Helping, the perspectives of the terminally ill person with AIDS and family members
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Little information exists about AIDS family caregiving. Qualitative methodology was utilized to illuminate this poorly understood phenomenon from the perspective of the people experiencing it. The methodology was chosen to generate accurate knowledge about how people with AIDS (PWAs) can be better understood and helped by their family-member caregivers. Data were analyzed from helping and relationship perspectives. From a helping perspective data were organized into these categories: (1) what the person with AIDS wants, (2) how the family-member caregiver helps, (3) factors that interfere with helping and accepting help, and (4) factors that enhance helping and accepting help. From a relationship perspective data were organized into these categories: (1) the person with AIDS/caregiver relationship, (2) instrumental and social support, (3) changing roles and stress, and (4) reciprocation. The study's findings help to fill a gap in the literature by providing in-depth insight into the needs of PWAs as described by themselves, into the helping family-member caregivers provide as described by these caregivers and PWAs, and the factors that they perceive to interfere with and enhance helping and accepting help. The findings of the study suggest that for caregivers to better help family members with AIDS the needs of both must be more fully met. The value of the study includes: its heuristic value, and its utility for counseling people with AIDS and their families, the provision of a better understanding about relationships between people with AIDS and those closest to them, its utility as a reference for newly diagnosed PWAs and their caregivers. The study can contribute to the increased sensitivity of therapists, family, friends, health care professionals and co-workers of people with AIDS. It can serve to reduce fears and misunderstanding about PWAs through the insights from people who have been and are living day-to- day with AIDS.