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

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.

Explaining the challenges of Iranian caregivers in provision of home health care to spinal cord injury patients: a qualitative study

“…Physical pressure and fatigue experienced by caregivers are among the factors that can contribute to job burnout in these individuals. In line with our findings, the results of another study demonstrated caregivers endured enormous physical pressure when they had to move patients for taking a shower or using the bathroom [ 27 ]. Factors such as age [ 32 – 34 ], gender [ 29 , 30 , 35 ] literacy level, occupation [ 36 , 37 ], patients’ physical activity [ 38 ], economic status, and social support [ 39 ] can influence the care burden imposed on caregivers.…”

“…This burden of care can be related to the fear of the patient’s uncertain fate, the patient’s dependence, the caregiver’s excessive fatigue, and financial issues. Also, the demographic features of the patient and the caregiver can influence the amount of care burden [ 27 ].…”

“…On the other hand, caregivers often accept this role in the early middle-age period [ 25 , 28 ]. On the contrary, the results of another study suggested that care burden was not significantly associated with the duration of the injury or caregiving period, highlighting caregivers’ ability to adapt themselves to new roles, responsibilities, and situations, and problems over time [ 27 ]. The patient’s dependence on the caregiver, the caregiver’s responsiveness, and personal characteristics, as well as social, financial, and demographic parameters can greatly affect the extent of care burden [ 27 , 29 – 31 ].…”

“…In line with this finding, the observations of another study also indicated the high frequency of psychological problems among caregivers. It was reported that young and educated caregivers experienced low care burden because they could easily understand the patient’s needs and problems, successfully manage stressful situations, and appropriately adapt to their new roles by exploiting suitable coping strategies [ 27 ].…”

Caregiver burden and its associated factors among primary caregivers of stroke survivors at Amhara regional state tertiary hospitals: a multicenter study

“…In this study, caregivers with an average monthly household income of <3,000 ETB were 2.8 times more likely to develop mild to moderate burden than those with a monthly household income of more than 6,000 ETB. The finding was supported by the study conducted in Nepal, which showed that caregivers with a monthly household income of more than 20,000 rupees had a high mean burden score (Sinha et al, 2022). Another similar study conducted in Nepal also showed that financial stress is a significant contributor to the high caregiver burden (Kumar et al, 2022).…”