Luận án: Cuộc sống của các cặp đôi sống chung với HIV - Đối thoại và hành động cộng đồng

COUPLES LIVING WITH HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION DISSERTATION to obtain the degree of doctor at the University of Twente, on the authority of the rector magnificus, prof. Palstra, on account of the decision of the graduation committee, to be publicly defended on Thursday, the 30th of August, 2018 at 12. by Patricia Miller born on the 15th of May, 1967 in LeRoy, Canada Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Graduation Committee: Chairman and Secretary: Prof. Toonen, University of Twente Supervisors: Prof.

Wilderom, University of Twente Prof. Wulff, University of Calgary, Canada Committee Members: Prof. Millar, University of Twente Prof. Kessels, University of Twente Dr.

Trueman, Mount Royal University, Canada Prof. Junger, University of Twente Prof. Rijsman, University of Tilburg Prof. van Loon, University of Tilburg Referee: Dr.

Schiller, University of Massachusetts, Amherst, USA Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION This PhD dissertation has been approved by: Prof. Wulff (Supervisor) Cover Design: Joshua Warrington Copyright © 2018 Patricia Miller, Calgary, Canada. All rights reserved. No part of this publication may be reproduced or utilized in any form or by any electronic, mechanical or by any means, now known or hereafter invented, including photocopying and recording without otherwise the prior written approval and permission of the author.

ISBN: 978-90-365-4609-6 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Gratitude One does not enter and come to understand a community of people without some sort of opportunity. The opportunity that came to me was through the Southern Alberta Clinic and Alberta Health Services, and through my work as a social worker within the Calgary Health Region. Being a social worker allowed me to enter people’s lives in the dual role of helper and advocate for persons living with HIV. I thank the profession of social work for giving me a professional framework in which I could work towards bettering people’s lives.

The leap of faith I took to start my PhD and tackle a qualitative research project was greatly supported by Dr. John Gill, Clinical Director of the Southern Alberta Clinic. He trusted me to conduct research that would benefit the larger community of persons living with HIV; for that trust, I am forever grateful. To the HIV patients and their partners who trusted me to gather them into a community and engage in dialogue - I thank you for your bravery and for placing your trust in me.

The voice of your community will forever change how the world understands your experience, individually and collectively. I acknowledge and appreciate the supervision and substantial support that Professor Celeste Wilderom, from the University of Twente provided to me as I developed this contemporary piece of knowledge that has benefitted the larger HIV community. Her critical critiques and constructive feedback helped me to develop my academic rigour as the thesis developed into a scholarly piece of work. The consistent communication that she provided allowed this thesis to fully develop into a science-in- action, community research project that has had immense results for persons living with HIV.

I very much appreciate the support and supervision from Professor Helena Desivilya (Max Stern Academic College of Emek Yezr). I appreciate that you encouraged me to demonstrate the value of this longitudinal participatory action research project. Her critique became pivotal in merging the importance of research-in-action and the empowerment of persons living with HIV. I acknowledge with great gratitude the ongoing support and supervision that Dr.

Dan Wulff offered to me over a six-year period. He consistently gave me constructive feedback that helped me to develop my own critical analysis as I blended narratives to construct the new and important knowledge that is presented here. To my children – you accepted the many hours that I took to attend meetings, write drafts and think about ideas to move this project forward, and you recognized that my efforts would contribute to human betterment. In the end, “we” as a family committed to finishing my PhD.

Anastasia [as my future daughter in law] – I thank you for your many hours of support and enduring understanding of the importance of this work to the many people that it represents. To John – it would not be without your patience and wit that I would have finished such a significant contribution to the larger community. Lastly, in a recent Maclean’s article, Payam Akhavan (the UN’s youngest-ever war crimes prosecutor and human rights scholar) stated that “paying the price can mean many different things: emotional, psychological or material…But we must sacrifice something in order to make the world better” (Bethune, 2017, para. The multiple 1 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION sacrifices that my family and I endured through this seven-year process were necessary; so that it becomes better for others who do not have the same chance.

