AIDS family caregiving: transitions through uncertainty

The purpose of this study was to describe the experience of AIDS family caregiving. Grounded theory provided the methodological basis for qualitative data generation and analysis. Extensive interviews were conducted with 53 individuals (lovers, spouses, parents of either adults or children with AIDS, siblings, and friends) who were taking care of a person with AIDS at home. Relevant features of the social context of AIDS family caregiving were explored. Findings revealed the basic social psychological problem of Uncertainty, a core category of Transitions Through Uncertainty, and five subcategories: Managing and Being Managed by the Illness; Living With Loss and Dying; Renegotiating the Relationship; Going Public; and Containing the Spread of HIV. Stages and strategies of each subcategory detailed individuals' responses to the challenges of AIDS family caregiving and elaborated the day-to-day experiences. Uncertainty as a critical challenge for individuals and families facing life-threatening illness is discussed in light of recent research.