Personalising examination after death for bereaved parents
Research type
Research Study
Full title
Personalising examination after death to improve experience for bereaved parents
IRAS ID
198952
Contact name
Neil Sebire
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Why: Extensive literature indicates that perinatal and paediatric post-mortem examination (autopsy) provides additional information in around one third of cases. However, for the majority of parents for whom the findings of a post-mortem examination may be beneficial, the traditional autopsy is unacceptable, with no alternative currently offered. The option of non-invasive autopsy based on post-mortem MRI examination (NIA) or minimally invasive autopsy (MIA) based on post-mortem magnetic resonance imaging (MRI) and endoscopic assisted tissue sampling (MIA) have been developed. The aim of this study is to conduct mixed methods research to assess how acceptable NIA/MIA are to patients and the public in order to inform potential uptake of the technique for subsequent performance of a larger clinical trial or introduction into clinical practice.
What: The views and preferences of parents of children, infants or fetuses requiring post-mortem investigation, as well as other key stakeholders, towards standard autopsy and MIA/NIA.
Who: As well as including bereaved parents we will also explore the views of members of patient support groups (who may themselves have been approached about post-mortem investigations) and patient advocates, representatives of religious or minority ethnic groups who may have specific views or beliefs towards post-mortem examination and other key stakeholders in end of life care including health professionals, commissioners and HM Coroners.
How: This will be a mixed methods study involving a questionnaire, in-depth interviews and focus groups.
Where: Patient participants will be recruited from either UCL Partner hospitals or Leicester Royal Infirmary. We will also recruit patient participants who may have experience of autopsy through the patient groups Antenatal Results and Choices (ARC), Stillbirth and Neonatal Death Charity (SANDS) and the Lullaby Trust. Professional participants will be recruited through appropriate professional organisations and departments across England. Religious or minority ethnic groups will be recruited through community and religious centres.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
16/LO/0248
Date of REC Opinion
4 Apr 2016
REC opinion
Further Information Favourable Opinion