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Abstract
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OBJECTIVE: To examine relationships between psychological distress, health-related quality of life (HR-QOL) and burden among caregivers of people with a traumatic spinal cord injury (SCI) over time, and determine whether the data are more consistent with a "wear and tear" or "adaptation" trajectory.
DESIGN: Prospective longitudinal cohort study with measurements at four time points (6 weeks prior to discharge from subacute inpatient rehabilitation and 6 weeks, 1 year, 2 years post-discharge to community). SETTING: Two inpatient spinal cord injury rehabilitation units in New South Wales, Australia. PARTICIPANTS: Participants (n=44; spouses, parents, others) nominated by the person with SCI as their primary caregiver. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: General Health Questionnaire-28 (GHQ-28), Medical Outcomes Survey Short Form-36 (SF-36), Carer Strain Index (CSI) assessed 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 Functional Independence Measure™ (FIM) and Craig Handicap Assessment and Reporting Technique (CHART) respectively.
RESULTS: Multilevel piecewise models showed that psychological distress (GHQ-28 score) decreased significantly after discharge (slope estimate = -0.03, p < 0.008). At the pre-discharge time point, the caregivers' mental component summary score on the SF-36 was significantly lower than Australian national norms. The scores improved from the pre discharge to 6 weeks post discharge (slope estimate = 0.39, p < 0.001) but did not change significantly across the following two time points (slope estimate = 0.02, p = 0.250). At all three post-discharge time points, the mental component summary scores were not significantly different to the national norms. In contrast, the physical component summary score of the SF-36 did not significantly change across the pre- and 6 weeks post-discharge time points (slope estimate = -0.14, p =0.121), nor across the three post-discharge time points (slope estimate <0.01, p = 0.947). Scores at all four time points were not significantly different to the national norms. Caregiver burden showed no significant change over the study period (pre to 6 weeks post-discharge slope estimate = 0.02, p = 0.426; three post-discharge time points slope estimate < -0.01, p = 0.334). Reflecting this, 42% of caregivers met CSI caseness criterion at the first time point, and 46% at the fourth (2 year) 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 Time 2 and Time 3, but not at Time 4.
CONCLUSION: The trajectory of scores for psychological distress and health-related quality of life were consistent with caregiver adaptation to the challenge of providing support to a person with SCI in the early post-discharge period. Caregiver burden did not display similar reductions but did not worsen over the study period.
Language: en |