Meeting the Reproductive Health Needs of Youth Living with HIV in Tanzania:

1. Meeting the Reproductive Health Needs of Youth Living with HIV in Tanzania: A qualitative study exploring the experiences and perceptions of young Home Based Care clients, their caregivers, and care providers Joanna BuszaIAC, July 2012

2. SRH & Adolescents living with HIV • Adolescence as a time of transition to adulthood, including sexual development and experimentation • Evidence from other settings shows that youth living with HIV report the same sexual experience and fertility preferences as others in their age group • ART adherence and retention can be lower • Use of contraception & condoms varies in studies (when compared to youth not living with HIV) • “Disconnect” between needs and focus on abstinence messages by providers

3. Study Background • Youth (15-24) comprise about 40% of adults (15-49) in Tanzania’s population • Youth account for up to 20% of HIV infections • Increasing data available on “slow progression” – survival among vertically infected children higher than previously thought • Young people in need of HIV treatment and support continue to be a growing population • BUT Only 5% of Pathfinder’s HBC clients in the 15-24 age group

4. Study Aims • To describe perspectives of youth living with HIV on experiences of health and illness • To learn about youth’s expectations, attitudes and concerns regarding sexuality, sexual development and relationships • To elicit study participants’ views on the HBC programme, including its benefits and weaknesses • To compare the perceptions of HBC clients aged 15-24 with those of their caregivers and HBC providers. Fieldwork conducted January-March 2011

5. Study Design • Qualitative research in Dar es Salaam and Tanga • Interviews with adolescents (15-19) and young adults (20-24) who: • Were receiving HBC care • Knew their HIV status • Consented to participate AND received permission from a parent or guardian if aged under 18 • Brief, anonymous sexual behaviour questionnaire administered after the interview with youth • Youth could nominate a “carer” for interview • Perspectives gathered from HBC providers

6. Results • 47 interviews in total: • 12 HBC providers • 27 HBC clients • 10 Carers • Among clients, 14 adolescents interviewed (including a 14-year old) and 13 young adults • 11 respondents reported sexual experience • Mix of vertical (17) and sexual (10) HIV acquisition • 8 girls had 1 or more child

7. Findings: Stigma & Secrecy • Adults anxious about when/how to tell youth of their infection • Keeping it secret – family prohibitions on telling others in the community • Some parents reluctant to admit own infections, suggesting casual contact leads to infection • Lack of clarity on HIV transmission routes and widespread avoidance of disclosure, including to potential sexual partners • Fear of discrimination a dominant theme – a preoccupation of both young people and carers

8. Findings: Stigma & Secrecy • My father didn’t tell me anything … I suspected that there was something fishy about it for I was given medicine month after month even when I felt well. (Male, 18, Tanga) •  The way people are looking at me? Aah! I’m not comfortable at all. …I have not told anyone, I feel bad, truly I feel very bad, I may be walking in the street, but upon people looking at me, I feel very miserable and uncomfortable. (Female, 20, Dar es Salaam) • I asked my mother where we had got HIV-positive from she told me that she didn’t know, … later they told me that perhaps I had used a razor-blade that someone else with HIV had used to cut his/her nails – that infection spreads like that. (Female, 20, Tanga)

9. Findings: Sexuality & Reproductive Health • Reluctance to discuss with any adults, including in interviews • Marriage and childbearing desirable, but frightening as will involve disclosure • HBC providers and carers believe that talking to young people about sex “coaches them” • Sex viewed as dangerous to people living with HIV and likely to speed up disease progression

10. Findings: Sexuality & Reproductive Health •  It has not affected me in any way for there are others (like me) who get children as usual or get married and live with men. … I expect to have my own home; to have a family. (Female, 23, Dar es Salaam) •  Oh, getting married? Not now, may be later after I have got money and have got good life. Then I’ll think of other matters. … However, I feel it will be hard for me to get married. But listening to these providers, getting married is possible. And it is also possible to get children. I am not in any hurry so if I get some income, things will settle down on their own. (Male, 18, Tanga)

11. Findings: Sexuality & Reproductive Health •  Truly, [making] love----I have never done it. Not even once. I just won’t do it for I know my weakness. I can’t do it. What to do? They tell us to use protection if you want to make love so that you do not get weaker. This we are told at the hospital. That is what they tell us. (Male, 16, Tanga) • I’m trying my level best to create awareness that if one does sex frequently; it leads to deterioration of health, unless you use protective gears (Female provider, Dar es Salaam)

12. Findings: HBC Program • Adolescents had little contact with providers – saw HBC as the domain of their parents/carers • Unrealistic expectations/ misconceptions for what could be provided, especially by carers (money, food, school fees) • Adolescents concerned about breach of confidentiality • Providers’ reiterated difficulties of engaging with youth, but believed they were more “open” than the youth reported • Different advice provided to vertically vs sexually infected youth

13. Findings: HBC Program • We were not prepared to serve clients who are young people. We were given some general knowledge/skills on how to care for people with HIV/AIDS. That is what we got.. (Female provider, Tanga) • There is a difference. As I’m also an adult, it is easy with an adult person, s/he is comfortable, while with the youth – hmmm, it’s a bit hard. (Female provider, Dar es Salaam) • The difference with the youth is that at adolescence they want to try out all sorts of things. So I talk to them … that they should try to contain themselves and if they come to a point where they have to have sex, they should use condoms (Female provider, Tanga)

14. Issues Raised • Challenges of communication • Disclosure to young people and others • Reinforcement of secrecy within families and communities • Discomfort discussing sex and SRH with adults amplified by HIV • HBC programme gaps • Difficulties in engaging with young people • Inaccurate information and judgmental attitudes • Lack of clarity on the realistic role of HBC

15. Many Thanks A Full Report of the study can be downloaded from http://www.pathfind.org/ Asante Sana !!