The Care after death study: Version.1
Research type
Research Study
Full title
Improving the care of children who die after receiving palliative care: understanding how to deliver high quality, equitable services that meet the needs of bereaved parents.
IRAS ID
316043
Contact name
Faith Gibson
Contact email
Sponsor organisation
JOINT RESEARCH AND DEVELOPMENT OFFICE FOR GOSH/ICH
Duration of Study in the UK
0 years, 10 months, 25 days
Research summary
Summary of Research
This study has been funded by the National Institute of Health Research to improve services offered to parents after the death of a child, by gaining a better understanding of the experiences and needs of both parents and nurses.
There are a range of places a child can be cared for after an expected death, including within a mortuary, in children’s hospice or within the family home. Despite increasing evidence that many parents benefit from interventions which provide them with time to be with their child after death, there is still significant variation in practices, resulting in inequity. There is growing evidence of the need to ensure parents are offered clear choices in during this incredibly difficult and sensitive time, and yet it is also known that nurses often feel unsure about their role in post-death care, fearing saying or doing the “wrong thing”. It is intended that this study will bring direct benefits to both parents and professionals.The study comprises of two work-packages:
1: A Mapping Exercise:
To understand the current practices across the UK in terms of where and how children are cared for between the time of death and their funeral. This will involve inviting members of the National Children’s Hospital Bereavement Network to complete an online questionnaire.2: In-depth interviews:
Parents whose child had previously received care from the Louis Dundas Palliative Care team at Great Ormond Street Hospital and nurses working within clinical areas supported by the team will be invited to participate in in-depth interviews.Summary of Results
This study aimed to identify how we can improve care of children who sadly die, better meeting the needs of their parents, by understanding more about the experiences of both parents and nurses when providing care after death.
The study focused on children who received palliative care, meaning their death was expected. Experiences of parents whose child dies unexpectedly are likely to be different and this needs investigating separately.
There have been two parts of this study. Firstly, hospital and Children’s Community Nursing teams across England were invited to complete a survey to discover more about the choices and support offered to families after the death of a child. We also asked about how nurses are trained in care after death.
We found differences in the choices and support offered to parents in different parts of the country, and some are not offered a choice at all about whether their child is cared for in a mortuary, hospice bereavement suite or in their own home. There is also variable access to cooling equipment that can slow bodily changes.
Secondly, 30 interviews were completed with 17 parents and 16 nurses exploring individual experiences of post death care. Participants were parents whose child received care from Great Ormond Street Hospital (GOSH) or nurses who employed by GOSH. However, the researchers invited participants with a range of experiences, ensuring that participants with experience of care at home and in hospices were included.
The findings demonstrate how unique each families experience is and the importance of providing individualised care and choices for families, and better training for nurses.
There has been significant interest from organisations across the country. The researchers will work with these teams, developing standards for care meaning all families can be offered same choices so they can make decisions right for them.REC name
West of Scotland REC 5
REC reference
23/WS/0099
Date of REC Opinion
20 Jul 2023
REC opinion
Further Information Favourable Opinion