Perspectives of PLHIV on HIV Prevention in Uganda. Warren Parker, Susan Rogers, Eddy Walakira, David Kaawa-Mafigiri and Jimrex Byamugisha

Transcription

1 Perspectives of PLHIV on HIV Prevention in Uganda OPPORTUNITIES AND CHALLENGES FOR STRENGTHENING RESPONSE Warren Parker, Susan Rogers, Eddy Walakira, David Kaawa-Mafigiri and Jimrex Byamugisha

2 Acknowledgements Makerere University USAID/Uganda Ministry of Health The AIDS Support Organization (TASO) and the International community of Women Living with HIV and AIDS in East Africa (ICWEA) USAID Office of HIV and AIDS (OHA), Washington DC Study teams and participants

3 Sections of the Powerpoint Presentation Background of the study PHDP framework Study aims Methods General study findings related to all aspects of PHDP Findings specific to PHDP components Emerging issues and opportunities

4 Background Scale-up of VCT in African countries has increased the number of PLHIV aware of their status Parallel growth in accessibility of ART has improved the health and life outlook of PLHIV Changing context of PLHIV requires greater understanding of integration of Living with HIV in relation to HIV prevention into policy and strategies

5 Framework Terminology and concepts for HIV prevention among PLHIV have changed over time Positive Prevention, Prevention with Positives, Positive Living Positive Health Dignity and Prevention (PHDP) PHDP concept includes - We are more than patients - We are not vectors of transmission - We are all responsible for HIV prevention - We have needs and desires - Values: rights, dignity, equitable access, inclusion, economic wellbeing

6 Aims and methods Parallel studies in Uganda, Ethiopia, and Mozambique set out to Understand perceptions of the concept of PHDP among PLHIV Understand the experiences and practices of PLHIV related to HIV prevention Understand perceptions of support to PHDP-related information and services among PLHIV and service providers Understand the challenges and gaps and opportunities

7 Study areas

8 Methods and participants: Uganda Quantitative PLHIV Survey Total Kasese Kitgum Mbale Rakai Male Female years years Qualitative Assessment (PLHIV and non-plhiv) FGDs IDIs 21 (150 participants) men, women, PMTCT participants, SW, Truckers 26 men, women, support group members, HBC providers, Health workers, community and religious leaders Situational Assessment (organizations) Total Gov t NGO CBO/FBO Private

9 Study strengths and limitations Multi-country approach allows for insights relevant to east and southern Africa. Mixed methods approach strengthens analysis through triangulation Over-representation of older PLHIV, PLHIV on ART limits understanding of younger PLHIV and PLHIV not on ART (participants must have disclosed, snowball recruitment more likely to elicit PLHIV who have longer knowledge of HIV status). Quantitative study had small sample. Organizational assessment single source interviews, limited depth. Male PLHIV less represented in qualitative components

10 General finding: Optimism among PLHIV Accepting attitudes towards PLHIV, increase opportunities for PHDP Generally the situation is good. Even the people who don t have HIV don t mistreat us. They take us as their friends or brothers. (FGD, Males 26-49, Rakai) I think it s good. Especially when you disclose. This helps me not to infect others and so the challenge is with those who have not disclosed. They feel uneasy, so life is not good for them (FGD, Females 18-25, Kitgum).

11 General finding: Prevention prioritized PHDP concept not widely known more likely positive prevention or positive living but prevention recognized as vital Our pastor told us to stop spreading the virus to others. They even preach on how to be kind not to infect others. He emphasized the idea that HIV stops with me. He also encouraged us to disclose to others especially our family members (FGD, PMTCT Participants, Rakai). When you discover that you have the virus, try to use a condom, and if you find someone who refuses to use a condom, you leave that one so that you do not spread the virus to all people. If you spread it all over the village, HIV won t end but it will just multiply (FGD, Sex workers, Mbale).

