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Improving Services for Paediatric Brain Tumour Survivors: Engaging Stakeholders and Decision-Makers in Collaborative
Marco Bonanno1, Claude Julie Bourque1,2, Lye-Ann Robichaud2
1Sainte-Justine University Hospital Center, Montreal, Canada.
Insights
Paediatric brain tumour survivors need better support. This study identified ongoing evaluations and counselling as key strategies to improve their psychosocial, academic, and employment outcomes after treatment.
Area of Science:
- Oncology
- Rehabilitation Medicine
- Public Health Policy
Background:
- Paediatric brain tumour survivors (PBTS) face significant psychosocial, academic, and employment challenges post-treatment due to neurocognitive and physical sequelae.
- Despite identified needs, PBTS often lack adequate post-care services and guidance.
- This study addresses the gap by identifying practical strategies for implementing essential support services for PBTS.
Purpose of the Study:
- To identify and select the two most feasible solutions for effective implementation to support PBTS.
- To describe the key elements and institutional strategies necessary for adopting these solutions.
- To translate previously prioritized solutions from PBTS and their parents into actionable practice.
Main Methods:
- A mixed-methods design incorporating a survey and online workshops with healthcare, education, and non-profit professionals and decision-makers.
- Quantitative analysis of survey data (Likert scales, multiple-choice) to identify top-rated solutions.
- Qualitative analysis of workshop discussions (video-recorded, thematic organization) to detail implementation strategies and recommendations.
Main Results:
- The two highest-rated solutions selected for implementation were: (1) providing ongoing evaluations for PBTS and (2) offering counselling for needs assessment and service advocacy.
- Three overarching themes emerged: cross-sectoral awareness, long-term evaluation/follow-up, and liaison efforts.
- Key proposed actions included inter-sectoral meetings, systematic consultations, co-designed tools, and establishing a liaison role.
Conclusions:
- Actionable insights were generated for improving aftercare services for PBTS through targeted interventions.
- Pilot projects focusing on identified actions are recommended to optimize long-term rehabilitation.
- Implementing these strategies can significantly enhance the quality of life and outcomes for PBTS.
Background:
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.
Methods:
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.
Findings:
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.
Conclusions:
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.
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