Mental health of familial/informal caregivers to persons living with advanced HIV/AIDS in the community

Background: Since HIV/AIDS' emergence, families and significant others have been involved in patient care. Treatment advances have transformed HIV/AIDS from an acute to chronic disease, shifting care from hospital to community and home settings. Nonetheless, HIV/AIDS remains an important cause of morbidity and mortality in impoverished and resource-poor communities and family and friends are relied upon to provide necessary care and assistance throughout the disease trajectory. Methods: Data collected for an NINR-funded longitudinal investigation of community-based HIV/AIDS care at the end-of-life. In-depth interviews and surveys conducted in English/Spanish with adult HIV/AIDS patients and their informal caregivers (94 dyads): 46% Hispanic, 43% black non-Hispanic, 8% White non-Hispanic. Caregivers: 35% spouses/significant other, 20% friends, 16% adult children, 16% siblings. Many, 43%, provided care 5+ years. Results: At baseline, caregivers' MHI-5 score of 66.19 (range 0-100), suggests probable mental health issues. In post-death interviews, bereaved caregivers were grief-stricken: 88% thought about deceased almost all of the time, 88% missed deceased almost all the time, 75% could not avoid thinking about deceased, 88% stayed awake most of the night, 62% frequently felt depressed , 62% felt anxious, unsettled. Narrative analysis of caregivers' accounts provided insights into the sources of stress experienced during careprovision. Post-death accounts documented distressing events and interactions with the health care team during patient's final days. Conclusions: Study findings document long-lasting and severe mental health consequences of HIV careprovision. Given caregivers' role in community-based care, attention needs to be focused on developing supportive services tailored to address HIV/AIDS caregivers' needs.