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Adolescents don’t define themselves by their HIV status, so why do we? �

Constance Mackworth-Young

Assistant Professor of Medical Anthropology

London School of Hygiene and Tropical Medicine

The Health Research Unit Zimbabwe

Good afternoon. Thank you for the introduction.

I’m particularly interested to talk on this panel, because I feel passionately about adolescents and young people, and doing what we can to meet their needs. In particular, I felt so inspired in one of the sessions yesterday listening to Precious Shongwe, from the eSwatini Network of Young Positives, saying “we look at young women as medical beings. I have bigger problems before we talk about condoms or treatment. Most programmes are looking into the medical parts, but not the real issues of AGYW. Are we about quality services or are we about pushing targets for AGYW?”

Much of my work involves trying to forefront the stories of adolescents and young people, and situate their experiences around HIV within the the context of their broader lives, and it is that that I want to bring into this discussion.

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“College is so important to me. I just know I will make it and become a nurse one day. And be able to support my young brother. I have been managing the fees with the bursary. But now, my mum is struggling to pay the fees, and there are extra costs like the ID badge and blankets. I will have to ask my Father’s cousin, even my Aunty. I can really understand why some girls sell their bodies. You’ve just got to find a way to pay.” (Rhoda, young woman, Zambia, 19 years old)

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Methods and studies I draw on

Ethnographic research with young women living with HIV in Zambia

Research with young women over 4 years, including 12 months ethnography

Qualitative research within HIV and sexual and reproductive health trials and intervention studies

CHIEDZA: SRH and HIV intervention in Zimbabwe

Rhoda is one of the many adolescent girls and young women with whom I have conducted ethnographic and qualitative work over the last decade in Zambia and Zimbabwe.

I will draw on two main bodies of work. Firstly ethnographic research that I conducted in Lusaka, Zambia, with young women living with HIV over 12 months in their homes, colleges, churches, clinics, with their families, friends and partners. It included making collages with these young women, to visually depict their lives and priorities. Secondly qualitative research within HIV and sexual and reproductive health trials and intervention studies in Zimbabwe, where we conducted interviews, participant observations, and participatory workshops with adolescents, young people and key stakeholders to understand how health services are experienced.

The particular intervention that I will draw on is CHIEDZA, a community-based integrated SRH and HIV intervention delivered in 12 communities across Zimbabwe, which received 78,000 visits by young people over 30 months.

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HIV only one part of identity

Even for adolescents living with HIV, HIV is only one part of their lives and identities.
Identities: sisters, girlfriends, students, Christians
Priorities: food, education, relationships, income

“I have HIV but I’m still crazy, cool, and confident” (Mavis, 16 years, collage about herself)

Rhoda’s story exemplifies some of the competing priorities that adolescent girls and young women face and balance on a daily basis.

The incredible successes of HIV over the last two to three decades have meant that, at an individual or community level, even in highly affected HIV areas, HIV is mostly not adolescent girls and young women’s primary concern, and is now actually often seen as a condition which one can receive high quality care and treatment for – due to the incredible investment that there has been in HIV. This often contrasts to to other conditions where health care is either unavailable, substandard, or has a high personal cost.

Even with the adolescent girls who are living with HIV with whom I have worked, they strongly emphasise that HIV is one part of their identity, but only one. When we made collages together as visual demonstrations of themselves, their lives, and their priorities adolescent girls living with HIV emphasised the importance of faith, family, friends, school and collage, alongside their experiences of HIV. They emphasised their identities as sisters, girlfriends, students, Christians, over their identity as living with HIV. They talked about their priorities: food, education, relationships, income. While HIV is one part of their identity, they certainly don’t define themselves by their HIV status.

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Other priorities: pregnancy

“Before having my child, I didn’t use anything to prevent myself from getting pregnant…Young girls must not take family planning pills if they are not married.” (young woman, Zimbabwe, 22 years)

”I dropped out of school when I got pregnant. All that is over for me now. I can’t go back.” (young woman living with HIV, Zambia, 18 years)

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Interlinked and competing risks and priorities

Food

Relation-ships

Education

Pregnancy

Family

Other health conditions

Social capital

HIV

Drugs, alcohol

Housing

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Meeting adolescents where their priorities are

Seeking to really understand what adolescents themselves view as their risks and their priorities
Supporting these risks and meeting these priorities
Linking public health priorities to adolescents’ priorities

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CHIEDZA: integrated service

Integrated services: menu of services
High acceptability: 96.4% rated their overall engagement with the CHIEDZA service as either very good or excellent
Integration of services was highly valued: one stop shop

“I came wanting pads – pads are so expensive nowadays, and they were giving them for free – and then also got tested for HIV” (young woman, Zimbabwe, 18 years old, tested HIV positive)

One example where I feel we did this effectively is in CHIEDZA, the integrated community-based intervention in Zimbabwe that I mentioned earlier. Here, an integrated package of sexual and reproductive health services were offered to young people, which included HIV and STI testing and treatment, menstrual hygiene products and care, condoms, and contraception, among others. There was high acceptability of the intervention, with 96% rating their overall engagement with CHIEDZA as either very good or excellent. A key reason for this high acceptability is that CHIEDZA provided a one stop shop, where several of their needs could be met in the same place.

We found that providing free menstrual hygiene products, in a context where they are prohibitively expensive to buy, was a real draw for young women to attend. This was a product that most young women wanted and needed, but were not able to pay to access. So it drew them to CHIEDZA. Then, while they were there, they would take up other SRH services.

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At that time, this young woman tested for HIV, tested positive, and was linked to treatment and care.

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CHIEDZA: integrated service enabling uptake

“Before I first came here, I am one person who was to get tested, but I got a full explanation of the benefits of knowing my status” (young man, Zimbabwe, 17 years).

Attending to access particular services. When through the door, easier to have supportive discussions to overcome fear of testing for HIV or STIs.

Attendance to CHIEDZA was facilitated by particular services, or hooks as we called them. Before attending the service, several clients described feeling fearful of HIV and STI testing, but once they came, attracted by these ‘hooks’ they received supportive counselling from providers. For many clients, it was this infrastructure of support that enabled them to overcome their fears and engage in testing, once they were there:

“Before I first came here, I am one person who was afraid to get tested, but I got a full explanation on the benefits of knowing my status” (client, male, 17 years).

Although most young people reported that they came to CHIEDZA for other services, 78.6% of those eligible for HIV testing took up HIV testing at their first visit, and another 2487 (54.1% of returnees) on subsequent visits.

CHIEDZA demonstrated the feasibility and value of providing integrated services that both meet adolescents and young people at their priorities, and public health priorities.

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Continued challenge of male engagement

“I would come, but I haven’t made any money today. I’ve got to hustle, and only then can I think about my health. But I just don’t think I will have time.” (young man, Zimbabwe, 22 years old)

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Further integration to employment and educational needs

Extending integration beyond HIV and sexual and reproductive health
Include meeting educational, employment, and social needs

Health

Social asset building

HIV

Sexual and reproductive health package

Employability and education/ skills

Social support/ non-judgemental conversations

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Closing messages

HIV is one of the many risks and priorities that AGYW face
Programming should be integrated – meeting AGYW’s needs with global health priorities
Integration of HIV to STIs, menstrual health, contraception, and more broadly, with education, and income generation
We need to develop and use broader outcomes, rather than solely HIV outcomes

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Acknowledgements

All the adolescent and youth participants
CHIEDZA study team, especially Rashida Ferrand (PI), Chido Dziva Chikwari and Sarah Bernays
Ministry of Health and Child Care, Zimbabwe

Zimbabwe Social Science Research Group