+ The Sepo II Study: Living Life on ART 8 December 2015

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+ Welcome Why the Sepo II Study was needed What we know now that we did not know before What shall we do with this new information? Closing

+ As such, people are likely to have new needs related to living with HIV. For many, ART has transformed HIV into a chronic illness with ups and downs Access to ART has had a profound impact on the experiences of people living with HIV

+ But what are the new needs related to living long-term with HIV and what are the implications for HIV policy and clinical care?

+ What was the purpose of the Sepo II Study? To explore the experiences of women and men living with HIV and on ART in Lusaka to better understand their hopes, challenges and experiences over time Why?  To inform the evolution of policy and care to better address long-term management of HIV as a chronic condition

+ Why unique? Qualitative longitudinal design Focus on life-related impacts of HIV Informed by 2 rehabilitation frameworks: WHO Int’l Classification of Functioning Disability and Health (ICF) Impairments Activity limitations Participation restrictions O’Brien’s Episodic Disability Framework Episodic nature of HIV Uncertainty

+ How was this study conducted? 35 adults living with HIV and on ART participated from 17 Dec 2012 to 17 April 2015 Participants were from: Chawama Level 1 Hospital (n=28) Lusaka Trust Hospital (n=7) One-on-one interviews were conducted on 3 occasions 6 months apart 31 participants completed all 3 interviews

+ How was this study conducted? Interviews in Nyanja, Bemba or English Participants shared experiences of living with HIV and ART related to: body functioning, day-to-day activities relationships and roles at home, at work and in their communities Ethical clearance received from 4 review boards in Zambia, Canada, and South Africa Ministry of Health in Zambia

+ Participant Demographics Chawama Level I Hospital (n=28) Lusaka Trust Hospital (n=7) Overall (n=35) Age21-56 years (average 40) years (average 43) years (average 41) Sex15 women 13 men 3 women 4 men 18 women 17 men Treatment1-13 years (average 5) 3-12 years (average 8) 1-13 years (average 6)

+ What did the Sepo II Study find?

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+ Treatment is Life

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+ Findings ART has made it possible to live longer with HIV, improving health and acceptance by others. However, barriers remain in accessing care and support including: not knowing where to get help to address certain concerns (e.g. worries about the future, healthy sexuality); supports or services that are unavailable (e.g. counseling on how to live with HIV); inability to afford care (e.g. getting an x-ray, non-ART medication); and, time and effort required to access care (e.g. long queues, time required off work). Treatment is Life

+ Living with HIV has ups and downs

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+ Findings Participants described ups and downs in their health, wellbeing and function over the course of a day, week or month These changes can be called “episodic” and they relate to: 1) Impairments 2) Activities 3) Participation Treatment is Life Living with HIV has ups and downs

+ Impairments (challenges related to body structure or function) All participants experienced at least one impairment (physical, psychological, sensory), now or in the past, but there was no single common story about the impairments they had, how many, or the severity. Common impairments included numbness, tingling or burning of their feet and/or legs; memory issues; vision problems; pain; fatigue and body composition. Some participants also described changes in body structure and weight that were experienced as fluctuating and were distressing. These impairments improved, stopped or worsened over the course of days, weeks or months Living with HIV has ups and downs

+ Activity Limitations (challenges related to doing daily tasks) Activity limitations varied by individual and often improve after initiation of ART. Participants reported that they manage most daily activities very well, including self-care, walking, sweeping, gardening, lifting, and caring for others. Living with HIV has ups and downs

+ Participation Restrictions (challenges for a person in her/his community or society) HIV and ART impacts participant’s roles related to work, intimate relationships, parenting, friendships and church. HIV mostly proved restrictive for work because of the regular clinic appointments. With regard to relationships with partners, friends and within the community, HIV could both worsen and improve these relationships. Although disclosure to children could be problematic, parenting was a major motivation to staying on treatment. Living with HIV has ups and downs

+ ART both reduces and creates stigma Acceptance by yourself and others

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+ Context It was originally thought that widespread access to ART would ‘eliminate’ stigma. ART both reduces and creates stigma

+ Findings Stigma persists and affects the lives of people living with HIV. Almost every participant spoke often about stigma even though there were no questions asking directly about this topic. It was evident that ART both pushed stigma away and led to stigma Disclosure was very limited and cautious. 3 participants went public. ART both reduces and creates stigma

+ Findings ART allows normality and normalization of HIV People get tired of stigmatizing over time; ART allows the stretch of time ART becomes a sign of ‘taking care of yourself’ and counters extreme sickness and death ART allows one to regain pride & reverse roles ART reduces stigma

METHODOLOGY SEPO II Comeuppance Cycle (Bond et al 2014)

+ Acceptance by yourself and others

+ Findings Frequently spoke about striving for acceptance by themselves and by others. Accepting their own status encouraged them to seek treatment – first step before accepting life long ART Wanted to be accepted WITH their HIV and wanting to avoid others knowing they had HIV to remain accepted Acceptance by yourself and others