12 General finding: Knowledge good Most PLHIV rate their HIV/AIDS knowledge as adequate to very good; most actively seek information Most key aspects of PHDP well communicated through mass media but print materials limited, with few/none for CSW, MSM. Health workers a main source of information Religion and spirituality very important to living with HIV

13 Findings specific to PHDP components 1. Health and ART 2. Disclosure and discrimination 3. Sexual and other risk behavior 4. PHDP response at community level 5. PHDP response at organizational level

14 Physical and mental health Male (n=95) Female (n=157) Physical health -can perform daily life activities 94% 91% Mental health - felt sad / depressed about HIV status in the past month 33% 43% Received counseling/support for depression 71% 85% Felt religion very important in coping with HIV 56% 63% 0% 20% 40% 60% 80% 100%

15 Managing ART (1) Participants on ART (72%), high adherence (82%), regular CD4 (93%) Close to a third of PLHIV experienced inadequate food to take drugs (32%) and/or lack of transport to access drugs (34%). Younger Ugandan PLHIV more often reported the food problems than did older PLHIV (p<.001). Some PLHIV took ART secretly, including some who had not disclosed to partner. Some experienced stock outs at visited health facilities (11%) and a majority worried about sustainability of the drug supply (63%). Ugandan PLHIV reported more ART-related problems compared to other study countries

16 Managing ART (2) Our concern on drug supply is that there are times when we are given few drugs due to shortage. For example we used to get drugs for three months but now we are given for one month. This poses a threat that one time in future we may fail to get drugs (FGD, PMTCT Participants, Rakai). Some may also hide them [ART] to avoid their children from worrying a lot to the fact that if they get to find out that their parents take drugs might give them a thought that they are dying soon. so to avoid this they hide while taking them. (IDI, Kasese )

17 Managing ART (3) Ethiopia (n=343) Mozambique (n=172) Uganda (n=186) Taking drugs when you have inadequate food Obtaining drugs because of transportation problems Obtaining drugs because of stock outs 6% 4% 6% 2% 8% 11% 24% 32% 34% Worrying that ART funding will end 41% 63% 85% Having to secretly take drugs 5% 11% 12% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

18 Findings: Disclosure (1) Disclosure in the context of wider availability of ART is easier. Positive reactions and responses to disclosure noted in many contexts by PLHIV. Negative reactions and risks remain including severe discrimination. Consequences of disclosure are gendered fear of consequences inhibit disclosure in relationship and in broader community. Four out of ten PLHIV worked hard to keep their status secret. Few protections from negative responses (partner violence, relationship breakup, loss of job, loss of accommodation, loss of opportunity for income generation, loss of opportunity for relationships)

19 Findings: Disclosure (2) If you are not yet married, it becomes difficult for you to get a wife; the whole village can know that you are sick [infected], and yet you also want to get married, so you remain alone (Kasese, FGD, Males 18 25). I know of a girl who informed her boss of her HIV status and was sacked because she was considered a burden. The employer openly broke the news to her fellow workmates, saying that the company would not be able to account for the days when she would go for hospital visits and therefore she wasn t prepared to keep her as an employee (Rakai, FGD, Females 26 49). HIV positive children in our village are laughed at, abused, and can no longer go to school due to fear of being insulted by fellow children (Rakai, FGD, Females 18 25)

20 Findings: HIV Disclosure (3) Only two-thirds had disclosed to a spouse or partner, least often women and those who had been diagnosed recently. A majority had also disclosed to family members and friends. Less than a third had disclosed to work colleagues or an employer. 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Disclosure to spouse/partner by gender*** and time since diagnosis** 87% Male (n=95) 54% 55% Female (n=157) ***p<.001; **p<.01 <1 year (n=42) 66% 65% 1-3 years (n=67) >3-5 years (n=43) 73% > 5 years (n=100)

21 Findings: HIV Disclosure (4) Consequences of disclosure (n=246) Spouse/partner left or divorced me 10% Friends rejected me 8% Experienced physical violence 8% Forbidden from sharing household utensils 4% 0% 2% 4% 6% 8% 10%

22 Findings: Sexuality & prevention (1) Over a quarter of PLHIV had not had sex in past year - more women than men, older than younger. Reasons for abstinence: I do not have a partner (28%) Not interested in sex (27%) Abstaining because of HIV status (16%) 35% 30% 25% 20% 15% 10% 5% 0% Among sexually active, 76% had only one partner - 24% had 2+ partners in past year - 17% had partner overlap in past 3 months Not had sex in last year by gender*** and age*** 14% Male (n=95) 35% Female (n=157) 10% years (n=79) 35% years (n=173)

