This study will increase understanding about the different ways in which end of life care is provided for children and young people, and examine how these different models of providing end of life care impact on children and their families.
Background to the research
Around 4500 babies, children and teenagers in the UK will require end of life care each year. Currently, the provision of this care varies across the country and little is known about how this variation impacts on children and their families. There are growing numbers of specialist palliative care services and children’s hospices in the UK, but there is little evidence to tell us how these services should be developed and what their role should be in supporting children and young people at the end of life. We also know very little about the costs of care and how best to use these resources to improve care for these children and their families.
This research has three linked studies
Study 1 (a survey) will identify the different models of providing end of life care for babies, children and young people (age 0-18 years) in the UK. To do this, we will ask all cancer services for children and teenagers, and other wards that provide specialist care to babies (neonatal units) and children (paediatric intensive care units) to tell us how end of life care is provided in their service, who provides this care and how much it costs.
Study 2 (a qualitative study) will learn more about these models by interviewing bereaved parents about their experiences of their child’s care at the end of their life, the impacts of this care, and how care could have been improved. We will also run group interviews with healthcare professionals to explore their experiences of meeting children’s end of life needs and their views on the factors that influence this.
Study 3 (a quantitative study) will investigate the impacts (which we call outcomes) of the different models of end of life care for children and their families. The findings from study 2 will help us to decide which outcomes to measure but these are likely to include quality of care at the end of life, place of death, whether care is planned (advance care planning), and treatments at the end of life. To do this, we will collect information from the medical records of around 4000 children treated in cancer services, neonatal units or paediatric intensive care units. We will also collect information from around 800 bereaved parents of children who received care in neonatal or paediatric intensive care units. We will use all this information to examine whether outcomes for children and families vary according to the different models of end of life care we identified in study 1, and assess the associated costs. If you would like to know more about this study and the data please click here:-
Patient and public involvement
Two groups of parents have identified this an important topic for research, suggested key outcomes to measure and provided input on how to involve families in the study. One bereaved parent is a member of the research team and a parent panel will input on what information to collect from families, how to do this and help the research team to interpret the results and develop information for parents and professionals at the end of the study.
We will work with parents, professional organisations and charities to disseminate the findings to inform future guidance and service development for end of life care for children
Contact us:- firstname.lastname@example.org
Read our ENHANCE Protocol (PDF , 898kb)