Problem solving and collaborative involvement among adolescents with spinal cord injury and their caregivers.

Objective: To determine the relationship between constructive adolescent problem solving (positive problem-solving orientation and rational problem-solving style) and caregiver problem solving and collaborative involvement with primary caregiver among adolescents with spinal cord injuries (SCIs). Positive constructive adolescent problem solving was hypothesized to be predicted by more effective caregiver problem solving and higher collaborative involvement. Methods: Participants in this cross-sectional study were 79 adolescent and primary caregiver dyads recruited from a pediatric rehabilitation care system in North America. All participants completed a standardized problem-solving instrument and adolescent participants completed an adapted measure of collaborative parent involvement. Results: More effective caregiver problem solving and adolescent perceptions of more collaboration with caregivers around SCI care were significantly associated with higher positive problem-solving orientation and higher rational problem-solving style among adolescents. Conclusions: Results underscore the importance of caregiver problem-solving skills and their collaboration with adolescents with SCI when addressing care needs. Clinically, findings highlight opportunities for parent involvement and skill-building as an important factor of rehabilitation for adolescents with SCI.

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

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.