Spouses of spinal cord injury survivors: The added impact of caregiving

Abstract

Objective: To better understand the needs of spouses who provide care to spinal cord injury (SCI) survivors, by comparing their self-perceptions and complaints with those of their partners with disabilities and with those of spouses who do not provide care. Design: Survey, including demographics, health concerns questionnaire, and administration of the Center for Epidemiologic Studies Depression Scale (CES-D), the Perceived Stress Scale (PSS), the Life Satisfaction Index (LSI-Z), and the Quality of Life and Individual Needs Questionnaire. Setting: Two British SCI treatment centers, serving a defined population-based catchment area. Participants: One hundred twenty-four spouses of a longitudinally followed sample of SCI survivors, all of whom had been injured 23 or more years when the study was conducted in 1993. Outcome Measures: Scores on the above standardized tests, and responses to survey questions. Results: Spouses had more depressive affect ( p < .001) than their partners with disabilities, as measured by the CES-D. On the PSS, they exhibited no significant differences. Compared with spouses who were not caregivers, the caregiving spouses reported more physical stress ( p = .005), emotional stress ( p = .011), burnout ( p = .007), fatigue ( p = .002), and anger and resentment ( p = .029). On the CES-D, they had more symptoms of depressive affect ( p = .004) and somatic depression ( p = .005). Conclusions: Spouses of long-term SCI survivors who fulfill a caregiving role report more symptoms of stress and depression than their partners with disabilities and other spouses who are not caregivers.