Burden of care among primary caregivers’ of spinal cord injury patients attending a tertiary care center in Eastern Nepal

Abstract

Abstract Background Nepal is a resource-constrained country where primary caregivers of spinal cord injury (SCI) patients face increasing physical, social, emotional, and economic burdens. This study aimed to assess the level of primary caregiver burden and the association between caregiver burden and sociodemographic factors of SCI patients and their caregivers. Methods The burden of caregivers was evaluated in 71 primary caregivers through face-to-face interviews using the Zarit Burden Interview Scale (ZBI-22). Based on the total ZBI-22 score, caregiver burden was classified as little or no, mild to moderate, moderate to severe, and severe. Results The mean caregiver burden score was 46.28 ± 12.05. Moderate to severe burden was more common (63.4%), followed by severe (18.3%), mild to moderate (11.3%), and little or no burden (7.0%). Caregivers were more worried about “what the future holds for patients (3.07 ± 1.22) and what should do more for patients (3.04 ± 1.01)”. Several sociodemographic factors, such as marital status (P = 0.009), activities of daily living (P = 0.038), monthly family income (P = 0.023), and time spent caring for patients (P = 0.028), were statistically significantly associated with the burden on primary caregivers. Conclusions Our results showed that primary caregivers experienced a high burden of care, primarily related to fear and uncertainty about the patient’s future, patient’s dependency, caregiver exhaustion and finances. Several sociodemographic factors of patients and their caregivers were associated with the burden of the primary caregivers.