I want to make a job out of this how do I go about it.’ (Female, 21 years old) ‘I didn’t tell any of my friends … I’m not one of them people who brag about things and go, “Oh look I’m helping out the homeless.” ’ (Male, 18 years old)

Recovery reflection We asked the recovery group in the late stage to review their video diaries and reflect on how they had changed. Many of the comments refer to growth, maturation, strength and resilience: ‘When I entered recovery, I didn’t know who I was, I didn’t know what I liked. I didn’t know anything about myself. I just kept growing and growing, last 12 months, I continued to grow –​get stronger and stronger … I’ve had to grow up so fast –​that girl on there [on the video] –​so young … [you] see yourself back –​all the chinks in the armour. I didn’t even know you were different –​subtle changes.’ (C.E., late stage) ‘I was quite vulnerable, trying not to show it. I spent two years of my life being unhappy and I wasn’t prepared to sacrifice my happiness anymore.’ (G.S., late stage) ‘When I saw myself back [I thought], “Woah, there’s a vulnerable lad there.” [Speaking to his old self] You thought you were in a powerful position because you put the drink and drugs down, but you’re not.’ (M.R., late stage) 152

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When the interviewer asked what it was like watching your old self in the video, a key reply from one participant that highlighted their sense of vulnerability was: ‘It’s stirred up –​lot of feelings –​emotional. I feel I was quite fragile and I feel so blessed to still be going strong. That woman just looks like a Bambi, like a child! I just started my journey. I felt so optimistic I could achieve anything and I carry on achieving.’

Discussion The comparison between these two groups suggests that people transitioning to longer-​term recovery are likely to experience a similar maturation to adolescent identity development. They differ in that people in recovery first need to develop a social identity of being in recovery, and this may be the equivalent of adopting a given identity or conforming to new norms of being in recovery in order to stay safe. We noticed adult participants used ‘we’ in early stages to describe their identification with a recovery identity. We also noticed that those who developed substance dependence in their early years, mainly drug use, had clearer transitions than those who had alcohol dependence, who were more likely to have already developed an adult individualisation prior to their dependence. However, most adults in recovery had shown a shift in identity from social/​dependence to individual/​ agentic. This is not to claim that this should be a goal for all (as a social recovery identity was clearly still important to one participant), but it is a consideration for continued maintenance of behaviour change for some, while social identity is important for others. It needs to be acknowledged here that both cohorts, as well as our own interpretations, are subject to a Westernised context where bioethical principles and research practice privilege the individual. This has consequences for how we define research participants and their communities. For instance, we ask for individual, informed consent (not consent from the community), and we define the nature of the group in advance (often using the language of institutional or state agents such as medical professionals, social workers or law enforcement). Moreover, we become concerned when we come to believe that someone lacks the individual capacity to decide or refuse, even when the consent of a community may be the accepted norm. As such, while the ethics of Western research makes gestures towards social justice (for instance, the imperative towards herd immunity in vaccination programmes), its ontological disposition in research, policy and practice remains levelled at the individual, with intervention and restoration of normalcy its principal objectives. The predisposition towards the individual also risks overlooking the formation and function of the group or community in the creation and sustaining of transitional or recovery identities. The anthropological concept 153

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of ‘communitas’ is useful here. Communitas is described as the formation of a ‘generalised social bond’ (Turner, 1969, p 96) established between community members during a liminal or transitional phase or journey. Communitas arises when there is a ‘need to mobilise and organise resources, and the necessity for social control among the members of the group in pursuance of these goals’ (Turner, 1969, p 132). The concept of communitas and its practical application to recovery (as ‘recovery communitas’) is described elsewhere (Cox et al, 2016). Communitas is represented by a temporary assemblage of otherwise disparate individuals: groups that form, perhaps spontaneously and temporarily, in order to work productively together towards a common shared interest or goal outside the confines of ‘secular social structure’ (Turner, 1969, p 96). It is in both these senses –​liminality as a transitional state, and communitas as a means to describe collective social practices –​that we can begin to explain the efficacy of community-​based recovery practices. Moreover, by understanding recovery in terms of practices that announce and sustain liminal and transitional identities we can also start to explain, and to refine theoretically and methodologically, their role in the process or ‘ongoing quest’ of recovery (Best and Laudet, 2010). So, a first step in researching transitional or recovery communities (of various kinds) is to document those resources and describe the means by which social control (if only temporarily) is enacted within and between community members. This is not the same as identifying or assessing an individual’s recovery capital but is concerned with identifying the means through which such capital is acquired by the whole group or community: How does this communitas emerge? What are the conditions? its rites/​r ituals? its internal schema of classification? its dangers? Communitas often arises through the agency of those who are ‘structurally inferior’ (Turner, 1969, p 133), such as the seldom-​heard and disenfranchised individuals and groups discussed in this chapter, as exemplified in their social practices and performances, such as volunteering, supporting others and their perhaps ‘reactionary’ events and celebrations (for example, the recovery walk or gay parade). A second step in researching recovery communities is to understand (and deconstruct) the relationship between public recovery practices (for instance, volunteering) and private ones (for instance, 12-​step programmes), and to interrogate how community action, in the form of communitas, provokes and scaffolds the psychological ‘self-​work’ so essential to transition and recovery. Moreover, in interrogating the psychological self-​sufficiency that might be inherent within communitas, and which the formation of particular kinds of communitas might be anchored to, we might also wish to locate this within its specific cultural, historical and ideological context. Much of the empirical and theoretical work in relation to mutual-​aid recovery communities has been undertaken and described by those working within the US context 154

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(principally, William White). This raises intriguing questions regarding the transferability of such work to the UK context, specifically given that many contemporary concepts and their associated practices in relation to recovery have been transmitted from the US to the UK by recovery advocates (Humphreys and Lembke, 2014). References Beckwith, M., Best, D., Savic, M., Haslam, C., Bathish, R., Dingle, G, Mackenzie, J., Staiger, P.K. and Lubman, D. (2019) ‘Social identity mapping in addiction recovery (SIM-​AR): Extension and application of a visual method’, Addiction Research and Theory, 27(6): 462–​71. Best, D. and Laudet, A. (2010) The Potential of Recovery Capital, London: Royal Society of Arts. Best, D., Lubman, D., Savic, M., Wilson, A., Dingle, G., Haslam, S., Haslam, C. and Jetten, J. (2014) ‘Social and transitional identity: Exploring social networks and their significance in a therapeutic community setting’, Therapeutic Communities: The International Journal of Therapeutic Communities, 35(1): 10–​20. Best, D., Musgrove, A. and Hall, L. (2018) ‘The bridge between social identity and community capital on the path to recovery and desistance’, Probation Journal, 65(4): 394–​406. Bourdieu, P. (1977) Outline of a Theory of Practice, Cambridge: Cambridge University Press. Cloud, W. and Granfield, R. (2008) ‘Conceptualizing recovery capital: Expansion of a theoretical construct’, Substance Use and Misuse, 43: 1971–​86. Côté, J.E. (2002) ‘The role of identity capital in the transition to adulthood: The individualization thesis examined’, Journal of Youth Studies, 5(2): 117–​34. Côté, J.E. (2005) ‘Identity capital, social capital and the wider benefits of learning: Generating resources facilitative of social cohesion’, London Review of Education, 3: 221–​37. Cox, N., Clayson, A. and Webb, L. (2016) ‘A safe place to reflect on the meaning of recovery: A recovery community co-​productive approach using multimedia interviewing technology’, Drugs and Alcohol Today, 16(1): 4–​15. Erikson, E. (1950) Childhood and Society, New York: Norton. Groshkova, T., Best, D. and White, W. (2013) ‘The assessment of recovery capital: Properties and psychometrics of a measure of addiction recovery strengths’, Drug and Alcohol Review, 32: 187–​94. Humphreys, K. and Lembke, A. (2014) ‘Recovery-​oriented policy and care systems in the UK and USA’, Drug and Alcohol Review, 33(1): 13–​18. Jørgensen, C.R. (2009) ‘Identity style in patients with borderline personality disorder and normal controls’, Journal of Personality Disorder, 23(2): 101–​12. 155

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Lerner, R.M. (2006) ‘Developmental science, developmental systems, and contemporary theories’, in R.M. Lerner (ed) Theoretical Models of Human Development, Vol. 1: Handbook of Child Psychology (6th edn), Hoboken: Wiley, pp 1–​17. Luyckx, K., De White, H. and Goosens, L. (2011) ‘Perceived instability in emerging adulthood: The protective role of identity capital’, Journal of Applied Developmental Psychology, 32: 137–​45. Marcia, J.E. (1966) ‘Development and validation of ego-​identity status’, Journal of Personality and Social Psychology, 3: 551–​8. Mawson, E., Best, D., Beckwith, M., Dingle, G.A. and Lubman, D.I. (2015) ‘Social identity, social networks and recovery capital in emerging adulthood: A pilot study’, Substance Abuse Treatment and Prevention Policy, 10(45): 1–​11. Orford, J. (2001) Excessive Appetites: A Psychological View of Addictions (2nd edn), Chichester: Wiley. Putnam, R. (1995) ‘Bowling alone: America’s declining social capital’, Journal of Democracy, 6: 65–​78. Putnam, R. (2001) Bowling Alone: The Collapse and Revival of American Community, New York: Simon and Schuster. Schwartz, S., Côté, J. and Arnett, J. (2005) ‘Identity and agency in emerging adulthood: Two developmental routes in the individualization process’, Youth and Society, 37(2): 201–​29. Turner, V. (1969) The Ritual Process: Structure and Anti-​Structure, Ithaca, NY: Cornell University Press. Ungar, M. (2011) Social Ecology of Resilience, New York: Springer. Webb, L., Cox, C., Cumbers, H., Martikke, S., Gedzielewski, E. and Duale, M. (2017) ‘Personal resilience and identity capital among young people leaving care: Enhancing identity formation and life chances through involvement in volunteering and social action’, Journal of Youth Studies, 20(7): 889–​903. Webb, L., Clayson, A., Duda-​Mikulin, E. and Cox, N. (2020) ‘ “I’m getting the balls to say no”: Trajectories in long-​term recovery from problem substance use’, Journal of Health Psychology: 1–​12, doi:​ 10.1177%2F1359105320941248

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Care, continuity and change in long-​term recovery: the experiences of older opioid users in long-​term recovery in three German regions Ines Arendt

Introduction The fact that opioid users now have longer life expectancy is largely due to the availability of well-​developed medical and psychosocial care for substance users. In Germany, all citizens have access to extensive social welfare provision and a highly developed healthcare system. Opioid substitution treatment (OST) using methadone or other medication is the standard treatment for opioid users. According to the Substitution Register report, which is published by the German Federal Institute for Drugs and Medical Devices (FIDMD), the number of patients receiving OST rose from 46,000 in 2002 to 79,700 in 2019 (FIDMD, 2020). However, whilst OST helps substance users to stay off heroin, it often remains a part of their lives for many years or even decades. Although studies have shown that the social situations of older opioid users (OOUs) improve when they are receiving OST (EMCDDA, 2010; Wittchen et al, 2011a), there are often wider institutional factors that can have negative impacts for both service users and professionals. For example, finding employment or rewarding activity can be particularly difficult for people associated with long-​term opioid use due to previous life circumstances. This can result in limited options and frustration for everyone involved. Many studies indicate that older substance users are not only affected by psychosocial impairments but also by multiple health conditions that may lead to a loss of mobility and a need for care at an earlier age than in the general population (Reece, 2007; Vogt, 2011). This chapter describes the situation of opioid users aged 45 and over in Germany, and considers aspects such as the health-​related and social characteristics of this group, as well as indicators for the provision of professional support regarding treatment and recovery. The chapter presents findings from the Alters-​CM3 research project, which was conducted in 157

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Germany between 2014 and 2017. (Alters-​CM3 is a German abbreviation for ‘Case management for older opioid users in three German regions’). Funded by the Federal Ministry of Research and Education (FMRE), the research focussed on practitioners’ experiences of implementing a psychosocial intervention specifically adapted for OOUs; the intervention applied a person-​centred case-​management approach. In addition, the research considered the implications of the findings for OOUs’ long-​ term recovery in relation to their life satisfaction and the improvement of psychosocial support.

Older opioid users in long-​term recovery in Germany The European Monitoring Centre for Drugs and Drugs Addiction (EMCDDA) defines an older drug user as an individual aged over 40, noting that people in this age profile are at higher risk of harm due to long-​term physical dependence on a substance, or other health, psychological or social problems (EMCDDA, 2010). The Alters-​CM3 research project, which is central to this chapter, focusses on male and female opioid users aged over 45 in Germany. The fact that people who use opioids can get older is still a relatively new development (Bolz et al, 2018). This is due to improved medical care, especially OST, which was implemented in Germany in the early 1990s, but is also due to the improved treatment options for related diseases such as hepatitis C and the increased assistance offered by the addiction service centres (for example, street work) (Bolz et al, 2018), the implementation of drug consumption rooms within safer-​use and risk-​ management activities, and the distribution of sterile syringes. Nevertheless, there are a range of circumstances which may support or hinder the pursuit and maintenance of long-​term recovery in OUU. These include health and social situations and experiences of treatment, recovery and working with professionals.

Mental health, physical health and well-​being Many studies have shown that OOUs are affected by multiple mental and physical health problems (see, for example, Rosen et al, 2008; Funke et al, 2020). In Germany, 14 per cent of the female and 9 per cent of the male general population aged 45–​64 years old reported symptoms of depression in the year prior to the research (Robert Koch Institute, 2014). This is significantly higher among OOUs in the same age group (Schmid, 2018). Furthermore, OOUs aged over 45 are more likely to be affected by acute and chronic diseases, such as cardiovascular and respiratory diseases, arthritis and dental disease. These age-​related diseases often affect opioid users as much as 15–​20 years earlier than the general population (Reece, 2007; 158

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Vogt, 2009); there are also high rates of hepatitis C infections (Bundschuh et al, 2021). Aside from clinical aspects, there are several personal and system-​ related issues which should be considered in relation to OOUs; these include social isolation, social exclusion, shame, marginalisation and stigmatisation (EMCDDA, 2010; Atkinson, 2016; Johnston et al, 2017; Bolz et al, 2018). These factors can be considered to have negative effects on psychosocial and physical well-​being, life satisfaction and social and structural participation. The combination of these structural and social exclusion factors, along with the mental and physical impairments described earlier, leads to limitations in life satisfaction, quality of life (QoL) and opportunities for participation for OOUs; furthermore, such factors reduce their likelihood of OOUs participating in treatment programmes (Atkinson, 2016). With regard to participation and the effectiveness of drug treatment programmes, comparisons of older and younger substance users found that such programmes have positive effects on long-​term outcomes and adherence to treatment goals for older substance users (EMCDDA, 2010; Atkinson, 2016; Bolz et al, 2018).

