title: Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS.
abstract: With the advent of antiretroviral therapies, persons living with HIV/AIDS (PLHIVs) are living longer but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population's informal care at end of life. Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug-using PLHIVs in Baltimore, MD. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs' preference for informal (family or friends) compared to professional care. The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one's main partner (i.e., boy/girlfriend or spouse) as the primary source of informal care, and a support network comprised greater numbers of female kin and persons supportive of the participant's HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Findings suggest that interventions to promote informal end of life care should bolster supportive others' resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long-term care.
authors.affiliation: a Department of Health, Behavior and Society , Johns Hopkins Bloomberg School of Public Health , Baltimore , MD , USA.
authors.forename: Mary M
authors.initials: MM
authors.lastname: Mitchell
authors.forename: Allysha C
authors.initials: AC
authors.lastname: Robinson
authors.forename: Trang Q
authors.initials: TQ
authors.lastname: Nguyen
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Smith
authors.forename: Amy R
authors.initials: AR
authors.lastname: Knowlton
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000208:ethnology; D000328:Adult; D001741:Black or African American / Q000706:statistics & numerical data*; D015142:Baltimore / Q000453:epidemiology; D005260:Female; D015658:HIV Infections / Q000208:ethnology* / Q000628:therapy; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D005791:Patient Care / Q000706:statistics & numerical data*; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000706:statistics & numerical data
keywords: HIV/AIDS; end of life care; illicit drug users; informal caregivers; social support networks