Psychological Distress, Quality of Life, and Burden in Caregivers During Community Reintegration After Spinal Cord Injury

Abstract 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 P 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 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 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.