Layered vulnerability and researchers’ responsibilities: Learning from research involving Kenyan adolescents living with perinatal HIV infection

Abstract

Background Carefully planned research is critical to building policies and interventions to counter the physical, psychological and social challenges young people living with HIV/AIDS regularly face, without increasing burdens. Through embedded social science research in an ongoing longitudinal cohort study on neurobehavioural outcomes in Adolescents Living with HIV/AIDS in Kenya, we develop an account of researchers’ responsibilities towards young people involved in research, drawing on concepts of vulnerability and agency in the literature as ‘interacting layers’. Methods Using qualitative research methods of in-depth interviews, group discussions, observations and a participatory workshop, we explored key stakeholders’ views and experiences of vulnerability and resilience for young people living with HIV/AIDS. Our enquiry included domains of home and community, school, health clinic and research participation in Kilifi County in Kenya. The study involved 62 policy, provider, research and community-based stakeholders, including 27 young people living with HIV/AIDS and participating in research. Three linked research phases supported an iterative process of learning and enquiry, drawing on Framework Analysis. Results Young people faced many forms of vulnerability related to risks of stigmatisation across health clinics, schools and in homes. Sources of vulnerability were interrelated and cross sectoral with varying experiences of vulnerability and capacity for resilience that were importantly underpinned by access to social and economic resources. Interacting layers of vulnerability acted to progressively undermine wellbeing, leading to clusters of increasingly serious physical and mental health, social, educational and economic outcomes. Such vicious circles of vulnerability, or cascades, could be reversed, with positive inputs within and across sectors building resilience and leading to positive outcomes. Experiences of research participation reflected a potential to increase forms of vulnerability but importantly also to promote resilience for many young people. Conclusions The potential for experiences of research participation to exacerbate vulnerability and strengthen resilience for young people living with HIV/AIDS, through contributing to positive or negative cascades, has important implications for research planning. We argue that researchers’ responsibilities include addressing structural causes of vulnerability for research participants living with HIV, giving examples of strategies, and for the importance of embedded empirical ethics research to identify context-specific risks and opportunities.