Backx Annemiek Petronella Maria, Spooren Annemie Irene Frans, Bongers-Janssen Helena Maria Henrika, Bouwsema Hanneke
Adelante Rehabilitation Centre, Hoensbroek, The Netherlands.
REVAL-Rehabilitation Research Center-BIOMED, Biomedical Research Institute, Faculty of Medicine and Life Sciences, Hasselt University, Hasselt, Belgium.
Spinal Cord. 2018 Sep;56(9):890-899. doi: 10.1038/s41393-018-0098-7. Epub 2018 Apr 27.
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 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).
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.
纵向前瞻性队列研究。
探讨荷兰脊髓损伤患者照料者的负担、生活质量（QoL）及护理满意度的变化过程。
荷兰阿德拉特康复中心及荷兰社区
在康复开始时（T1）、康复出院时（T2）以及出院后8周（T3）、6个月（T4）和18个月（T5），对近期脊髓损伤患者的照料者（n = 37）进行照料者压力指数（CSI）、简明健康状况调查量表（SF - 36）和照料者对（中风）护理满意度问卷（C - SASC）的评估。
在康复期间，20名照料者（54%）经历了高水平的负担（临界值>6）。随访期间CSI评分显著下降（CSI评分中位数T1：7，四分位间距[5,10]；T5：4，四分位间距[1,7]，p = 0.010），在T5时5名照料者（24%）的负担评分>6。在SF - 36量表的“社会功能”、“情感角色功能”、“心理健康”和“活力”领域，生活质量的初始低分有显著改善。照料者对护理的总体满意度良好（C - SASC：中位数3，四分位间距[3,4]）且随时间稳定。在总CSI评分与“社会功能”（T2 - T3 - T4）、“情感角色功能”（所有时间点）、“心理健康”（所有时间点）和“活力”（所有时间点）之间发现中度强负相关，p值<0.041。
本研究表明住院康复期间照料者在“心理健康成分”（或MHC）领域负担高且生活质量低。在早期居家阶段，我们发现负担和MHC有显著改善。治疗脊髓损伤患者及其照料者的临床医生应意识到康复期间照料者可能负担高且生活质量低。
