Article

OBJECTIVES: To examine relations between psychological distress, health-related
quality of life (HR-QOL), and burden among caregivers of people with traumatic
spinal cord injury (SCI) over time, and to determine whether the data are more
consistent with a wear and tear or adaptation trajectory. DESIGN: Prospective
longitudinal cohort study with measurements at 4 time points (6wk prior to
discharge from subacute inpatient rehabilitation and 6wk, 1y, and 2y
postdischarge to community). SETTING: Rehabilitation units. PARTICIPANTS:
Participants (N=44; spouses, parents, others) nominated as a primary caregiver by
the person with SCI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES:
General Health Questionnaire-28 (GHQ-28), Medical Outcomes Study 36-Item
Short-Form Health Survey (SF-36), and Caregiver Strain Index (CSI) assessed the
extent of psychological distress, HR-QOL, and burden, respectively, among
caregivers. Functional status and community participation/care needs of the
persons with SCI were assessed by the FIM and Craig Handicap Assessment and
Reporting Technique, respectively. RESULTS: Multilevel piecewise models showed
that psychological distress (GHQ-28 score) decreased significantly after
discharge (slope estimate =-.03, P<.008). At the predischarge time point, the
caregivers' mental component summary score on the SF-36 was significantly lower
than Australian national norms. The scores improved from predischarge to 6 weeks
postdischarge (slope estimate =.39, P<.001), but they did not change
significantly across the following 2 time points (slope estimate =.02, P=.250).
At all 3 postdischarge time points, the mental component summary scores were not
significantly different to national norms. In contrast, the physical component
summary score of the SF-36 did not significantly change across the predischarge
and 6-week postdischarge time points (slope estimate =-.14, P=.121) and the 3
postdischarge time points (slope estimate <.01, P=.947). Scores at all 4 time
points were not significantly different to the national norms. Caregiver burden
showed no significant change over the study period (predischarge to 6wk
postdischarge slope estimate =.02, P=.426; 3 postdischarge time point slope
estimates <-.01, P=.334). Reflecting this, 42% of caregivers met CSI caseness
criterion at the first time point, and 46% met the criterion at the fourth (2y)
time point. Higher burden was significantly correlated with increased hours of
care being provided by the caregiver and lower FIM scores and lower community
participation (for the person with SCI) at each time point. Psychological
distress correlated with caregiver burden at 6 weeks and 1 year postdischarge but
not at 2 years postdischarge. CONCLUSIONS: The trajectory of scores for
psychological distress and HR-QOL was consistent with caregiver adaptation to the
challenge of providing support to a person with SCI in the early postdischarge
period. Caregiver burden did not display similar reductions but did not worsen
over the study period.
CI - Copyright (c) 2014 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS