Quality of life, burden and satisfaction with care in caregivers of patients with a spinal cord injury during and after rehabilitation

Abstract

Study design: Longitudinal, prospective cohort study.

Objectives: To examine the course that burden, quality of life (QoL) and satisfaction with care taken in Dutch caregivers of patients with a SCI.

Setting: Adelante Rehabilitation Centre and Dutch community, the Netherlands METHODS: Caregiver Strain index (CSI), Short Form36 (SF-36) and Caregivers' Satisfaction with (Stroke) Care Questionnaire (C-SASC) were administered to caregivers (n = 37) of patients with a recently acquired SCI at the start of rehabilitation (T1), discharge from rehabilitation (T2) and at 8 weeks (T3), 6 months (T4) and 18 months after discharge (T5).

Results: During rehabilitation, 20 caregivers (54%) experienced high levels of burden (cutoff >6). CSI scores significantly decreased during follow-up (median CSI score T1:7 IQR[5,10], T5:4 IQR[1,7], p = 0.010), at T5 5 caregivers (24%) scored >6 on burden. Initial low scores on QoL improved significantly in the SF-36 domains 'social-functioning', 'emotional-role-functioning', 'mental health' and 'vitality'. Overall satisfaction with care of caregivers was good (C-SASC: median 3, IQR[3,4]) and stable over time. Moderate strongly negative correlations were found between total CSI-score and 'social-functioning' (T2-T3-T4), 'emotional-role-functioning' (all time points), 'mental health' (all time points) and 'vitality' (all time points) with p values < 0.041.

Conclusions: This study demonstrates the high burden and a low QoL on the 'the Mental Health Component' domains (or MHC) of caregivers during inpatient rehabilitation. During the early home phase, we found a significant improvement in burden and MHC. Clinicians working with both SCI-patients and caregivers should be aware of the possible high burden and low QoL of caregivers during rehabilitation.