“Just take your medicine and everything will be fine”: Responsibilisation narratives in accounts of transitioning young people with HIV into adult care services in Australia

ABSTRACT

Young people who have grown up with perinatally acquired HIV in wealthy nations are increasingly transitioning into adult care settings which expect more independence and self-regulation than paediatric care. Drawing on the first qualitative study on growing up with HIV in Australia, this paper examines “responsibilisation” narratives in semi-structured interviews conducted with young people with HIV and their paediatric and adult care providers. Three dominant narratives were identified: responsibilisation as imperative, practice and contest. This suggests that while young people growing up with HIV in an advanced liberal setting such as Australia may value the independence of adult care, and appreciate the need to take responsibility for their health, the practices involved in becoming a responsible health citizen are shaped by individual histories and circumstances, and in some cases, can lead to serious contestation and conflict with care providers. Placing a stronger emphasis on what young people can gain from taking an active role in managing their health may more successfully foster responsibilisation, rather than focusing on what they will lose. Clinicians could benefit from greater support regarding how to engage young people with the elements of responsibilisation likely to resonate more meaningfully at different points in their lives.

KEYWORDS:

• Young people
• antiretroviral therapy
• transition to adult care
• HIV social research
• Australia

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Erratum

Acknowledgements

We are very grateful to the young people who shared their stories with us, the families who supported their participation, and the clinicians who dedicate their professional lives to their care. Thanks also to our supportive advisory committee, representing clinical advisors (Jeffrey Post, Edwina Wright, Michelle Giles) and representatives of the Australasian Society for HIV Medicine, Pozhet: the Heterosexual HIV Service of New South Wales, Positive Life NSW and Youth Empowerment Against HIV/AIDS.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Gilead as an unconditional Research Fellowship; by UNSW Australia as a Research Promotion Grant; and by the Australian Government Department of Health and Ageing, as one of the research projects hosted at the Centre for Social Research in Health.