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

  f.gibson@surrey.ac.uk

• Sponsor organisation

  JOINT RESEARCH AND DEVELOPMENT OFFICE FOR GOSH/ICH

• Duration of Study in the UK

  0 years, 10 months, 25 days

• Research summary

  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.

• 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