Abstract
Smeets SM, van Heugten CM, Geboers JF, Visser-Meily JM, Schepers VP. Respite care
after acquired brain injury: the well-being of caregivers and patients.
Objective
To investigate satisfaction with respite care, the well-being of informal caregivers
and patients with acquired brain injury (ABI) who receive respite care by day-care
activity centers, and factors related to caregiver well-being.
Design
Cross-sectional cohort study.
Setting
Adult day-care activity centers.
Participants
A sample of caregivers and patients (N=108) with ABI (mean of 8y since injury) enrolled
in 1 of 7 day-care activity centers. The sample consisted predominantly (70%) of stroke
patients.
Intervention
Respite care by adult day-care activity centers.
Main Outcome Measures
Well-being was defined in terms of life satisfaction (Life Satisfaction Questionnaire
[LiSat-9]), emotional functioning (Hospital Anxiety and Depression Scale [HADS]),
and caregiver burden (Caregiver Strain Index [CSI]). Factors related to well-being
were personal, injury related, and psychological.
Results
Satisfaction with day-care activity center care was high for caregivers (7.8) and
patients (8.1). Caregiver satisfaction with care was unrelated to caregiver well-being.
Most caregivers (61%) showed low life satisfaction and high subjective burden (69%),
and 33% of caregivers and 42% of the patients reported depressive symptoms. Caregiver
well-being was positively correlated with a high sense of mastery of caregivers and
patients and low passive coping of the patient (LiSat-9 R2=.32; HADS R2=.55; CSI R2=.35).
Conclusions
This study emphasizes the need for care for both caregivers and patients in the chronic
phase after ABI. Although respite care is highly appreciated, it is not sufficient
for caregivers to attain a healthy level of well-being. Results indicate that caregiver
well-being might improve by targeting passive coping and mastery skills of caregivers
and patients. Continuous support for both caregivers and patients is needed.
Key Words
List of Abbreviations:
ABI (acquired brain injury), CFQ (Cognitive Failures Questionnaire), CSI (Caregiver Strain Index), HADS (Hospital Anxiety and Depression Scale), LiSat-9 (Life Satisfaction Questionnaire), MRS (Modified Rankin Scale), UCL-P (Utrecht Coping List Passive reactions scale), UCO (Utrecht Communication Observation)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: March 09, 2012
Footnotes
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
In-press corrected proof published online on Mar 9, 2012, at www.archives-pmr.org.
Identification
Copyright
© 2012 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
