Effects of Domiciliary Rehabilitation on the Burden of Care and Quality of Life in Primary Caregivers of Individuals With Spinal Cord Injury.

Introduction Caregivers of individuals with spinal cord injury often experience significant physical, emotional, and social challenges that can affect their overall well-being. Understanding how caregiver burden and quality of life change over time, particularly during the transition from inpatient to domiciliary rehabilitation, is essential for developing supportive interventions. This study aimed to examine the course of caregiver burden and quality of life among primary caregivers of patients with spinal cord injury. Materials and methods This longitudinal, prospective cohort study was conducted in a tertiary care hospital in a metropolitan city in India. Primary caregivers of patients with spinal cord injury were assessed at two time points: at discharge following the patient's first inpatient rehabilitation (T1) and after three months of domiciliary rehabilitation (T2). Caregiver burden was measured using the Zarit Burden Interview (ZBI), and quality of life was assessed using the WHO Quality of Life-BREF (WHOQOL-BREF) questionnaire. Results Domiciliary rehabilitation had a varied impact on caregiver burden. Some caregivers reported a reduction in burden after three months, whereas others experienced a marked increase, including progression to severe burden levels. The overall burden of care before domiciliary rehabilitation (mean ZBI: 41.3, SD: 14.15) and after domiciliary rehabilitation (mean ZBI: 42.46, SD: 19.16) showed no significant difference (p = 0.512), with a mean change of +1.16 (95% CI: -2.40 to 4.72; d = 0.11). Similarly, no significant changes were observed in the physical health (mean change: +0.72; 95% CI: -4.54 to 5.98; d = 0.05; p = 0.783) and psychological health domains (median 50, interquartile range (IQR) 41.6-62.5 at baseline to median 50, IQR 37.5-70.8 at three months; p = 0.856). However, a significant improvement was observed in the social relationships domain of the WHOQOL-BREF (from median 41.67, IQR 33.33-58.33 to median 59.37, IQR 37.49-66.67; p < 0.001), while the environmental domain showed a decline (from mean 51.83, SD 18.16 to mean 45.14, SD: 18.73; mean change: -5.49; 95% CI: -10.00 to -0.99; d = -0.41; p = 0.021) following domiciliary rehabilitation. Conclusion The transition from inpatient care to home-based rehabilitation affects caregivers in diverse ways. While some experience improved social support, others face increased challenges within the home environment. These findings highlight the need for tailored caregiver support strategies, including skill-based training, respite care, peer support, and interventions addressing environmental barriers.