Reintegration into school of childhood brain tumor survivors: a qualitative study using the International Classification of Functioning, Disability and Health – Children and Youth framework

Abstract

Purpose The purpose of this study was to describe experiences of childhood brain tumor survivors (CBTS) and key figures in their environment after returning to school, using the International Classification of Functioning, Disability and Health – Children and Youth framework. Methods We conducted semi-structured interviews with five children, nine parents, 28 teachers, and 14 health professionals at three predetermined times over a two-year period. A qualitative content analysis was performed by linking meaningful units from transcribed interviews to ICF codes. Results Children experienced diverse body dysfunctions that could impede school participation, mostly related to knowledge acquisition and application, executive functioning and social life. Support at school and professional aftercare were essential to alleviate the child’s difficulties. The teacher’s attitude, parental involvement, and practices of collaboration belonging to the child’s supportive network further influenced the reintegration process. Also, child-specific factors including emotional reactions to illness, age, and balance between school life and leisure time were considered to affect school readjustment. Conclusions The International Classification of Functioning, Disability and Health framework is a useful instrument to systematically describe experiences of CBTS and key figures regarding school life, providing a common language to communicate for stakeholders in education and healthcare following the child’s return. IMPLICATIONS FOR REHABILITATION The International Classification of Functioning, Disability and Health – Children and Youth framework is a useful instrument to describe experiences regarding school life of childhood brain tumor survivors (CBTS) and key figures in their environment. The ICF-CY model can be combined with a standardized assessment of neurocognition or performance to achieve a comprehensive view of the child’s participation at school, by exploring both personal and environmental factors. Childhood brain tumor survivors mostly show impairments in acquiring and applying knowledge, executive functioning and social life, which may require increased support at school and professional aftercare. A positive attitude of school staff, high parental involvement in school life and adequate collaboration between parents, education and healthcare are important to prioritize in the context of reintegration into school of CBTS.