Racial differences in coping strategies for people living with ALS and their caregivers

TL;DR

This study explores how Black and White individuals with ALS and their caregivers cope differently, finding that Black participants use humor, religion, and positive coping more often.

Contribution

The study is the first to examine racial differences in coping strategies among Black/Other and White ALS patients and caregivers.

Findings

Black/Other caregivers used humor as a coping strategy more than White caregivers.

Black/Other people with ALS reported higher use of religious coping compared to White individuals.

Black/Other individuals with ALS used more positive coping strategies than their White counterparts.

Abstract

People living with amyotrophic lateral sclerosis (ALS) and their caregivers face negative psychological distress. No research to our knowledge has examined the unique coping experiences of Black/Other ALS dyads. We conducted an on-line, self-report, cross-sectional study of the experiences of people living with ALS (N = 74; 60 White; 14 Black/Other) and caregivers of people living with ALS (N = 77; 57 White; 20 Black/Other). Both samples completed the Brief Cope (Carver, 1997), and we explored differences between the White and Black/Other participants for each sub-scale. We found that Black/Other caregivers (M = 2.75, SD = 1.05) used humor as a coping style more than White caregivers (M = 2.24, SD=.83; F(76)=4.93, p=.029). We also found that Black/Other people living with ALS (M = 2.18, SD=.87) reported using more religious coping than White people living with ALS (M = 1.64, SD=.55; F(73)=8.46, p=.005). Also, Black/Other people living with ALS (M = 1.68, SD=.75) used more positive coping than White people living with ALS (M = 1.24, SD=.45; F(73)=8.19). Results of this exploratory analysis suggest that future studies with larger samples replicate these findings. If replicated, these findings would have implications for the design of supportive psychoeducational interventions tailored to the needs of Black/Other caregiving dyads living with ALS. We highlight the need for advancing health equity approaches for other rare, and neurodegenerative diseases. .