1. The Sepo II Study: Experiences of ‘Functioning, Disability and Health’ of Women and Men Living with HIV in Lusaka, Zambia Phillimon Simwaba Disability, HIV & AIDS Trust Co-authors: Nixon S, Bond V, Solomon P, Cameron C, Hanass-Hancock J, Ibanez-Carrasco F, Maimbolwa M, Musheke M, Mwamba C, Menon A, Simwaba P, Siwale M, Zack E 20 th Canadian Conference on Global Health October, 2013

2. Background and Rationale The advent of antiretroviral therapy (ART) in Canada in the late 1990’s led to decreased mortality but increased disablement among people living with HIV History is repeating itself in Southern Africa where widespread access to ART (since the mid-2000’s) is prolonging the lives of people living with HIV but reframing HIV in terms of rehabilitation or disability has yet to occur This is the first-ever longitudinal study to explore HIV within a rehabilitation paradigm in a hyper-endemic country

3. Background and Rationale This study uses the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) The ICF focuses on the impact of health conditions at 3 levels: 1)Body functions and structures impairments are challenges at the level of the body part or structure 2) Activity activity limitations are challenges at the level of the whole person 3) Participation participation restrictions are challenges faced by the person in her/his environment or society The ICF also understands environmental and personal contextual factors as shaping the experiences at each of these three levels

4. International Classification of Functioning, Disability and Health www.rehab-scales.org/international-classification-of-functioning-disability-and-health.html

5. Objective To describe the experiences of women and men living with HIV on ART in Zambia, as conceptualized through the World Health Organization’s International Classification of Functioning, Disability and Health (ICF)

6. Methods Longitudinal, qualitative study 34 women and men (18 years or older) who have been on ART treatment for varying lengths of time (6 months to 10+ years) 2 health care facilities (one private and one public) Participants recruited to reflect variability regarding gender, time on treatment and access to public or private health care 3 waves of semi-structured, in-depth interviews, 4-6 months apart Ethics approvals received from University of Zambia, University of Toronto and McMaster University

7. Methods Cont’d A participant baseline questionnaire was completed demographic characteristics, social history, health history Interview guide included questions about how HIV and its treatment was currently affecting them: impact on their body, day to day activity limitations, and impact on lifestyle or relationships at home or in the community For each issue, participant was asked to discuss the personal and environmental contextual factors that shape those experiences what makes it better, worse, available supports

8. Methods Cont’d Interviews conducted in English, Bemba or Nyanja audiotaped and transcribed in English Coding coding template developed with a subset of transcripts and pilot tested each transcript coded independently by 2 members of the international research team NVivo 10 used for data analysis

9. Preliminary Results Round One Interviews

10. Participant Characteristics 17 men and 17 women 29 – 56 years of age Length of time on ART ranged from 6 months to 13 years Length of Time on Treatmentn 6 months to <5 years7 5 years to <7 years10 7 years to <9 years9 9 years and more8

11. Body Function and Structure Impairments Experiences of numbness (e.g. legs), weakness and fatigue, changes in body shape, vision problems, and memory challenges “It has affected my body in my legs. Ever since I started taking medicine they feel hot all the time. They have never stopped feeling hot when I sleep I don’t cover my legs. I do not cover them with a blanket. When I don’t cover them that is how I am able to sleep.” [Woman, 33 yrs]

12. Activity Limitations Some participants indicated that their usual activities had changed (e.g. less able to walk long distances and engage in sports) whereas others indicated that it had not impacted their activities “The medicine itself is not affecting me in anyway at this time and the day to day activities I do them the way I want to do them. There is nothing affecting me because am active in everything I do.” [Male, 44 yrs, T8] “No, there is nothing, there is no activity that I fail to do because I can do everything, am able to do everything for sure.” [Woman, 32 yrs, T2]

13. Participation Restrictions Stigma, discrimination and exclusion related to HIV status and/or disability Reduced participation in income generating activities Challenges meeting basic needs including food, shelter and school fees “Because it really hurts you know. The people you were associating with, talking with, eating with, suddenly when they know that you are HIV positive they completely cut off all ties.” [Woman, 40 yrs, T2]

14. Next Steps Round 2 data collection currently underway Further analysis will be conducted to better understand the influence of gender, socioeconomic status and length of time on treatment Longitudinal analysis to understand how and why changes occur and the mechanisms that play a role in shaping the lives of people living with HIV Findings will help inform advances for practice, education, policy, advocacy and research that enhance the lives of people living with HIV

15. Acknowledgements This work is supported by the Canadian Institutes of Health Research (#114907) and through in-kind contributions from the Health Economics & HIV/AIDS Research Division, the Disability HIV & AIDS Trust, the International Centre for Disability and Rehabilitation, and ZAMBART.