Sustaining the relationship: women's caregiving in the context of HIV disease

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.