Growing Up With HIV: Exploring the Experiences of the First Generation of Perinatally Infected Young People in the UK

Dorrell, Judith (2010). Growing Up With HIV: Exploring the Experiences of the First Generation of Perinatally Infected Young People in the UK. PhD thesis The Open University.



This thesis explores the experiences of young people perinatally infected with HIV in the UK. Although advances in medical treatment have made a major difference to the life expectancy of these young people this may not be matched by their 'lived experience' insofar as they face the consequences of a stigmatised disease as well as an uncertain future. This is the first study to critically analyse young peoples' accounts of growing up with HIV in the UK. This thesis considers the experiences of twenty-eight young people between the ages of fifteen and twenty-four recruited from a London hospital. Drawing on Bury's (1982) concept of 'biographical disruption' and the concept of 'critical moments' (Thomson et al. 2002), it explores how HIV affects a young person's biography.

Findings from the study demonstrate that a diagnosis of HIV disrupts biography and this experience is interspersed by 'critical moments' that serve to bring into sharp relief difference and forces young people to continually re-evaluate and make sense of being HIV positive. Young people make sense of disruption in order to construct and maintain a new identity as they become adults; this process is influenced by the stigma attached to HIV as well as by the disease trajectory. They use a range of strategies to adjust to and manage living with a stigmatised identity. This study raises important questions about the impact of HIV on young people, their families and their relationships. It demonstrates that most young people learn to 'pass' (Goffman 1963) as uninfected and conceal their HIV status. They withdraw from social relationships which increases their isolation and loneliness and affects their well-being. Findings also reveal that young people report little support to help them manage the impact of HIV. The study also highlights the urgent need for future research focusing on young people with HIV.

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