With increasing HIV survival and disability, informal (unpaid) caregivers play a growing role in the well-being of persons living with HIV/AIDS (PLHAs), especially as they enter end of life (EOL). Major goals of palliative care (PC) programs are to enhance the quality of life (QOL) of patients and their families, optimize function, and facilitate patient-family decision making on EOL treatment and discussion with medical providers. African American (AA) injection drug users (IDUs) experience disparities in prevalence and outcomes of HIV, in part due to their suboptimal healthcare and treatment adherence, and have low access to PC. The PI's research indicates most AA IDU PLHAs have caregivers and that they play a key role in their healthcare, treatment adherence and mental health. Our preliminary findings also suggest AA IDU PLHAs' caregivers have major risks for burnout and early cessation of care. Research is needed to understand ways to promote AA IDU PLHAs' HIV care and facilitate discussion and mutual understanding of their treatment goals and EOL care preferences with caregivers and providers to ensure their and their caregivers' QOL. The proposed mixed methods, longitudinal study is based on a social ecological, network resource framework and builds on the study team's novel HIV caregiving research program, pediatric HIV PC clinic program, and research on patient- provider communication on EOL issues. Caregiving can be highly stressful, and costly of financial and social resources, which can lead to caregiver burnout (e.g., role overload, captivity) and cessation of care. Major risks of care cessation include recipients' late stage illness, intensive (personal) care needs, substance abuse and other problem behaviors, and caregivers' lack of social support. Preliminary findings from our recent Beacon study suggest caregivers of were highly involved in AA IDU PLHA care recipients' medical adherence and had a dearth of social support. And 79% of recipients reported pain, which was associated with illicit drug use, posing a potential threat to their caregiving relationship and QOL. The proposed study expands our caregiving research program into new areas of PC, EOL, and caregiver resiliencies. The study will comprise four long- term follow-up assessment of the Beacon sample (up to six years) and new recruits (n=400 dyads, half from Beacon); and a qualitative component exploring PC, EOL, and caregiving resiliencies from caregiver and recipient perspectives. The study will address some of the methodological and theoretical limitations of prior caregiving and PC research. The findings will inform the team's later development of interventions to promote AA IDU PLHA caregivers' and recipients' sustained care and QOL by potentially intervening at the dyad, support network or medical provider level.
Caregivers provide a range of assistance critical to PLHAs' palliative care (PC) and quality of life (QOL). Research is needed to understand how to sustain caregiving and caregivers' QOL through end of life (EOL) of vulnerable African American, injection drug using (IDU) PLHAs. The study represents an obvious next step to the new team's PC, EOL, and caregiving research by identifying barriers and facilitators to sustained HIV care, its impact on QOL, and implications to adult HIV PC practice.
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