Children with incurable illness share their experiences of illness and everyday life

The long-term aim of this study is, through the children’s own voices, to increase knowledge of how severely ill children experience living with a limited time left to live. By enhancing understanding of this, healthcare professionals can support the child to live in the way they wish during the time remaining, thereby improving palliative care for children and their families.

The Health and Medical Services Act (SFS 2017:30), the Patient Act (2014:821), and the Convention on the Rights of the Child emphasise the importance of ensuring that the child’s voice is heard. Despite this, there are currently few studies in which children with serious illness have themselves been asked about what it is like to live with a condition that cannot be cured. In most cases, the child’s experiences are sought via, for example, a parent or guardian who responds on the child’s behalf, or via professionals through quantitative datasets such as registry data.