Di Cooper Women’s Health Research Unit School of Public Health & Family Medicine

1. "So you have to let go of fear, and not have a painful heart": South African HIV+ men's experiences of coming to terms with their diagnosisInsights from a Structural Intervention study to Integrate Reproductive Health into HIV Care Di Cooper Women’s Health Research Unit School of Public Health & Family Medicine University of Cape Town December 2008

2. Study Team HIV Center, Columbia UCT SOPH & Family Med Metro Cape Town DOH • Karen Jennings • Pren Naidoo Western Cape DOH • Keith Cloete • Virginia Zweigenthal Joanne Mantell Theresa Exner Susie Hoffman Tonya Taylor Zena Stein Diane Cooper Sheila Cishe Sumaya Mall Jennifer Moodley Chelsea Morroni Landon Myer Ntobeko Nywagi 2

3. Background • South Africa one of the highest rates of HIV infection in world – 11% in overall population & 28% in ANC women in 2007(NDOH, 2007) • Also high rate of unplanned (36%) or unwanted (17%) pregnancy despite relatively high rate of contraceptive prevalence (64% - women repro age)(SADHS, ‘03)

4. Background(contin.) • Epidemic most severe among individuals of reproductive age - sizeable population early in their reproductive yrs already HIV+ • Addressing HIV+ women & men’s reproductive health needs espec. important

5. Background(contin.) • Availability of ARVs has begun normalizing PLWHA’s lives – likely to increase desires for children • Little focus particularly on men living with HIV in sub-Saharan Africa’s fertility desires, contraceptive practices & needs • Prevalence of desire for parenthood among PLWH 28-50% in developing countries

6. Prior research findings • Approx. equal proportions of HIV+ women & men wanted biological and did not want (more) children (n=459) • Diversity in intentions • influenced by: • Individual desires and concerns • Social expectations • Provider attitudes • Medical interventions (PMTCT, ART) • HIV-related factors

7. Contraceptive access • 92% of women currently in sexual relationship, reported using contraceptive method (primary condoms) • However, 28% women reported unable to access contraceptive method during visit for HIV care/rx & 35% unsure if could obtain it during visit • Very few (29%) had disclosed HIV+ status to health care provider outside of HIV care & rx setting

8. Pregnancies post-HIV diagnosis • 19% (n=54) of women reported had been pregnant since knowing were HIV+ - nearly 2/3 unintended/unplanned • 90% of women & 91% of men had never heard of EC; only 6% & 2% respectively reported that health care provider had ever discussed EC

9. Table: Clients’ discussion of fertilityintentionswith health care providerswomen men

10. Providers,Policy makers: gaps to address • Absence of policy or guidelines • Insufficient training in contraception & HIV (concerns – effectiveness, drug interactions) & in EC & for some providers - effects of pregnancy on HIV progression etc. • Need for values clarification training • Difficult to meet client RH health needs comprehensively as no integration of RH care into HIV care & treatment

11. Intervention study overview 41/2 yr collaborative study between UCT& HIV center at Columbia U being conducted at 4 urban public sector health centres in Cape Town In phases 1 & 2 conducting in-depth qualitative interviews, using interview guide, with cohort of HIV+ women and men in HIV care, initially not on ARVs

12. Overview(contin.) Three interviews with HIV+ men & women in HIV care: baseline, 3 mths, 6-9 mths; 15-18 mths Formative research used to inform development of structural intervention to counsel HIV+ clients about SRH issues & effect improved integration of SRH services with HIV care

13. Proposed enhanced Intervention vs. Standard of Care STANDARD OF CARE • No non-barrier of methods available in HIV care • Free male condoms only • No study SRH training, counseling & family planning • No study systematic SRH info’ provision/ promotion • No study systematic, ongoing technical support PROPOSED ENHANCED • On site non-barrier contraception on site • On-site free male & female condoms • Study SRH training, counseling & family planning • SRH information available in waiting rooms • Study systematic, technical support

14. Participants: client cohort • At baseline 27 HIV+ men & 30 women recruited soon after entry into HIV care • Eligibility criteria:18 yrs or >;cognitive ability to participate in interview; willingness to be audio-taped • Study staff approached every third client seated in the waiting area 14

15. Study objectives and procedures explained & informed consent initiated • Interviews conducted in private in English, or Xhosa • 2nd interview - 18 men & 22 women followed up 15

16. Focus of this presentation Explore how men living with HIV react to their diagnosis Factors facilitating and hampering coping with life post-HIV diagnosis Examining changes over time Addressing counselling & service needs 16

17. Topics for interview Impact of HIV Disclosure of HIV status Impact of HIV on sex lives Sexual risk decisions Sources of support (or lack thereof) in their lives Desire for parenthood Approaches & attitudes to safer conception in context of HIV Attitudes to integrating components of RH into routine HIV care 17

18. Characteristics of baseline sample 18

19. Findings: HIV+ men • Reactions to diagnosis • For some recurring theme in baseline & follow up: shock/disbelief; stress & anxiety; thoughts about death & fears of dying: “ I don’t feel pain but at a certain time something just arrives “hey my days are numbered” and I look at her [his partner] also ..her days are numbered; we will meet up there in heaven. That is the only thing I am thinking about... “ (P26, baseline, 37 yrs, married) • Others felt resignation or that diagnosis not unexpected

20. Greater acceptance over time • For most feelings moved to greater acceptance with time: • HIV widespread – many others have it • Can live healthily • Availability of ARV rx can bring hope

