What informal caregivers actually do: The caregiving skills of partners of men with AIDS

Abstract

This study draws on the narrative accounts of caregiving events provided by 100 HIVnegative and HIV-positive partners of men with AIDS during their partners' illness. The narratives contain rich detail about the wide range of skills that these men developed over the course of their caregiving. These skills, which go beyond the kinds of assistance with daily activities that normally comprise caregiving assessments, pertain to the provision of: emotional support, hands-on care, clinical care, high tech nursing and health care advocacy. Because these narratives depict caregiving in its naturally occurring context, it is also possible to describe ways in which the context of caregiving, including the partners' relationship, the clinical course of the illness and changes in the meaning of the illness, influence the development of these caregiving skills. Finally, the narratives provide insight not only into the burdens of care, but also into its often overlooked positive aspects.