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Literature on health-related quality of life (HRQOL) has focused on people living with chronic conditions, with less attention given to HRQOL among informal caregivers. We used cross-sectional dyadic data from both care recipients (CR) living with HIV and the person they identified as their primary informal (unpaid) caregiver (CG) to identify psychosocial and caregiving relationship factors (including, CG role ambivalence and caregiving-related stress) associated with CG HRQOL. We conducted confirmatory factor analysis and structural equation modeling testing. The results highlight interdependent effects of the CG-CR relationship and reveal pathways whereby relationship interactions positively and negatively impact CGs' HRQOL. Affiliative stigma, CG-CR communication, CRs' reciprocity of support and other psychosocial factors indirectly and differentially affected physical and mental HRQOL through effects on secondary stress and role ambivalence. Dyad-focused intervention on interpersonal communication and support exchange may improve HRQOL and resilience of CGs of vulnerable people living with HIV.

OBJECTIVE: Among persons living with HIV/AIDS (PLHIV), approximately two-thirds report moderate to severe pain. Chronic pain can negatively affect PLHIVs’ health behaviors and outcomes by interfering with their reciprocity (mutual exchange) of support in their caregiving relationships, which has been found to be associated with PLHIVs’ antiretroviral (ART) adherence and viral suppression. SUBJECTS: Data were longitudinal (baseline, 6- and 12-month follow-up) from 383 PLHIV who were formerly or currently using drugs. RESULTS: Utilizing a longitudinal lagged fixed effects structural equation model, we found that never having pain in the past 6 months was predictive of increased reciprocity of support. Sub-analyses by care relationship type revealed never having pain was a significant predictor of greater reciprocity for sexual partner caregiving dyads, but not for kin or friend caregiving dyads. CONCLUSIONS: Our study emphasizes the importance of pain management in quality caregiving relationships characterized by reciprocity, which has consistently been found to be associated with stronger, more supportive caregiving relationships and better quality of life. Our findings suggest the importance of pain management intervention for improving reciprocity between vulnerable PLHIVs and their primary caregivers, especially between PLHIVs and caregivers who are current or former sexual partners.

Among disadvantaged persons living with HIV/AIDS (PLHIV), patient-provider engagement, which has been defined as patient-provider relationships that promote the use of health care services and are characterized by active listening and supportive decision making, has been associated with antiretroviral therapy (ART) maintenance and viral suppression. However, chronic pain, depression, and substance use, all of which are prevalent in this population, can reduce the quality of patient-provider engagement. We hypothesized a model in which chronic pain, depression, and substance use would be associated with poorer patient-provider engagement, which would be positively associated with adherence, with the latter associated positively with viral suppression. We analyzed data from the BEACON study, which included surveys from 383 PLHIV who were primarily African American, on ART, and had histories of drug use. Due to six missing cases on the chronic pain variable, we used data from 377 respondents in a structural equation model. Chronic pain and depressive symptoms were significantly associated with poorer patient-provider engagement, while substance use was associated with better engagement. Patient-provider engagement in turn was associated with better ART adherence, which was associated with higher viral suppression. Results suggest the role of chronic pain in poor patient-physician engagement in this population, which has potential implications for quality of HIV patient care and health outcomes. Findings suggest the need for attention to patient-provider engagement in PLHIV.

Among people living with HIV/AIDS (PLHIV), health-related quality of life (HRQOL) is an important clinical metric of perceived well-being. Baseline data from the BEACON study (N = 383) were used to examine relationships between HRQOL and negative social support, HIV-related stigma, viral suppression, and physical and mental health service use among a vulnerable population of low-income, urban PLHIV who currently or formerly used substances, and were primarily African American. Factor analyses and structural equation modeling indicated that increases in negative social support, stigma, mental health care visits and HIV physician visits were associated with lower HRQOL, while viral suppression was associated with greater HRQOL. The association between negative social support and HRQOL suggests the importance of intervening at the dyad or network levels to shape the type of social support being provided to PLHIV. HIV-related stigma is another negative social factor that is prevalent in this sample and could be addressed by intervention. Results indicate that greater mental and physical health service use can be used to identify individuals with lower HRQOL. Therefore, findings increase an understanding of HRQOL in this understudied population and have implications for designing interventions to improve HRQOL among PLHIV.

To explore the role of informal caregivers in adherence, we compared adherence reports by caregivers to those of care recipients. We identified individual-level and relationship factors associated with agreement between caregivers' reports of recipients' adherence and assessed viral suppression. Participants were care recipients, who were on ART and had ever injected drugs, and their caregivers (N = 258 dyads). Nearly three-fourths of caregivers' reports of recipients' ART adherence agreed with recipients' viral suppression status. Agreement was associated with recipient age and expressing affection or gratitude to the caregiver, caregiver's having been close to someone who died of HIV/AIDS, and caregiver's fear of caregiving-related HIV (re)infection, while it was negatively associated with recipient's limited physical functioning. Our findings support the utility of caregiver proxy reports of care recipients' ART adherence and suggest ways to identify and promote HIV caregiver attention to and support of this vulnerable population's ART adherence.