Abstract
Introduction: Spinal cord injury (SCI) has a profound impact on the family and friends of those who are injured, and in particular, on family support providers. These impacts have been shown to result in psychological distress, burden, and lack of participation in health-promoting behaviours such as physical activity. However, few interventions exist to support this population.
Objective: To gain a better understanding of the areas of family support providers lives most impacted by their role and how interventions could help to improve their experiences.
Methods: Semi-structured interviews were conducted with family support providers and people with SCI. The interview questions targeted the areas of family support providers' lives that are impacted by SCI and how interventions may support them. All interviews were transcribed verbatim, and a thematic analysis was conducted.
Results: Seven interviews (mean duration: 58±22 minutes) were conducted with four support providers (four partners, 50% women, mean age: 38±7 years) and three people with SCI (two partners, one child, 67% women, mean age: 39±13 years). The area of support providers lives most impacted by SCI was social participation (e.g., sport, employment, socializing). Five themes were identified that appeared to influence social participation, including access to resources, asking for help, guilt, relationship changes, and needing someone who "gets it'.
Conclusion: These findings highlight the need for support and resources for family support providers to promote social participation. By gaining an in-depth understanding of the experiences of family support providers, such resources may be tailored to the needs of this population.
