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19 - Young people's caring relations and transitions within families affected by HIV

Published online by Cambridge University Press:  07 September 2022

Jane Ribbens McCarthy
Affiliation:
The Open University, Milton Keynes
Val Gillies
Affiliation:
University of Westminster
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Summary

Introduction

This chapter provides insight into young people's caring relations and transitions within what is often considered a particularly ‘troubling’ familial context in both the global North and South: living with HIV. I analyse the findings from two qualitative studies of young people's caring roles in families affected by HIV in the UK, Tanzania and Uganda from the perspective of a feminist ethics of care, emotion work and life course transitions.

Since the 1990s, research in the global North has documented the roles and responsibilities that children undertake within families and the negative (and sometimes positive) outcomes that caring for a parent with an impairment or chronic illness may have on their education, health and emotional well-being, leisure activities, social lives, and transitions to ‘independent adulthood’ (Aldridge and Becker, 2003). This has resulted in growing policy and practice recognition of ‘young carers’ as a social category, and such children in the UK now have specific legal rights both as ‘children’ and as ‘carers’ (Becker, 2007). Despite the significant attention focused on young carers in social policy and research, young people's roles in caring for family members affected by HIV are often invisible, due to the stigma surrounding HIV. This means that parents are reluctant to disclose their status to others and seek to ensure that their care needs are met within the family, increasing the reliance on children. The groups most affected by HIV in the UK are men who have sex with men of all ethnicities and ‘African-born’ heterosexual men and women from countries with a high prevalence of HIV (HPA, 2010). For African migrants in the UK, living with HIV is exacerbated by restrictive immigration and asylum policies, differential entitlements to healthcare and welfare support, racial discrimination, and wider processes of social exclusion that are detrimental to the well-being of migrant families (Doyal and Anderson, 2005).

In communities affected by the HIV epidemic in Eastern and Southern Africa, young people are increasingly relied on to provide care for chronically ill parents and relatives (Robson et al, 2006), including siblings, elderly grandparents and other community members who have experienced the loss of their usual carers (Evans, 2005; Skovdal, 2011).

Type
Chapter
Information
Family Troubles?
Exploring Changes and Challenges in the Family Lives of Children and Young People
, pp. 233 - 244
Publisher: Bristol University Press
Print publication year: 2013

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