Family caregivers of individuals with spinal cord injuries receiving Medicaid/Medicare: How are they faring?

Because a cervical spinal cord injury (SCI) affects multiple body systems, SCI care is more complex and physically demanding than care for other disabling conditions. Given the substantial life expectancies for SCI survivors, family caregiving can be a long-term responsibility that results in chronic stress, compromised immune systems, and increased psychosocial morbidity. As part of a study funded by Blue Cross Blue Shield of Michigan Foundation, this study explores the health care experiences of family caregivers for SCI survivors receiving Medicaid/Medicare. Using a mixed-methods design, 20 dyads of SCI survivors and their family caregivers participated in comprehensive audiotaped interviews and completed standardized instruments measuring caregiver burden, stress, quality of life, and health/functioning. This presentation examines caregivers' responses to the Montgomery Caregiver Burden Scale (CBS) and triangulates that data with the qualitative data derived from the coded caregiver interviews. Among family caregivers, the overall mean CBS score was 50.7 (SD= 8.8). The mean scores of the subscales of CBS: objective burden 25 (SD= 4.1); subjective demand burden 12.3 (SD= 4.1); subjective stress burden 13.4 (SD= 3.6). The goal of this analysis is to compare quantitative findings describing variations in level/intensity of burden with themes of burden, stress, and quality of life embedded in the narratives. Such an analysis can provide a fuller understanding of the context-specific factors that are linked to overall caregiver burden. Addressing the needs of family caregivers is vital to the development of public health policies aimed toward providing quality care to individuals with significant disabilities.