Long-​term substitution treatment of older opioid users Opioid-​use disorder (OUD) is a chronic disorder, which normally requires both medication and psychosocial treatment and support (Hoffman et al, 2019). In Germany, OST is generally accompanied by psychosocial counselling, medical support from nursing staff and, in some cases, behavioural therapy. In the context of long-​term treatment, there are two general concepts of OST: long-​term maintenance and maintenance-​to-​abstinence (for example, Zippel-​Schultz et al, 2019). The concept of long-​term maintenance refers to the lifelong use of OST, with an assumption that discontinuation usually leads to a relapse. The maintenance-​to-​abstinence concept, however, views substitution as a way of providing a user with new freedom; if the substance no longer has a function, abstinence becomes a possible goal (Zippel-S​ chultz et al, 2019). OOUs usually benefit from OST, as it provides them with access to a range of services and enables them to establish more stable life situations, for example in terms of housing, drug use and employment. Studies found that, in most patients, OST leads to crucial stabilisation. The PREMOS (PREdictors, Moderators and Outcome of Substitution treatments) study, which was carried out in Germany in 2011, provided evidence of the effectiveness of long-​term OST; physical and psychosocial well-​being were shown to improve in many patients during treatment (Wittchen et al, 2011a). 159

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Abstinence, which is a long-​term recovery goal in the maintenance-​to-​ abstinence concept, emerged as a realistic goal for only a small minority of OOUs. In the German SubCare study, only 3.1 per cent (n = 4) of all participants (n = 130) finished treatment abstinent after two years (Zippel-​ Schultz et al, 2019); in the study from Eastwood et al (2018), 28.8 per cent (n = 877) of the initial sample of 7719 opioid users completed the OST abstinent and without re-​presentation after seven years. In Zippel-​Schultz et al’s (2019) SubCare study, the mean duration of substitution over the life course was 13 years (range: 6–​32 years). The variety of trajectories of OOUs in long-​term OST implies different criteria for a successful long-​term treatment. When can OOUs be regarded as having recovered? In their study of long-​term OST in England, Eastwood et al (2018) define applicable success criteria for substitution treatments as: ‘cessation of substitution treatment, abstinence from heroin and cocaine, achievement of treatment goals according to the treatment plan and no return to treatment during the observation period of six months’ (Eastwood et al, 2018, p 4). The Guidelines for the Psychosocially Assisted Pharmacological Treatment of Opioid Dependency ‘recommend that opioid agonist treatment should be seen as open ended and should be continued as long as clinically indicated’ (World Health Organization (WHO), 2009, p 37). These approaches support a less strict and more individual definition of treatment and recovery for OOUs. Even after several years of OST, many OOUs (both active users and those receiving opioid substitutions) frequently still require treatment for a range of mental and physical problems (Wittchen et al, 2011b; Zippel-​Schultz et al, 2019). The PREMOS study, on the other hand, reported a decrease in the demand for psychosocial counselling over time, as opportunities for change and improvement may be exhausted after a longer period, with all options having been offered and tried (Wittchen et al, 2011b). The lack of specific psychosocial counselling approaches for those receiving OST in Germany may be a further hindering aspect (Hoffman et al, 2019), when at the same time, the study by Eastwood et al (2018) showed that the OST outcome was better if participants had access to psychosocial counselling and employment. What is more, there is no clear definition of adequate and effective psychosocial counselling (Wittchen et al, 2011a) to meet the specific needs of older substance users (see, for example, EMCDDA, 2010, p 23; Atkinson et al, 2016, p 32). Among professionals there is often a knowledge gap regarding the specific demands of supporting this group (Bolz et al, 2018). All this and the fact that there are currently few interventions designed specifically for older substance users motivated the Alters-​CM3 project team to adapt a psychosocial intervention to the specific needs of this group, and to implement and evaluate it in practice, as described in the following sections. 160

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Project background and methods Between 2014 and 2017, the Alters-​CM3 research project was carried out by the University of Applied Sciences Koblenz in collaboration with the Catholic University of Applied Sciences in Cologne. Among other aspects, the study analysed the extent to which structured psychosocial care is possible and practical for OOUs, and how this group could benefit in terms of support and life satisfaction. The approach was tailored to the specific needs of older substance users and their long-​term relationship with support systems. In addition, data were collected on health, life satisfaction and QoL for older substance users (Schmid et al, 2016; Schmid, 2018). The study was undertaken in three West German regions: Frankfurt, Koblenz and Cologne/​Düsseldorf. The research design consisted of a quantitative pre-​post survey of 62 OOUs using standardised instruments and qualitative interviews with practitioners in the field. In the Alters-​CM3 study, case management is defined as a person-​ centred approach; based on the standard case management phase model (for example, DGCC, 2015), this approach provides a structure for professionals offering psychosocial counselling. The adaptation of the case management intervention for older substance users in the Alters-​CM3 study integrates elements of motivational case management (MOCA) (Schmid et al, 2012) and strength-​based case management (SBCM) (Rapp et al, 2012; in Germany, Ehlers et al, 2017). The aim of these adaptations is to provide a new focus for supporting a specific group receiving professional help over many years. In some cases, there may already be extensive working alliances between professionals and service users. These adjustments can offer service users a fresh perspective on individual strengths and resources, enable them to develop new ideas for improving QoL and allow them to progress systematically within the phase model of case management. Several further adaptations were made specifically for working with OOUs; these included providing additional outreach assistance, extending work on individual phases over multiple sessions, offering detailed step-​by-​step action planning to enable individuals to recognise achievements and integrating age-​related support (Schmid et al, 2016, 2018; Arendt et al, 2018). A total of 21 professionals (mostly social workers) were trained in this case-​management approach. These professionals then implemented the approach in their practical work with OOUs over a period of six months. Between February 2016 and May 2017, 62 OOUs (13 women and 49 men) were included in a quantitative pre-​post study. The inclusion criteria for the study were as follows: participants were aged at least 45 and were active opioid users and/​or receiving OST. In each case, the study participants were interviewed twice using the same sets of questions, first prior to the start 161

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of case management and again following a six-​month intervention period (Bundschuh et al, 2021). Additionally, the 21 case managers completed a self-​assessment for each of the 62 cases. Sets of variables in three instruments were used to analyse whether participants’ life situations improved over the period between the two interviews. First, study participants were asked 13 questions on life satisfaction; these were taken from a medical history tool based on the 2010 German core data set (KDS-​Kat) (German Centre for Addiction Issues, 2010). Participants were then asked two general questions about impairments caused by physical and psychological problems or diseases during the last 30 days. In addition, the HEALTH-​49 questionnaire (Rabung et al, 2009) was used; it consists of 49 questions about an individual’s physical and psychosocial status. The qualitative part of the study involved structured expert interviews with 21 practitioners (social workers and other professionals in the field of addictions) from nine different addiction service centres. Eight practitioners worked in low-​threshold facilities for opioid users, and 13 worked in assisted-​living housing projects which support people living independently or in substitution-​treatment facilities. The practitioners (12 women and nine men) were asked about their experiences of working with case management and about factors which supported or negatively affected their work with OOUs.

Case management with older opioid users: progress, quality and impact Quantitative data from the practitioners’ self-​a ssessments indicated case management processes were implemented to a satisfactory level in approximately two thirds of cases. As shown in Table 12.1, the implementation of individual case management phases decreased as the phase model progressed, as did the self-​assessed quality of implementation: In a further step, the 62 cases were divided into two categories. The first category –​‘per protocol implementation’ –​included all cases in which the case management phases were at least partially implemented up to action planning (Phase 4). All other cases were categorised as ‘implementation not per protocol’. On this basis, 42 of the 62 cases (67.7 per cent) could be evaluated as ‘per protocol implementation’. The proportion of ‘per protocol implementation’ differed according to the service setting and was highest in assisted-​living settings (73.9 per cent); this was closely followed by psychosocial counselling accompanying OST (71 per cent). However, in low-​threshold settings, such as supervised consumption spaces or drop-​in cafés with syringe-​exchange and harm-​ reduction offers, case management presented a greater challenge, and ‘per 162

Experiences of older opioid users Table 12.1: Case-​management model progress and quality of implementation during the study Phases of case-​ management model

Progress in case-​management model*

Quality of implementation (1 = very good –​ 5 = very bad)*

Implemented Partially Not Mean implemented implemented (M)

Standard deviation (SD)

Intake

100.0%

0.0%

0.0%

1.3

0.6

Strength-​based assessment

79.0%

14.5%

6.5%

1.9

1.1

Goal setting

74.2%

6.5%

19.4%

1.9

0.9

Service planning

56.5%

17.7%

25.8%

2.3

1.2

Linking

38.7%

30.6%

30.6%

2.7

1.2

Monitoring/​ reassessment

32.2%

19.4%

48.4%

2.7

1.2

Termination/​evaluation 31.3%

18.8%

50.0%

2.6

1.2

Note: * Self-​assessed by case managers Source: Schmid, 2018, p 9

protocol implementation’ was successful in only three out of eight cases (37.5 per cent) (Schmid, 2018; Bundschuh et al, 2021). Results from the KDS-​Kat questionnaire showed that the highest improvements in life satisfaction over the six-​month period were in relation to ‘relationships with parents/​siblings/​relatives’, ‘relationships with their children’, ‘substance use’ and ‘legal problems’ (Bundschuh et al, 2021, p 109), of which the relationships with parents and legal problems were statistically significant. The responses regarding participants’ self-​assessment of their physical and mental impairments in the 30 days prior to and following the case management intervention showed statistically significant improvements in relation to mental health. The results from the HEALTH-​49 questionnaire showed slight improvements in relation to ‘depression’, ‘phobic anxieties’, ‘mental and somatic impairments’, ‘mental well-​being’, ‘difficulties in interaction’, ‘activity and participation’ and ‘social impairment’ (Schmid, 2018, p 12). Further analysis revealed that the participants in the ‘per protocol implementation’ group (67.7 per cent) showed slightly greater improvements than clients who did not receive treatment per protocol (Schmid, 2018, p 12). In low-​threshold facilities, the implementation of a structured approach is more difficult due to a looser, less structured organisational environment. Nevertheless, successfully implementing case management in low-​threshold settings could lead to notable benefits for individual service users. 163

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When participants were asked whether they would recommend the case management programme to a friend, 60 out of 62 (96.8 per cent) responded positively. While the low drop-​out rate (two participants) shows a high acceptance of the intervention by OOUs (Schmid, 2018), this could also imply that there were strong links between service users and their social workers or social service providers. Although this intervention was found to be an appropriate means of supporting older substance users, in structured psychosocial counselling, participants’ individual experiences varied considerably (Schmid, 2018). Due to research-​design limitations (for example, there was no control group), the changes and improvements achieved over the six-​month period cannot conclusively be attributed to the intervention. Also, the intervention period of six months could be a limiting factor since it may be too short for substantial changes. It therefore seemed appropriate to systematically include practitioners’ perspectives when assessing the feasibility and professional acceptance of structured psychosocial interventions with older substance users.

Case management with older opioid users: experiences from the qualitative study Successful implementation of case management generally depends on multiple factors at professional, user and organisational levels (Vogt et al, 2018); this includes processes such as supervision, team support and cooperation with other social services. The practitioners’ belief in this applied approach –​in this case, person-​centred case management –​and their ability and willingness to apply instruments and follow the structured phase model played a significant role in successful implementation. These factors also appeared to be important with regard to service users’ experiences in the context of the intervention. Insights from the expert interviews suggested that achieving successful psychosocial counselling depended on the counsellor being convinced that the service users in the structured intervention were capable of participating and of changing and improving their lives (Vogt et al, 2018). In addition, structured psychosocial counselling requires a certain level of professional discipline; counsellors need to adhere to process steps and agreements made with service users. Qualities such as empathy, authenticity, honesty, appreciation, commitment and openness to an intensive working alliance with a client have shown to also be important factors in the successful implementation of the case-​ management approach: “Well, I’m honest [laughs]. I’m not pretending. Um, I keep trying to offer and I keep asking, ‘Would you try?’ … Well, my opiate clients, I really like them” (Social worker (female), Interview 9). In addition, professionals needed to be able to deal with frustration and resistance from service users. Some also had to cope with their own 164

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feelings of frustration if intensive work processes did not lead to the desired outcomes: “This can also be very frustrating at times. That you have the feeling that you could not support them and they just did not want to take it, that they did not want to take help for whatever reason” (Social worker (female), Interview 17). Practitioners reflected on the role of service users in supporting the implementation of a successful working alliance and case management: “The willingness to change must be there, or rather that someone is also able to express goals. And must also be able to keep these regular appointments” (Social worker (female), Interview 17). The quality of a psychosocial counselling process is also positively impacted by the stability of a service user’s life situation and substance consumption (such as stable OST), as well as by regular contact with the allocated counsellor (Vogt et al, 2018). Unreliability on the part of the professional or the service user, frequent crisis intervention and unrealistic goals and expectations regarding professional cooperation were found to be inhibiting factors. From an organisational perspective, the practitioners interviewed reported that working in a team that was open to the case-​management approach or receiving support or resources from supervisors assisted their work with service users. It also became clear that if case managers actively informed their team and organisation about the case-​management approach, this led to increased acceptance; this was also the case if the team was actively involved in the process. These same factors also played a role with regard to networking and cooperation with professionals from other social services. Here too, the practitioners highlighted the importance of commitment and involvement in establishing sustainable networks. In this context, there were frequent references to the need for ‘give and take’ in successful cooperations and networks: “if you only take help … then no functioning network can come out of it, this is always, it’s always based on reciprocity” (Social worker (male), Interview 2). Hence, commitment emerged as a key factor for the successful application of intensive psychosocial counselling (such as person-​centred case management) in terms of working directly with service users or other professionals.

