Role strain and COVID‐era burden among South Asian caregivers of individuals with brain health conditions and disabilities

Abstract

AbstractBackgroundThe COVID‐19 pandemic has renewed attention to the conflicting demands placed on caregivers worldwide. Nowhere is this more evident than in South Asia, where cultural norms and a scarcity of long‐term care facilities have made the home the locus of caregiving for individuals with brain health conditions and disabilities. A hidden cost of this informal arrangement is the burden experienced by the primary caregiver. This may be exacerbated when traditional caregiving expectations clash with personal aspirations outside the family.MethodThis paper investigates the determinants of burden among 494 informal caregivers in India, Pakistan, and Bangladesh during the COVID‐19 pandemic. The variables, obtained from the Coping with Loneliness, Isolation, and COVID‐19 (CLIC) Global Caregiver study, include caregiver demographic characteristics, features of the caregiving arrangement, and subjective measures of the caregiving experience. The dependent variable in our analysis, the perceived frequency of burden, is rated by respondents on a five‐level scale. Role strain is expected to be greatest among young, educated women living with the care recipient in their own homes. Therefore, burden should exhibit a positive association with female gender, education, and cohabitation, and a negative association with age.ResultOut of the 494 caregivers included in the study, 33.8% experienced increasing burden and 58% experienced loneliness some of the time during Covid‐19. The ordinal logistic marginal effects are consistent with all four hypotheses. Caregiver Burden is found to be positively correlated with female gender (OR,1.92; 95%CI, 0.35,1,03; P=<0.001), the 18‐39 age range (OR,1.71; 95%CI, 0.114, 0,963; P=0.01), poor finances (OR,2.192; 95%CI,0.22,1.34; P=0.006), poor physical health (OR, 2.24, 95%CI, 0.29,1.32, P=0.002), poor mental health (OR,1.86; 95%CI, 0.14,1.10, P=0.011), and care recipients with dementia/Alzheimer's (OR,2.76; 95%CI, 0.52,1.51, P=<0.001) and/or mental health conditions (OR,1.61; 95%CI, 0.02,0.94, P=0.039).ConclusionRole strain may be a significant driver of burden when the caretaker’s educational and professional potential collide with traditional South Asian family obligations. The burden reported by our respondents suggests that role strain may elevate stress among young, educated caregivers. Our results, therefore, provide indirect evidence concerning the changing economic and socio‐cultural context of caregiving in South Asian households.