Data management instruments to protect the personal information of children and adolescents in sub-Saharan Africa

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

Investigating the psychometric properties of a South African adaptation of the Boston Naming Test : evidence for diagnostic validity from a memory clinic population

Includes abstract.The Boston Naming Test (BNT) is a popular confrontation naming test that is frequently used in the detection of naming deficits in Alzheimer's disease (AD). However, the test may not be appropriate when used outside of North America due to the influence of varying word frequency and familiarity between different cultures and languages. This study investigated the diagnostic validity of a South African 15-item adaption of the BNT (the BNT-SA-SF) in a Cape Town memory clinic population of patients with dementia and healthy, community-dwelling control participants. Between-groups comparisons, receiver operating characteristic (ROC) analyses, and other diagnostic efficiency statistics were used to assess the test's discriminative capacity between patients with AD (n = 46), patients with other types of dementia (n = 23), and controls (n = 51), matched on key demographic variables. The AD group performed worse than patients with other types of dementia and controls on the BNT-SA-SF, and patients with other types of dementia scored more poorly than controls. The test showed the most significant discriminative capacity between patients with AD and controls, however. A general linear model examining the effects of socio-demographic variables on test performance found that BNT-SA-SF performance was not significantly affected by the socio-demographic characteristics of participants, including age, education, language, or socio-economic status, with the exception that men appear to achieve higher scores than women. Further, an item analysis identified a number of problematic items and suggestions are made concerning how to deal with these in future studies. Preliminary normative data stratified by sex and education are presented. Results support the clinical utility of the BNT-SA-SF as a screening test to aid in the diagnosis of AD from normal aging with older adults in South Africa. This study is a valuable step forward in the ongoing attempt to provide culturally appropriate and valid neuropsychological tests and norms for clinical and research purposes in South Africa. Future studies should examine the functioning of the test in larger samples, representative of the other major population and language groups in South Africa

Optimising engagement in a digital parenting intervention to prevent violence against adolescents in Tanzania: protocol for a cluster randomised factorial trial

Abstract Background Violence against adolescents is a universal reality, with severe individual and societal costs. There is a critical need for scalable and effective violence prevention strategies such as parenting programmes, particularly in low- and middle-income countries where rates of maltreatment are highest. Digital interventions may be a scalable and cost-effective alternative to in-person delivery, yet maximising caregiver engagement is a substantial challenge. This trial employs a cluster randomised factorial experiment and a novel mixed-methods analytic approach to assess the effectiveness, cost-effectiveness, and feasibility of intervention components designed to optimise engagement in an open-source parenting app, ParentApp for Teens. The app is based on the evidence-based Parenting for Lifelong Health for Teens programme, developed collaboratively by academic institutions in the Global South and North, the WHO, and UNICEF. Methods/design Sixteen neighbourhoods, i.e., clusters, will be randomised to one of eight experimental conditions which consist of any combination of three components (Support: self-guided/moderated WhatsApp groups; App Design: sequential workshops/non-sequential modules; Digital Literacy Training: on/off). The study will be conducted in low-income communities in Tanzania, targeting socioeconomically vulnerable caregivers of adolescents aged 10 to 17 years (16 clusters, 8 conditions, 640 caregivers, 80 per condition). The primary objective of this trial is to estimate the main effects of the three components on engagement. Secondary objectives are to explore the interactions between components, the effects of the components on caregiver behavioural outcomes, moderators and mediators of programme engagement and impact, and the cost-effectiveness of components. The study will also assess enablers and barriers to engagement qualitatively via interviews with a subset of low, medium, and high engaging participants. We will combine quantitative and qualitative data to develop an optimised ParentApp for Teens delivery package. Discussion This is the first known cluster randomised factorial trial for the optimisation of engagement in a digital parenting intervention in a low- and middle-income country. Findings will be used to inform the evaluation of the optimised app in a subsequent randomised controlled trial. Trial registration Pan African Clinical Trial Registry, PACTR202210657553944. Registered 11 October 2022, https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=24051