‘Yummy or crummy?’ The multisensory components of medicines-taking among HIV-positive youth

Abstract

The global rollout of Antiretroviral Treatment (ART) has revealed an urgent need to understand the medicines-taking practices of HIV-positive adolescents. In the last decade, the literature on the social determinants of health has broadened the evidence-base on ART adherence. Interdisciplinary studies have expanded conceptions of medicines-taking beyond clinical or health systems frameworks, recognising the importance of socio-structural conditions and of patients' beliefs and experiences. Participatory research techniques which foreground the perspectives of adolescents provide greater insights still into their adherence. This article explores the use of participatory methods within a broader study on the social determinants of ART adherence among HIV-positive adolescents in South Africa. We describe how participatory methods were incorporated into this study (n = 1,059 in the quantitative baseline). We focus on an exercise, 'Yummy or crummy?', that explored the multisensory dimensions of medicines-taking, including their colour, smell, shape, and delivery mechanism. We describe two principal findings: first, adolescents' preference for greater understanding of the chemical workings of medicines, manifested in their preferences for colour, taste and shape of medicines; and second, the vital relationship between sensory preferences and the social imperatives of discretion and confidentiality regarding HIV-status.

“Those People Motivate and Inspire Me to Take My Treatment.” Peer Support for Adolescents Living With HIV in Cape Town, South Africa

“… 9 Stigma and a lack of psychosocial support, as well as the challenges of living with HIV can further complicate the developmental transition of adolescence for ALHIV. 8 The findings of this study highlight the generally positive perspectives of both adolescents living with HIV (ALHIV) and caregivers of ALHIV in Cape Town, South Africa regarding the role of peer support groups in both psychosocial and ART adherence for ALHIV. This study is unique in that it provides in-depth qualitative data regarding caregiver and adolescent views on the importance of peer support for ALHIV.…”

“…27 For adolescents, essential elements of living successfully with HIV are adherence support; psychosocial support; a stigma-free home, community and school; and the freedom to disclose one's HIV status without fear of consequences. 8,10,13,15,17 For ALHIV in Cape Town, South Africa, some but not all of these elements are in place. Notably, the peer support groups provided a safe haven for adolescents, who reported feeling comfort and safety from stigma within the support group.…”

“… 9 ALHIV are more likely to experience family instability, co-occurring mental illness, and bullying more frequently than same-age peers who are not living with HIV. 8 ALHIV in Cape Town self-reporting such behavioral health risks were more likely than their counterparts to have suboptimal ART adherence. 7 One study found that ALHIV also have poor functional competence, self-esteem and motivation, higher levels of disruptive behavior and depression than their HIV uninfected peers.…”

“… 6 , 7 Common challenges to adherence include limited linkage to healthcare, low retention in treatment, and poor psychological health linked to HIV stigma and fear of disclosure. 8 Adolescence is a time of development and transition, and a period when psychosocial and health-related challenges are common. 9 ALHIV are more likely to experience family instability, co-occurring mental illness, and bullying more frequently than same-age peers who are not living with HIV.…”

Pesky metrics: the challenges of measuring ART adherence among HIV-positive adolescents in South Africa

“…Calls for 'holistic' or 'comprehensive' programmes to promote better health outcomes among adolescents recognise the imperatives of socio-economic, relational, and structural factors (World Health Organization, 2014). Alongside the greater rhetorical focus on the social dimensions of health, there is a growing commitment to including representatives of 'target populations'the intended recipients of healthcare interventionsin the design and implementation of these programmes (Hodes et al, 2018a;Hodes et al, 2018b). To date, design and implementation of programming to improve adherence has rarely included the direct involvement of medicines-users.…”