Recent data protection regulatory frameworks, such as the Protection of Personal Information Act (POPI Act) in South Africa and the General Data Protection Regulation (GDPR) in the European Union, impose governance requirements for research involving high-risk and vulnerable groups such as children and adolescents. Our paper's objective is to unpack what constitutes adequate safeguards to protect the personal information of vulnerable populations such as children and adolescents. We suggest strategies to adhere meaningfully to the principal aims of data protection regulations. Navigating this within established research projects raises questions about how to interpret regulatory frameworks to build on existing mechanisms already used by researchers. Therefore, we will explore a series of best practices in safeguarding the personal information of children, adolescents and young people (0-24 years old), who represent more than half of sub-Saharan Africa's population. We discuss the actions taken by the research group to ensure regulations such as GDPR and POPIA effectively build on existing data protection mechanisms for research projects at all stages, focusing on promoting regulatory alignment throughout the data lifecycle. Our goal is to stimulate a broader conversation on improving the protection of sensitive personal information of children, adolescents and young people in sub-Saharan Africa. We join this discussion as a research group generating evidence influencing social and health policy and programming for young people in sub-Saharan Africa. Our contribution draws on our work adhering to multiple transnational governance frameworks imposed by national legislation, such as data protection regulations, funders, and academic institutions.

Summary This paper presents empirical and methodological findings from an art-based, participatory process with a group (n = 16) of adolescent and young advisors in the Western Cape Province of South Africa. In a weekend workshop, participants reflected on their participation in 12 years of health and development-related research through theatre, song, visual methodologies and semi-structured interviews. Empirical findings suggest that participants interpreted the group research encounter as a site of empowerment, social support and as a socio-political endeavour. Through song, theatre and a mural illustration, they demonstrated that they value ‘unity’ in research, with the aim of ameliorating the conditions of adolescents and young people in other parts of South Africa and the continent. Methodological findings document how participants deployed art-based approaches from South Africa’s powerful history of activism, including the struggle against apartheid, the fight for anti-retroviral therapy and more recent social movements towards decolonization.

Long-acting injectable anti-retroviral therapy (LAART) may overcome barriers to long-term adherence and improve the survival of adolescents and young people living with HIV (AYLHIV). Research on the acceptability of LAART for this age-group is limited. We asked 953 AYLHIV about their preferred (theoretical) ART mode of delivery (pill, injectable, or other) in 2017–2018, before LAART was available or known to AYLHIV in South Africa. One in eight (12%) AYLHIV preferred LAART over single or multiple pill regimens. In multivariate analyses, six factors were associated with LAART preference: medication stock-outs (aOR = 2.56, 95% CI 1.40–4.68, p = 0.002), experiencing side-effects (aOR = 1.84, 95% CI 1.15–2.97, p = 0.012), pill-burden (aOR = 1.88, 95% CI 1.20–2.94, p = 0.006), past-year treatment changes (aOR = 1.63, 95% CI 1.06–2.51, p = 0.025), any HIV stigma (aOR = 2.22, 95% CI 1.39–3.53, p ≤ 0.001) and recent ART initiation (aOR = 2.02, 95% CI 1.09–3.74, p = 0.025). In marginal effects modelling, 66% of adolescents who experienced all factors were likely to prefer LAART, highlighting the potential high acceptability of LAART among adolescents and young people living with HIV struggling to adhere and have good HIV treatment outcomes. Adolescent boys who reported high ART pill burden were more likely to prefer LAART than their female peers in moderation analyses, suggesting that LAART may be particularly important to improve treatment outcomes among male AYLHIV as they become older. Adding LAART to existing treatment options for AYLHIV, particularly higher risk groups, would support AYLHIV to attain and sustain viral suppression—the third 95, and reduce their risk of AIDS-related mortality.