Title: Parent and professional experiences of 24/7 paediatric end-of-life care: a mixed methods study
Funder: Marie Curie

Abstract: We define out-of-hours as care delivered between the hours of 17:00-09:00 and at weekends. Background Making end-of-life care available 24/7 is one of the NHS Foundations for the Ambitions of Palliative and End-of-Life Care (PEoLC) and remains the top UK research priority for palliative care. Children and young people and their families should have access to specialist medical advice and skilled nursing support services where, when, and how they need it, as recommended within the government commitment to end-of-life care and current National Institute for Clinical Excellence guidelines. The distress of uncontrolled symptoms cannot wait for ‘opening hours’ and inefficient care planning across the in-hours and out-of-hours interface is a key barrier to achieving timely access to symptom control, choice of place of care at the end of their lives, and good CYP and family experience. Adults at end-of-life are offered community nursing 24/7 when required, but this is not always available to children. The North East and Yorkshire region is made up of four ICBs: NHS Humber and North Yorkshire, NHS North East and North Cumbria, NHS South Yorkshire, and NHS West Yorkshire. Across these areas there is significant variation in access to, and provision of, paediatric end-of-life care and as highlighted in a recent report by Together for Short Lives, for many families in this region, there is no 24/7 access to children’s nursing care and advice from a paediatric palliative care consultant. This means that the NICE guidance is not being met. Where care is being delivered out of hours, this is largely provided by third sector organisations, such as children’s hospices or by children’s community nursing services whom ‘step-up’ out of goodwill. In order to support the decision making and provision of 24/7 paediatric palliative care in the North East and Yorkshire region, this study will develop a new service intervention to help the delivery of, and access to, 24/7 paediatric end-of-life care. By conducting this development work, through exploring parent and professional experiences and needs, and patterns of care at end-of-life, this study will develop an intervention grounded in evidence, which will work in everyday practice. The new intervention components will reflect the current service landscape in the region, incorporate evidence from the region and beyond, will be context specific, and ultimately ensure that CYP and their families have access to specialist medical advice and skilled nursing support where, when and how they need it. Aim The proposed study aims to develop a complex intervention to help the delivery of, and access to, 24/7 paediatric end-of-life care in the North East and Yorkshire region, by assessing parent and professional experiences and needs, and patterns of care at end-of-life and outcomes in other regions where interventions have been developed. Methods A mixed-methods approach will be used to understand models of practice and access, and to explore parents’ and professionals' experiences in order to develop a service intervention. A logic model has been developed to provide a graphical representation of the programme theory, this will be refined according to findings in order to develop an intervention and demonstrate scalability, recommendations/guidance for best practice will also be produced. Workstream 1: focus groups with specialist and generalist professionals to explore what they think about current provision of paediatric palliative care, their expectations and needs of a new service and the barriers and facilitators of implementation. Workstream 2: semi-structured interviews with parents to explore their experiences of accessing and receiving 24/7 care; and their expectations and needs of a new service. Workstream 3: a retrospective cohort study on the use of A&E and emergency hospital admission and place of death in the last 12 months of life will assess disparities within the region, and quasi experimental methods will evaluate the impact of interventions introduced elsewhere to identify possible good practice. Proposed findings The findings of this study will support the development of an evidence informed intervention to deliver 24/7 paediatric palliative care, which best support parents, and will mitigate against poor end-of-life and bereavement outcomes. Training and awareness raising will improve professionals’ skills and confidence, positively benefiting staff, children and young people and their families. A logic model for 24/7 care delivery, refined based upon findings and knowledge exchange activities will be produced. Recommendations/guidance for best practice will be developed and shared so that the service can be replicated across the UK. Recommendations/guidance for parents to inform their care and support of their child, will also be developed in partnership with parent advisors, in addition to a plain English summary.

Lay abstract: Children and young people (CYP) with life-limiting conditions are living longer with increasingly complex symptoms. It is difficult for families to know what to do if something goes wrong out-of-hours when their usual health care services are not available. Providing good quality care and support, round the clock, across a range of services, is key to supporting CYP and families’ choices over place of care and symptom control. All CYP and families should be able to access specialist advice and support 24/7 at end-of-life. Currently, 24/7 children’s palliative care is not provided in the same way across the UK. We do not have a good understanding of how this is provided, what professionals think of current provision, what would help them deliver better care; or of CYP and families’ experiences of accessing care 24/7, and what they need. In order to support the decision making and provision of 24/7 paediatric palliative care in the North East and Yorkshire region, this study will design new ways of providing 24/7 paediatric end-of-life care to help the delivery of, and access to, 24/7 paediatric end-of-life care. The service will be designed to meet the needs of both families receiving 24/7 end of life care and of professionals and services delivering this care. We will speak to families to find out about their experiences of 24/7 end-of-life care. We will speak to professionals to find out what they think about current provision of 24/7 end-of-life care, and their expectations and needs of a new service. We will look at data that is already collected by the NHS to find out about differences across the region in A&E and emergency hospital admissions in the last 12 months of life, and in where children die. So that we can find examples of good practice, we will also compare the region to other areas where there are other 24/7 end-of-life care services. Finally, in partnership with parent advisors, we will design new ways of providing 24/7 end-of-life care; recommendations/guidance for best practice so that the service can be replicated across the UK, and also for parents to inform their care and support of their child; and a plain English summary. Outputs will be distributed through key stakeholders, managed clinical networks, and parent facing organisations.

Research activity codes: 7.2 END OF LIFE CARE;7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE