Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting

Abstract

BackgroundPostmortem examination is the single most useful investigation in providing information to parents about why their baby or child died. Despite this, uptake remains well below the recommended 75%.ObjectiveTo address the question ‘what are the barriers and motivators to perinatal, prenatal and paediatric PM examination?’Search strategyKey databases including Pubmed and CINAHL; Cochrane library, websites of relevant patient organisations, hand search of key journals, first and last authors and references.Selection criteriaPeer‐reviewed qualitative, quantitative or mixed methods research examining factors affecting uptake or decline of perinatal or paediatric postmortem examination.Data collection and analysisNarrative synthesis; findings were compared across studies to examine interrelations.Main resultsSeven major themes describing barriers to postmortem uptake were identified: dislike of invasiveness, practicalities of the procedure, organ retention issues, protective parenting, communication and understanding, religion and culture and professional or organisational barriers. Six major themes related to factors which facilitated parental consent were identified: desire for information, contributing to research, coping and well‐being, respectful care, minimally invasive options, and policy and practice. There were a number of themes in the literature that reflected best practice.ConclusionFindings highlight the need for better health professional education and the fact some concerns may be mitigated if less invasive methods of postmortem were routinely available. New consent packages and codes of practice may have a positive impact on perception of examination after death. The landscape is changing; further research is necessary to assess the impact on postmortem uptake rates.Tweetable abstractSystematic review to explore the barriers and motivators to perinatal, prenatal and paediatric postmortem examination.

Minimally invasive perinatal and pediatric autopsy with laparoscopically assisted tissue sampling: feasibility and experience of the MinImAL procedure

“…Our findings suggest that the MinImAL procedure has a performance similar to that of standard autopsy in terms of the proportion of IUFD/stillbirth cases in which a cause of death is determined. Given that recent data indicate that LIA techniques are well accepted by parents and religious communities, these findings have implications for perinatal autopsy practice globally, as acceptability of standard autopsy continues to decline.…”

“Donating our bodies to science”: A discussion about autopsy and organ donation in Turner syndrome

“…Lewis identified seven potential barriers to requesting an autopsy: reluctance to permit invasive procedures, practical issues, and logistics of requesting an autopsy, preference to retain organs for burial, emotional distress, lack of communication between families and providers, lack of insight into the value of autopsy, and systematic professional or organizational obstacles (Lewis et al, 2018). The question about who should interpret and disseminate autopsy results, and whether genetic test results need to be made public, present formidable obstacles.…”

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

“…Dislike of the invasiveness of the procedure, desire to protect the baby or child from harm and religious objections have all been identified as parental barriers to standard autopsy . To address these concerns and improve uptake rates, a number of less invasive techniques have been developed and evaluated .…”