Availability of less invasive prenatal, perinatal and paediatric autopsy will improve uptake rates: a mixed‐methods study with bereaved parents

Abstract

Objective To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake. Design Mixed methods study. Setting Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations. Sample Eight hundred and fifty‐nine surveys and 20 interviews with bereaved parents. Methods Cross‐sectional survey and qualitative semi‐structured telephone interviews. Main outcome measures Likely uptake, preferences, factors impacting decision‐making, views on different autopsy methods. Results Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy ( MIA ), non‐invasive autopsy ( NIA ) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA . Regarding parental preferences, 45.5% preferred MIA , 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35–0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy. Conclusion Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care. Tweetable abstract Mixed methods UK study finds less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience.

“The communication and support from the health professional is incredibly important”: A qualitative study exploring the processes and practices that support parental decision‐making about postmortem examination

“…The findings from this research are drawn from one of the largest studies on the experience of parental consent for PM that has been conducted in the United Kingdom . Our findings suggest that while some bereaved parents are very clear about whether PM examination is “right” for them at the time of approach, there are a significant number who do not have a strong opinion and for whom the actions of health care staff caring for them at that time are highly influential.…”

“…This qualitative study conducted in the United Kingdom comprises data gathered from a cross‐sectional survey, interviews, and a focus group. For a more detailed account of the study design and recruitment, please refer to our published papers and Data S1.…”

“…As part of a National Institute for Health Research Health Technology Assessment project (14/168/06), the authors conducted a mixed methods research programme to look at key stakeholders' views, experiences, and attitudes towards different methods of PM including less invasive approaches. Stakeholders included bereaved parents, health professionals, HM Coroners, and religious groups . During that research, we collected data on the processes and practices that support parents with decision‐making and the factors that act as facilitators or barriers to parental consent, which we present in this manuscript.…”

Ultrasound examination: The key to maximising the benefits of advances in molecular diagnostic technologies

“…However, in this issue we hope to persuade you otherwise, as the contents of this special issue on ultrasound and genetic syndromes demonstrate how expert sonography and other fetal imaging is key to maximising the benefits of the technological advances we are seeing in molecular diagnosis. While largely focused on prenatal imaging, we also show how combined prenatal ultrasound and postnatal MRI examinations may be able to replace traditional post‐mortem examination, an approach welcomed by both the public and patients …”

A sonographic approach to the prenatal diagnosis of skeletal dysplasias

“…When the pregnancy ends in fetal demise, an expert post‐mortem examination by a perinatal pathologist is recommended. When parents decline full post‐mortem, a minimally invasive approach, or one limited to external examination and radiology, may enable diagnosis and may be more acceptable to parents and health professionals . Again, this should be supported by DNA analysis, which will increasingly enable definitive diagnosis.…”