Annemiek Petronella Maria Backx1, Annemie Irene Frans Spooren2,3, Helena Maria Henrika Bongers-Janssen4,5, Hanneke Bouwsema6,7. 1. Adelante Rehabilitation Centre, Hoensbroek, The Netherlands. a.p.m.backx@gmail.com. 2. REVAL-Rehabilitation Research Center-BIOMED, Biomedical Research Institute, Faculty of Medicine and Life Sciences, Hasselt University, Hasselt, Belgium. 3. Department of Healthcare, PXL University College Hasselt, Hasselt, Belgium. 4. Adelante Rehabilitation Centre, Hoensbroek, The Netherlands. 5. St. Maartenskliniek, Nijmegen, The Netherlands. 6. Adelante Centre of Expertise in Rehabilitation and Audiology, Hoensbroek, The Netherlands. 7. Department of Rehabilitation Medicine, Maastricht University, Research School CAPHRI, Maastricht, The Netherlands.
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.
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.
Authors: James W Middleton; Grahame K Simpson; Annelies De Wolf; Ruth Quirk; Joseph Descallar; Ian D Cameron Journal: Arch Phys Med Rehabil Date: 2014-04-04 Impact factor: 3.966
Authors: Alessio Conti; Marco Clari; Maeve Nolan; Eva Wallace; Marco Tommasini; Silvia Mozzone; Sara Campagna Journal: Top Spinal Cord Inj Rehabil Date: 2019