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Enhancing Access to Peer Support Through Technology for Recovery from Substance Use Disorders

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Enhancing Access to Peer Support Through Technology for Recovery from Substance Use Disorders Enhancing Access to Peer Support Through Technology for Recovery from Substance Use Disorders A Dissertation SUBMITTED TO THE FACULTY OF THE UNIVERSITY OF MINNESOTA BY Sabirat Rubya IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY Svetlana Yarosh December, 2020 Copyright © 2020 Sabirat Rubya. All rights reserved. Dedication This thesis is dedicated to my father Late Chowdhury Shabbir Ahmed May your memory forever be a comfort and a blessing. I am proud to have fulfilled your dream, as you are the one who inspired me to take risks to pursue my dreams. i Acknowledgement Before starting grad school, being “Dr. Rubya” was a dream, and then it became a journey; an amazing and eventful journey. Throughout the journey I have been lucky enough to get help, support, and inspiration from many people. I would like to express my sincere gratitude to all of them. I want to begin by thanking my adviser, Lana Yarosh. She has been a supportive mentor and an inspiring teacher from the beginning of my PhD. I consider myself lucky and always keep saying that she is the “best” and the “coolest” adviser one could ever have. Every meeting and interaction with her was an opportunity for me to learn. The best thing I learned from her is how to handle rejections and see them as opportunities to improve. I cannot thank her enough for all the guidance to become a better researcher. A special thanks for wishing me luck with the “I believe in you” sticker as I was going to teach my first class at Macalster – one of the many times of helping me believe in myself. My sincere gratitude goes to professors Loren Terveen, Jaideep Srivastava, and Brenna Greenfield for serving on my PhD committee. They have inspired me with their ownre- search trajectories and their valuable feedback and comments have made my research so much richer. I would also like to thank Professors Shashi Shekhar and Rosalie Kane for serving on the committee for my thesis proposal and preliminary exams. Thank you to my friends and colleagues in GroupLens for helping me refine my ideas and providing me feedback on my papers and talks. Thank you to Dan Kluver, Max Harper and Vikas Kumar for their help and guidance during the initial years of my Ph.D. A special thanks to Baris Unver and Jasmine Jones for all the conversations we had about research, and about life. It is great to have an opportunity of working in such a friendly and supportive environment. ii Many thanks to the undergrads who have contributed in different stages of my research and helped me develop and enhance my mentoring skill. I would not be able to complete this work without the help of the study participants and community collaborators–my heartfelt gratitude to them. I want to thank the National Science Foundation for funding my research (grants 1464376 and 1651575), and many anonymous reviewers who criticized my work and made it better. I don’t know how to express just how much appreciation I hold in my heart for my mother and my father. I am so grateful to them for supporting me, and praying for my well-being all along, for all the hard work they had done to bring me up and make sure I have the best of education. I feel for my mother who couldn’t imagine passing a day without seeing me, and had to bear with all the pain of living far away from me. I hope I can make my parents proud in every possible way. My thanks also to my brother for helping me address my weaknesses and giving me unusual ideas for overcoming them. Thank you to my uncle for helping me understand the importance of hard work to succeed in life. I would particularly like to acknowledge the support of my husband, Tahmid, who has provided much encouragement and helped me refine my ideas and their presentation. He has helped me go through some of my most difficult times. He always inspires me to bea better person. I am thankful that we have each other. Finally, my most special thanks to the Almighty for giving me the blessing, the strength, the chance and endurance to complete this journey. iii Abstract More than 23.5 million people in the United States (and a lot more worldwide) suffer from substance use disorders (SUDs). SUDs represent one of the most widespread and haz- ardous public health issues. Even after following a crisis medical treatment intervention (e.g., detox, rehab), up to 75% of individuals have recurrence of the symptoms within one year. In order to reduce the risk of relapse, healthcare providers recommend going through a maintenance program that includes continued abstinence and peer support. The most common approach to practicing recovery maintenance is by participating in “12-step” pro- grams, such as Alcoholics Anonymous (AA). Although members worry about achieving anonymity, access, equality, etc., as technology interacts with the program, there are op- portunities for designing technology to help the peer support process in these special groups. However, it is vital to understand the challenges faced by the members of these groups to inform design of technologies for them. This dissertation focuses on understanding the opportunities and challenges for technol- ogy to amplify peer support in recovery communities and developing new interface tech- nologies to enhance their reach to the help, support, and connection when they need it most. In the course of developing an application that help people find the right AA meetings for them, I explore the opportunity of applying human-in-the-loop information extraction tech- niques in extracting unstructured data with better accuracy. This work also explores the per- formance trade-offs in crowdsourcing in terms of task completion time, cost, and accuracy, while applying different crowd-work techniques to recruit generic workers vs. community members from different platforms. iv Contents List of Tables viii List of Figures x 1 Introduction 1 2 Background 4 2.1 Substance Use Disorders ........................... 4 2.2 Treatment and Recovery Options for SUDs .................. 5 2.3 Twelve Step Fellowships ........................... 7 2.4 Online 12-step Recovery Communities .................... 8 3 Related Work 9 3.1 The Values and Traditions of the Twelve Step Programs ........... 9 3.2 Technology Design for SUDs ......................... 10 3.3 Online Health Peer-Support and Anonymity in HCI . 12 4 Formative Investigation: Analysis of Online Peer Support in Recovery from SUDs 14 4.1 Related Work ................................. 15 4.2 Video-Mediated Peer-Support in an Online Recovery Community . 18 v Contents 4.3 Ethical Considerations ............................ 20 4.4 Two Synergistic Investigations ........................ 21 4.5 Conclusion .................................. 46 5 Formative Investigation: Understanding Interpretations of Online Anonymity in 12-Step Recovery Communities 47 5.1 Related Work ................................. 48 5.2 Methods .................................... 52 5.3 Results ..................................... 60 5.4 Discussion ................................... 80 5.5 Conclusion .................................. 84 6 Prototype Development of “AA Meeting Finder” through HAIR 85 6.1 Related Work ................................. 87 6.2 Methods .................................... 91 6.3 Results ..................................... 98 6.4 Discussion ...................................102 6.5 Conclusion ..................................104 7 Generic and Community-Situated Crowdsourcing in HAIR 108 7.1 Related Work .................................110 7.2 Methods ....................................114 7.3 Results .....................................125 7.4 Discussion ...................................136 7.5 Limitations ..................................144 7.6 Conclusion ..................................144 vi Contents 8 Towards Making HAIR Scalable and Sustainable 146 8.1 Updating the List at a Regular Interval . 146 8.2 AA Meetings Public API . 148 8.3 Guide and Documentation for using HAIR . 148 9 Conclusion and Future Work 150 9.1 Summary ...................................150 9.2 Future work ..................................153 9.3 Closing statement ...............................153 A Online Recovery Interview Protocol Guide 155 B Online Recovery Questionnaire 161 C Email/ Private message Sent to Recruit Interview Participants 174 D Screening Survey and Task Instructions on Amazon Mechanical Turk 175 D.1 Screening survey questions . 175 D.2 Task instruction screenshots . 175 Bibliography 179 vii List of Tables 4.1 Statistics of meeting attendees from survey .................... 24 4.2 Participants and features of their online recovery. Types of meetings included: AA (Alcoholics Anon.), NA (Narcotics Anon.), OA (Overeaters Anon.), CoDA (Co-Dependents Anon.), Al-Anon (Families of Alcoholics), ACA (Adult Child in Alcoholics), Dual Diagnosis (for mood disorder), Women’s Meeting, and PTSD (Post Traumatic Stress Disorder). Selection criteria included: 1. Recent active participation in online meetings, 2. Recent active participation in f2f meetings, 3. Frequent activity on ITR, 4. High number of friends on ITR, and 5. Chairing meetings on ITR ........................... 28 5.1 Participants’ Demographics. Fellowships included: AA, NA, OA (Overeaters Anon.), EA (Emotions Anon.), ACA (Adult Child in Alcoholics), CoDA (Co- Dependents Anon.), Al-Anon (Families of Alcoholics), and CMA (Crystal Meth Anon.). ...................................... 53 5.2 Frequency of themes in the questionnaire responses (number and percent
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