Making dreams into reality: How the imagined clinics of HIV-positive teens informed national youth health policy
One warm Spring afternoon in 2013 in the Eastern Cape of South Africa, a group of adolescents from HIV/AIDS affected communities sat down with coloured pens and poster paper and drew their own idea of a “dream healthcare clinic". The exercise was repeated with a bigger group of kids later that summer. It was more than wishful thinking: a few years later, key findings from their designs were incorporated into South Africa’s Adolescent and Youth Health Policy for 2017. Andrea Teagle reports.
Nearly 1 in 3 of South Africa’s new HIV infections (33%) occurred in young people between the ages of 15 and 24, according to UNAIDS estimates for 2017. And, although Aids mortality has begun to decline in recent years, it remains high among adolescents. Partly, this reflects a generation of children infected at birth shifting into adolescence, and partly it is due to the challenges of retaining teens in particular on life-saving antiretroviral treatment (ART) programmes.
The importance of including youth in the design and implementation of youth policy and programmes is emphasised in the United Nations’ Sustainable Development Goals (SDGs) and World Health Organization guidelines.
As Dr Rebecca Hodes, director of the Aids and Society Research Unit at the University of Cape Town, and her team noted in their study, published in the Journal of the International Aids Society in March 2018, “Understanding what the intended recipients of development initiatives want and need, and partnering with them in their design, adaptation and implementation is imperative to realise the ambitious objectives of the SDGs.”
Drawing dream clinics
Hodes’s team set out to explore young people’s aspirations for health and development, as part of Mzantsi Wakho (“Your South Africa”) a larger, collaborative study on adolescent adherence and access to health care in South Africa. Over the course of two workshops, a total of 25 HIV-positive adolescents, aged 10 -19 were invited to draw, either in small groups or alone, their ideas of a dream clinic. The participants designed 14 clinics in total. Afterwards, they presented them to the rest of the group, and elaborated on their ideas in discussions with researchers.
“The use of drawings in particular is a brilliant way of elevating non-verbal ways of expressing ideas by adolescents living with HIV,” says Dr Nompumelelo Zungu, an HIV/Aids researcher at the HSRC, who served as a technical advisor during the study.
Clear themes emerged from the study, which was carried out in the relatively under-resourced province of the Eastern Cape, including peri-urban and urban areas. The teens drew vegetable gardens, soup kitchens and tuck shops, water tanks and taps, well-stocked pharmacies, and polite exchanges between patients and hospital staff captured in speech bubbles.
The teens’ desire for facilities that could provide patients with meals concurred with previous research, which showed that access to food and water has a direct influence on ART adherence. For example, swallowing numerous large pills is difficult without access to running water. Within the broader Mzantsi Wakho study – an ongoing, longitudinal study on adherence involving 1060 HIV-positive adolescents and 467 controls – adolescents who reported food insecurity were nearly twice as likely to report past-week non-adherence.
Some of the teens’ ideas were unexpected. For example, many drew “folder rooms”, where patient files were well-organised, presumably to reduce waiting times at the clinic.
“I was surprised by how in-touch adolescents are with issues of improving health care,” Zungu said. The results of this study show that adolescents understand how failure to address challenges of infrastructure delivery can impact the quality of care provided in the clinics, she added.
The teens’ drawings also included facilities that other patients might need, including wheelchair rooms, ambulances and mobile services. “Rather than the stereotype of self-centered teenagers, they aspired for a health service that would meet the needs of diverse patients and age-groups,” said Hodes.
Limitations to the study included the fact that, although the groups were intensive, they were small, and were perhaps not representative of other youth or did not give a full picture of youth health aspirations. But, while quantitative analyses of large datasets are important for identifying factors associated with adherence, participatory exercises like the “dream clinic” workshop enable researchers to unearth information that can be difficult to capture through simple surveys. For example, self-reported ART adherence is often inaccurate, as teens are sometimes hesitant to admit even unintentional lapses, due to fear of reprisal or judgment.
Importantly, the results of this survey were triangulated with those of other participatory exercises, as well as the quantitative results of other components of the Mzantsi Wakho study.
Another limitation of the study was that, initially, the participants tended to draw existing health clinics, making it difficult for the researchers to untangle aspiration from depictions of reality in their designs. To address this, the study team invited them to describe what they had drawn to the rest of the group, discussing the facilities in detail.
Today, Hodes and her colleagues continue to work with the teens in a variety of formats. Other creative participatory exercises include comparing eating sweets to taking medication (to elicit the ways in which taking pills are difficult), filling out clinic “report cards” to rate the quality of health-care services, and role-playing cabinet members in a youth health parliament instructing the president on how to meet youth health needs.
“What we found through drawing out teens’ experiences using participatory methods was that they are the principal experts on their own health-care needs and challenges,” Hodes said. “Teens were overwhelmingly aspirational and civic-minded. It is our job now to ensure that their aspirations are not thwarted.”
Author: Andrea Teagle, HSRC science writer