Whilst 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.
IntroductionIn light of moves towards online provision of HIV services, e.g. self-testing, or online self-sampling, the GMI Partnership wanted to understand whether there was a way in which community based organisations could support and incorporate trends towards online provision of services, as well as understand the knowledge of at risk communities in light of changes, through the provision of community coaching on self-testing and self-sampling. The GMI Partnership provides sexual health promotion and HIV prevention services to 76,000 high risk MSM across London each year, as well as in-depth interviews with at least 4,000 MSM each year.Methods2888 online surveys identified existing literacy re- HIV self-testing and self-sampling in MSM (targeted via dating apps.) Recognising that literacy was limited, GMI provided community coaching on self-testing with MSM in high risk venues, to identify whether the intervention was more likely to engender comfort with new technologies (200 quantitative interviews).ResultsHIV literate MSM do not understand the difference between self-testing and self-sampling.The community coaching model ensures high levels of confidence and acceptability in self-testing technologies.DiscussionCommunity testing models can complement self-testing and self-sampling.There will always be clients for whom online provision of new technologies will not work.Scalability of the model within African groups (community based intervention).
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