Power to participants: methodological and ethical reflections from a decade of adolescent advisory groups in South Africa.

ABSTRACTWhilst the HIV response has made significant progress in increasing representation of adults affected by HIV, the meaningful inclusion of children and adolescents has lagged. But this may be a pivotal moment of change. We report on a decade of conducting adolescent advisory groups in South Africa, to reflect on youth advisory processes. Data was collected from 2008 to 2018 from adolescent advisors (n = 60) and researchers (n = 25), and included feedback sessions, social media, anonymous "post-boxes" and interviews. Findings include the value of adolescent involvement in multiple stages of research co-creation and engagement in policy processes, the need for a safe environment and supporting adolescents living in extreme vulnerability. We also discuss the reconfiguring of power and personal relationships, and logistical and financial needs of adolescent advisory groups. Findings suggest that adolescent co-creation of research is feasible, even with very vulnerable adolescents, although ethical considerations need to be carefully addressed. Benefits include increased methodological rigour, enhanced adolescent acceptability of research and the recalibration of research dynamics for the empowerment of their target beneficiaries. Future studies could benefit from meaningfully involving adolescents through youth advisory groups.

'Yummy or crummy?' The multisensory components of medicines-taking among HIV-positive youth.

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.

The stuff that dreams are made of: HIV-positive adolescents' aspirations for development.

BACKGROUND: The Sustainable Development Goals (SDGs) commit to strengthening collaborations between governments and civil society. Adolescents are among the key target populations for global development initiatives, but research studies and programmes rarely include their direct perspectives on how to promote health and wellbeing. This article explores how both the methods and the findings of participatory research provide insights into adolescents' aspirations across the domains of health and social development. It investigates how adolescents conceive of health and social services as interconnected, and how this reflects the multisectoral objectives of the SDGs. METHODS: This research was conducted within a longitudinal, mixed-methods study of HIV-positive adolescents (n = 80 qualitative participants, n = 1060 quantitative interviews). Between November 2013 and February 2014, a participatory exercise - the "dream clinic" - was piloted with 25 adolescents in South Africa's Eastern Cape. Key themes were identified based on the insights shared by participants, and through visual and thematic analysis. These findings were explored through a second participatory exercise, "Yummy or crummy? You are the Mzantsi Wakho masterchef !," conducted in January 2016. Findings are described in relation to emerging quantitative results. RESULTS: Mixed methods explored associations between access to food, medicines, clean water and sanitation in HIV-positive adolescents' aspirations for development. The exercises produced practicable recommendations for innovations in development, based on associations between healthcare, food security, clean water and sanitation, while illustrating the value of partnership and collaboration (the objective of SDG17). Findings capture strong interlinkages between SDGs 2, 3 and 6 - confirming the importance of specific SDGs for HIV-positive adolescents. Study results informed the objectives of South Africa's National and Adolescent and Youth Health Policy (2017). CONCLUSIONS: Participatory research may be used to leverage the perspectives and experiences of adolescents. The methods described here provide potential for co-design and implementation of developmental initiatives to fulfil the ambitious mandate of the SDGs. They may also create new opportunities to strengthen the engagement of adolescents in policy and programming.

Negotiations of Blame and Care among HIV-positive Mothers and Daughters in South Africa's Eastern Cape.

Research delineates two epidemiological categories among HIV-positive adolescents: those who contract the virus sexually and those who inherit it as infants. In this article, we are interested in how tacit inferences about adolescents' mode of infection contribute to their experiences of HIV-related blame, and their ability to achieve care, in their intimate, everyday settings. The analysis arises from ethnographic research with 23 HIV-positive adolescents living in South Africa's Eastern Cape. From these, we draw particularly on the narratives of four HIV-positive teenage girls and their HIV-positive mothers. The article explores the social stakes entailed in ascriptions of adolescents' mode of infection, particularly in terms of how blame was allocated between mothers and daughters. It further considers how these families have sought to negotiate repudiation and thereby sustain intergenerational care. The article furthers limited research on the life projects and dilemmas of this HIV-positive adolescent cohort.

Redeeming Lost Mothers: Adolescent Antiretroviral Treatment and the Making of Home in South Africa.

In this article, we explore how adolescent antiretroviral treatment (ART) might be signified to repair sociality in Eastern Cape homes that have been ruptured by HIV/AIDS and maternal loss. The post-apartheid period has exposed these families to new forms of social fragmentation, propelled by the disintegration of wage labor, declining marriage rates, and a rampant HIV/AIDS epidemic. Drawing on eight months of ethnographic fieldwork (August 2013-April 2014), we show that in the homes of some adolescents born with HIV, these present-day domestic ruptures were discursively connected to the past shortcomings of their dead and absent mothers. In some familial narratives lost mothers were accused of disobeying their elders, neglecting their children, and flouting custom; their social transgressions were made manifest in their child's inherited HIV. By signifying adolescent ART-taking as an enactment of the discipline and care purportedly absent in their mothers, these families might also attempt to imbue ART, beyond its biomedical function, as a means of social repair.