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FEDERAL RESEARCH PROGRAMME ON DRUGS BENZONET Perception, habitual use and cessation of BENZOdiazepines: a multi-method NETnography MELISSA CEUTERICK (University Ghent) THIERRY CHRISTIAENS (University Ghent) HANNE CREUPELANDT (University Ghent) PIET BRACKE (University Ghent) Project DR/02/81 – BENZONET BENZONET Perception, habitual use and cessation of BENZOdiazepines: a multi-method NETnography Contract - DR/02/81 FINAL REPORT PROMOTORS: PIET BRACKE (University Ghent, Health and Demographic Research) THIERRY CHRISTIAENS (University Ghent, Heymans Institute for Pharmacology) HANNE CREUPELANDT (University Ghent, Heymans Institute for Pharmacology) AUTHOR(S): MELISSA CEUTERICK (University Ghent, Health and Demographic Research) Federal Research Programme on Drugs 2 Project DR/02/81 – BENZONET Published in 2021 by the Belgian Science Policy Office (BELSPO) WTCIII Simon Bolivarlaan 30 Boulevard Simon Bolivar 30 B-1000 Brussels Belgium Tel: +32 (0)2 238 34 11 - Fax: +32 (0)2 230 59 12 http://www.belspo.be http://www.belspo.be/drugs Contact person: Aziz Naji Tel: +32 (0)2 238 36 46 Neither the Belgian Science Policy Office nor any person acting on behalf of the Belgian Science Policy Office is responsible for the use which might be made of the following information. The authors are responsible for the content. 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 indicating the reference : Ceuterick M, Christiaens T, Creupelandt H, Bracke P. Perception, habitual use and cessation of BENZOdiazepines: a multi-method NETnography. Final Report. Brussels : Belgian Science Policy Office 2021 – 104 p. (Federal Research Programme on Drugs) Federal Research Programme on Drugs 3 Project DR/02/81 – BENZONET TABLE OF CONTENTS LIST OF FIGURES 6 LIST OF TABLES 6 ACKNOWLEDGMENTS AND LIST OF MEMBERS OF THE FOLLOW UP COMMITTEE 7 LIST OF ABBREVIATIONS 8 1. INTRODUCTION 9 2. BENZONET 10 2.1. AIMS AND RESEARCH QUESTIONS 10 2.2. OVERVIEW - WORK PACKAGES AND TIMELINE 10 2.3. OVERVIEW OF THIS REPORT 11 3. STATE OF THE ART 12 3.1. BENZODIAZEPINES AND Z-DRUGS USE IN BELGIUM: SOME FIGURES 12 3.2. COVID-19, SLEEP AND THE USE OF MEDICATION 12 3.3. WHAT DO WE KNOW ABOUT THE USERS’ PERSPECTIVES IN BELGIUM SO FAR? 13 3.4. BELGIAN POLICY INITIATIVES 14 4. CASE STUDY 1: ONLINE TALK ABOUT SLEEPING MEDICATION IN A FORUM FOR OLDER ADULTS 15 4.1. INTRODUCTION AND BACKGROUND 15 4.2. METHODOLOGY 16 4.2.1. ETHICS 16 4.2.2. ONLINE DATA COLLECTION 16 4.2.3. DESCRIPTION OF DATASET 16 4.2.4. DATA ANALYSIS 17 4.2.4.1. THEORETICAL FRAMEWORK 17 4.2.4.2. ANALYTICAL PROCEDURE 17 4.3. RESULTS 18 4.3.1. RISK AND ADDICTION REPERTOIRE 19 4.3.2. ALTERNATIVE PATHWAYS REPERTOIRE 19 4.3.3. EMOTIONALISATION REPERTOIRE 21 4.3.4. RATIONALISATION REPERTOIRE 21 4.3.5. CESSATION REPERTOIRE 23 4.3.6. COMBINING REPERTOIRES 23 4.4. DISCUSSION 24 4.5. CONCLUSION 26 5. CASE STUDY 2: THE IMPORTANCE OF PEER SUPPORT DURING CESSATION 27 5.1. INTRODUCTION 27 5.2. METHODOLOGICAL FRAMEWORK 28 5.2.1. CORPUS-BASED DISCOURSE ANALYSIS 28 5.2.2. DATA AND CONTEXT 28 5.2.3. DATA ANALYSIS 29 5.3. RESULTS 31 5.3.1. THE LIVED EXPERIENCE OF BZD REDUCTION 