Development of the Parent Forum: An in-person approach to supporting caregivers of youth with spinal cord injury

Abstract

Context/Objective: Describe development, implementation, review, and redesign of a hospital-based, in-person psychoeducational intervention for caregivers of youth with spinal cord injury (SCI) ages 7–17.Design: Process evaluation/case study to describe intervention development, as well as preliminary evaluation data.Setting: Pediatric specialty hospital.Participants: 41 caregivers of youth with SCI.Interventions: Caregivers attended an in-person intervention (“Parent Forum”), after which they were randomized into two groups: one received monthly phone calls from a mental health professional and the other services as usual. Caregivers were invited to attend a second Parent Forum one year later. The current paper focuses solely on the Parent Forum components.Outcome Measures: Caregiver problem solving, study-specific satisfaction questions, and qualitative focus groups.Results: After consulting with multiple stakeholders (including caregivers, clinicians, and researchers), the first Parent Forum was designed to focus on caregiver health/well-being. While caregivers from Parent Forum I reported greater positive problem solving and relatively high satisfaction scores, they also reported wanting more time together and more discussion of their children’s health. We redesigned Parent Forum II to incorporate this feedback which yielded positive results, particularly during focus groups.Conclusion: The purpose of this manuscript was to share our development process to inform other teams engaged in intervention design for this or similar populations. Our experience emphasized the need to not only involve multiple stakeholders, but to pilot test intervention components, and be open to modifying them after receiving participant feedback. The final intervention model yielded positive reactions, but also emphasized the need for ongoing caregiver support.