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A School Passport as Part of a Protocol to Assist Educational Reintegration After Medulloblastoma Treatment in Childhood
Author(s) -
Tresman Rachel,
Brown Morven,
Fraser Faye,
Skinner Roderick,
Bailey Simon
Publication year - 2016
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.26071
Subject(s) - medicine , thematic analysis , empowerment , focus group , documentation , protocol (science) , inclusion (mineral) , qualitative research , rehabilitation , family medicine , nursing , physical therapy , psychology , alternative medicine , social psychology , social science , pathology , marketing , sociology , political science , computer science , law , business , programming language
Background Medulloblastoma is the most common malignant brain tumour in children and is treated with a combination of surgery, radiotherapy and chemotherapy. These children frequently experience long‐term cognitive, social and physical sequelae, which significantly affect school reintegration. Aim This study aimed to explore school‐return experiences to create a more structured school reintegration protocol for children postmedulloblastoma. Methods A cohort of nine patients who had completed treatment and for whom full neuropsychometric data were available was included in the study (median time since diagnosis 8 years). Data were collected using qualitative parental questionnaires, semistructured interviews with teachers (n = 12) and healthcare professionals (HCPs) (n = 6) involved in their school reintegration. Thematic analysis was employed. A focus group with five HCPs was then used for data validation. Results This study uncovered the following four main subjects: (1) Information sharing; (2) education and empowerment (of educational professionals (EP) and parents); (3) communication between parents, HCPs and EPs; and (4) long‐term difficulties. Discussion Implementation of a standardised protocol delivered within the structure of a school passport document would aid uniform follow‐up. The proposed multistage protocol includes early communication and reintegration planning followed by meetings at school re‐entry. Follow‐up meetings are suggested to reduce information loss and reassess the child's needs. Hospital support at school transitions, inclusion of school data in long‐term clinical follow‐up and long‐term rehabilitation are also recommended. Each stage would be supported by school passport documentation and would facilitate school and parental empowerment, paramount to the long‐term sustainability of successful schooling.