Implications for supporting older opioid users in long-​term recovery This study underlines that many OOUs (including those receiving OST) continue to receive treatment for many years. This mostly leads to improvements in their social, health and life situations, which are generally more stable than they might be without treatment (EMCDDA, 2010, p 18). 165

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At the same time, the study identified specific implications and limitations of long-​term involvement with care at an individual, institutional and professional level. For example, sometimes there can be a point when treatment benefits have been maximised in terms of their efficacy or the range of options for further improvement have been exhausted: The OOUs, professionals involved in their support and the systems within which this takes place no longer have any new ideas to put forward. They can only offer maintenance and try to slow the decline caused by opioid-​related physical and mental impairments and the related social and QoL impacts. Many of the OOUs in the study expressed a desire to improve and change their lives; in many cases, such changes appeared to be possible with professional support. Several criteria were found that enhanced the success of change and improvement processes, such as the motivation and commitment of both service users and professionals. Commitment was also identified as an enhancing factor in the successful application of case management, cooperation and the creation of new professional networks. This seems particularly interesting in the context of case management’s effectiveness regarding linking with other organisations, which has been proven in several studies (Vanderplasschen et al, 2019). Conviction regarding the intervention’s worth was also found to be essential to the success of intensive working alliances; belief in the case-​management model and belief in service users’ ability to change and improve their QoL played a significant role. The motivational interviewing and strengths-​focussed components of the case-​management approach proved to be beneficial, and led to some unexpected positive results for professionals. Long-​term service users were able to articulate wishes and aims, and unexpected capabilities and commitment to achieving these aims emerged: “Well, it did draw someone out of their shell to try and do something again” (Social worker (female), Interview 9). Both social workers and service users benefited from the sense of success experienced through step-​by-​step action planning, which led to multiple minor achievements. Many different goals were achieved in terms of improvements in financial or housing situations (managing financial debts, renovating a flat or purchasing a new TV), health improvements (getting new glasses or new teeth or finding a new doctor) and employment (participating in a project for the long-​term unemployed). This led to increased self-​efficacy, which is known to aid the success of long-​term treatment (Hser et al, 2007).

Conclusion For OOUs, long-​term recovery is inevitably associated with long-​term substitution treatment, as this is considered the standard for treating OUD. As only a small minority of users achieves abstinence, for the majority this 166

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means long-​term treatment. The Alters-​CM3 study participants reflect the situation of OOUs in Germany; aged over 45 years and with multiple health and psychosocial impairments, the participants were found to benefit from structured psychosocial counselling processes using case management. During the support processes, individual aims and achievements were planned, and in some cases these focussed on abstinence as an aim. As described earlier, most processes concentrated on practical aims for improving an individual’s financial, housing, health and employment situation. All of these achievements are associated with increases in life satisfaction and QoL for OOUs; these aspects lead to improved results in addiction treatment and can enhance abstinence or reduce consumption. In addition, the study found that the psychosocial intervention had positive effects on long-​term outcomes and adherence to treatment goals; this can motivate both service users and professionals. This chapter has shown that while abstinence should always remain an option, it should not be the main long-​term recovery aim for OOUs. It seems clear that increasing the focus on individual-​oriented definitions of success can increase the effectiveness of interventions and help OOUs to improve their lives. References Arendt, I. and Weil, B. (2018) ‘Stärkenorientiertes Case Management für ältere Drogenabhängige –​zwei Fallbeispiele’, in M. Schmid and I. Arendt (eds) ‘Es ist ein Wunder, dass ich noch lebe …’: Ältere Drogenabhängige, Hilfesysteme und Lebenswelten. Dokumentation zur Fachtagung des Verbundprojektes ‘Alters-​C M3’: Case Management für ältere Drogenabhängige des BMBF geförderten Forschungsprojektes ‘Alters-​ CM3’, University of Applied Sciences, Koblenz, pp 27–​36 Atkinson, C. (2016) Service Responses for Older High-​Risk Drug Users: A Literature Review, Glasgow: Scottish Centre for Crime and Justice Research. Bolz, M., Braasch, S., Körner, U., Schäffler, F. Thym, M. and Stubican, D. (2018) Ältere Drogenabhängige in Versorgungssystemen. Ein Leitfaden, Der Paritätische Bayern; Condrobs, München; mudra, Nürnberg: Drogenhilfe Schwaben. Bundschuh, S., Freitas, MJ., Palacìn, C. and Zganec, N. (2021) Ambivalences of Inclusion in Society and Social Work: Research Based Reflections in Four European Countries, Cham: Springer. Deutsche Gesellschaft für Care und Case Management e. V. (DGCC) (2015) Case Management Leitlinien. Rahmenempfehlungen, Standards und ethische Grundlagen, Heidelberg: Medhochzwei. Eastwood, B., Strang, J. and Marsden, J. (2018) ‘Continuous opioid substitution treatment over five years: Heroin use trajectories and outcomes’, Drug and Alcohol Dependence, 188: 200–​8, doi:10.1016/​ j.drugalcdep.2018.03.052 167

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Ehlers, C., Müller, M. and Schuster, F. (2017) Stärkenorientiertes Case Management: Komplexe Fälle in fünf Schr itten bearbeiten, Opladen: Barbara Budrich. EMCDDA (2010) Treatment and Care for Older Drug Users, Lisbon: EMCDDA. FIDMD (2020) Report on the Substitution Register, Bonn: Bundesinstitut für Arzneimittel und Medizinprodukte, available online from: https://​www. bfarm.de/​SharedDocs/​Downloads/​DE/​Bundesopiumstelle/​SubstitReg/​ Subst_​Bericht2020.pdf?_​_​blob=publicationFileandv=2 Funke, W., Kuhlmann, T., Backmund, M., Bischof, G., Lange, N. and Preuss, U. (2020) ‘Substitutionsbehandlung opioidabhängiger Menschen in der medizinischen Rehabilitation’ , Suchttherapie, 21(1): 39–​42, doi:10.1055/​ a-​1080-​7448 German Centre for Addiction Issues (2010) Deutscher Kerndatensatz zur Dokumentation im Bereich der Suchtkrankenhilfe. Definitionen und Erläuterungen zum Gebrauch, Hamm: DHS, available online from: http://​www.dhs.de/​ fileadmin/​user_u ​ pload/p​ df/A ​ rbeitsfeld_S​ tatistik/​KDS_​Manual_​10_​2010. pdf Hoffman, K.A., Ponce Terashima, J. and McCarty, D. (2019) ‘Opioid use disorder and treatment: Challenges and opportunities’, BMC Health Services Research, 19(1): 884, doi:10.1186/​s12913-​019-​4751-​4 Hser, Y.-​I. (2007) ‘Predicting long-​term stable recovery from heroin addiction: Findings from a 33-​year follow-​up study’, Journal of Addictive Diseases, 26(1): 51–​60, doi:10.1300/​J069v26n01_​07 Johnston, L., Liddell, D., Browne, K. and Priyadarshi, S. (2017) ‘Responding to the needs of ageing drug users’, EMCDDA, available online from: https://www.emcdda.europa.eu/system/file s/attachments/6225/ EuropeanResponsesGuide2017_BackgroundPaper-Ageing-drug-users.pdf Rabung, S., Harfst, T., Kawski, S., Koch, U., Wittchen, H. and Schulz, H. (2009) ‘Psychometrische Überprüfung einer verkürzten Version der “Hamburger Module zur Erfassung allgemeiner Aspekte psychosozialer Gesundheit für die therapeutische Praxis” (HEALTH-​49)’, Zeitschrift für Psychosomatische Medizin und Psychotherapie, 55: 162–​79. Rapp, C.A. and Goscha, R.J. (2012) The Strengths Model. A Recovery-​ Oriented Approach to Mental Health Services (3rd edn), New York: Oxford University Press. Reece, A.S. (2007) ‘Evidence of accelerated ageing in clinical drug addiction from immune, hepatic and metabolic biomarkers’, Immunity and Aging, 24: 4-​6, doi:10.1186/​1742-​4933-​4-​6 Robert Koch-​Institut (Ed) (2014) Depression. Faktenblatt zu GEDA 2012: Ergebnisse der Studie ‘Gesundheit in Deutschland aktuell 2012’, Berlin: RKI.

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Rosen, D., Smith, M.L. and Reynolds, C.F. (2008) ‘The prevalence of mental and physical health disorders among older methadone patients’, American Journal of Geriatric Psychiatry, 16(6): 488–​97. Schmid, M. (2018) ‘Case Management für ältere Drogenabhängige –​ Erkenntnisse aus dem Forschungsprojekt’, in M. Schmid and I. Arendt (eds) ‘Es ist ein Wunder, dass ich noch lebe …’: Ältere Drogenabhängige, Hilfesysteme und Lebenswelten. Dokumentation zur Fachtagung des Verbundprojektes ‘Alters-​ CM3’: Case Management für ältere Drogenabhängige des BMBF geförderten Forschungsprojektes ‘Alters-​CM3’, University of Applied Social Sciences, Koblenz, pp 5–​14. Schmid, M., Schuh, M. and Vogt, I. (2012) Motivational Case Management. Ein Manual für die Drogen-​und Suchthilfe, Heidelberg: Medhochzwei (Case Management in der Praxis). Schmid, M., Hoff, T., Arendt, I., Follmann-​Muth, K., Kuhn, U. and Vogt, I. (2016) ‘Case Management für ältere Drogenabhängige: Modellprojekt zu Case Management in der Drogenhilfe’, in Case Management, 4, pp 176–​82. Vanderplasschen, W., Rapp, R.C., De Maeyer, J. and Van Den Noortgate, W. (2019) ‘A meta-​analysis of the efficacy of case management for substance use disorders: A recovery perspective’, Front. Psychiatry, 10: 186. Vogt, I. (2009) ‘Lebenslagen und Gesundheit älterer Drogenabhängiger: Ein Literaturbericht’, Suchttherapie, 10(1): 17–​24, doi:10.1055/s​ -0​ 028-1​ 128135 Vogt, I. (Ed) (2011) Auch Süchtige altern. Probleme und Versorgung älterer Drogenabhängiger, Frankfurt: Fachhochschulverlag. Vogt, I., Arendt, I. and Schmid, M. (2018) ‘Case Management für ältere Drogenabhängige: Die Sicht der Sozialarbeiterinnen und Sozialarbeiter auf Chancen und Probleme von Case Management’, conference paper, Deutscher Suchtkongress 2018, Hamburg. Wittchen, H-​U., Rehm, J.T., Gölz, J., Kraus, M.R., Schäfer, M., Soyka, M., Scherbaum, N., Backmund, M. and Bühringer, G. (2011a) ‘Schlussfolgerungen und Empfehlungen für eine bedarfs-​ und zielgruppengerechtere Gestaltung der langfristigen Substitution Opioidabhängiger’, Suchttmed, 13(5): 287–​93. Wittchen, H.-​U., Träder, A., Klotsche, J., Backmund, M., Bühringer, G. and Rehm, J.T. (2011b) ‘Die Rolle der Psychosozialen Begleitung in der langfristigen Substitutionsbehandlung’, Suchtmed, 13(5): 258–​62. World Health Organization (2009) Guidelines for the Psychosocially Assisted Pharmacological Treatment of Opioid Dependence, Geneva: WHO, available online from: https://www.who.int/substance_abuse/publications/opioid _dependence_guidelines.pdf Zippel-​Schultz, B., Specka, M., Stöver, H., Nowak, M., Cimander, K. and Maryschok, M. (2019) ‘Ergebnisse der langjährigen Substitutionsbehandlung Opiatabhängiger –​die SubsCare-​Studie’, Suchttherapie, 20(2): 76–​84.

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When long-​term recovery isn’t an option: people at the end of life Sam Wright and Gemma Yarwood

Introduction Long-​term recovery is not something that people who use alcohol and/​ or other drugs can aim for as they approach the end of their life. But we can learn much from the palliative care field about how to develop ideas about recovery that are more inclusive of all people using substances as well as the people who care for them. This chapter uses brief descriptions of people’s lives to question how useful the concept of long-​term recovery is for people with chronic health problems (especially those approaching the end of their lives). Drawing on lessons from palliative care, we argue that substance-​use policy, commissioning and practice could become more inclusive by prioritising quality of life and the physical/​mental well-​being of people using substances, regardless of how close to death they are. Palliative care is defined as ‘The active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families’ (National Institute for Health and Care Excellence (NICE), 2021). It is both a medical speciality and a social movement that aims to improve the care of people who are dying by constantly evolving to meet each individual’s changing support needs and maximising their quality of life (Graham and Clark, 2008). Ideally, palliative care commences early on after a life-​shortening condition is diagnosed. It runs alongside active treatment, becoming the more prominent aspect of care as the individual becomes progressively more ill. The core ideas used to develop palliative care –​focussing on immediate, day-​by-​day quality of life and attending to both the individual and social/​f amilial aspects of a person’s life in a holistic manner –​complement current thinking about substance-​use recovery. In this chapter, we describe how the concept of recovery could be improved by integrating palliative care approaches within it, thereby achieving a more finely tuned and dynamic balance between health and social care.

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At this stage we want to clarify that we are not experts in recovery. We are UK-​based researchers interested in the end-​of-​life care needs of people using substances and the support needs of their caregivers, whether family and friends, drug/​alcohol workers or hospice staff. In our end-​of-​life research we did not ask participants to talk directly about their experiences of recovery, rather we asked about their substance use and their experiences of health/​ social care. Here we offer our reflections on how their life histories –​as told at the end of their lives –​inform debates about long-​term recovery. After briefly describing the research upon which this chapter is based, our argument is structured in two main sections, through which we: 1. present five brief vignettes about people approaching the end of their lives, exploring the range of social care needs among this group to unpack some of the ideas within a prominent UK definition of recovery; and 2. make the case that ideas from palliative care could enhance substance-​ use policy and practice by promoting a more inclusive, person-​ centred approach.

Introducing the study Between 2016 and 2018, Professor Sarah Galvani led a multi-​disciplinary team of researchers from Manchester Metropolitan University to explore end-​of-​life care for people using substances. This programme of work was divided into six strands, two of which involved in-​depth, semi-​structured interviews with people approaching the end of their lives and their families. We spoke to people who were accessing substance-​use treatment and/​or hospice services, as well as those not using services. The aims of this research were to: • document how substance-​use and end-​of-​life services supported people with substance problems and terminal illness; • report the good practice and challenges that people faced in accessing support services; and • provide an opportunity for people reaching the end of their lives and family caregivers to comment on the support received and how that could be improved. Interviewees were recruited from a range of sources, including hospices, substance-​use treatment services and community networks. We completed interviews with 11 people approaching the end of their lives who had current or past substance-​use difficulties, and 18 family caregivers. All interviews were audio recorded and fully transcribed, and we analysed the data using thematic analysis (Braun and Clarke, 2006). 171

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For this chapter we present vignettes of five people, selected because their stories highlight particular limitations in current ways of thinking about recovery.

