Educating Children with Life-Limiting Conditions
Research leads to the publication of a new book to help teachers support 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. 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. This 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 is based on research which began in 2010. Kathryn Summers (Child Nursing) and Dr Sally Robinson (Public Health) carried out an international literature review in response to children’s nurses reporting that teachers needed greater support. The published paper, Evaluation of the Educational Support for Teachers who teach Children with Life Limiting Illness in Mainstream Schools available at http://create.canterbury.ac.uk/12599, concluded that sick children and their families find it very difficult to meet school expectations alongside dealing with the appointments, treatment, symptoms and consequences of the illness. They wanted teachers and schools to provide more support and understanding, but the research also showed that there appeared to be no related professional education for the teachers.
We collaborated with the Dr Alison Ekins (Special Educational Needs/Inclusion) and Ian Durrant (Education/Psychology) from the Faculty of Education to carry out a survey and interviews with teachers. The project’s findings were published in Teaching for Life, available at http://create.canterbury.ac.uk/12864. Dr Sally Robinson 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.”
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.”
Ekins, A., Robinson, S., Durrant, I. and Summers, K. (2017) Educating Children with Life-Limiting Conditions. A Practical Handbook for Teachers and School-based Staff. London: Routledge
https://www.routledge.com/Educating-Children-with-Life-Limiting-Conditions-A-Practical-Handbook/Ekins-Robinson-Durrant-Summers/p/book/9781138678095