Introduction

The principle of ‘Greater Involvement of People Living with or Affected by HIV/AIDS (PLHA)’ declared at the 1994 Paris AIDS Summit provided widespread international commitment (in rhetoric at least) to the participation of people living with HIV in tackling the epidemic at all levels. Organisations and networks of PHLA have grown rapidly in eastern and southern Africa in recent years in order to campaign for their rights to health. Research in Tanzania and Namibia has revealed that care is often a two-way process of both giving and receiving care, based on reciprocal, interdependent relations between PLHA and family members (Evans and Thomas, 2009). PLHA may provide home-based care for partners, children, other family members and peers with HIV, as well as receiving care themselves. Such interdependent caring relations blur conventional boundaries and assumptions about the needs and interests of ‘care givers’ and ‘care recipients’, while simultaneously revealing interconnected dependencies and power inequalities at a range of spatial scales.

This chapter adopts an ethics of care perspective to explore PLHA’s caring relations and participation within families and communities in Tanzania and Uganda and draws partly on ideas discussed in Evans and Atim (2011). We discuss the findings of three qualitative studies. The first two studies (conducted by Ruth Evans) focused on children’s caring roles in families affected by HIV; the first was based on interviews with 20 mothers/female relatives living with HIV, 22 young people who cared for them and 13 non-governmental organisation (NGO) workers in rural and urban areas of Tanzania. This was part of a larger study funded by the UK Economic and Social Research Council that investigated the experiences, needs and resilience of children caring for parents and relatives with HIV in Tanzania and the UK (see Evans and Becker, 2009 for further information). The second study was focused on sibling care giving in child- and youth-headed households in Tanzania and Uganda, based on interviews, focus groups and participatory workshops with a total of 73 participants, comprising 17 orphaned children and young people who were caring for their siblings, 17 of their younger siblings and 25 NGO workers and 14 community members. This study was funded by the University of Reading and the Royal Geographical Society (with the Institute of British Geographers) (see Evans, 2011; 2012 for further information).