The long-​term social care needs of people using substances: how could these inform ideas about recovery? The term ‘recovery’ is used in numerous contexts and in relation to a range of physical and mental health conditions (for example: cancer, depression, eating disorders and other mental health problems). When thinking specifically about substance use, it is clear that long-​term recovery goals are not feasible for people using alcohol/​other drugs who have a life-​shortening condition. In this chapter, we therefore focus simply on the concept of recovery: exploring how its definition could be adapted or reinterpreted to better reflect the experiences of people using substances who are approaching the end of their lives (or who have long-​term and/​or complex healthcare needs more generally). The concept of recovery has been subject to much debate (Paylor et al, 2012; Neale et al, 2014; Neale et al, 2015). In 2008, the UK Drug Policy Commission (UKDPC) –​an independent body formed to provide objective analysis of UK drug policy and practice evidence –​convened an expert group to reach consensus on what recovery entailed. The resulting report stated: ‘The process of recovery from problematic substance use is characterised by voluntarily-​sustained control over substance use which maximises health and wellbeing and participation in the rights, roles and responsibilities of society’ (UKDPC, 2008, p 6). With insight from our vignettes, we now seek to revisit and build upon those original, nuanced UKDPC ideas about what recovery entails. Each of these stories poses specific questions that we then discuss. Vignette 1: Bev (57 years old) Bev described herself as having been psychologically dependent on alcohol for decades. She had received alcohol counselling via her GP many years prior to interview, but she only ever wanted to reduce, not stop, her alcohol use. She had one daughter (Lizzie), who developed a serious problem with heroin as an adult, ending up in prison where she received several drug interventions, which led to her own successful recovery. When we met Bev, she was still drinking throughout the day and was dying from lung cancer. We also interviewed Lizzie separately. Lizzie described how her Mum was emotionally unavailable while she was growing up and believed this was linked to her own heroin use. 172

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What opportunities are there to generate ‘voluntariness’? In this first vignette we see that although Bev never wished to become abstinent, her relationship with her daughter was impaired by her ongoing alcohol use. While not aiming for recovery in the traditional sense, both Bev and her daughter had unmet support needs. Family-​focussed support that sought to maximise quality of life for both of them was finally available from the hospice. This is just one example of how palliative care provided a nuanced, family-​focussed response. Sadly, in this case, opportunities to harness concerns for Lizzie’s well-​being were not seized upon earlier as a means of building Bev’s motivation for controlling her alcohol use. Relying solely on self-​referral into substance treatment (that the general public perceives to be abstinence based) means that those who are not self-​motivated to stop using are unlikely to access support. They never get a chance to build their motivation to use substances in a less harmful way, and their families may be left with the stark choice of accepting their substance use or separating from them. Vignette 2: Barbara (55 years old) Barbara’s social drinking became increasingly problematic as she endured a painful separation from her husband. For several years she was in and out of alcohol treatment, achieving abstinence multiple times until another huge life stress would prove too much to cope with and she returned to drinking. Barbara stopped drinking at one point to provide care for her father, who she was very close to. But she started drinking again when he died. By the time we met her, she had developed liver failure, with a range of related health symptoms. What do we mean by ‘sustained control’? Whenever people seeking to control their substance use have a slip or relapse, it is crucial that they can: 1) determine whether they have experienced a minor, temporary setback or are at risk of sliding back to previous levels of problematic use; and 2) access timely support to prevent the re-​emergence of dependence. In Barbara’s case, we see she was able to stop drinking alcohol for the sake of caring for her father, but she needed ongoing emotional support to maintain her stability over the longer term, particularly through her bereavement. Without social care to help her address challenging life situations as they arose, Barbara was left struggling in isolation, relapsing into problematic alcohol use before accessing support. She spent much more time using alcohol to alleviate distress than would likely have been the case if long-​term social care was more readily available. Left isolated without any form of social care, Barbara ended up irreparably damaging her health. 173

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Vignette 3: Rob (42 years old) Rob was a long-​term heroin user who had been in and out of treatment for many years. He developed endocarditis (a bacterial infection of his heart valves), which permanently impeded his heart’s functioning and reduced his lifespan to a few years. It was only when he realised that his life was limited that he stopped using street drugs and focussed on strengthening his relationships with his mum, son and close friends. He started participating in his local hospice’s day programme, designed to enhance emotional resilience and psychological well-​being. However, he was very careful not to disclose his history of substance use to other patients or any staff who did not need to know –​for fear of the stigma he might face. Is the ability to maximise ‘health and well-​being’ a necessary condition for long-​term recovery? Lots of people who use substances regularly have long-​term health difficulties and multiple, complex support needs. Many of them will in part be using substances to suppress painful feelings. As such, if they try to reduce their reliance on substances, their mental well-​being may actually deteriorate over the short term. While harm reduction, motivational interviewing and self-​determined goals are at the core of many treatment interventions, we see in Rob’s story that until a life-​shortening health condition triggered his move towards recovery from substance use, he was highly reluctant to approach health services for fear of being judged and discriminated against. Like many people who feel ashamed, guilty and want to avoid stigmatisation, he only accessed emergency healthcare when very close to death (Wright et al, 2017). An approach to recovery is needed that explicitly includes people whose physical and/​or mental health is deteriorating, particularly the growing subgroup of older opioid users in substance treatment (Beynon et al, 2010). Recovery-​based policies need to include provision for people adapting to disability, chronic illness, mental ill health and possible premature mortality –​whether that is caused by, or unrelated to, their substance use. Given that ageing and dying are inevitable experiences for us all, recognition that recovery should incorporate people with multiple health problems would be a much more inclusive and realistic approach. Vignette 4: Trevor (61 years old) Trevor had abstained from alcohol for many years, since nearly dying from alcohol related liver damage. But two years prior to our research, his inability to repair his broken marriage led him to return to drinking heavily. Although 174

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he had been involved with mutual support previously, he had found it unsatisfactory and so did not return. Nor did he want to access treatment services again. Some of his close family also had difficulties with alcohol, and so their opinions were divided on how serious a problem his return to drinking was. His adult children, hurt from his heavy drinking as they were growing up, struggled to talk to him about their concerns for his health –​ not least because he denied that he was drinking problematically. Despite the best attempts from his close friends to support him, he continued to use alcohol until he was hospitalised. He ultimately died from liver failure. Do recovery debates give sufficient recognition to the need to rebuild personal relationships? As Trevor’s vignette reveals, the recovery process is navigated within an emotional and familial context. Despite many years of recovery, a combination of difficulties proved too much for him, and unresolved emotional difficulties (including his siblings’ own alcohol problems) made it difficult for his relatives to respond to his return to drinking. People whose personal relationships have been damaged by their substance use may need support to rebuild those roles and responsibilities and to minimise the risk of wider family members developing (or continuing) unhealthy relationships with substances. Recovery goals often include an emphasis on (re)building personal relationships and providing opportunities for meaningful connections with others. Yet debates around recovery –​particularly those emphasising the long-​term view –​may need to put even greater emphasis on work to repair personal relationships, undo harm and minimise substance problems among whole family networks. Vignette 5: Paul (67 years old) Paul and his wife had not used heroin for over eight years. Four years prior to our interview, he had been diagnosed with cancer and had since undergone a range of treatments. Days before our interview, Paul had been informed that his latest treatment had not been successful and that his cancer was terminal. Although it was many years since using drugs, his former identity as drug user with his “arse hanging out of my jeans” had left him and his wife cautious about opening up their lives to MacMillan nurses and other health and social care professionals. Although Paul and his wife had previously volunteered for a substance-​use service to challenge health professionals’ negative attitudes, they still felt vulnerable to negative judgements from others. Paul’s previous experiences of discrimination still coloured his expectations about how he would be treated by health professionals as he approached his death. He was also very reluctant to use opioid painkillers –​although his wife had been able 175

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to persuade him to take them when the pain became too much. Sadly, their poverty made the painful process of funeral planning even more distressing. Can the stigma of substance use be overcome to build a new identity? Given current levels of stigma against people who use substances problematically, can those recovering from substance use genuinely enjoy ‘participation in the rights, roles and responsibilities of society’? Current conceptualisations of recovery do not sufficiently recognise the long-​term negative impact of stigmatised identities upon people using substances or the extent to which these may impede their access to health and social care. Drawing on our research, despite deteriorating health and dire need for support, people at end of life often discussed feeling reluctant to access health and social care services. Like all of us, people in recovery have limited power to change other people’s attitudes and behaviour towards them. Unfortunately, the people with negative attitudes can include some health and social care practitioners whose actions create huge barriers to accessing support for both people in active substance use and those in recovery (Ashby et al, 2018; Yarwood et al, 2018). Paul’s story illuminates how his identity as an ex-​drug user –​even though that was eight years in the past –​made it very difficult for him and his wife to ask for support as he became terminally ill. Indeed, in our research, hospice professionals disclosed reports of people with a history of substance use being denied medical treatment –​particularly opioid painkillers –​in primary or acute care, despite being in long-​term recovery (Galvani et al, 2018). Paul’s vignette reveals that there is much more to recovery than abstaining from substance use, providing another example of how shared learning between palliative care and substance-​use services can enhance both fields of practice. Recovery needs to include the idea of regaining an identity free from stigma and fear of discrimination by others. We argue, therefore, that regardless of how long a person has to live, recovery needs to include a focus on rebuilding a positive identity, released from fear of judgement and discrimination from health and social care practitioners.

Discussion: How does the end of life challenge ideas about recovery? These five vignettes highlight not only the precariousness of abstinence but also its complex interplay with other aspects of life considered crucial to ‘full recovery’, such that physical or mental health may deteriorate or full participation in life may be compromised for the sake of control over substances. At various times, all of these people had sought to control, if not 176

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cease, their substance use. Most of them became abstinent at various points in their lives, although many subsequently returned to using substances. Indeed, with the benefit of the hindsight made possible by their being at the end of their lives, it is easy to see the chronic relapsing pattern of substance use and how interwoven it is with longer-​term social care needs. Can ideas about recovery include the need for each person to adopt both self-​compassion for their own substance-use history as well as the confidence to challenge stigma and discrimination from others? It is difficult to envisage how these two goals could be achieved practically. Nevertheless, it is crucial that people can overcome feelings of shame arising from having had a substance problem so that they feel confident to talk openly about their past and access health and social care without fear of being treated as second-​class citizens. Our research highlighted that in the last days of life many people with substance-​using histories are only too aware of the stigma they experienced over their lifetime, and that their dying wishes are to not carry the ‘spoiled identity’ of the ‘user’ anymore, regardless of where they sit within recovery definitions and interpretations (Ashby et al, 2018). This brings us to consider whether it is possible to reconceptualise recovery so that it can include all people using substances –​however ill they are and however long they have left to live. An alternative conceptualisation of recovery Long-​term recovery is not a useful concept for people using substances who are approaching the end of their lives. However, the experiences of those people, as well as insight from the palliative care sector, can offer ideas about how recovery could become a much more nuanced and ecologically-​based concept. As described in the introduction, palliative care refers to the person-​ centred provision of psychological, social, spiritual and practical support that seeks to identify and meet the care needs of both the person who is dying and their family (NICE, 2021). Ideally, palliative care is not something that starts when active treatment has ceased but is introduced gradually alongside it, growing in prominence if other treatment becomes unsuccessful. Thus, it works well in supporting people experiencing a great deal of uncertainty in their lives: supporting them and their families to make the psychological and emotional adjustments needed as they become aware that they may be approaching the end of their life. The uncertain trajectory of trying to manage substance use –​often featuring periods of controlled use followed by periods of relapse –​mirrors the unpredictable health trajectory for many people with a terminal illness who will experience periods of feeling well against an overall background of deteriorating health. Palliative care approaches can help people with chronic health problems and their families to cope better with these experiences of 177

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unpredictability, vulnerability and fluctuations in personal control. With this palliative care lens, the first recovery priority for people using substances who have chronic health problems needs to be maximising their immediate well-​being and quality of life. This must take precedence over and above cessation of substance use, particularly where someone’s ability to manage their mental/​emotional well-​being may require maintenance or very slow reduction of substance use. The second (linked) priority is to recognise the centrality of relationships in everybody’s well-​being, and both the positive and negative effects that they play in substance use and long-​term recovery. Again, the field of palliative care gives us clarity regarding the crucial importance of personal relationships to everyone’s well-​being. Recognition of the support needs of family members –​both in terms of their role as carers and also as individuals deserving assistance in their own right –​is a way of bringing a more ecological perspective to ideas about recovery (Best, 2019). Although substance-​use services do provide social care alongside medical treatment, the balance between those two approaches may be enhanced by adopting a palliative care model whereby levels of social care and family support are constantly changed in response to evolving needs. Access to long-​term social care that continues beyond cessation of any medical treatment and is provided to both the person using substances and their wider family could help many people to achieve more sustainable control over their substance use. What can substance-​use policy and practice learn from palliative/​ end-​of-​life care? In underplaying the relational and emotional aspects of long-​term well-​being, UK drug and alcohol policy buttresses the idea of recovery as an individual goal, overlooking the crucial social and emotional context for supporting that process (Best, 2019). Where substance-​use policy uses abstinence as the basis for judging ‘successful completion’ of treatment, this can lead to premature withdrawal of much-​needed long-​term support. A more holistic view of what it takes to achieve long-​term well-​being would allow the design and resourcing of treatment services to engage with a much broader group of people using substances and the social and relational contexts within which they live. Greater reflection on and understanding of the social and historical context of people’s substance use in UK substance-​use policy, incorporating key concepts from the palliative care field (such as family-​focussed support), can help us to develop a more inclusive concept of recovery –​even for those people who approaching the end of their lives. We need to develop substance-​use policies that prioritise provision of compassionate care to all people using alcohol/​other drugs and recognise the 178

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relational and social contexts within which we all live and hope to thrive. We know from our research on end-​of-​life care how much stigma people with drug and alcohol problems face –​including from some health and social care practitioners (Witham et al, 2020). Even after years of not using substances, people can still be reluctant to approach health services for fear of being judged and discriminated against (Wright et al, 2017; Yarwood et al, 2018). In essence, we are arguing for a stronger social justice basis for future substance-​use policy and practice, so that many more people with long-​term support needs (and their families) can access the care that they require. Our position can be summarised in the following recommendations for policy: • Resource treatment services so that each person can receive long-​term support to achieve a good quality of life (irrespective of whether/​how quickly they achieve abstinence). Palliative care seeks to provide holistic care and treatment for as long as the individual and their family or friends need it. For the substance-​use sector, this suggests that all statutory, voluntary sector and mutual-​aid supports require the resources to allow them to respond to each individual’s changing needs and the complexities of real life –​especially the interplay between substance use, mental and physical health and the common, chronic relapsing nature of alcohol/​ other drug use. • Provide long-​term, whole-​family social care and support (with a definition of family that allows each individual to identify the people who are most important to them). Like palliative care, substance-​use services need to be able to support family members in their own right (irrespective of whether their relative engages with treatment) and ensure that services are funded to provide practitioners with ongoing support for this responsibility and its emotional impact upon them. • Identify and resource a systemic advocacy role for substance-​use services (moving away from reliance on individual practitioners’ problem-​solving with specific service users, towards a system-​level change that seeks to eliminate the stigma and discrimination levelled at people who use substances and their families). In the palliative care field, Hospice UK and the Dying Matters programme both exist to raise national awareness of the needs of people approaching the end of their lives and lessen stigma and fear. Similarly, we argue that substance-​use services should be resourced and encouraged to challenge their own and other organisations’ professional orthodoxies which do not work in the best interests of people using substances and their families. One key element of this is to ensure that practitioners are able to support each other’s emotional well-​being through identifying, sharing and responding to both good and poor practice –​to keep services constantly evolving to meet new challenges. 179

