Affiliations: Department of Physical Medicine and Rehabilitation,
Virginia Commonwealth University, Richmond, VA, USA | Department of African American Studies, Virginia
Commonwealth University, Richmond, VA, USA | Survey and Evaluation Research Laboratory, Virginia
Commonwealth University, Richmond, VA, USA
Note: [] Address for correspondence: Michelle A. Meade, Ph.D., Department
of Physical Medicine and Rehabilitation, Virginia Commonwealth University, PO
Box 980677, Richmond, VA 23298-0677, USA. Tel.: +1 804 828 5401; Fax: +1 804
828 6340; E-mail: mameade@vcu.edu
Abstract: 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.
