The impact of Spinal Cord Injury on the employment of family caregivers

This paper describes and explores the impact of spinal cord injury (SCI) on the employment of family members, especially those who act as primary caregivers, of individuals with SCI. Using individual interviews and a focus group, nine caregivers were interviewed to gain a better understanding of the challenges these caregivers face, the needs and concerns they have, and what services and programs would enable them to continue to balance their many roles. Our participants included both parents and spouses/partners of individuals with SCI, who varied significantly across age (teenager through adult) and level of injury. Four primary themes emerged from our study: (1) caregivers had to create flexibility in their employment situation in order to successfully maintain employment, especially immediately after the injury; (2) while many of our caregivers felt that they needed to work for financial reasons, there were times when the two responsibilities of work and caregiving conflicted; (3) responsibilities left little time for the caregivers to engage in leisure, maintain social connection, spend time with their spouse, or take time to care for their own personal needs: and (4) caregivers' employment was affected by the lack of available Certified Nursing Aides. This study points to the need for more community supports for this population of caregivers and the need for more research on employed caregivers of persons with SCI.