23 Findings: Sexuality & prevention (2) How changed sexual behavior since learning HIV+ status Female (n=157) Male (n=95) Always used condoms Had fewer sexual partners Avoided concurrency Knew the status of partner(s) Had only HIV+ partner(s) Took ART to reduce viral load Abstained from sex 8% 15% 26% 26% 21% 22% 28% 21% 23% 20% 35% 40% 49% 59% 0% 10% 20% 30% 40% 50% 60%

24 Findings: Sexuality & prevention (3) In past 3 months, 17% had sex with a partner believed or known to be negative. - 84% used condoms, but also other protective methods (20%), and on ART and perceived low viral load (18%), nothing (4%) In past 3 months, 61% had sex with a partner believed or known to be positive. - 85% used condoms, other protective methods (11%) but also no need because both positive (7%), on ART and perceived low viral load (11%)

25 Family planning and PMTCT n=180 (females and males) Used contraception w/ last partner 72% Want to have child in future Had child knowing HIV+ status 31% 34% Took steps to prevent (PMTCT) 87% Had support from father for prevention 61% *Forms of contraception: condoms 63%; sterilized/vasectomy 5%; injection 13%; pills 8%; IUD/coil or implant 0%

26 Findings: Discordancy (1) Disclosure and discovery of HIV discordancy in a relationship is a significant point of conflict; discordancy not well understood. Positive partners experience blame; relationship breakup a product of discordancy; women more affected. Partners who choose to stay together may experience ongoing conflict, prevention fatigue, outside partners, and desire for children poses problems.

27 Findings: Discordancy (2) The problem they get is that most of the time they keep fighting and quarrelling, pointing fingers at the one who tested positive and the root cause of the infection (Mbale, FGD, PMTCT). The first thing is that there is divorce. If the woman is the one who is infected, a man will chase her away from the home. If the man is the one who is infected, automatically the woman packs her bags and she goes to her parent s home (Kasese, FGD, Males 18 25)

28 Findings: Discordancy (3) The problems with discordance arise when it s time for sex. The woman may know that the husband is HIV negative, but insists on unprotected sex. But if the woman is HIV negative, she refuses to have sex with her husband who is HIV positive [and] she totally does not want [it]. For the woman who decides to stay with an HIV-positive husband, she will get another partner outside marriage to have sex. This has led to a lot of marriage breakages (Mbale, FGD, Males 26 49). [A couple I know] have been able to survive due to preventive measures, such as having sex once a month and using condoms. This has made other discordant couples to be strong and encouraged them to face this situation too (Rakai, FGD, 18 25).

29 PLHIV support groups & associations 30% were support group members and 32% were in associations Benefits of membership (n=234) Increased knowledge (ART, TB, PMTCT) 87% Emotional support Treatment adherence (ART, TB, OI) Religious support Managing disclosure and/or discordancy Access to condoms 73% 65% 56% 50% 50% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

30 Volunteerism Over a third (36%) were involved in volunteer work Type of volunteer work conducted (n=87) Counseling HIV education Give public testimonials Homebased care Give out food parcels, other Other volunteer work 12% 18% 43% 50% 67% 74% 0% 10% 20% 30% 40% 50% 60% 70% 80%

31 Direct provision of PHDP services (1) Gov't health facility (n=6) NGO (n=6) CBO/FBO (n=9) HIV C&T for individuals HIV C&T for couples CD4 count Anti-Retroviral Treatment PMTCT/eMTCT STI treatment OI treatment TB treatment 17% 33% 33% 44% 50% 50% 67% 67% 67% 67% 67% 89% 100% 80% 89% 100% 83% 78% 83% 78% 100% 78% 100% 78% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

32 Direct provision of PHDP services (2) Gov't health facility (n=6) NGO (n=6) CBO/FBO (n=9) HIV transmission risk-reduction counseling 80% 100% 100% Counseling/support for safe disclosure 100% 100% 100% Counseling/support for discordant couples 60% 89% 100% Counselling / support for teens born with HIV 33% 83% 100% Counseling/support for children of PLHIV 67% 100% 100% Support groups 60% 89% 100% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

33 EMERGING ISSUES AND OPPORTUNITIES

34 Sexuality and HIV prevention Abstinence/celibacy among PLHIV high: We need to explore potentials for integrating into HIV prevention strategies PLHIV appear well motivated to prevent HIV transmission, and adopt standardized strategies for HIV prevention (ie. Condoms) but prevention strategies are subject to prevention fatigue. PLHIV are inclined towards serosorting potential to promote as a strategy Opportunities: Counseling support, support group discussion, communication of issues and strategies.

