RARE insight into what children with life-shortening and life-threatening conditions think about living, dying and their wellbeing is to be given by a new academic research project.
Youngsters will have the opportunity to illustrate their views on their hopes, desires and what they feel about their contribution to and support, or lack of it, from society.
Their perceptions will be recorded by an enlightening joint Manchester Metropolitan University and The University of Sheffield study called 'Life, Death, Disability and the Human: Living Life to the Fullest'.
Start a conversation
Co-investigator Professor Katherine Runswick-Cole, Professor of Critical Disability Studies and Psychology at Manchester Met, said: "We want to listen to what children and young people with life-limiting or life-threatening impairments have to say about their lives and to start a conversation about what it means to have a good life.
"Too often other people speak for children and young people about their lives, their wishes and aspirations and this project seeks to listen to children directly."
Children and young people involved in the project will use the arts, including painting, drama, film making and sketching, to tell their stories.
Their works will then be used to help raise visibility and awareness of how children and young people see themselves.
Three year project
The £545,000 research project funded by Economic and Social Research Council will begin on April 1 and run for three years.
It is hoped the views gathered will be used by academics and a host of civil society organisations, professionals and communities.
Prof Runswick-Cole said: "Children and young people with life-limiting or life-threatening impairments are often excluded from their communities because of a lack of access and resources to meet their needs.
"Society's discomfort around talking about death, and especially the death of children and young people, means that children and young people's experiences and views can be ignored."
The activity sessions with the children will be carried out with the help of partners Purple Patch Arts, a Yorkshire-based project educating people with learning disabilities, and DMD Pathfinders, a charity promoting choice, control and quality of life for teenagers and adults with fatal genetic muscle-wasting condition Duchenne Muscular Dystrophy.
See more details at: livinglifetothefullest.org