2 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Abstract The initial idea to gather together sero-discordant couples (i., when one partner is HIV-positive and the other is HIV-negative) to learn about their experience of living with HIV was generated from conversations that I had with couples at the Southern Alberta HIV Clinic. Beyond the world of HIV medical care, many sero-discordant couples are unable to share personal experiences that might range from travelling and taking their medications, separation due to HIV and exposure, welcoming a child with negative HIV status, and the many other aspects of couples’ lived experiences. My observation was that many sero-discordant couples felt invisible or silenced due to HIV’s social stigma, and perceived that they fell outside of the North American society’s dominant, socially-constructed couple narrative. Multiple services – Alberta Health Services, the Conjoint Ethics Committee, HIV Community Link, the Taos Institute and other community professionals – were engaged to create a community space that would allow sero-discordant couples to come together to share their experience of living with HIV.

The aim of this collaborative practice of community engagement was to develop an inclusive, collaborative agenda that would protect and provide a safe space for sero-discordant couples to gather and dialogue. This study was conducted as a participatory action research process that included an initial process of community gathering for sero-discordant couples. The aim was to foster dialogic processes that could be woven together to empower couples to break through the stigma that has kept them marginalized through and after the AIDS epidemics of the 1970s and 1980s. The gatherings were intended to be a first step towards understanding the experience of these couples, which is often invisible, by lifting the veil of marginalization and isolation that has socially permeated their lives since being diagnosed with HIV.

This study was conducted over six years. The research phases included the initial gatherings and dialogues, the development of an action-oriented agenda by the sero- discordant community, an engagement of the action phase, and finally the creation of a fully funded, peer-support model that provides individual and group support to the sero- discordant community. This peer support model, as initiated by the action-oriented research process, is now provincially, nationally and internationally recognized as a working model for other oppressed groups of people living with chronic disease (Miller, 2017). 3 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Abstract in Dutch Tijdens gesprekken gevoerd met Sero discordante echtparen op de Southern Alberta HIV Clinic ontstond het idee om deze type paren bij elkaar te voegen in groepsverband.

Buiten de HIV-medische wereld delen deze paren namelijk vele problemen die variëren van medicatie op reis; scheidingen als gevolg van HIV en blootstelling eraan; het verwelkomen van een HIV negatief kind, en de vele andere aspecten van de door deze paren (al of nog niet) meegemaakte ervaringen. Mijn observatie was dat veel Sero discordante paren zich onzichtbaar of de mond gesnoerd voelden door het sociale stigma rondom HIV. Ze hadden het gevoel buiten de Noord Amerikaanse samenleving te vallen. Meerdere diensten – Alberta Health Services, the Conjoint Ethics Committee, HIV Community Link, the Taos Institute en andere maatschappelijk-werk professionals—associeerden zich t.

het creëren van een gemeenschappelijke ruimte waarin Sero discordante paren samenkomen om hun ervaringen over het leven met HIV te delen. Het doel van deze samenwerking was om een zo volledig mogelijke agenda te ontwikkelen dat uiteindelijk een veilige plek zou bieden voor Sero discordante paren: ook om bij elkaar te komen voor dialoog. Deze studie is uitgevoerd als een participatief actie-onderzoeksproces, inclusief een kennismakingsproces t. de onderlinge ontmoetingen van Sero discordante paren.