31 5.3.2. THE EXPERIENCE AS MEDICAL: SPEAKING LIKE A HEALTH PROFESSIONAL 33 5.3.3. SHARING EXPERTISE AND EXPERIENCE 34 5.3.4. US VERSUS THEM: EXPERTISE OF AND EXPERIENCES WITH HEALTHCARE PROVIDERS 35 5.4. CONCLUSION 37 6. IN-DEPTH INTERVIEWS WITH (FORMER) HABITUAL USERS 38 Federal Research Programme on Drugs 4 Project DR/02/81 – BENZONET 6.1. METHODOLOGY 38 6.1.1. ETHICS 38 6.1.2. SAMPLE DESIGN AND RECRUITMENT STRATEGY 38 6.1.3. SEMI-STRUCTURED INTERVIEWS 39 6.1.4. DATA ANALYSIS 40 6.2. RESULTS 40 6.2.1. SAMPLE 40 6.2.2. MEDICATION NARRATIVES 42 6.2.3. THE ONSET: A BIOGRAPHICAL DISRUPTION 43 6.2.3.1. FIRST PRESCRIPTION 44 6.2.3.2. A TOKEN OF CONCERN 45 6.2.4. THE PATH TOWARDS LONG-TERM USE 47 6.2.5. WHAT DOES THE MEDICATION MEAN TO THEIR USERS? 48 6.2.6. LONG-TERM USE: A LONG AND WINDING ROAD 49 6.2.6.1. CONTENTED USERS 49 6.2.6.2. AND THOSE WHO DO NOT FEEL ABLE TO STOP 50 6.2.7. WITHDRAWAL STORIES 50 6.2.7.1. REASONS FOR CESSATION 50 6.2.7.2. FROM GRADUAL TAPER TO COLD TURKEY 54 6.2.7.3. WHAT HELPED DURING WITHDRAWAL? 55 6.2.7.4. A STORY OF RECOVERY 57 6.2.7.5. OCCASIONAL USE AFTER TAPER 58 6.2.7.6. RELAPSE: WHEN TAPERING OFF IS NOT SUCCESSFUL 58 6.2.7.7. CONCLUSION: CESSATION AS A CONTINUUM 59 6.2.8. DEALING WITH THE IMAGE OF ADDICTION 59 6.2.8.1. TABOO OR NOT? 59 6.2.8.2. DEPENDENCE AND THE STIGMA OF ADDICTION 59 6.2.8.3. THE ROLE OF PREVENTION CAMPAIGNS 63 7. RECOMMENDATIONS 65 7.1. METHODOLOGY 65 7.2. RECOMMENDATION CLUSTER 1: PREVENTION OF HABITUAL USE 66 7.2.1. AN AWARENESS-RAISING LEAFLET FOR PATIENTS AT FIRST PRESCRIPTION 66 7.2.2. CONTINUED GP TRAINING ON BZD/Z CONSULTS 67 7.2.3. RENEWED ATTENTION FOR EXISTING GUIDELINES 68 7.2.4. A COMMON POLICY ON PRESCRIPTION OF BZD/Z IN PRIMARY CARE 68 7.2.5. MULTIDISCIPLINARITY 68 7.2.6. LIMITATION OF THE AVAILABILITY: SMALLER PACKAGES 69 7.2.7. CONTINUED MONITORING THROUGH REGISTRATION IN FARMANET 69 7.3. RECOMMENDATIONS CLUSTER 2: CESSATION 70 7.3.1. A CLOVER LEAF MODEL ON CESSATION 70 7.3.2. PLANTING A SEED 70 7.3.3. FIRST LEAF: THE PATIENT’S PACE 71 7.3.4. SECOND LEAF: PSYCHOEDUCATION ABOUT WITHDRAWAL 72 7.3.5. THIRD LEAF: PEER SUPPORT 72 7.3.6. FOURTH LEAF: ALTERNATIVES 73 7.3.7. FERTILE GROUND 73 7.4. RECOMMENDATIONS CLUSTER 3: DESTIGMATISATION 74 7.4.1. TRAINING ON ADDICTION LITERACY IN PRIMARY CARE 74 7.4.2. FUTURE CAMPAIGNS 74 7.5. CONCLUSION: PATIENT ENGAGEMENT AT ALL LEVELS 76 8. FUTURE PROSPECTS 78 Federal Research Programme on Drugs 5 Project DR/02/81 – BENZONET REFERENCES 79 ANNEXES 87 ANNEX 1 OVERVIEW OF SENSITIZATION CAMPAIGNS BY THE FOD HEALTH 87 ANNEX 2 OTHER CAMPAIGNS 91 ANNEX 3 RECRUITMENT MATERIAL (WP3) 92 ANNEX 4 CONSENT FORM INTERVIEWS (WP3) 93 ANNEX 5 POST-INTERVIEW INFORMATION LEAFLET FOR PARTICIPANTS 95 ANNEX 6 INTERVIEW TOPIC GUIDES IN DUTCH 97 LIST OF FIGURES FIGURE 1 TIMELINE ......................................................................................................................................... 10 FIGURE 2 INDICATIONS FOR FIRST PRESCRIPTION ................................................................................. 43 FIGURE 3 CLOVER LEAF MODEL ON CESSATION .................................................................................... 