Educating children with life-limiting conditions

15 May 2017

A new book by academics at Canterbury Christ Church University aims to help teachers and schools understand and provide better support for pupils with life-limiting or life-threatening conditions.

There are thought to be 49,000 children and young people in the UK diagnosed with a life-limiting or life-threatening condition, with many of these children continuing to attend mainstream schools.

Educating Children with Life-Limiting Conditions is one of the first books to explore and respond to teachers’ anxieties surrounding the medical, educational, emotional and ethical issues that arise from educating children with these conditions. The book also provides the key information that teachers need as well as offering practical advice.

The book is based on research carried out by a team of Christ Church academics from across both the Education and Health and Wellbeing Faculties, demonstrating how a multi-disciplinary approach can help the needs of the most vulnerable pupils in schools. Their expertise and experience spans teacher education across a wide range of schools, children’s nursing, special educational needs, health education, play therapy, psychology and inclusion.

Dr Sally Robinson, Principal Lecturer in Health Promotion and Public Health, said: “The Children and Families Act of 2014 stated that schools are required to support pupils with medical conditions.

“Our research with teachers revealed that they felt very anxious when trying to cope with the complexities of children with life-limiting or life-threatening conditions and their education, whilst also with trying to support highly vulnerable parents, siblings and other children in the class.

“Teachers weren’t sure where to get the support that they needed, and were also uncertain about handling a bereavement in school.

“Our earlier research confirmed that children with life-limiting or life threatening conditions, and their parents, find it very difficult to meet school expectations alongside dealing with the appointments, treatment, symptoms and consequences of the illness. They want teachers and schools to provide more support and understanding. This was the impetus for the research with teachers and the book.”

The book describes, and then addresses, the anxieties raised by the teachers and provides helpful information about Government policy, common life-limiting and life-threatening conditions and treatments; how teachers and the whole school can best support the child’s education and how to communicate with a child, family and other children in school about serious illness, death and bereavement.

Dr Robinson concluded: “By writing a book that is directly based on listening to teachers, we hope that school staff will feel more confident and informed about how to support these children and enable them to reach their full potential.”

Educating children with life-limiting conditions was written by Dr Alison Ekins, Senior Lecturer in the School of Childhood and Education Sciences, Dr Sally Robinson, Principal Lecturer in Health Promotion and Public Health, Ian Durrant, Senior Lecturer in the School of Childhood and Education Sciences and Kathryn Summers, Principal Lecturer in Children’s Nursing. It’s published by Routledge. 

Notes to editor

  • A life-limiting condition is one for which there is no cure, such as muscular dystrophy, and a child or young person will die at a relatively young age. A life-threatening condition is one where medical treatment sometimes works, but sometimes fails, such as cancer or organ failure.

Canterbury Christ Church University

Canterbury Christ Church University is a modern university with a particular strength in higher education for the public services.

With 17,000 students across Kent and Medway, its courses span a wide range of academic and professional subject areas.

  • 96% of our UK undergraduates were in employment or further studies six months after completing their studies*.
  • We are one of the South East’s largest providers of education, training and skills leading to public service careers.

*2014/15 Destinations of Leavers from Higher Education survey



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Last edited: 14/12/2018 23:21:00