I have the right to carry a backpack: access to the school of children and adolescents in paediatric palliative care in the Veneto Region (Italy).

BACKGROUND

This universal right of access to school applies to all children and adolescents, including paediatric palliative care (PPC) patients. PPC patients display several different levels of disability and cognitive impairment that pose challenges to school inclusion. Therefore, strategies to offer an efficient and tailored school experience that relies on the support of school assistants and support teachers are essential.

METHODS

In this retrospective study, data of patients of school age (3–19 years) followed at the Paediatrics Hospice of Padua were collected cross-sectionally from clinical charts, routine visits, and calls to patients and caregivers.

RESULTS

Our results showed that school attendance by students with severe disabilities is remarkably low, especially for those children displaying complex care needs, resulting in a high care burden on families. Notwithstanding, family choices significantly influence school attendance, which may be a consequence of the inadequacy of the services offered by the education system, linked to organisational and structural factors

CONCLUSIONS

It is vital to identify the key issues and strengths of the current educational system to develop effective strategies that help families and promote school involvement. Investing in teacher and staff support, along with ongoing training for school personnel, is crucial.