71 FIGURE 4 CAMPAIGN 2005-2006 .................................................................................................................... 88 FIGURE 5 CAMPAIGN 2009-2010 .................................................................................................................... 89 FIGURE 6 CAMPAIGN 2009-2010 (BROCHURE) ........................................................................................... 89 FIGURE 7 CAMPAIGN 2018 .............................................................................................................................. 90 FIGURE 8 FAMPH CAMPAIGN 2011 ............................................................................................................... 91 LIST OF TABLES TABLE 1 OVERVIEW OF DIFFERENT INTERPRETATIVE REPERTOIRES ON BZD/Z USE .................. 18 TABLE 2 OVERVIEW OF PEER ADVICE IN THE ALTERNATIVE PATHWAYS REPERTOIRE ............. 20 TABLE 3 OVERVIEW OF POSSIBLE REPERTOIRES PER TYPE OF BZD/Z USER ................................... 24 TABLE 4 MOST VISITED AND ANSWERED DISCUSSION TOPICS .......................................................... 29 TABLE 5 KEYNESS ANALYSIS (FIRST 30 WORDS) .................................................................................... 30 TABLE 6 CATEGORIZATION OF FIRST 30 KEYWORDS ............................................................................ 36 TABLE 7 RECRUITMENT STRATEGIES INTERVIEWS ............................................................................... 39 TABLE 8 OVERVIEW OF PARTICIPANT CHARACTERISTICS .................................................................. 41 TABLE 9 OVERVIEW OF BZD/Z USED BY PARTICIPANTS ....................................................................... 42 TABLE 10 OVERVIEW FOCUS GROUPS ........................................................................................................ 65 Federal Research Programme on Drugs 6 Project DR/02/81 – BENZONET ACKNOWLEDGMENTS AND LIST OF MEMBERS OF THE FOLLOW UP COMMITTEE Firstly, we thank all participants who contributed to this research by sharing their unique personal story. Asking and answering questions about medication use was at times delicate and challenging for everyone involved, yet each and every conversation turned out to be an inspiring experience. We are grateful to all members of the follow-up committee for their invaluable feedback, input and support in the various phases of this research. - Alexis Jurdant (Fedito Bxl) - Anne-Marie Offermans (sociologe Département de Médecine Générale, ULB) - Caroline Theisen (Belgian Psychotropics Expert Platform -Belpep) - Cathy Mateï (KUL, arts, Big Bird) - Clémentine Stévenot (Observatoire socio-épidémiologique alcool-drogues -Eurotox) - Hilde Habraken (Belgisch Centrum voor Farmacotherapeutische Informatie -BCFI) - Jan Saevels (Algemene Apothekers Bond -APB) - Kaatje Popelier (Vlaams expertisecentrum Alcohol en andere Drugs -VAD) - Krista Broekman (Tactus verslavingszorg Nederland) - Kristien Coteur (KUL, Big Bird) - Lou Richelle (GP, Département de Médecine Générale, ULB) - Nele Maenhaut (Federaal Agentschap voor