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

Annemiek Petronella Maria Backx*, Annemie Irene Frans Spooren, Helena Maria Henrika Bongers-Janssen, Hanneke Bouwsema

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


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.
Original languageEnglish
Pages (from-to)890-899
Number of pages10
JournalSpinal Cord
Issue number9
Publication statusPublished - 1 Sept 2018



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