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



Study design

Longitudinal, prospective cohort study.


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


Adelante Rehabilitation Centre and Dutch community, the Netherlands


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).


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.


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.

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Authors contributions

AB was responsible for designing the protocol, writing the protocol, including patients, analyzing the data, interpreting the results, writing article, submitting article. AS was responsible for designing the protocol, contributed to interpreting the results and provided feedback on the article. HB contributed to designing the protocol, including patients, interpreting results and provided feedback on the article. HB contributed to including patients, analyzing the data, interpreting the results and provided feedback on the article.

Author information


  1. Adelante Rehabilitation Centre, Hoensbroek, The Netherlands

    • Annemiek Petronella Maria Backx
    •  & Helena Maria Henrika Bongers-Janssen
  2. REVAL—Rehabilitation Research Center—BIOMED, Biomedical Research Institute, Faculty of Medicine and Life Sciences, Hasselt University, Hasselt, Belgium

    • Annemie Irene Frans Spooren
  3. Department of Healthcare, PXL University College Hasselt, Hasselt, Belgium

    • Annemie Irene Frans Spooren
  4. St. Maartenskliniek, Nijmegen, The Netherlands

    • Helena Maria Henrika Bongers-Janssen
  5. Adelante Centre of Expertise in Rehabilitation and Audiology, Hoensbroek, The Netherlands

    • Hanneke Bouwsema
  6. Department of Rehabilitation Medicine, Maastricht University, Research School CAPHRI, Maastricht, The Netherlands

    • Hanneke Bouwsema


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Conflict of interest

The authors declare that they have no conflict of interest.

Corresponding author

Correspondence to Annemiek Petronella Maria Backx.

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