Anny T H R Fenton1, Katherine A Ornstein2, Peggye Dilworth-Anderson3, Nancy L Keating4,5, Erin E Kent3,6, Kristin Litzelman7,8, Andrea C Enzinger9,4, Julia H Rowland10, Alexi A Wright9,4. 1. Dana-Farber Cancer Institute, Boston, MA, USA. annyt_fenton@dfci.harvard.edu. 2. John Hopkins University, School of Nursing, Baltimore, MD, USA. 3. Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, NC, USA. 4. Harvard Medical School, Boston, MA, USA. 5. Brigham and Women's Hospital, Boston, MA, USA. 6. Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, NC, USA. 7. University of Wisconsin-Madison, Madison, WI, USA. 8. University of Wisconsin Carbone Cancer Center, Madison, WI, USA. 9. Dana-Farber Cancer Institute, Boston, MA, USA. 10. Smith Center for Healing and the Arts, Washington, DC, USA.
Abstract
PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.
PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.
Authors: Sarina R Isenberg; Rebecca A Aslakson; James N Dionne-Odom; Katherine Clegg Smith; Sarabdeep Singh; Susan Larson; John F P Bridges; Thomas J Smith; Jennifer L Wolff; Debra L Roter Journal: Patient Educ Couns Date: 2018-05-07
Authors: Michelle van Ryn; Sara Sanders; Katherine Kahn; Courtney van Houtven; Joan M Griffin; Michelle Martin; Audie A Atienza; Sean Phelan; Deborah Finstad; Julia Rowland Journal: Psychooncology Date: 2011-01 Impact factor: 3.894