Improving Services for Paediatric Brain Tumour Survivors: Engaging Stakeholders and Decision-Makers in Collaborative...

Paediatric brain tumour survivors (PBTS) may experience psychosocial, academic, and employment difficulties after care due to physical and neurocognitive sequelae. Despite clear needs, PBTS do not receive appropriate services and guidance. This study aimed to identify strategies to translate previously prioritised solutions from PBTS and their parents into practice. The specific objectives were to select the two most feasible solutions for effective implementation and to describe the main elements and institutional strategies that could support their adoption.

This study employed a mixed-methods design. We conducted a survey and two 2-h online workshops with 15 professionals and 5 decision-makers from various sectors (health, education, and non-profit organisations) in Quebec, Canada. Survey data were collected using Likert scales and single-response multiple-choice statements. We used frequencies and percentages to identify the two highest-rated solutions. The workshops were video-recorded, and after each session, we collected information on the topics discussed using pre-established grids. This information was then reorganised into overarching themes using a worksheet and verbatim excerpts to describe actions and propose recommendations for implementation.

The chosen solutions were to (1) provide ongoing evaluations for PBTS and (2) provide counselling to help PBTS understand their needs and advocate for services. Three overarching themes emerged from workshops: cross-sectoral awareness actions, long-term evaluation and follow-up strategies, and liaison efforts. The key actions proposed for implementing these solutions included providing meetings and counselling involving diverse sectors, providing systematic consultations and inter-sector co-designed tools, and developing the role of a cross-sectoral team or a pivot/liaison person.

The workshops provided actionable insights for implementing services for PBTS. Future interventions should focus on developing pilot projects based on the main actions identified by participants. These initiatives could improve aftercare services for PBTS and optimize their long-term rehabilitation.