Working together to develop an effective approach for supporting children with brain tumours and their families throughout education

Abstract

Background: The survival rates of childhood brain tumour survivors (CBTS) are increasing with more children surviving five years or more. CBTS experience a range of continued effects which can impact upon their social, academic and physical participation in education and school life, and accomplishment of future milestones. As more CBTS reintegrate into the classroom, it is increasingly important to understand their quality of life and educational experiences. Methods and participants: Paper one is a systematic review and synthesis of qualitative research exploring families' and professional's experiences of brain tumours and education. It aims to understand the holistic needs of CBTS through an educational and person-centred lens. Eight papers, reporting on seven studies, were critically appraised and synthesised following PRISMA guidelines. Paper two explores a process of parent and professional collaboration leading to the coproduction of resources for promoting resilience and positive educational experiences for CBTS and their families. Analysis and findings: Paper one identified three themes: simpler and more emotionally sensitive systems needed; the importance of transitions in children's lives; and adjusting to school life after the return to school. Paper Two evaluates the process and outcomes of stakeholder collaboration. Enablers and obstacles to coproduction with professionals across public and voluntary sectors and families of children with significant health needs are identified, alongside key considerations for resources to support CBTS in education. Conclusion and implications: Strategies to support coordinated and cohesive working and the ongoing needs of CBTS are outlined, along with implications for future research and practice. A person-centred and relational approach, rooted in positive psychology is a potentially helpful way for schools to systemically address the holistic needs of CBTS and their families. Future research in the area of coproduction is needed, particularly for newly formed groups. Dissemination strategies include publication of online resources for families, schools, and supporting professionals.

Date of Award	31 Dec 2023
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Kevin Woods (Supervisor) & Caroline Bond (Supervisor)