Caregiver burden: Associations with instrumental and social support among informal caregivers of people living with HIV/AIDS

Background: Informal caregivers of people living with HIV/AIDS (PLWHA) often have a multitude of stressors and great psychological distress, referred to as caregiver burden. Based in part on the construct of stress proliferation by Pearlin and colleagues, we hypothesized that caregiver burden would be associated with instrumental and emotional social support provided by the PLWHA and other members in the caregiver's network. Methods: Data were collected as part of the Action through Resources and Knowledge (ARK) study that was conducted in Baltimore, MD from 2002-2005 and recruited HIV seropositive individuals along with their informal caregivers to answer questions regarding health status, service use, and characteristics of their social networks. The current analyses use data from 215 informal caregivers who were nominated by PLWHAs participating in the study. Caregivers were predominantly African American (89.9%) and slightly more than half were female (56.9%). Results: Multiple linear regression analyses indicated that after controlling for demographic characteristics, health status, and the relationship between PLWHA and caregiver, barriers that informal caregivers encounter in providing care to the PLWHA were significantly associated with greater caregiver burden, while the percent of the caregiver's network who provided emotional support was associated with less burden. Conclusions: These results suggest that caregiver burden is influenced not by the amount of time or the number of tasks that the caregiver performs for the PLWHAs, but the emotional circumstances of care provision. Also, we found that emotional support from social network members, rather than instrumental support, provided protection from greater caregiver burden.