Accessibility statement

Learning from parents’ experiences of palliative care for their child

This study will explore parental experiences and perspectives of what good palliative care for children and young people looks like and how the guidelines for children’s palliative care in England feature in these experiences. The study will provide important evidence to inform future policy and service developments in children’s palliative care.

Background to the Research
Around 4,500 infants and children die in England and Wales every year, and the number of children and young people with conditions that will shorten their life (life-limiting conditions) is rising. In children, more than 300 conditions are life-limiting, including Duchenne muscular dystrophy and cancer.

Palliative care is an important element of the care that these children need and focuses on improving quality of life for children and their families throughout a child’s life and death. In England, palliative care is mainly provided by NHS and children’s hospice services, but this varies across the country. This means that children, even with similar healthcare needs, may have quite different experiences of palliative care.

In 2016, guidelines for children’s palliative care in England were published to ensure all children receive the care they need, including care provided by doctors with training in children’s palliative care, nursing care that enables children to stay at home at the end of their life and better planning for what happens when they die.

However, there is little evidence about what good experiences of palliative care for children are and how the guideline recommendations may feature in these.

The Study

This study aims to explore parents’ experiences and perspectives of good quality palliative care for children and young people. We will do this by listening to parents’ accounts of the palliative care their child and family receive and examining these accounts to understand what good palliative care is. We hope to include the parents of around 30 children and young people (age 0-17 years) who are either receiving palliative care or who have died.

Patient and Public Involvement

We are working closely with the Martin House Research Centre (MHRC) Family Advisory Board (FAB), which is an advisory board of parents and other adult family members of children with a life-limiting condition including parents of a child who has died.