Regular schooling for young people in palliative care: attitudes, practices and meaning-making

Long on the bangs of educational policies, the schooling of pupils with cancer has been a major issue since the 1990s, enshrined in the latest ten-year strategy 2021-2030 for the fight against cancer. While the 5-year survival rate for pediatric cancers now exceeds 80%, some cancers unfortunately remain incurable. In such cases, young people can be supported by a regional pediatric palliative care resource team (ERRSPP), whose mission is to encourage the young person to continue their schooling, in a mainstream environment where this is medically possible and desired by the young person. Very few studies have focused on the specifics of this schooling in a mainstream environment for young people in pediatric palliative care (PPC).

This situation constitutes an unthought-of aspect of the educational institution, so antinomic do palliative care and schooling seem to be. The literature has particularly highlighted the fears and obstacles to mainstream schooling for young people with PPS. Those involved do not always understand the meaning of the schooling project in the face of impending death, point to a significant lack of initial and in-service training on the issue of illness and death, fear breaking medical confidentiality or evoke the fear of sudden death in the classroom. For teachers confronted with such an experience, coping with feelings of fear and anxiety, accepting that death is imminent, noting the young person's physical deterioration and having to deal with the consequences of death are all challenges. However, the school experience plays an important part in building the identity of the student-patient, and is generally a strong demand of young people with PPS, whatever the stage of the illness. Schooling in a mainstream environment enables young people to regain a sense of continuity, to socialize outside the medical sphere, not to lose their status as students, and to reappropriate their bodies and desires. The successful reintegration of young people with PPS into the mainstream school environment depends on good communication between the educational community, the family and the medical team. While accompanying a pupil in a palliative situation implies both a temporal and emotional investment on the part of the teacher, research also highlights the inner and outer resources that teachers can call upon, as well as the sense-making they operate a posteriori. Teachers report that they are enriched by this situation, which they frequently describe as a life lesson, noting the solidarity deployed by students and the co-construction of rituals with them after the young person's death.

This project aims to explore the experiences of the various players in these schooling projects - the sick pupil, his family, pediatric palliative care teams, teachers, health and social action staff, as well as the pupil's classmates -, adopting a longitudinal perspective, following the entire schooling, but also the management of the after-death period within the school, a blind spot in current research. Our objectives are: (1) to document teachers' attitudes to the inclusion of children with PDS in school, using a questionnaire specially developed for this population; (2) to explore the experience, practices and difficulties of schooling young people with PDS in a mainstream environment, and the support provided by the ERRSPP; (3) to question the school community's experience of death and the aftermath. This research will adopt a mixed methodology (mainly qualitative) and combine a sociological approach (observations, interviews, focus groups) and a psychological approach (questionnaires, diaries, focus groups).

This project is taking place in close collaboration with the Société Française d'Accompagnement et de soins Palliatifs and the Société de Soins Palliatifs Pédiatriques, and is in line with the orientations of the Plan national développement des soins palliatifs et accompagnement de la fin de vie 2021-2024.