An Exploration of Support Needs of Family Caregivers of Individuals with Spinal Cord Injury: A Qualitative Study

There is a gap in evidence with respect to the specific support needs of family caregivers of individuals with spinal cord injury (SCI). The objectives of this thesis include determining: 1) the perceived facilitators and barriers to undertaking and sustaining the caregiving role; 2) the types of support needed by individuals with SCI, and the factors related to the need for more support; 3) the skills needed by SCI family caregivers to enhance competency in caregiving; and 4) how caregivers and care recipients negotiate changes within the relationship post-SCI. This research used a qualitative descriptive approach with an exploratory design. Thirty-four interviews (19 individuals with SCI, 15 family caregivers) were conducted. In the first paper, 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. In the second paper, the following types of support needed by individuals with SCI were identified: practical, emotional and advocacy. The following factors associated with the need for more support were also identified: a higher level of injury, greater frequency of secondary health conditions and age of the care recipient. In the third paper, twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. In the final paper, the following four factors that challenged relationship stability were identified: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. Also, the following four strategies used by care recipients and caregivers to maintain/re-build their relationships were identified: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. These findings could serve to facilitate prospective planning of sustainable support for family caregivers as well as improve the health outcomes of individuals with SCI.Ph.D