Spouses of spinal cord injury survivors: the added impact of caregiving.

Abstract

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. 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. Two British SCI treatment centers, serving a defined population-based catchment area. 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. Scores on the above standardized tests, and responses to survey questions. 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). 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.