Suchergebnisse

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.

AbstractIntroductionAdolescent girls and young women (AGYW) living with HIV experience poor HIV outcomes and high rates of unintended pregnancy. Little is known about which healthcare provisions can optimize their HIV‐related outcomes, particularly among AGYW mothers.MethodsEligible 12‐ to 24‐year‐old AGYW living with HIV from 61 health facilities in a South African district completed a survey in 2018–2019 (90% recruited). Analysing surveys and medical records from n = 774 participants, we investigated associations of multiple HIV‐related outcomes (past‐week adherence, consistent clinic attendance, uninterrupted treatment, no tuberculosis [TB] and viral suppression) with seven healthcare provisions: no antiretroviral therapy (ART) stockouts, kind and respectful providers, support groups, short travel time, short waiting time, confidentiality, and safe and affordable facilities. Further, we compared HIV‐related outcomes and healthcare provisions between mothers (n = 336) and nulliparous participants (n = 438). Analyses used multivariable regression models, accounting for multiple outcomes.ResultsHIV‐related outcomes were poor, especially among mothers. In multivariable analyses, two healthcare provisions were "accelerators," associated with multiple improved outcomes, with similar results among mothers. Safe and affordable facilities, and kind and respectful staff were associated with higher predicted probabilities of HIV‐related outcomes (p<0.001): past‐week adherence (62% when neither accelerator was reported to 87% with both accelerators reported), clinic attendance (71%−89%), uninterrupted ART treatment (57%−85%), no TB symptoms (49%−70%) and viral suppression (60%−77%).ConclusionsAccessible and adolescent‐responsive healthcare is critical to improving HIV‐related outcomes, reducing morbidity, mortality and onward HIV transmission among AGYW. Combining these provisions can maximize benefits, especially for AGYW mothers.