Released: January 2014
Young people growing up with HIV
Asha Persson and Christy Newman
Young people growing up with HIV are an emerging sub-population in the global epidemic. The first Australian study to explore the experiences of children and young people with perinatally acquired HIV in Australia has been conducted by the Centre for Social Research in Health in collaboration with the Paediatric HIV Service at the Sydney Children's Hospital. The study includes interviews with young people and their clinicians in paediatric and adult health care settings. A key aim of the study is to understand the issues and challenges facing this
population, as well as the clinicians who care for them, as they transition from childhood to early adulthood and from paediatric to adult care. The study is generating unique empirical knowledge, which can contribute to the continued development of service provision and to future research directions in relation to this population in NSW and beyond, knowledge which may also be relevant to understanding children’s experiences of chronic illnesses more broadly.
In the first article to be published from this study, Caring for Underground Kids, we examine the perspectives of the clinicians who work with these young people and compare these with the largely US-based research literature, which typically focuses on dysfunctions, sexual risks and negative public health outcomes in this population. We show that although the clinicians we interviewed raised many of the same issues found in the US literature, there was far greater emphasis on the well-being of their young clients and on the social
complexities and impact of their condition, providing a narrative that departs from the usual framing of young people growing up with HIV. We conclude that future research could usefully contribute to a richer understanding of these young people by focusing on stories of success, survival and resilience. A second paper is now in press, also reporting on our interviews with clinicians, but focused on the challenges of transition into adult care. A further two publications are currently in progress, reporting key findings from the interviews conducted with young people with perinatally acquired
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Persson, A., Newman, C., & Miller, A. (2014). Caring for ‘underground’ kids: qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia. International Journal of Adolescence and Youth. Advance online publication. http://dx.doi.org/10.1080/02673843.2013.866149
Newman, C. E., Persson, A., Miller, A., & Cama, E. J. (in press). Bridging worlds, breaking rules: clinician perspectives on transitioning young people with perinatally acquired HIV into adult care in a low prevalence setting. AIDS Patient Care and STDs.