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)

TL;DR

This study explores the challenges of school attendance for children in palliative care in Italy and highlights the need for better support systems.

Contribution

The study identifies factors affecting school inclusion for children with severe disabilities in palliative care and emphasizes the role of family choices and educational system inadequacies.

Findings

School attendance is remarkably low among students with severe disabilities in palliative care.

Family choices significantly influence school attendance due to inadequate educational services.

Investing in teacher support and training is crucial for improving school inclusion.

Abstract

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.

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.

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

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.