Award Title: End of Life Care for Infants, Children and Young People: a mixed methods evaluation of current practice in the United Kingdom
Funder: Department of Health and Social Care

Abstract: Aims of the research_x000D_
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._x000D_
Background to the research_x000D_
Around 4500 babies, children and teenagers in England and Wales 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._x000D_
Design and methods_x000D_
This research has three linked studies._x000D_
Study 1 (a survey) will identify the different models of providing end of life care for babies, children and young people (age 0-25) in the UK. To do this, we will ask all cancer services for children, teenagers and young adults, 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._x000D_
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._x000D_
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 identify in study 1, and assess the associated costs._x000D_
Patient and public involvement_x000D_
Two groups of parents have identified this as 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._x000D_
Dissemination_x000D_
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.

Lay Abstract: Research question_x000D_
Do outcomes for infants, children and their families, and resources required, vary depending on the_x000D_
model of End of Life (EoL) care that they receive?_x000D_
Background_x000D_
4500 children die in England and Wales every year and although there are increasing paediatric palliative care and hospice services, these services vary in their professional configuration, services provided, funding sources and population served. There is little evidence on the models of care, quality of care, resourcing and outcomes of children and their families who use these services. Most of the recommendations in the NICE guidance are based on low quality_x000D_
evidence._x000D_
Aims and objectives_x000D_
Aim: To identify and investigate different models of providing EoL care for infants, children and young_x000D_
people, in terms of outcomes and experiences for children and parents, resource use and costs to families and the NHS._x000D_
Objectives:_x000D_
1.To identify and describe current models of delivering EoL care to infants, children and young people_x000D_
in the UK._x000D_
2.Identify barriers and facilitators to implementation of these EoL models_x000D_
3.To assess inequalities in access/availability of these models of care._x000D_
4.To explore whether the experiences and outcomes for child or parent vary dependent on the model of EoL care_x000D_
received._x000D_
5.To compare the resource implications of the different models of EoL care for the NHS and families._x000D_
Methods_x000D_
This mixed methods study of three linked workstreams and cross-cutting health economics theme will_x000D_
examine three exemplar clinical settings which care for >50% of children that die each year:_x000D_
cancer services, paediatric intensive care units (PICU) and neonatal units (NNU)._x000D_
WS1: A questionnaire survey of Service Leads will systematically capture data relevant to current_x000D_
practice to providing EoL care, develop a typology of models of EoL care and associated resource use_x000D_
and costs. These models will inform the sample selection in WS2 & 3 and the analyses in WS3._x000D_
WS2: A qualitative study will explore how these models are implemented and experienced, and identify_x000D_
the important outcomes and resources associated with EoL care. Focus groups with healthcare_x000D_
professionals will explore experiences of meeting EoL care needs and views on the factors affecting_x000D_
access to EoL care including identification of any inequalities and barriers in access. Interviews with_x000D_
bereaved parents will explore experiences of their child’s treatment and care towards the end of their_x000D_
life and associated costs to them._x000D_
WS3: We will use routinely collected data to compare EoL outcomes (e.g. high intensity treatments,_x000D_
place of death) in children with cancer who have died and had different EoL models of care. Then_x000D_
prospective data collection in PICU and NNUs will collect data on 800 dying children including other_x000D_
outcomes (e.g. choices given to parents, symptoms). Data collection from the parents after death will_x000D_
provide additional information. We will assess whether outcomes vary according to the different_x000D_
models of EoL care and assess the associated resource use and costs._x000D_
Timelines for delivery_x000D_
This 4 year study includes ongoing dissemination to key audiences (parents, service providers,_x000D_
commissioners) via knowledge exchange events, web-based platforms, social media and_x000D_
clinical/academic forums._x000D_
Anticipated impact and dissemination_x000D_
The results will inform service delivery in order to utilise finite resources to maximise impact

Research Activity Codes: 7.2 END OF LIFE CARE
Health Categories: GENERIC HEALTH RELEVANCE