Young caregivers of mothers with HIV: Need for supports

Data from a qualitative longitudinal study of 55 women living with HIV in one Midwestern state reveal that the young children of such women provide vital caregiving for them. The 43 mothers (of the 55 women) in the parent study have 133 living children among them, of whom nearly all were minors when their mothers were first diagnosed with HIV. At data collection, 59 of these children were still aged 18 or under. This qualitative study examines the children of seven of these women by exploring the interview narratives in which they describe caregiving tasks performed by their children. Utilizing research literature from a variety of perspectives on children and caregiving, we examine the different developmental stages of the caregiving children and the impacts of these largely invisible responsibilities on their lives. Finding a dearth of supportive resources available to the children, we speculate about interventions that could appropriately assist them emotionally, developmentally and physically. Legitimation of young caregivers' needs will require wider recognition of caregiving and its social consequences, recognition of the sparse institutional supports that currently assist these children, and creativity in mobilizing stronger informal support systems for individual children and whole families affected by HIV/AIDS.