Award Title: Care of the deceased child after an expected death: understanding how to deliver high quality, equitable services that meet the needs of bereaved parents.
Funder: Health Education England

Abstract: BackgroundAround 3600 children die annually in England and Wales and the majority of these deaths occur either in the neonatal period or due to a life-limiting condition1. Paediatric Palliative Care (PPC) includes the care of these children from diagnosis, through life and into bereavement2. It is recognised that the body of research underpinning PPC is inadequate3, and research relating to the post-death care of children, between the time of death and their funeral is almost non-existent. Most deceased children are cared for either in a mortuary or in a 'cold bedroom' in a children's hospice but increasing numbers of families are choosing to care for their deceased child at home. The effects of bereavement after a child has died are well-documented 4-7. Professionals can have a positive impact on long term grief if they are well trained in supporting parents at this time7-12 , however, staff often do not understand the needs of recently bereaved parents nor do they feel confident to provide support13,14. Aims:	To understand the experiences and needs of bereaved parents in the care of their child after an expected death, during the time between the death and the funeral. 	To influence service provision by informing the choices and care offered to bereaved parents, and to inform education and support for staff providing post-death care.Objectives:	To understand the historical, cultural and social context for delivering post-death care to children (a) 	To identify and describe current practices in the way that post-death care is delivered (b), and the way nursing staff are trained and supported (c). 	To understand bereaved parents' experiences of, and needs related to, their child's post-death care (d) and nurses' experiences of, and needs related to, providing post-death care to children (e) 	To develop ways of teaching and supporting staff, including the co-production of digital stories and simulation based education (f)Plan: Work package 1: 	Scoping of historical, cultural and current social context of the care of children after death and also in regards to the way nurses learn to perform this aspect of care. 	Scoping of current practice; questionnaires to be sent to bereavement teams in all children's hospitals and hospices in England to identify and describe current practices.Work package 2:	In-depth interviews with parents whose child died while receiving care from a tertiary PPC team. 	Interviews with nurses working in hospitals, community teams and children's hospices. 	(Total = 25)Work package 3: 	Co-production of guidance for service provision and education resources, including the creation of 'digital stories', describing parental experiences of post-death care.Summary of potential benefits: This novel study has the potential to powerfully impact the experience and well-being of bereaved parents. This will occur directly by making pragmatic suggestions regarding standardising evidenced based service provision, increasing opportunity for informed decision making and improving professional education. The NHS will benefit from this study by developing resilient staff who understand the value of their role in providing post-death care to children and supporting their parents, reducing emotional distress and 'burnout'12,15.

Lay Abstract: Background Around twelve children die every day in England and Wales but as professionals we have been relatively slow to understand the needs of bereaved families, partly due to a fear that involving them in research is unethical or harmful. However, it is becoming clearer that many bereaved parents want to take part in research and doing so can be a positive experience for them, and helps to inform service provision. The contact parents have with their child's body after death is influenced by many factors such as culture, religion, views of others and the choices offered to them. Some choose not to see their child's body at all, whereas others spend time with them, washing and dressing them, reading to them, or taking photos. Different practices exist in different places, with some families being offered choices in the care of their child and others receiving no choice. However, the extent of variation between service providers is unclear, and evidence of parents' preferences is lacking. Deceased children may be cared for in a hospital mortuary, a 'cold bedroom' in a hospice or in the family home. Nurses who provide post-death care to children frequently report feeling anxious about knowing what to do and say that a lack of research and understanding about parent's needs makes it challenging to know how to support them. Aims This study aims to understand how to deliver high quality, equitable post-death care to children, that meets the needs of bereaved parents. The focus is on expected death following a child being very unwell, because the needs and experience of their parents are likely to be different from those whose child dies suddenly and unexpectedly. Objectives:	To understand the historical, cultural and social context for delivering post-death care to children (a) 	To identify and describe current practices in the way that post-death care is delivered (b), and the way nursing staff are trained and supported (c). 	To understand bereaved parents' experiences of, and needs related to, their child's post-death care (d) and nurses experiences of, and needs related to, providing post-death care to children (e) 	To develop ways of teaching and supporting staff, including the co-production of digital stories as examples of best practice (f)Participants Participants will be parents whose child has died whilst receiving care from the Palliative Care Team at Great Ormond Street Hospital, and nurses who provide post-death care for children working in hospitals, hospices and within family homes. Study design Bereaved parents and professional experts have been consulted and will continue to advise in regards to the purpose, design and ethical issues related to this study. Work Package 1: Bereavement teams in all children's hospitals and hospices in England will be sent a questionnaire to identify current practices and training. Work package 2: 25 parents will be interviewed within the home about their experiences and the decisions they made about the care of their child after death. 15 nurses will also be interviewed, within the clinical setting, about their experiences and training and support needs. Interviews will be in-depth, participant led and sensitively managed. Work package 3: With the support of a bereavement charity, a sample of parents will be invited to make a 'digital story' of their experience of post-death care using photos of their choice (e.g. pictures of where their child was cared for, toys/photos they placed with their child after death, or of significant people). Participants will be offered support following data collection. Sharing the findings The findings will be shared with participants and professionals working throughout the palliative care community and lay audiences via conferences and publications.

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