Informal HIV caregiving in a vulnerable population: toward a network resource framework

For the impoverished and often stigmatized communities most affected by HIV/AIDS, needs for informal caregiving present tremendous demands on already limited resources. Traditional theoretical frameworks emphasize care needs as driving informal caregiving. The proposed theoretical framework emphasizes microsocial processes that may affect informal caregiving among economically disadvantaged populations. The study examined: (1) network structural factors (homophily) that may affect availability of ties and local sociocultural expression of ties (social roles, behavioral norms) and (2) the role of financial resources in enabling informal caregiving. Low income, African American injection drug using persons living with HIV/AIDS (PLHAs) and their primary HIV supporters were interviewed. Supporters were predominantly female (71%), consanguineal kin (59%) and partners or friends (41%). Compared to the general US population, supporters were disproportionately HIV-infected, drug using, African Americans of poor health and low socioeconomic status. Supporters who perceived their PLHA tie needed informal care, compared to those who perceived no care need, were more than twice as likely to report a history of drug use, functional limitation (IADLs), higher income, and PLHA's financial reliance. Supporters' reported care provision was associated with their financial resources, but not PLHAs' health status. PLHAs' reported care receipt was associated only with their health status. HIV supporters' reported care provision was affected by financial factors, consistent with the proposed theoretical framework, while PLHAs' perceptions of care receipt conformed to traditional "needs"-based frameworks of caregiving. Results suggest that programs are needed to bolster network financial resources of disadvantaged populations affected by HIV to promote and sustain their informal HIV caregiving. Findings may aid in the understanding of informal caregiving as a social process. Network resource-oriented research may allow for ascertainment of community caregiving capacity, and guide the development of interventions to promote HIV caregiving in disadvantaged populations.