+ Findings PLWH still defined as ‘being sick’ by others & themselves Death doesn’t always feel so far away; reinforced by others. 3 participants had suicidal thoughts; all recalled deaths of others LWH. ‘Being seen’ to be on ART led to involuntary disclosure, speculation (signs = pills, clinic visits, bodily changes, not drinking alcohol) Degradation (‘living a life on pills’, ‘lesser than others’) and pity stigmatising ART drives stigma

+ Not being sure about today and tomorrow

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+ Context Uncertainty has emerged as a common experience for adults living with HIV in other contexts (e.g. Canada), but little is known about this issue for people in resource-limited settings like Zambia. Not being sure about today and tomorrow

+ Findings Participants shared significant worries about: meeting multiple basic needs (e.g., food, shelter) providing for the wellbeing and education of their children (now and in the future) finding and maintaining work, and about the future availability of ART (cost and supply). These uncertainties focus more distinctly on basic needs and access to medicine than has been found in higher income settings. Not being sure about today and tomorrow

+ Exercise Matters

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+ Context Exercise has been demonstrated to improve health, well-being and functioning in adults living with HIV Exercise Matters

+ Findings Many participants described exercise and physical activity as strategies for improving health and maintaining well-being. This includes stretching, walking, running, going to a gym, and receiving physiotherapy. However, participants also described barriers to staying physically active Treatment is Life Exercise Matters

+ Making Sex Healthy Again

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+ Context For people living with HIV sex is often discussed as something dangerous or harmful. Rarely is sex framed as healthy, normal or pleasurable Making Sex Healthy Again

+ Findings Many participants described ongoing and diverse challenges related to what it means to live with HIV as sexual beings. Challenges included feelings of guilt associated with having sex, concerns about body image or sexual performance, navigating new or existing intimate relationships,, discussing HIV testing and disclosure with partners, and fear of rejection. Participants also discussed challenges related to family planning as they look to their future Making Sex Healthy Again

+ What are the most important messages from the Sepo II Study?

+ These findings suggest shortcomings in the current model of HIV care that focuses primarily on initiating and adhering to ART. HIV policy and programs also need to address the health- and life-related impacts of living longer with HIV, such as counseling for issues beyond VCT and adherence, and rehabilitation to promote function and quality-of-life. Overall, findings from the Sepo II Study promote evolution of the HIV care continuum to embrace a long-term approach to living well with HIV.

+ Recommendations for People Living with HIV and HIV Advocates

+ 1. Experiences of people living with HIV and on ART for some years indicates that daily activities are not affected 2. Ensure churches, schools, workplaces and other influential institutions advocate for the long-term benefits of ART 3. Get moving with daily physical activity 4. Consider the benefits of reframing HIV as a chronic episodic illness to help evolve the HIV response

+ Recommendations for Health Care Providers, Educators and Policy-makers

+ 1. Expand or create programs to address the long- term needs of people living with HIV related to clinical practice, education and policy 2. Incorporate rehabilitation into the HIV care continuum to broaden the focus to the life and health-related impacts of living day-to-day with HIV Use new open-access resource on HIV and rehabilitation at: ssa.hivandrehab.ca 3. More concerted efforts to address HIV-related stigma related to ART and long term illness, including ongoing HIV disclosure 4. Address food security and employment as crucial determinants of health

+ Recommendations for Researchers

+ 1. Investigate strategies for addressing HIV as a chronic, episodic illness in low-resource settings like Zambia, including rehabilitation interventions to mitigate negative impacts of HIV on bodies and lives New research needed to understand experiences of people living longer with HIV in rural settings. 2. Investigate the needs of women and men aging with HIV in low-resource settings like Zambia 3. Investigate strategies to mitigate the diverse and destructive forms of stigma in the era of ART access … for researchers

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+ Study Team Dr. Stephanie Nixon, University of Toronto and ICDR, Canada Dr. Virginia Bond, ZAMBART, Zambia and LSTHM, England Dr. Patty Solomon, McMaster University, Canada Dr. Jill Hanass-Hancock, HEARD, South Africa Dr. Francisco Ibanez-Carrasco, Universities Without Walls, Canada Dr. Margaret Maimbolwa, University of Zambia, Zambia Dr. Anitha Menon, University of Zambia, Zambia Dr. Margaret Siwale, Lusaka Trust Hospital, Zambia Chanda Mwamba, Zambart, Zambia Cathy Cameron, ICDR, Canada Phillimon Simwaba and Robert Sinyinza, DHAT, Zambia Elisse Zack, Stephen Tattle and Tammy Yates, CWGHR, Canada

+ Acknowledgements We thank the women and men who courageously shared their personal stories with us so that we can better understand the experiences of living with HIV on ART in Lusaka, Zambia. We also acknowledge our generous collaborators at the Lusaka Trust Hospital and Chawama Level 1 Hospital. This work was supported by the Canadian Institutes of Health Research (Ref: #114907).

+ For More Information Dr. Stephanie Nixon Dr. Virginia Bond URL: h/icdr-lab/sepo-2 h/icdr-lab/sepo-2

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