Articulating viewpoints to better define and respond to the needs of adolescents and young adult survivors of pediatric brain tumors.

PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.

The Integration of Resource Patients in Collaborative Research: A Mixed Method Assessment of the Nesting Dolls Design.

OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.