The Cost of Compassion: Caregiver Fatigue Associated with Caring for Persons with Disability in a Rural Population in India.

Abstract

Caregiver fatigue is common among caregivers of patients with disabilities and compromises the health of caregivers and the disabled alike. There is no community-based data from India on the burden of caregiver fatigue. Therefore, we aimed to determine the prevalence of caregiver fatigue among family members of patients with disabilities, assessing the association of socio-demographic factors related to caregivers, care recipients, and the nature of disability with caregiver fatigue. We performed a cross-sectional study in Kaniyambadi, Vellore, interviewing 63 disabled people and their caregivers. Demographic details and details of caregiving were recorded. The severity of disability was assessed using the World Health Organization Disability Assessment Schedule 2.0, and caregiver fatigue was assessed using the American Medical Association Caregiver Self-assessment Questionnaire. Caregivers were predominantly female (76.2%), most frequently parental (41.3%), followed by spousal (30.2%). Moreover, 71.4% of caregivers were not gainfully employed. The most common disability was physical and mobility impairments followed by brain injuries. Caregiver fatigue occurred in 71.4% of caregivers. Characteristics associated with caregiver fatigue were female sex, parental relationship, and >6 h daily spent caregiving. Caregivers of male patients and individuals with >50% disability were more likely to develop caregiver fatigue. Caregiver fatigue was noted in a majority of caregivers, associated with female and parental caregivers, younger care recipients with severe disabilities, and increased time spent caregiving. Several social and economic factors unique to our country necessitate further study. Practical measures include telephonic consultations, counseling groups, and changes to daily interactions between healthcare workers and caregivers.