Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members’ (n = 16) experiences.Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators.Implications for RehabilitationFamily caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community.The potential negative effects of caregiving could threaten the sustainability of these critical supports.Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role.This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.