21. ..but face anxiety re: practical issues • Two key concerns: • Inability to work/earn income & support family espec. in a patriarchal society: “Like as I am someone who is unemployed I depend on the woman, do you see, I don’t know what I can say because I am young [for a pension]...” (P26,37 yrs, married) • Who will provide care when sick: “ I mean I worry about who will care for me..because my family is scattered.. concerns are about whether and how these people who love me are going to treat me when I am ill.” (P23, 34 yrs, stable partner)

22. Disclosure • To whom: • Often a ‘process’, taking time • Little widespread disclosure beyond a few trusted individuals (still felt HIV stigmatised) • Mostly to wives/girlfriends & selected family members e.g. brother, sister, cousin; sometimes selected friends • Sometimes to parents (can be particularly difficult & ‘painful’) • Fear of disclosure to others: stigma– sometimes thinks others ‘know’ despite no disclosure social avoidance

23. Disclosure reactions • Mostly saw reactions to disclosure as supportive, but were exceptions • Experienced tangible benefits from disclosure: • Support & love/kindness: “ When I explained to her she said “Let me also go for a test, so that we can see if our health is the same” – she didn’t just throw me away…”(P26, 37 yrs, married follow up) • Can mutually assist each other in reducing sexual risk

24. Sexual desire & functioning • Some - no change, for others reduced libido; difficulties in sexual performance - often came up spontaneously; saw it as due to HIV: “ I am not feeling good about manhood.. I am losing the feelings….I”(HIV+ man, baseline) “ It has affected it [sex life]. I mean I am afraid of sex now. Yes there is a change..I don’t enjoy it anymore now” (P23, 34 yrs, stable partner, follow up interview) • Some men reported erectile dysfunction problems

25. Sexual risk decision-making • At baseline most reported that they insisted on condom use - at follow-up, greater willingness to acknowledge difficulties with consistent condom use: “..I did try to use a condom, I can’t use it because I can’t feel the woman..in the way I am used to [feeling] her [and] she agreed”.(P26,37yrs, married, follow up) “ ..when it is cold I don’t use one...It’s that thing of having to be all wrapped up & warm & then you have to go & get one..” (P23, 34 yrs, stable partner, follow up)

26. Sources of support in coping • Various sources of support - partners, family, friends & peer groups: “I did get some work.. but I got really weak… [she, my wife says] “Stop honey, don’t kill yourself over there, you are going to kill yourself – you are sick, you have no strength.” (P 26, 37yrs, married) “ My friends can accompany me .. to the clinic..they look after me with great care now.” (P23, 34 yrs, stable partner) “Since joining and attending the support groups…I have found things OK…I feel when I am with them that I am a real person.” (P12, 28 yrs,married)

27. Sources of support (contin.) • Economic assistance important (e.g grants) • ARV rx: “ Again I feel strong. Now I have told myself there is nothing that I will not be able to achieve..Ever since I got the ARV’s, I have been right.” (P23) • However, some reported little or no support

28. Coping positively Keep physically well & fit: “I stay healthy and also.. stop drinking, limit myself in tobacco,.. I eat healthy things and exercise is.. important because I was once a boxer and.. now a trainer-boxer because I can’t go to the ring because ..we bleed,.. so I keep my body fit.” (P8, 29yrs, casual relationship, baseline) • ‘Little things in life’ (e.g. birthday; obtaining a driver’s licence) provide meaning & pleasure

29. Challenges to coping • Physical weakness/ ill health • Mental health issues: anxiety & depression: “I can’t do anything. The time is over... There is just one thing I think of and that is to go home and live with mom and dad. ..I want to go home to the rural areas again ..[but]..I don’t think I will be able to do those things because I don’t have strength.. It is better if I just step back/withdraw.” (P26, 37 yrs, married, follow up)

30. Challenges to coping (contin.) • Alcohol use: “The medicine that I use is alcohol - I can’t lie…I get worried when I am just sitting by myself..you see I cool myself down with alcohol.” (P26, 37 yrs, married, follow up) • Inability to work & earn income;follow life plans – e.g. concerns that will not be able to have (more) children came up spontaneously from some men • Interview sometimes influenced thinking on having children

31. Advice to others: living positively • Reducing fear & anxiety: ‘Letting go of fear & not having a painful heart’: “I had to accept myself because the thing that was making me ill was thinking about just this one thing so you will never get well.. (P12, 28 yrs,married, follow up) • Openness about status: “…how can I start to live if I am someone who cannot be open about himself..then I just got to that feeling of peace – do you understand? “(P12, 28 yrs,married, follow up)

32. Addressing counselling & service issues • Providing clients with space to raise & probing re: • Sexual desire & functioning problems • Feelings of depression/mental health problems • Discussing life plans in terms of having or not having children • Assistance with economic/job problems – grants

33. Addressing counselling & service issues (contin.) • Exploring with client what/who helps them & building on these opportunities/supportive people • Take ‘cues’ from what works for those coping better but also tailoring counselling to individual & changes in life over time • Service provision within HIV care or referrals

34. Acknowledgements Study funded by NIMH R01 MH 078770 (Joanne E. Mantell, PhD, PI; Diane Cooper, Co-PI and a Center Grant NIMH P30 MH43520 (Anke A. Ehrhardt, PhD, PI) Grateful to the cohort of HIV+ participants who shared personal stories with us & to DOH in Western Cape & City of Cape Town 34