Het doel was om de processen voor dialoog te bevorderen die samen geweven konden worden om de mondigheid van paren te vergroten zodat ze het stigma konden doorbreken die hen na de AIDS epidemieën in de jaren ‘70 en ‘80 aan de kant doen bleven zetten. Deze bijeenkomsten waren bedoeld als een eerste stap naar het begrijpen van de vaak onzichtbare ervaringen van deze paren; door het marginaliseren en isolatie weg te halen dat onbedoeld hun sociale leven is binnengedrongen nadat ze met HIV zijn gediagnostiseerd. Deze studie is uitgevoerd over een periode van zes jaar. De onderzoeksfasen behelsden initiële bijeenkomsten en dialoog; de ontwikkeling van een actie- georiënteerde agenda door de Sero discordante gemeenschap; het aangaan van de actie fase; en tenslotte de creatie van een volledig gefinancierde peer-support model die voorziet in individuele en groepsondersteuning voor de Sero discordante gemeenschap.

Dit peer-support model, zoals geïnitieerd door het hier gedocumenteerde actie- georiënteerde onderzoeksproces, is nu op provinciaal, nationaal en internationaal niveau erkend als een goed werkend model voor andere onderdrukte groepen mensen met een chronische ziekte (Miller, 2017). 4 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Table of Contents CHAPTER ONE: INTRODUCTION. 8 The Lived Landscape Behind the New Narrative. 9 Background and Purpose.

11 The Writer within the Written. 15 Witnessing Self Within the Written. 16 Dialogue Within the First Relationship. 16 Diversity as a First-Person Right.

18 Phoenix Rising: Silenced Truths Must Emerge. 19 The Awakening of an Oppressed Personhood. 20 Knowledge Built by Whom?. 21 CHAPTER TWO: CONTEXTUALIZING OUR RESEARCH AMONG THE AUTHORITATIVE STUDIES THAT HAVE DEFINED THE SOCIAL LANDSCAPE OF KNOWLEDGE BUILDING.

24 THE OVERVIEW OF LITERATURE. 25 Conjoint Experiencing: The I & Professional Affiliations. 25 Action Research: Does it Have Merit?. 26 The Synthesis of Education, Action and Potential People Movements.

28 Participatory Action Research: Collaboration in Action. 28 LBGTQQ2: The Call for Greater Understanding. 29 Ageism and LGBTQQ2: A Perfect Storm. 30 Uninformed: Transgendered Persons - “It’s Not About What’s Between My Legs’’.

30 AIDS: A Gay Man’s Issue - The Emergence of Social Stigma. 31 Merging Social Constructivist and Attachment Theory: Couples & Affairs. 31 HIV, Sex and its Relational Dynamic. 32 HIV is Not the Only Issue: Is Interpersonal Violence an Ally?.

33 Peer Support: The Road Less Travelled. 34 CHAPTER THREE: RESEARCH METHODOLOGY, SCIENCE-IN-ACTION (with people) RATHER THAN RESEARCH (on people). 38 Participatory Action Research: The Science of Persons in Action Versus Written Action About People. 38 SAMPLING PROCEDURES AND SELECTION PROCESS.

40 Developing Engagement Methods. 41 Informed Consent: Clarity in Action. 41 THE INITIAL GATHERINGS: STARTING TOGETHER. 42 Understandings, Action and Analysis.

43 Risk Analysis: The Potential Harm. 45 Benefits: Social Change Agents. 46 Confidentiality: Secrecy and Story. 46 5 Couples Living With HIV: GATHERINGS, DIALOGUE AND COMMUNITY ACTION Provision of Results to Participants.

47 The Action Phase: Decision Making in Action. 48 Confidentiality Within a Peer-Support Model. 49 Community Engagement: Science-in-Action. 50 CHAPTER FOUR: BEING THEIR OWN EXPERTS.

53 THE INITIAL GATHERINGS IN-ACTION. 54 Conversations Woven into Actions. 54 Initial Gatherings: History-Making in Discourse Exchanges. 54 Narratives to Science-in-Action.

55 INTIMATE DIALOGUES: KNOWING THE UNKNOWN. 60 The Invitation: Data Sharing Without a Condom. 61 THEIR STORIES: HIV, RELATIONAL WORDS AND THE LIVED EXPERIENCE. 61 Me, the Researcher: Questions around Consensual Data .