“The post-it note just said leukemia” - Information exchange challenges of teachers and local stakeholders supporting young childhood cancer survivors at school – A qualitative study from the Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) group

Abstract

PurposeExplore teachers', school nurses', cancer coordinators' and other local stakeholders’ experiences providing education and support for young childhood cancer survivors in the years after treatment. MethodsWe conducted four focus groups and three individual telephone interviews with 15 teachers, nine nurses and three other stakeholders, using inductive thematic analysis inspired by Braun & Clark. Nvivo v12 was used for data-management. ResultsThree main themes were developed; “Perceived parent attitudes and facilitation”, “The missing link – lack of communication and collaboration”, and “Enabling mastery, inclusion and thriving”. Parents were perceived to be the sole managers of providing cancer information and school-related follow-up needs. Teachers and other stakeholders experienced the nonexistence of information from specialist healthcare services and poor communication within the municipality. Teachers went to great lengths to meet survivors’ pedagogical needs and facilitate peer interactions. Teachers voiced a need for more cancer and late effect knowledge, not being dependent solely on parents' for information. ConclusionsTeachers and other stakeholders have essential roles in the continuing school experience for survivors. A more regulated teamwork between the stakeholders in the municipalities and the specialist healthcare system could ensure tailored late effect information at school. Implementing formal support could enable a co-creation of a personalized follow up that could relieve the burden on survivors, parents and teachers.