Lauren T Starr1, Karen Bullock2, Karla Washington3, Subhash Aryal4, Debra Parker Oliver3,5, George Demiris1,6. 1. Department of Biobehavioral and Health Sciences, NewCourtland Center for Transitions and Health, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 2. Department of Social Work, College of Humanities and Social Sciences, North Carolina State University, Raleigh, North Carolina, USA. 3. Division of Palliative Medicine, School of Medicine, Washington University in St. Louis, St. Louis, Missouri, USA. 4. BECCA (Biostatistics * Evaluation * Collaboration * Consultation * Analysis) Lab, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 5. Barnes Jewish College, Goldfarb School of Nursing, St. Louis, Missouri, USA. 6. Department of Biostatistics and Epidemiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Abstract
Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.
Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.
Entities:
Keywords:
caregiver; caregiver burden; health care communication; hospice; mental health; race; racial disparity
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