35 Discordancy (1) Sero-discordancy is high among couples in Africa (higher in low prev. than high prev. countries) Early ART, and any ART, reduces HIV transmission rates ART for discordant couples said to be game-changer for HIV prevention; linked to treatment as prevention discourse, but

36 Discordancy (2) Discordancy disrupts relationships, including relationship breakup (voluntary or involuntary) There is little support to couples or families to work through issues of discordancy and to weigh opportunities for staying together or to move on. Women more severely impacted. Discordancy remains an issue of conflict and risk among couples who elect to stay together. Opportunities: Counseling support, support group intervention/assistance, involvement of religious leaders, communication of issues and strategies

37 Disclosure Non-disclosure in sexual relationships is linked to fear of negative outcomes and tangible negative consequences. Difficult to disclose to children. Radius of disclosure of status is difficult to control gossip impacts directly on various aspects of wellbeing/independence Rights may be asserted in some contexts (complaints in health-care settings), but little evidence of holistic support to disclosure. Clearer understanding of disclosure for prevention needed. Opportunities: Counseling support, support group intervention/assistance, clarification of rights and public response, communication of issues and strategies

38 Managing ART The biomedical approach has been life sustaining but other PLHIV needs that affect ART adherence are often unaddressed. ART adherence is closely related to disclosure and the ability to access familial and community support. Concerns about the drug supply may be real and require both vigilance toward prevention and ways to address fatalistic responses. Opportunities: Integration of income-generating interventions, subsidizing food and transport costs, dispensing multiple months of drugs, more public and workplace education to reduce stigma and encourage disclosure.

39 Involvement of PLHIV in response (1) Networks and associations of PLHIV have emerged as powerful mechanisms for strengthening community responses. PLHIV give and receive physical, social, emotional and spiritual benefits from participating in peer support groups and networks/associations. They play an important advocacy role that facilitates policy change, stigma/discrimination reduction, funding support, and a supportive community environment. They have facilitated prevention, care, support, capacity development and leadership skills at community, national and international levels.

40 Involvement of PLHIV in response (2) PLHIV not adequately supported, nor integrated into leadership of response. Organized PLHIV are under-funded, lack essential skills and management expertise and are unappreciated for insights/perspectives on PHDP.

41 Involvement of PLHIV in response (3) Opportunities include: Formal recognition and awarding of contributing PLHIV Increase resourcing, guidance and training of support groups/associations and volunteers Advocacy among health professionals and general public for dignity and rights of PLHIV Inclusion of PLHIV into leadership/ advisory roles in furthering prevention.

42 Involvement of service providers in response (1) While service providers address a broad array of PHDP themes with their services: - Service availability is uneven across organizations; - Gap in availability of guidelines and manuals to support PHDP as a concept; - Full range of PHDP communication materials not available; - Vertical health programs are not addressing PLHIV prevention needs holistically.

43 Involvement of service providers in response (2) Service providers are supported in a range of relevant activities through the involvement of PLHIV as volunteers. Some provider facilitate support groups for PLHIV. However, as already pointed out, there is often sporatic and insufficient funding support for volunteers. Lack of sufficient monitoring and evaluation of PHDP activities.

44 Involvement of service providers in response (3) Opportunities include: - Develop guidelines and manuals to support PHDP as a concept; - Address gaps in PHDP services and communication materials among service providers and for various populations of PLHIV; - Design delivery of PHDP services based on individual needs and circumstances of PLHIV one size does not fit all; - Provide more funding, guidance and training to PLHIV to strengthen their involvement in addressing epidemic; - Expand the measurement (indicators), monitoring and evaluation of PHDP.

45 Questions & Comments

46 Group discussion by theme: Sexuality and prevention Discordancy and disclosure PLHIV health and ART management Involvement of PLHIV and service providers in the response