The conceptualization and treatment of HIV is changing from an acute disease requiring hospital says, to a chronic illness which allows, in the absence of acute exacerbations, the PWH to live in the community. But this living is inexorably compromised by the illness, eventually making the PWH's life and the illness indistinguishable, and requiring the increasing assistance of a caregiver (CG), someone either family, or partner/spouse or friend who undertakes to help the PWH live while dying. HIV is rapidly becoming a minority disease. When being a minority equates with a disadvantaged living situation, caregiving can strain an already over burdened living situation. To make living in the community possible and to reduce adverse consequences for both the CG and the care receiver (CR). We need to understand the practice, meaning, and context of African American caregiving for PWH. The goal of this proposal is to describe the practice of caregiving for African Americans with HIV. Drawing on an established network of contacts within Detroit's African American HIV community, we propose to study the role of those whom the PWH designates as CG in helping the CR live while dying. In helping the CR do so, CGs give tremendously of themselves-often with adverse consequence, e.g. sufering HIV related stigma. Living while dying with a chronic illness requires the assistance a CG who helps the CR manage social relationships, the meaning of the illness, practical concerns, other responsibilities, and health maintenance. As lived experience, caregiving is highly cultural. What we know of caregiving comes largely from studies of white middle class populations. Research in gerontology has identified ethnic differences in caregiving. To understand the practice, meaning, and context of caregiving we need to attend to race/ethnic differences. This information can form the basis of interventions to minimize excessive disability for both CG and CR, and contribute to household based tertiary prevention efforts. This research will draw from what is known about white PWHs and from gerontology to help understand African American caregiving for PWH. The proposed 42 month study will describe caregiving for African American adults with HIV. The project is noteworthy because it brings to bear concepts and theory from a long tradition of gerontological research and from practice theory in Anthropology. Importantly, it uses already existing links to this population. Employing primarily in-depth, open- ended interviews, supplemented by standardized assessment instruments, it will use a practice theory perspective to describe the caregiving practices, beliefs and culturally defined resources of 96 CGs of 48 men and 48 women PWHs. We conceptualize caregiving as an interactive, dynamic experience and will thus include the CR in our data collection and analysis (n=192). The major substantive contributions of the proposed study will be: (1) empirically describe for the first time African American caregiving for HIV; (2) to contribute significantly to designing culturally appropriate community based services supporting caregiving; and to removing barriers to the natural support system in the African American community; and (3) to bring the concepts of gerontology and the perspective of practice theory to bear on the understanding of HIV caregiving.