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Conclusion In this chapter we have reviewed ideas of recovery through the lens of the retrospective lived experiences of people approaching the end of their lives. The vignettes highlight how complexities in people’s lives such as personal relationships, caring responsibilities, poor physical or mental health, changing social roles and long-​term stigma all impacted upon their substance use. Moreover, it is clear that having had a problem with alcohol/​other drug use casts a long shadow –​such that even many years after ceasing substance use, people still feel stigmatised and fearful about how others will treat them. This includes health and social care practitioners, whose negative attitudes and behaviour have serious ramifications for people who need support. Only by giving greater priority to developing positive interpersonal relationships, removing stigma and providing compassionate care can policy and practice truly support people to maximise their health and well-​being. The recommendations we make relate not only to people who are approaching the end of their lives but also have wider relevance for all people using substances. By contemplating the life stories of five people at the end of their lives, we have been able to map their experiences onto key concepts within recovery debates. Our knowledge of palliative care has reinforced our ideas about the need for long-​term social care for people with substance problems and their families. We raise a call to action for future substance-​use policies and practice to be designed in consideration of the winding trajectories of long-​term recovery. One crucial element of this is listening to the voices of people with experience, placing them more centrally at the heart of policy and practice development. We hope this chapter has made a start on this. Policy and practice also need to explicitly address the breadth of emotional, relationship-​based and anti-​discriminatory support that people who use substances need in order to ensure equitable access to health and social care. Current UK substance-​use policies need revisiting to explicitly include people whose health is deteriorating (and who may be approaching the end of their lives), for whom the current concept of recovery seems quite irrelevant. References Ashby, J., Wright, S. and Galvani, S. (2018) ‘End of life care for people with alcohol and other drug problems: Interviews with people with end of life care needs who have substance problems’, Manchester Metropolitan University, endoflifecaresubstanceuse.com, available online from: https://​ endoflifecaresubstanceuse.com/​2-​people-​with-​experience-​perspectives/​ Best, D. (2019) Pathways to Recovery and Desistance: The Role of the Social Contagion of Hope, Bristol: Policy Press. 180

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Beynon, C., McVeigh, J., Hurst, A. and Marr, A. (2010) ‘Older and sicker: Changing mortality of drug users in treatment in the north west of England’, International Journal of Drug Policy, 21(5): 429–​31. Braun, V. and Clarke, V. (2006) ‘Using thematic analysis in psychology’, Qualitative Research in Psychology, 3: 77–​101. Galvani, S., Dance, C. and Wright, S. (2018) End of Life Care for People with Alcohol and Other Drug Problems: Report on Practitioner Experiences of Providing Care, Manchester Metropolitan University, endoflifecaresubstanceuse. com, available online from: https://​ e ndoflifecaresubstanceuse.com/​ 3-​professionals-​perspectives/​ Graham, F. and Clark, D. (2008) ‘The changing model of palliative care’, Medicine, 36(2): 64–​6, doi:10.1016/​j.mpmed.2007.11.009 National Institute for Health and Care Excellence (2021) ‘What is palliative care’, available online from: https://cks.nice.org.uk/topics/ palliative-care-general-issues/ Neale, J., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Strang, J., Tompkins, C., Wheeler, C. and Wykes, T. (2014) ‘How should we measure addiction recovery? Analysis of service provider perspectives using online Delphi groups’, Drugs: Education, Prevention and Policy, doi:10.3109/​ 09687637.2014.918089 Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T. and Strang, J. (2015) ‘ “You’re all going to hate the word ‘recovery’ by the end of this”: Service users’ views of measuring addiction recovery’, Drugs: Education, Prevention and Policy, 22(1): 26–​34, doi:10.3109/​09687637.2014.947564 Paylor, I., Measham, F. and Asher, A. (2012) Social Work and Drug Use, Maidenhead: Open University Press. UK Drug Policy Commission (UKDPC) (2008) The UK Drug Policy Commission Recovery Consensus Group: A Vision of Recovery, London: UK Drug Policy Commission. Witham, G., Yarwood, G., Wright, S. and Galvani, S. (2020) ‘An ethical exploration of the narratives surrounding substance use and pain management at the end of life: A discussion paper’, Nursing Ethics, 27(5): 1344–​54. Wright, S., Yarwood, G., Templeton, L. and Galvani, S. (2017) ‘End of life care for people with alcohol and other drug problems: Secondary analysis of interviews with family members, friends and carers bereaved through a relative’s substance use’, Manchester Metropolitan University, endoflifecaresubstanceuse.com, available online from: https://​ endoflifecaresubstanceuse.com/​4-​families-​perspectives/​

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Yarwood, G., Wright, S., Templeton, L. and Galvani, S. (2018) ‘End of life care for people with alcohol and other drug problems: Qualitative analysis of primary interviews with family members, friends and carers’, Manchester Metropolitan University, endoflifecaresubstanceuse.com, available online from: https://​endoflifecaresubstanceuse.com/​4-​families-​perspectives/​

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Conclusion: Critical reflections, theories and key messages Sarah Galvani, Alastair Roy and Amanda Clayson

A key strength of this edited collection is the diversity of experiences it reflects, both in the ways in which it explores how recovery has been adopted in seven different nations, as well as the ways in which recovery is experienced by a range of different groups of people. Many of the chapters are based on empirical research, and all make reference to the voices of people with lived experience. In this concluding section, we seek to consider some of the important elements of learning we, as editors, see emerging from it, as well as to identify issues and questions we see as requiring more attention in future research and writing on the subject. In the introduction we began by looking back at how the idea of recovery has become a central facet of policy and practice in many different national contexts in recent years. In this concluding chapter we reflect on the idea of long-​term recovery, considering whether this collection of work manages to register anything distinctive about the ways in which this term is important and useful, and if using the language of ‘long term’ offers any new and important ways of considering and conceiving of recovery. Further, it draws out key messages from and for people with lived experience who were partners and/​or participants in the empirical research the chapters are based on, as well as presenting implications for policy, practice and future research.

Looking back and looking forward The fact that the language and idea of recovery has been adopted in so many different national contexts in the same era demonstrates just how persuasive and plausible the idea of recovery has proved to be as a seemingly new direction for substance-​use policy and practice. The concept of recovery provides a compelling, positive and forward-​looking approach to a future not negatively impacted by the excesses of substance use. Our critique and debate of it is not intended to dampen this positivity, we merely seek to unpack a concept that has been co-​opted by so many different people and organisations, and to attempt to define what a long-​term version of it is. In the introduction, we recalled that two decades ago it was commonplace 183

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to hear practitioners and policymakers talking about ‘addiction’ as a ‘chronic relapsing condition’. In the contemporary landscape of policy and practice, many people see this language as problematic now, partly because addiction tends to be associated with either a medical model or the 12-​step programme of the Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) fellowships, and also perhaps because the idea of a chronic relapsing condition tends to be seen as too pessimistic and anachronous an approach to recovery. However, we feel that one benefit of looking back at the ideas and language used in the past is that it can help us to reconsider the broader values and frames of reference that informed policy and practice at the time and the extent to which changes in language have been accompanied by changes in values and frames of reference. It also helps us look to the future and to consider what might be helpful in those ideas and that language for moving forward with our support for people seeking long-​term recovery. For our purposes, despite accepting that the language of a chronic relapsing condition is uncomfortable and possibly stigmatising, one obvious value of it is that the word ‘chronic’ usefully conveys an acceptance that substance-​use problems and the impact of them often have the character of ‘continuing or occurring again and again for a long time’ (Merriam-​Webster’s definition). We feel that this is useful because many of the stories in this collection bear witness to enduring experiences that often accompany the lives of those with substance-​use issues, many of which persist as people seek recovery. This is not to say people are desperately unhappy and soul-​searching but simply that lived experience illustrates the ongoing strategies individuals adopt in order to keep moving forward and not back. We argue that understanding the ways in which the lives of those with substance-​use issues are shaped and influenced by societal structures, social relations and dynamics of power and inequality is vital for generating forms of new understanding. This is required in order to support the development of inclusive, recovery-​oriented policies and practices (Rose, 2014; Tyler, 2020) that have an informed and nuanced understanding of recovery at their core. We argue that the ecological lens that necessitates consideration of structures, systems and power relations has been understated in the dominant discourse about recovery from substance use, and that there has been an overemphasis on the individual and their recovery resources, often discussed in terms of recovery capital (Granfield and Cloud, 2001; Best and Laudet, 2010). It is our view that this excessive focus on the individual and their substance use operates at the expense of addressing the wider negative external influences, systems and structures which affect individuals in recovery, as well as their families, friends and carers (Rose, 2014). Furthermore, while we highlight the overemphasis to date on the individual, we do not suggest that they play no role. There must be a more nuanced and intelligent understanding of the interplay and 184

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relationships between individuals, families, systems and structures, and their varied priorities in supporting long-​term recovery. Most substance-​use services now claim they ‘do’ recovery, although many critics continue to question the extent to which changes in language have made a recognisable and sustained positive difference to those with substance-​ use issues (Boyt, 2013). It is also clear that the language of recovery has been adopted and adapted by many people in policy and practice settings and has moved away from its peer-​led origins (Sinclair et al, 2013). One critical thought is that implementing significant change in substance-​use policy requires the development of a new storyline and with it the development of a new language for people with drug and alcohol problems that is less explicitly stigmatising (Roy and Buchanan, 2016). It also requires a new way of treating people; one that counters the individual blame discourse that is so prevalent in policy debates about people using substances (Lloyd, 2013; Watson, 2013; Monaghan and Wincup, 2013). Despite the multifaceted meaning of recovery and the difficulty of distilling its ‘essence’, it is clear that the development of recovery policies, practices and discourses has resulted in some specific effects (Woods et al, 2019); or to put it another way, service users and practitioners have certainly felt the difference (Spandler, 2016). Hence, we argue that there needs to be a storyline and language that embraces systemic, structural, community-​and relationship-​based support for people using substances and their family, friends and carers over the short, medium and longer term.

Recovery as long term Many of the chapters in this collection consider the ways in which recovery is most usefully conceived as open ended and non-​linear (Roy and Manley, 2017). We see in the stories of people with lived experience of recovery that structural and systemic factors, as well as the severe and enduring effects of stigma, can severely inhibit the likelihood that many people using substances will ever feel that they are full and respected members of society (Lloyd, 2013; Tyler, 2020). The reality is that for many people using substances, the pursuit of recovery, short or long term, can often involve engaging with the depressing realisation of just how marginal and excluded they are (Roy, 2016). Even at the very end of their lives, people with substance-​use issues in palliative care settings can feel the need to guard against stigma by considering how much to reveal about their past substance use (Wright and Yarwood, Chapter 13 in this volume). In the best cases, it is the recognition of this continued striving, as well as of the social injustices people using substances face, that fuels the commitment of practitioners to work in new ways that conceive of people using substances as human subjects facing complex and enduring 185

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issues (Klein and Hill, Chapter 5 in this volume). This demonstrates the ways in which substance-​use practitioners are often working with people in situations of extreme uncertainty, and hence that there is a need to guard against a service-​commissioning climate driven by notions of ‘fixing’ people’s substance use and which is fixated on the measurement of defined outcomes as clear indicators of success. We feel that what is useful about the idea of long-​term recovery is that it captures the idea of recovery being a lifelong undertaking for many people addressing their substance use. It also highlights the need for a continuing ethic of care to be at the centre of recovery policy and practice. Indeed, Wright and Yarwood (Chapter 13 in this volume) make a call to action for future policy and practice ‘to be designed in consideration of the winding trajectories of long-​term recovery’, something we wholeheartedly endorse. The collection includes many stories of substance users at different points in their lives, and taken together these offer a stark reminder that stigma is a burden that many people using substances must endure and that it all too often becomes internalised (Taylor, 1995, p 225). The problem is that stigma and shame are experienced individually, including by family members, and living with stigma can have important implications for a person’s capacity to exhibit self-​care on a day-​to-​day basis (Roy and Christensen, Chapter 3 in this volume). As Frost and Hoggett (2008) suggest: Because [it] is internalised within the individual’s own meaning system shame is experienced privately, personally and as all embracing. The individual lives the sense that they no longer fit the group –​they fall short of and are excluded from this possibility. Shame, then, equals serious identity damage with ramifications for various aspects of self-​ hood.’ (Frost and Hoggett, 2008, p 445) In this way, we argue that holding on to the recognition that long-​term recovery is a process of change in which a person is always moving is also an important way of arguing that policy and practice should be framed by an ethic of care. Accepting a view that recovery is open ended might also encourage those using substances to be kind to themselves when setbacks arise and to focus on the skills of adaptation rather than the single-​minded acquisition of forms of recovery capital or the reaching of a particular definable destination (abstinence from substance use, for example). White (2020) advocates an approach to recovery based on the ‘ecology of recovery’, which explores how one’s physical, social and cultural environments support or preclude the resolution of drug and alcohol problems. Ecological models such as this move away from solely individualistic explanations of phenomena like recovery, encouraging us to consider the relationships

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between the individual and the family, social networks, institutions, community and social systems, as well as the political arena and issues like public opinion. It posits that harm and risk reduction and recovery are inter-​sectoral and multilevel activities predicated on individual, community, policy and environmental change. An ecological approach helps us to understand how the dynamic relationships between the individual, family and community systems and the socio-​political arenas will impact people in longer-​term recovery in different ways at different times as the relationships between different elements of the ecology change. White (2009) argues that the prevailing intra-​personal focus of many care models neglects these ‘system-​level’ processes and the ‘larger physical and relational worlds in which individual recovery efforts succeed or fail’ (White 2009, p 146). This helps us to understand the interconnectedness of the societal response to substance use in different national contexts and on different levels.

