Brain tumours are the most common solid cancers in childhood, affecting 45 children in Ireland annually. Thanks to improved surgical and medical treatment, three in four children survive at least ten years. Irrespective of survival longevity, brain tumours can cause significant ongoing challenges including fatigue, motor impairment, cognitive difficulties, and family distress. The brain injury caused by a tumour should be amenable to rehabilitation, defined by the World Health Organisation as “a set of interventions designed to optimise functioning and reduce disability in individuals with health conditions in interaction with their environment”. However, due to the complexity and variability of the impact of brain tumours, rehabilitation needs are poorly understood, under-detected, and inadequately provided for by services, with profound implications for health, function and participation.
This study aims to explore and understand rehabilitation needs after a brain tumour in childhood, determine how these needs should be assessed and monitored after tumour treatment, and use the findings to co-design a pathway for rehabilitation.
This proposal comprises:
A qualitative study to explore current perspectives and experiences of rehabilitation with children and young people (CYP) who had a childhood brain tumour, families, and healthcare professionals; with findings mapped to the Theoretical Domains Framework;
A prospective study of structured surveillance of rehabilitation needs in CYP in the first year after initial treatment, using standardised scales for activity limitations and participation restrictions; to determine how to assess and monitor rehabilitation needs, including the acceptability and feasibility of the assessments;
Co-design of a pathway for rehabilitation after childhood brain tumours, involving all stakeholders (CYP, families, healthcare professionals, policy makers; public and patient involvement panellists), using participatory action research.
The findings will inform understanding of clinical need and rehabilitation provision for childhood brain tumours by enabling CYP and families to achieve their goals for participation and independence.