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Tuesday, July 10 • 14:15 - 14:30
Best Early Career Investigator Finalist: E-2 Improving uptake of perinatal autopsy: Lessons learned from parents and key stakeholders

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Improving uptake of perinatal autopsy: Lessons learned from parents and key stakeholders

Celine Lewis1, Megan Riddington2, Melissa Hill3, Zahira Latif4, Monica Lakhanpaul5, Owen Arthurs6, John Hutchinson7, Neil Sebire8, Lyn Chitty9

1North East Thames Regional Genetics Service; Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom
2Genetics and Genomic Medicine, Great Ormond Street Hospital and UCL Institute of Child Health, London, United Kingdom
3NE Thames Regional Genetics Laboratory, Great Ormond Street Hospital NHS Foundation Trust & UCL Great Ormond Street Institute for Child Health, London, London, United Kingdom
4College of Medical and Dental Sciences, Birmingham, United Kingdom
5Faculty of Population Health Sciences, London, United Kingdom
6Department of Radiology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom
7Department of Histopathology, London, United Kingdom
8Department of Histopathology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom
9Genetics and Genomic Medicine, UCL Great Ormond Street Institute of Child Health and North-East Thames Regional Genetics Service, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK, London, london, United Kingdom

Objectives

Autopsy examination is the single most useful investigation in providing information to parents about why their baby or child died. Nevertheless, uptake rates have declined globally due to dislike of the invasive procedure, poor communication and religious objections. A number of less invasive techniques have been developed in recent years including MRI based imaging techniques with/without laparoscopic examination and organ biopsy. Here we aim to:

1) understand current barriers to parental consent to autopsy,

2) explore parental views towards less invasive autopsy,

3) examine attitudes of Muslim and Jewish communities towards less invasive techniques.

Methods

This was a qualitative study involving thematic analysis of: (1) free-text comments from 856 questionnaires from bereaved parents; (2) interviews with 20 questionnaire responders; (3) interviews with 16 religious and community leaders (6 Muslim, 6 Jewish and 4 from other dominant faiths in the UK as a comparator); and (4) ten focus groups with Muslim (n=60) and Jewish (n=16) parents.  Bereaved parents were recruited through seven hospitals in England and four support groups in the UK (Antenatal Results and Choices, Sands, The Lullaby Trust and Child Bereavement UK). Muslim and Jewish parents were recruited through key informants from those communities.

Results

Regarding standard autopsy, for some parents the need for answers outweighed invasiveness concerns, however for others the child having “been through enough” was a barrier to consent. Non-invasive autopsy (NIA) enabled the child to “rest in peace” and put parents “at ease”. Minimally invasive autopsy (MIA) was a “good compromise” as it overcame limitations of NIA but enabled tissues samples to be taken. Muslim and Jewish participants agreed that whilst NIA was religiously permissible, MIA was less acceptable but where required by law was more acceptable than standard autopsy. The need to bury the body swiftly was a key priority.

Conclusions

The majority of parents are undecided about autopsy in the initial period after loss. Availability of less invasive options is likely to have a significant impact on uptake rates and decrease the burden of decision-making for many parents. Clear guidance around timing, communication and support are also likely to have a positive impact. Our research suggests that less invasive autopsy offers a viable alternative to many Muslim and Jewish parents who currently decline. These findings are relevant to healthcare providers involved in offering or conducting fetal, perinatal or paediatric autopsy, especially in countries with significant Muslim and/or Jewish communities.


Moderators
avatar for Neeta Vora

Neeta Vora

MFM-Geneticist, University of North Carolina, Chapel Hill

Speakers
avatar for Celine Lewis

Celine Lewis

Senior Research Social Scientist, Great Ormond Street Hospital and UCL Institute of Child Health


Tuesday July 10, 2018 14:15 - 14:30 CEST
Queen Elisabeth Hall