An ecological model for long-​term recovery Bronfenbrenner’s (1977, 1986) original theory of ecological systems (applied to social work practice with a child at its centre) is fitting for discussions about recovery and long-​term recovery given it specifies the levels or systems that impact upon an individual’s experience as well as their interconnectedness. Here we have applied it to a person with lived experience of substance use in order to consider the impact of such systemic analysis on their experience of recovery in the long term: Chronosystem (major life transitions and changes over time) This might involve transitions such as the deaths of close family or friends, changes in housing status, getting married or having children. The various joys and stresses of major life transitions can impact upon a person’s ability to cope. Where substance use is an established way of coping, even in the long term, it can hover as an ever-​present coping strategy. Macrosystem (political and cultural influences) This might include changes in public opinion or government policy; for example, a government imposing more stringent and punitive policies on substance use that reduce a person’s liberties and freedom. For an individual in long-​term recovery, changes in the macrosystem towards more punitive policies may make it more difficult for them to move on with their lives; for example, because they have to declare their history of substance use repeatedly to a range of authorities as they seek work or housing.

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Exosystem (indirect influences on the individual; for example, the neighbourhood, mass media) Changes in the exosystem might include negative media campaigns about substance-use issues; for example, about a safe-​injecting site operating in a specific area, or stories about a child who accessed her parent’s methadone and became seriously ill. They might also include the actions or opinions of local business owners and local residents in neighbourhoods with high rates of crime who accuse individuals who use substances when crimes occur. Changes in the exosystem can create an environment that is either accepting or hostile. Even for someone in longer-​term recovery, changes in the exosystem can trigger feelings of stigma and self-​criticism, which can have a negative effect on their sense of self. Mesosystem (interactions between the individual’s microsystems) The mesosystem’s influences relate to the relationships and interactions of a given person’s microsystems (defined in the following paragraph) with each other rather than directly with the individual themselves. Such interactions, however, do have a direct impact on the individual. Changes in the mesosystem might include a person’s sibling and parents coming into conflict with each other, or their workplace sponsoring an after-​school club at their child’s school. Such changes can have positive or negative impacts on a person’s long-​term recovery, particularly if they place additional emotional and practical demands on them. Microsystem (direct contact with a person; for example siblings, parents, peers, employers) A person’s microsystem comprises the individuals with whom they have direct contact. Longer-​term recovery is known to be positively and negatively impacted by the quality of the relationships a given person has with people around them. For example, having a partner who is also in recovery may be helpful, but equally, if the partner relapses, this can put stress on the recovery of the remaining partner, who may be in close proximity to substances for the first time in months or years. Similarly, an employer going bankrupt can place tremendous economic stress on an individual and their family. This ecological approach is especially useful in exploring how the complex changes involved in seeking recovery and long-​term recovery are affected by a wide range of issues including access to public services, the characteristics of public opinion, levels of social support and personal economic circumstances, all of which affect people’s social situations, feelings of inclusion/​exclusion and coping strategies. In Figure 14.1, we offer a conceptual model that 188

Conclusion Figure 14.1: An ecological model of long-​term recovery

Individual (microsystem)

Time & transitions (chronosystem) • Transitions & major life events • Journey across the life course • Historical events that impact on the present • Changing identities over time

• Social capital • Physical capital • Human capital • Cultural capital

Political and cultural (macrosystem) • Nature of policy focus and commissioning • Resources available for services • Level of austerity • How substance use is perceived Community (exosystem) • Community support • Peer networks available • Formal support accessible • Meaningful activities available, for example work, study, volunteering

Family (microsystem) • Social capital • Physical capital • Human capital • Cultural capital

Relationships btw micro systems (mesosystem) • Links between school and work • Relationships between siblings and parents • Links between faith group and community centre

combines existing notions of recovery capital (Cloud and Granfield, 2009) with an ecological systems model (Bronfenbrenner, 1977, 1986). The model privileges a second microsystems level representing the family unit in its own right rather than as an adjunct to the person using substances. This model embraces the notion that an individual’s long-​term recovery (including levels of recovery capital) is affected by changes in their immediate environment, their community and broader socio-​political and cultural-​ level factors across time and over which the individual has no influence. The model diverges from the original formulation of ecological systems theory in also treating the family as a microsystem in its own right, not just the individual. As chapters in this book have shown, longer-​term recovery applies to a range of individual family members and the family unit. By identifying the family as a specific microsystem, this model encourages policy and practice to consider the range of influences a given individual’s family can have that can help or hinder their recovery journey, and to identify the support they might need to maintain or improve their health and well-​being. 189

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With, for, about: addressing the complexities of the recovery knowledge base Many of the chapters in this book advance a view that recovery is inevitably framed by the broader set of structural and systemic issues which provide the context for individual lived experience. As discussed, these issues often remain unacknowledged in policy and practice, with the effect that the challenges faced by those with lived experience of substance use can be dismissed or minimised (Roy et al, 2020). This link to structural and systemic issues has also been taken up by critical voices in the mental health field who have raised questions about the possibilities of self-​determination among people with lived experience, asking whether they can be recognised as experts, set the agenda and decide which kinds of stories need to be aired and heard in understanding issues like recovery (Beresford, 2013). Klein and Hill (Chapter 5 in this volume) argue that: In the battle against substance misuse, the scientific understanding of LTR [long-​term recovery] seems to have become disconnected from actual LTR experiences. To restore this connection, and thereby advance our scientific understanding, we must give up objectifying LTR and instead become curious about the perspectives of people with lived experiences. Livingston (Chapter 2 in this volume) provides a critical engagement with the evidence base for recovery which explores how recent shifts in methodological approaches to research on alcohol and other drug use have supported the greater involvement of people with lived experience as active partners. This involvement is evident in a number of the empirical studies in this collection, for example, Svendsen’s study (Chapter 4), which employed peer researchers to conduct data collection. However, the experiences of people who have changed their use of substances, or lived with someone else’s substance use, are fundamental to all of the chapters. In attending carefully to what we have learned from these voices, we have drawn six key messages which we argue have implications for policy, practice and for developing a broader climate which cares about people with lived experience of substance use. The first is that individuals in the microsystem, be they family members or the person who has used/​or uses substances, can live in the shadow of their experiences for a long time if not the rest of their lives. This is partly because societal attitudes often portray people using substances as being responsible for the impact on their lives (Lloyd, 2013). Such prevailing views can be unforgiving, mistrusting and stigmatising of those who use, or have used, substances, and by association, of their families. Seeking to understand 190

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these experiences raises questions about, and casts doubt upon, the ability of current systems of support to truly address the needs of people with lived experience of problematic substance use. As set out earlier in this chapter, we argue for an approach to substance-​use policy and practice defined by an ethic of care. This should be one that is capable of attending to the inevitable shifts and changes which accompany lives in long-​term recovery and which is directly affected by positive and negative changes in the chronosystem, the exosystem, the macrosystem, mesosystem and the two microsystems. The second is that short-​or long-​term changes to substance-​use behaviours do not always present themselves as desirable or realistic proposals to people using substances, at least in the short term; and abstinence is by no means the panacea that some perceive it to be. Changes to substance-use behaviours can result in a range of benefits and losses; these losses can include the rituals and pleasures which accompany the purchase and use of drugs, including alcohol, and which can occupy so much of people’s time, but also, for some, the loss of a non-​judgemental peer group and the loss of an important coping strategy for experiences of trauma and abuse. Third, the impact of such experiences on people’s relationships and ability to trust in the long term is inadequately addressed in existing health and social care systems. For many people using substances, their relationship to their drug of choice is often the most intimate relationship in their life; one which draws on all their ‘complex, messy dysfunctional realities as human beings’ (Fraser, 2010). The idea that dealing with these issues is simply a matter of self-​disclosure is naïve, but health and social care practice often expects people to tell all, and tell it repeatedly, to well-​meaning strangers who offer support yet who are often driven by systemic pressures to get results in a set period of time in order to measure success. Building relationships with people whose trust and love has been abused takes far longer, and yet target-​driven systems fail to understand the fundamental importance of relationship-​based practice and the importance of co-​created motivation in keeping people engaged in services (Mahmood, 2021). The relationships developed between researchers, including peer researchers, and the research participants in Svendsen’s longitudinal study (Chapter 4 in this volume) speak to the effort it takes to build relationships, and demonstrate that these are highly valued once they are established. We argue that building models of practice which value the quality and consistency of relationships over external targets is an important facet of recovery-​based practice. Fourth, people with lived experience need support in exploring their expectations and understanding what is ‘normal’ in recovery, as well as encouragement to value and trust their own subjective sense of what is normal. Expectations about a range of relationships, work and day-​to-​day existence outside of substance use need to be voiced, heard and discussed empathetically. Skårner and Svensson’s chapter on sexuality (Chapter 6 in 191

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this volume) provides a powerful insight into the complexity of ‘normal’ expectations around sexual arousal and experiences, for example. This challenges any formal and informal supporters of the person using substances to consider how they approach such subjects with sensitivity and care. Fifth, the voices and experiences reflected in this book demonstrate the interlinking and intersectional nature of people’s experiences of long-​term recovery. The emotional and psychological hardship is conjoined with financial and physical hardships. Thus, the days of delivering one-​to-​one interventions focussing only on a person’s substance use should, by now, have been confined to history. While many services now offer what is called a ‘holistic’ or ‘recovery-​focussed’ service, what this means in practice can vary significantly. Some people may have other priorities in their lives that need to be addressed prior to addressing their substance use. There is a far better chance of removing the ‘crutch’ that is substance use when these intersectional elements of people’s lives are identified, acknowledged, understood and addressed (De Kock and Pouille in Chapter 10, and Arendt in Chapter 12 in this volume). Finally, there is strong and consistent evidence that moving forward and moving on is possible and desirable for people negatively impacted by their own or someone else’s use of substances. While this book has highlighted many challenges of living with, and responding to, people seeking long-​ term recovery, it has also shown the incredible resilience, perseverance and strength of people who have changed or stopped their problematic use of substances, or who are living with the impact of a family member’s use of substances. Changes often happen in spite of truculence in the ongoing political and cultural climate in which stigmatising attitudes and distrust can still prevail. People’s achievements in such an environment and context cannot be understated. Laura’s incredible strength in Fox and Berg’s chapter (Chapter 7), and Anna’s and Maria’s resilience in Lindeman and Bruland Selseng’s chapter (Chapter 8) are just two examples within this collection.

Key messages In this final section, we take the accumulated learning from the book so far and set out some clear and simple messages for policy, practice, research and for people with lived experience. Messages for policy • People with lived experience (PWLE) should be central to the development of policy; they should be visible and respected actors in the process of policy development and review and recognised as capable of taking on different roles. Although the personal testimony of PWLE is 192

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one form of contribution, it should by no means be the only one. It needs to be considered with an awareness of critical literature which describes the co-​optation and consumption of stories of lived experience by the powerful (Costa et al, 2012). There is a significant need for change at the highest level of policy in order that it can demonstrate its understanding of the value that PWLE bring to policy development. Research and practice have moved further than policy development in the involvement of PWLE, although both areas still lack truly representative and sustainable models (Wilson, 2019). • Policymakers need to be bold enough to develop and implement a commissioning climate which resources and supports services defined by an ethic of care in which attending to the needs of individuals and the people closest to them in the longer term is the overall objective. It is cost ineffective to do otherwise and will contribute to repeated presentations and the revolving door of people repeatedly entering and exiting services, to a range of social and healthcare services. • It is important to recognise that recovery and harm minimisation are mutually compatible policy goals. Harm minimisation is an important tool in the toolkit and often the starting point for interventions. This needs to be reflected explicitly in policy alongside notions of recovery and in place of simplistic messages about abstinence. Not everyone is able to ‘recover’ in the short term, and for some, serious and advancing ill health mean that long-​term recovery is also not feasible. Abstinence-​based recovery is not a panacea for people with entrenched and long-​term complex problems who have found acceptance and some comforts in their substance-​using world. • It is vital to ensure that policy addresses the needs of close family members and friends who may be left with long-​term anxieties and social and healthcare needs as a result of their experiences with the person using substances. Caregiver support and information needs to be in place. Messages for practice • Substance-​use practice is defined by an ethic of care and should focus on good engagement, reducing harm and facilitating recovery over the long term. All social and healthcare practitioners need to understand the caution and distrust that people using substances may feel when approaching services and why this is valid. They also need to be aware of how such caution can present when people arrive to services, particularly as many people will have been through services before. Practitioners need to be aware that motivation is co-​created (Mahmood, 2021) and relationship-​based practice should be central to supporting people at any stage of their recovery, including in the longer term. 193

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• It is vital to ensure that practitioners are trained in a broad range of relevant skills, including harm minimisation and trauma-​informed approaches, and have highly developed communication skills. It is important to understand the long-​term trauma that can underpin some people’s substance​use and that this requires long-​term resolution. Substance-​specialist social and healthcare practitioners need to be helped to reflect on how to support people living with long-​term traumatic experiences. This extends to their joint working outside specialist arenas. • Staff should reinforce achievements and be open to ongoing concerns, understanding that people in long-​term recovery may still struggle with the changes they have made, their identity transitions and their substance-​free or substance-​reduced lives. • Practitioners need to be prepared, both emotionally and in terms of knowledge and skills to raise questions with people in long-​term recovery about friendships and intimate relationships. Practitioners also need to discuss concepts of ‘normality’ regarding both relationships and the person’s expectations of what a normal life might be. • Practice needs to be holistic in nature and identify the person’s range of needs and what they need to prioritise. Longer-​term changes require people to self-​manage their needs, and supporting people to do this will enable such change to happen. • Families of people using substances (past or present) will need support in their own right. As Chapters 5, 7, 8 and 9 in this book have shown, children, partners and wider family members will also need support for their own long-​term recovery, both for their own sake and also to minimise the risk of them passing on the negative effects of their relative’s substance-use experiences to others in the family. Sensitive but routine questioning of people about substance use within their families can offer some insight into the support they may need. Messages for research • There is a relative absence of research that privileges the meaningful involvement and voices of people with lived experience. Much research relates to treatment effectiveness, and a significant proportion still focusses on restrictive notions of measurement. More research that is designed with, by and for people with lived experience is needed to further our understanding of the lives of people following a period of time when their substance use was problematic and destructive, as well as the ways in which people with substance-​use issues experience treatment systems, policy stories and wider society. • There is a need for more research focussed on understanding the needs of family members in the long term, and particularly related to adult children 194

Conclusion

(Ólafsdóttir and Clayson, Chapter 9 in this volume). The impact of substance use on family members is understood, but more research is needed that seeks to understand its long-​term effects and how to intervene much earlier to arrest its long-​term impact. • There are few longitudinal qualitative studies and cohort studies that enable an in-​depth view of people’s lives and transitions within, outside and beyond service structures as they use, or change their use of, substances. The insights such studies can provide will enable a much clearer picture of the type of support that can be provided by social and healthcare practitioners and how policy needs to respond. In social care, we need to move beyond identifying the substance use and referring on to treatment. Such research will provide insight into what support is needed at different times in people’s lives, and will point to who might best provide it.

