Sources of Support in a Sample of HIV-Affected1Older Minority Caregivers

Abstract

Since more and more family caregivers of persons with HIV disease are parents and grandparents, older persons may be responsible for the well-being of ill or orphaned family members at a time when they may be at risk for their own health and social losses. Re searchers conducted qualitative interviews with twenty older minority informal caregivers of HIV-infected persons to explore their experiences with seeking and receiving informal social support. There were two sources of social support: support from family and friends external to the care dyad and support from the relationship with the HIV-positive care recipient. There was very little support sought or received outside the family of the caregivers; this was primarily because their decisions about disclosing the HIV diagnosis precluded their asking for social support specific to the HIV caregiving. From the caregivers' perspective the most common source of support was not “social” or human; rather, it was strength that came from their spiritual and religious lives or from within themselves. These findings highlight the social isolation of this population, suggesting the need for more awareness and aggressive outreach from the helping professions. More research is needed to determine how decisions regarding HIV disclosure are made, how caregivers sustain support sources that are not specific to HIV caregiving, and how the strong mutual relationship with the HIV-infected care recipient affects coping and bereavement.