Conclusion As we said at the beginning of the book, we see the diversity of contributions to it as a key strength of this text. Throughout this concluding chapter we demonstrate important connections between the individual chapters and a wider discussion on long-​term recovery. However, we also emphasise that each chapter tells its own story and each contains its own implications for policy, practice and future research, both substantively and methodologically. Some of the chapters help us to explore the implications of specific national contexts, others tell us about the issues facing specific groups of people who use substances, and a small number offer more focussed discussions of recovery experiences, policy, practice or research. In one way, a natural end point to such a rich and varied collection would be to argue that long-​term recovery is complicated and context dependent. While this is inevitably true, we have also attempted to consider what the work in this collection can tell us about the usefulness of the concept of long-​term recovery when all the chapters are looked at together. However, this final chapter also reflects our own working process as an editorial team, and emerges from the conversations we have had with authors and with each other over the two years we have been working on this project. The model and the key messages are our attempt to articulate what we see as the fundamental issues that influence long-​term recovery. We do not view the model as complete, or indeed the collection. Nonetheless, we argue that what is useful about the concept of long-​term recovery is that it captures the idea of a lifelong undertaking for many people living with substance​use and identifies the need for an ethic of care to be at the core of recovery policy, practice and, indeed, research. The value of the ecological model is that it emphasises the need to recognise that long-​term recovery is a process of change in which a 195

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person is always moving, and hence that is it most usefully conceived of as open ended and non-​linear (Manley and Roy, 2017). We argue that there is strong and consistent evidence that moving forward and moving on is possible and desirable for people negatively impacted by their own or someone else’s use of substances. We also argue that policy, practice and wider climates of influence can make a significant difference to people’s journeys in recovery, and that we must push for improvement of these external influences as well as of our support for individuals, their families, friends and carers. References Beresford, P. (2013) Introductory comments (unpublished) at Recovery and Social Justice: Transforming Mental Health at Individual, Service and Societal Levels, 9 October, Preston. Best, D. and Laudet, A. (2010) The Potential of Recovery Capital, London: Royal Society for the Arts, available online from: https://w ​ ww.thersa.org/r​ eports/​ the-​potential-​of-​recovery-​capital Boyt, A. (2013) ‘The “R” word’, Drink and Drugs News, 3 November, available online from: https://w ​ ww.drinkanddrugsnews.com/​the-​r-​word/​ Bronfenbrenner, U. (1977) ‘Toward an experimental ecology of human development’, American Psychologist, 32(7): 513–​31, available online from: http:// ​ m aft.dept.uncg.edu/ ​ h df/ ​ f acultystaff/ ​ Tudge/​ Bronfenbrenner%201977.pdf Bronfenbrenner, U. (1986) ‘Ecology of the family as a context for human development: Research perspectives’, Developmental Psychology, 22(6): 723–​42. Cloud, W., and Granfield, W. (2009) ‘Conceptualizing recovery capital: Expansion of a theoretical construct’, Substance Use and Misuse, 42(12/​13), 1971–​86. Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D. and Church, K. (2012) ‘Recovering our stories: A small act of resistance’, Studies in Social Justice, 6(1): 85–​101. Fraser, G. (2010) ‘Thought for the day’, BBC Radio 4, 31 December . Frost, L. and Hoggett, P. (2008) ‘Social suffering and human agency’, Critical Social Policy, 28(4): 438–​60. Granfield, R. and Cloud, W. (2001) ‘Social context and “natural recovery”: The role of social capital in the resolution of drug-​associated problems’, Substance Use and Misuse, 36: 1543–​70. Lloyd, C. (2013) ‘The stigmatization of problem drug users: A narrative literature review’, Drugs: Education, Prevention and Policy, 20(2): 85–​95. Mahmood, F. (2021) ‘Exploring reasons for clients’ non-​attendance at appointments within a community-​based alcohol service: Clients’ and practitioners’ perspectives’, Doctoral Thesis (PhD), Manchester Metropolitan University, Manchester 196

Conclusion

Monaghan, M. and Wincup, E. (2013) ‘Work and the journey to recovery: Exploring the implications of welfare reform for methadone maintenance clients’, International Journal of Drug Policy, 24(6): e81–​e86. Rose, D. (2014) ‘The mainstreaming of recovery’, Journal of Mental Health, 23(5): 217–​18. Roy, A. (2016) ‘Learning on the move: Exploring work with vulnerable young men through the lens of movement’, Applied Mobilities, 1(2): 207–​18. Roy, A. and Buchanan, J. (2016) ‘The paradoxes of recovery policy’, Social Policy and Administration, 50(3): 398–​413. Roy, A. and Manley, J. (2017) ‘Recovery and movement: Allegory and “journey” as a means of exploring recovery from substance misuse’, Journal of Social Work Practice, 31(2): 191–​204. Roy, A., Ravetz, A. and Prest, M. (2020) ‘Unsettling narrative(s): Film making as an anthropological lens on an artist-​led project exploring LGBT+ recovery from substance use’, Anthropological Notebooks, 26(1): 26–​34. Sinclair, A., Maunders, R. and Treasure, M. (2013) ‘Seeing purple’, Drink and Drugs News, 2 December, available online from: https://​www. drinkanddrugsnews.com/​seeing-​purple/​ Spandler, H. (2016) ‘From psychiatric abuse to psychiatric neglect?’ Asylum magazine, 23(2): 7–​8. Taylor, C. (1995) Philosophical Arguments. Cambridge, MA: Harvard University Press. Tyler, I. (2020) Stigma: The Machinery of Inequality, Croydon: Zed Books. Watson, J. (2013) ‘The good, the bad and the vague: Assessing emerging Conservative drug policy’, Critical Social Policy, 33(2): 285–​304. White, W. (2009) ‘The mobilization of community resources to support long-​term addiction recovery’, Journal of Substance Abuse Treatment, 36: 146–​58. White, W. (2020) ‘The ecology of recovery revisited’, WilliamWhitePapers. com, 29 October, available online from: http://​www.williamwhitepapers. com/​blog/​2020/​10/​the-​ecology-​of-​recovery-​revisited.html Wilson, N. (2019) ‘Where have all the activists gone?’ Talking Drugs, 1 August, available online from: https:// ​ w ww.talkingdrugs.org/​ where-​have-​all-​the-​activists-​gone Woods, A., Hart, A. and Spandler, H. (2019) ‘The recovery narrative: Politics and possibilities of a genre’, Culture, Medicine and Psychiatry, doi:10.1007/​ s11013-​019-​09623-​y

197

Index Note: References to figures appear in italic type; those in bold type refer to tables. 12-​step programmes  4, 66, 67, 76, 119, 133, 148, 154, 184 2017 Drug Strategy, The (UK)  6, 89

A AA (Alcoholics Anonymous)  4, 6, 20, 34, 134, 146, 184 Iceland  110, 114–​15, 116, 119 abstinence  4, 6, 7, 16, 44, 45, 47, 80, 81, 159–​60, 178, 193 abuse  see trauma adolescent development, care leavers study  125, 144–​5, 146, 146 agentic/​self-​determination stage  144, 145, 146, 150–​2 passive/​staying safe stage  144, 145, 146, 147–​9 role of communities  153–​5 transitional/​exploring stage  144, 145, 146, 149–​50 adult children, impact of parental alcohol use on in Iceland  66, 108–​9, 111–​12, 194–​5 discussion and conclusion  117–​20 Icelandic context  109–​11 recovery capital  108–​9, 112–​15, 113, 119 social identity  108–​9, 115–​17 alcohol, minimum unit pricing policies  22–​3 alcohol use  end-​of-​life study vignettes  172–​3, 174–​5 see also adult children, impact of parental alcohol use on in Iceland; long-​term recovery; recovery; substance use Alcoholics Anonymous (AA)  see AA (Alcoholics Anonymous) Alters-​CM3 project, OOU (older opioid users), Germany  157–​8, 160–​2, 163, 165–​7 case management  162–​5, 163 amphetamines  67, 68 and sex  69–​70, 72–​3 Anderson, J.  32 Ashford, R.D.  53–​4, 60–​1, 118–​19 Assistance for alcoholics and the prevention of drug abuse Act no. 40/​1991, Iceland  110 austerity  5, 31

B Ball, G.  18 Beckwith, M.  20 Beresford, P.  5, 20 Berg, K.  87 Best, D.  17, 18, 110–​11, 115, 116 Betty Ford Institute Consensus Panel  8, 81 Biernacki, P.  75 biographical methods  see lived experience; recovery stories Bjornestad, J.  43, 46, 47 Blodgett, J.C.  43 Bowen, M.  116 Bradbury, Hilary  21 Brand, Russell  24 Bronfenbrenner, U.  187 Brown, A.M.  53–​4, 60–​1 Buchanan, J.  5, 24, 31

C cannabis use, Norway  40 case management, Alters-​CM3 project, OOU (older opioid users), Germany  161, 162–​5, 163 Catholic University of Applied Sciences, Cologne  161 Centre for Alcohol and Drug Research (KORFOR), Stavanger University Hospital  43 Centre for Social Justice (CSJ)  30 change processes in long-​term recovery, Norwegian Stayer study  1, 40, 43–​4, 48–​9, 191 background and context  40–​1 clinical and social recovery  45–​7 implications for treatment services and future research  47–​8 nature of long-​term recovery  41–​2 neurocognitive functions and important life aspects  44–​5 policy and treatment services  41 recovery process research  42–​3 change, theories of  22 ‘chronic relapsing condition,’ substance use as  9, 184 chronosystems  187, 191 close relationships and recovery  46, 93–​5

198

Index see also families; women partners of people using substances, Norway study Cloud, W.  60 cocaine use, Norway  40 cohort studies  20 commitment stories, women partners of people using substances in Norway study  96, 98–​100 communitas  153–​5 community capital  community recovery capital  112, 113, 114–​15 MEM (migrants and ethnic minority) substance users  133–​4, 135–​6 contribution analysis  22–​3 Costa, L.  10 Côté, J.  145 Covington, S.  88 Cox, N.  112, 116 Coy, A.L.  17 crime reduction policies  5 Cross, T.L.  129 CSJ (Centre for Social Justice)  30 cultural capital  112 cultural competence framework  125, 128–​9, 129, 135 nature and origin of concept  129–​30 questioning of  130–​1 rationale for  130 unquestioned issues in  131–​2 ‘cultural consultation procedures’  130 cultural narratives  103–​4 ‘cultural safety’  129 cultural scripts  69 see also sexual scripts

D Davidson, G.  20 Davidson, L.  5 Dennis, M.L.  9 developmental theory  see adolescent development, care leavers study; identity DiClemente, C.  9 domestic abuse  see trauma Doty-​Sweetnam, K.  134, 135 Drug and Alcohol Recovery Outcomes Framework (Drug and Alcohol Ireland)  22 Drug Misuse and Dependence: UK Guidelines on Clinical Management (DHSC)  89 drug use  end-​of-​life study vignettes  174, 175–​6 perceived benefits of  46–​7 see also long-​term recovery; recovery; substance use

Drugs: Protecting Families and Communities: the 2008 Drug Strategy (H.M. Government)  30 Duncan Smith, Iain  30 Dying Matters programme  179

E Eastwood, B.  160 eating disorders  85 ecological model of long-​term recovery  186–​9, 189, 195–​6 ecstasy use, Norway  40 EMCDDA (European Monitoring Centre for Drugs and Drug Addiction)  53, 158 Ending Violence Against Women and Girls Strategy 2016 (Home Office)  89 end-​of-​life care for substance users  10, 125–​6, 170–​1, 180, 185 challenges to recovery ideas  176–​9 study outline  171–​2 vignettes  172–​6 England, provider and user perspectives on long-​term recovery  1–​2, 53, 62–​3 clinical case examples  55–​9 clinical reflections  59 context  53–​5 discussion  60–​2, 61 epistemic injustice  1, 20, 23 Erikson, Erik  144, 145 ethic of care  3, 9, 186, 191, 193, 195 ethnic boundary making  136–​8 ethnic minority substance users  see MEM (migrants and ethnic minority) substance users European Drug Report 2019: Trends and Development (EMCDDA)  53 European Monitoring Centre for Drugs and Drug Addiction (EMCDDA)  53, 158 European Social Work Research Association, SIG (special interest group) in substance use  11 evidence-​based practice  131 exosystems  188, 191

F families  end-​of-​life care  178, 179 familial recovery capital  113, 114 family relationships, and recovery  93–​5, 116–​17 as a microsystem  189 and policy  193 and practice  194 and research  194–​5 see also adult children, impact of parental alcohol use on in Iceland; women

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Long-​Term Recovery from Substance Use partners of people using substances, Norway study FIDMD (Federal Institute for Drugs and Medical Devices), Germany  157 Fisher, J.  85 Fletcher, K.  95 Fomiatti, R.  42 Frank, A.W.  96, 104 Freire, Paulo  21 Frost, L.  186 Fuchs Ebaugh, H.R.  71, 73

G Gagnon, J.H.  68–​9 Galvani, S.  171 German SubCare study  160 Global Drugs Survey  18 Gossop, M.  3, 20 Granfield, R.  60

H Hajer, M.  29 harm reduction policies  4, 5, 6, 9, 193 Hennessey, E.A.  19 Herman, J.  80–​1, 86 heroin  and sex  71 Sweden  67, 68 Hodgson, L.  19, 22 Hoggett, P.  186 Hohman, M.M.  134 Hopper, E.K.  88 Hospice UK  179 human capital  112

I Iceland, impact of parental alcohol use on adult children  66, 108–​9, 111–​12 discussion and conclusion  117–​20 Icelandic context  109–​11 recovery capital  108–​9, 112–​15, 113, 119 social identity  108–​9, 115–​17 identity  68 adolescent care leavers and adults in recovery studies  125, 143–​4, 146 agentic/​self-​determination stage  144, 145, 146, 150–​2 identity development theory  144–​5, 146 MEM (migrants and ethnic minority) substance users  135–​6, 137 passive/​staying safe stage  144, 145, 146, 147–​8 recovery reflection  152–​3 role of communities  153–​5 transitional/​exploring stage  144, 145, 146, 149–​50 end-​of-​life care  176

see also SIMOR (social-​identity model of recovery); social identity identity capital  143 inter-​personal scripts  69 see also sexual scripts intimate relationships  see sex, sexuality and intimate relationships; women partners of people using substances, Norway study intra-​personal capital  113 intrapsychic scripts  69 see also sexual scripts Ireland  Drug and Alcohol Recovery Outcomes Framework (Drug and Alcohol Ireland)  22

J Jetten, J.  115 Jung, Carl  4

K Kerr, M.E.  116 Keyes, K.  95 KORFOR (Centre for Alcohol and Drug Research), Stavanger University Hospital  43 KTP (knowledge transfer partnership)  31

L Lancashire, UK, recovery-​oriented service provision case study  1, 28, 31–​7 Larkin, M.  61 Laudet, A.  17 Laus, V.  134 Lewin, Kurt  21 LGBTQ+​ people  37 see also transgender people lived experience  see PWLE (people with lived experience) long-​term recovery  1, 8–​9, 185–​7, 195–​6 definition issues  65, 119 ecological model of  186–​9, 189, 195–​6 future research  61 need for paradigm shift in  60–​1, 61 provider and user perspectives on long-​ term recovery in England  1–​2, 53, 62–​3 clinical case examples  55–​9 clinical reflections  59 context  53–​5 discussion  60–​2, 61 see also change processes in long-​ term recovery, Norwegian Stayer study; measurement of long-​term recovery; recovery; recovery stories; sex, sexuality and intimate relationships; trauma

200

Index love stories, women partners of people using substances in Norway study  96, 97–​8 LTR  see long-​term recovery

M macrosystems  187, 191 Manchester Metropolitan University  171 Marcia, James  144–​5 Martinelli, T.F.  8 Matamonasa-​Bennett, A.  134 ‘maturation’ process  125 Mawson, E.  112, 113 McCarron, H.  133 McIntosh, J.  55 McKeganey, N.  55 MDMA use, Norway  40 measurement of long-​term recovery  1, 8, 15–​18, 23–​4 contributory approaches  22–​3 different research approaches  18–​20 participant-​led approaches  16, 20–​2 media, the  188 MEM (migrants and ethnic minority) substance users  125, 127–​8, 138 cultural competence framework  125, 128–​32, 129, 135, 136 ethnic boundary making  136–​8 prevalence studies  127–​8, 131–​2 recovery capital framework  125, 132–​6, 137–​8 structural and social resources  135–​8 mental health system  5, 190 recovery as a concept in  29 recovery stories  6, 10 mesosystems  188, 191 microsystems  188, 190–​1 migrants and ethnic minority (MEM) substance users  see MEM (migrants and ethnic minority) substance users MOCA (motivational case management)  161 see also case management, Alters-​ CM3 project, OOU (older opioid users), Germany model, ecological  186–​9, 189, 195–​6 Monaghan, M.  6 Morrissette, P.  134, 135 Muslim substance users  128

N NA (Narcotics Anonymous)  146, 184 National Institute for Health and Care Excellence (NICE)  170 National Treatment Agency for Substance Misuse (NTA)  4, 29, 30 National Treatment Agency for Substance Use  5, 15

National Treatment Outcome Research Study (NTORS)  20 Native American religious/​ cultural groups  6 Neale, J.  8, 19–​20, 23 Needham, C.  29 negative recovery capital  134–​5 neurocognitive functions  44–​5 NICE (National Institute for Health and Care Excellence)  170 normalisation stories, women partners of people using substances in Norway study  96, 101–​2 Norway, Stayer study  1, 40, 43–​4, 48–​9 background and context  40–​1 clinical and social recovery  45–​7 implications for treatment services and future research  47–​8 nature of long-​term recovery  41–​2 neurocognitive functions and important life aspects  44–​5 policy and treatment services  41 recovery process research  42–​3 Norway, women partners of people using substances study  65–​6, 93–​5 discussion and conclusions  103–​4 stories of commitment  96, 98–​100 stories of love  96, 97–​8 stories of normalization  96, 101–​2 stories of vulnerability  96, 100–​1 study overview  95–​6 NTA (National Treatment Agency for Substance Misuse)  4, 29, 30 NTORS (National Treatment Outcome Research Study)  20

O Ógáin, E.N.  19, 22 Ólafsdóttir, J.  95 older people  see end-​of-​life care for substance users; OOU (older opioid users) OOU (older opioid users), Germany  125, 157–​8 Alters-​CM3 project  157–​8, 160–​7, 163 mental health, physical health and well-​being  158–​9 opium substitution treatment (OST)  see OST (opium substitution treatment) Orford, J.  16, 18, 19, 20, 24 OST (opium substitution treatment)  67, 76, 160 see also OOU (older opioid users), Germany

P palliative care  10, 125–​6, 177–​9, 180, 185 definition  170 see also end-​of-​life care for substance users

201

Long-​Term Recovery from Substance Use PAR (participatory action research)  21 participant-​led approaches to measurement of long-​term recovery  16, 20–​2 personal capital  118 MEM (migrants and ethnic minority) substance users  132–​3, 135 personal recovery capital  112, 113, 113–​14 personal relationships  193, 194 end-​of-​life care  175, 178 see also families; sex, sexuality and intimate relationships personal testimony  see recovery stories physical capital  112, 118 Plant, Sadie  3–​4 policy  messages for  192–​3 recovery as a policy storyline  29–​31 practice  history and evolution of substance-​use treatment systems  4–​8 messages for  193–​4 recovery-​oriented support systems  118–​20 PREMOS (PREdictors, Moderators and Outcome of Substitution treatments) study, Germany  159, 160 prevalence studies, MEM (migrants and ethnic minority) substance users 127–​8, 131–​2 Prochaska, J.  9 Project MATCH  18–​19 Prussing, E.  133, 134 psychosocial interventions, OOU (older opioid users), Germany  158, 160–​7, 163 PWLE (people with lived experience)  clinical case examples of long-​term recovery in England  55–​9 end-​of-​life care vignettes  172–​6 identity change during recovery  147–​53 importance of in recovery knowledge base and policy  189–​93 participant-​led approaches to measurement of long-​term recovery  16, 20–​2 participation in research  62, 194–​5 and policy  30, 31 provider and user perspectives on long-​ term recovery in England  1–​2, 53 clinical case examples  55–​9 clinical reflections  59 context  53–​5 discussion  60–​2, 61 recovery-​oriented service provision case study, Lancashire, UK  1, 28, 31–​7 sex, sexuality and intimate relationships  67, 69–​77 and trauma  82–​8

see also adult children, impact of parental alcohol use on in Iceland; MEM (migrants and ethnic minority) substance users; recovery stories; sex, sexuality and intimate relationships; trauma; women partners of people using substances, Norway study

R racism  132 randomised controlled trials  16, 43 Reason, Peter  21 Recovering Our Voices Collective  6, 10 recovery  challenges of end-​of-​life care  176–​9 definitions and concepts  1, 7–​8, 16–​17, 81, 94, 110–​11, 143, 172, 183–​5 nature of  41–​2 overview and history of concept  1, 3–​8 as a policy storyline  29–​31 recovery process research  42–​3 time-​or phase-​related models  8–​9 see also long-​term recovery recovery capital  6–​7, 60, 143, 184, 189 impact of parental alcohol use on adult children in Iceland  108–​9, 112–​15, 113, 119 measurement of  19–​20, 23 MEM (migrants and ethnic minority) substance users  125, 132–​6, 137–​8 negative  134–​5 Recovery Science Research Collaborative (RSRC), US  7 recovery stories  6, 9–​11, 28 recovery-​oriented service provision case study, Lancashire, UK  1, 28, 31–​7 see also PWLE (people with lived experience); women partners of people using substances, Norway study recovery-​identity models  54, 55 recovery-​informed paradigm  60–​1, 61 recovery-​oriented support systems  118–​20 recovery-​oriented systems of care (ROSC)  54–​5, 118–​19 Reducing Demand, Restricting Supply, Building Recovery: Supporting People to Live a Drug Free Life (H.M. Government)  29 relapse  54 research  messages for  194–​5 participation of PWLE (people with lived experience) in  16, 20–​2, 62, 194–​5 research ethics  153 Ritter, A.  127–​8 Road to Recovery, The: A New approach to Tackling Scotland’ Drug Problem (Scottish Government)  15, 17

202

Index ‘role exit’ theory  71 ROSC (recovery-​oriented systems of care)  54–​5, 118–​19 Rose, Diane  23, 36, 37 Roy, A.  5, 24, 31 RSRC (Recovery Science Research Collaborative), US  7 Rustin, M.  28

S safety, and trauma  85–​6 SAMHSA/​CSAT (Substance Abuse and Mental Health Services Administration/​Center for Substance Abuse Treatment), US  8 SBCM (strength-​based case management)  161 see also case management, Alters-​ CM3 project, OOU (older opioid users), Germany Schwartz, S.  145 Scottish Government  15, 17 minimum unit pricing of alcohol  22–​3 self-​determination  116 self-​harm  83, 85 sex, sexuality and intimate relationships  65, 67–​9, 77–​8, 191–​2, 194 ‘one-​year rule’  76 sexual practice during drug use  69–​71 sexuality after leaving problematic drug use  71–​5 treatment and sexuality  76–​7 sexual scripts  68–​9, 71, 72, 77 sexual stigma  73–​5 SIMCM (social-​identity model of cessation maintenance)  55 Simon, W.  69 SIMOR (social-​identity model of recovery)  55 impact of parental alcohol use on adult children in Iceland  108–​9, 115–​17 Sinclair, J.  87 SMART (Self-​Management and Recovery Training) groups  146 social capital  60 MEM (migrants and ethnic minority) substance users  133, 135–​6 social identity  see also identity; SIMCM (social-​identity model of cessation maintenance); SIMOR (social-​identity model of recovery) social recovery capital  112, 113, 114 social relationships, and recovery  46 see also families; sex, sexuality and intimate relationships social support, and trauma  86–​7 social-​identity model of cessation maintenance (SIMCM)  55

social-​identity model of recovery (SIMOR)  see SIMOR (social-​ identity model of recovery) Stevens, A.  29 stigma  36–​7, 73, 134, 136–​7, 185, 186, 190–​1 end-​of-​life care  174, 175–​6, 177, 179, 180 and exosystems  188 and trauma  87 strength-​based case management (SBCM)  see SBCM (strength-​based case management) Substance Abuse and Mental Health Services Administration/​Center for Substance Abuse Treatment (SAMHSA/​CSAT), US  8 substance misuse  see England, provider and user perspectives on long-​term recovery; substance use Substance Treatment Reform (‘Rusreform’), Norway  41 substance use  as a ‘chronic relapsing condition’  9, 184 definition issues  94 see also long-​term recovery; PWLE (people with lived experience); recovery; recovery stories; substance misuse SUD (substance use disorder)  see adult children, impact of parental alcohol use on in Iceland support systems, recovery-​oriented  118–​20 ‘sustained control’  173 Sweden  sex, sexuality and intimate relationships study  65, 67–​9, 77–​8 sexual practice during drug use  69–​71 sexuality after leaving problematic drug use  71–​5 treatment and sexuality  76–​7

T taboo  136–​7 Templeton, L.  112 Torres, Carlos Alberto  21 ‘transcultural competence’  129–​30 transgender people, recovery-​oriented service provision case study, Lancashire, UK  1, 28, 31–​7 trauma  65, 80–​2, 89, 192 case study  82–​8 implications for practice and policy  88–​9 MEM (migrants and ethnic minority) substance users  132 professional support  87–​8 social support  86–​7 trust  191 Turner, V.  154 Tyler, I.  36–​7

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Van Der Kolk, B.  86, 87 Velleman, R.  112 Veseth, M.  46, 48, 93 violence and abuse  see trauma vulnerability stories, women partners of people using substances in Norway study  96, 100–​1

see also Lancashire, UK, recovery-​ oriented service provision case study Wardle, I.  15–​16, 30 Webb, L.  116 Weimand, B.M.  95 ‘Wellbeing Framework’, Prime Ministerial Committee, Iceland  109–​10 Welsh government, minimum unit pricing of alcohol  22–​3 White, William L.  7, 17–​18, 55, 118, 155, 186, 187 Whyte, William Foote  21 Wincup, E.  6 women  Ending Violence Against Women and Girls Strategy 2016 (Home Office)  89 partners of people using substances, Norway study  65–​6, 93–​5, 192 discussion and conclusions  103–​4 stories of commitment  96, 98–​100 stories of love  96, 97–​8 stories of normalization  96, 101–​2 stories of vulnerability  96, 100–​1 study overview  95–​6 and trauma  81, 85 case study  82–​8

W

Z

U UK  funding issues  5, 31 recovery definition issues  7, 8 substance misuse context  53–​5 substance-​use policy and treatment practices  4, 5–​6, 7, 9, 15–​16, 29–​31, 88–​9, 178–​80 UKATT (United Kingdom Alcohol Treatment Trial)  18–​19 UKDPC (UK Drug Policy Commission)  7, 8, 29–​30, 81, 85, 172 universalism  130–​1 University of Applied Sciences Koblenz  161

V

walking, as a research method  32

Zippel-​Schultz, B.  160

204

“This book will get you thinking. Drawing on research and experiences from different countries and different substances, it skilfully explores relationships, trauma and life stages presenting lived experiences of long-term recovery.” Hilda Loughran, Associate Professor of Social Work/Social Policy at University College Dublin “A particular strength of the book is the prominence it gives to the voices of experts by experience, either because their substance use has been problematic for them or because it has affected them as family members.” Jim Orford, University of Birmingham and King’s College London In this much-needed text, leading international experts explore crucial aspects of people’s experience of long-term recovery from substance use. Centred around the voices of people who use substances, the book examines the complex and continuing needs of people who have sought to change their use of substances, investigating the ways in which personal characteristics and social and systemic factors intersect to influence the lives of people in longterm recovery. With perspectives from Sweden, Norway, Germany, Belgium, Iceland and the United Kingdom, it also considers the role and needs of family members, and puts forward clear recommendations for improving future research, policy and practice. Sarah Galvani is Professor of Social Research and Substance Use at Manchester Metropolitan University. Alastair Roy is Professor of Social Research in the School of Social Work, Care and Community at the University of Central Lancashire. Amanda Clayson is the founder of VoiceBox Inc. and a community research partner with Manchester Metropolitan University.

ISBN 978-1-4473-5817-6

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