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Published on: September 27, 2020
Navigating arrested parenthood: Bereaved parents' and healthcare professionals' experiences of less-invasive autopsy
Holly Ellard1, Ulrika Kreicbergs2, Jo Wray3
1Population, Policy and Practice Department, University College London Great Ormond Street Institute of Child Health, London, UK; Department of Clinical and Biomedical Sciences, University of Exeter, Exeter, UK.
Background:
Little is known about the experiences of bereaved parents who agree to less-invasive autopsy (LIA) investigations following pregnancy loss. This study aimed to explore parental and professional views and experiences of LIA using a new imaging technique, micro-focus computed tomography (Micro-CT).
Methods:
This mixed methods study involved interviews and surveys with parents offered LIA using Micro-CT at our institution and healthcare professionals (HCPs) involved in service delivery.
Results:
Interviews were conducted with 14 parents that consented to Micro-CT and 6 HCPs. Surveys were returned from 2 parents that declined Micro-CT and 19 HCPs. Pregnancy loss was a devastating experience that pushed families into a liminal state of 'arrested parenthood'. Increased and more acceptable choice over post-mortem investigations (PMI) enabled them to reclaim a degree of control taken away by their loss and reassume the parental role. Preference for LIA was sometimes shaped by a desire to protect their baby from harm. Interactions with HCPs were central to experiences of navigating arrested parenthood. Parents had diverse communication needs, inextricably linked to their grief response; control over the pace of conversations about PMI, levels of contact whilst awaiting PMI results, and how and when they received their results became important mechanisms through which parents could manage exposure to upsetting information.
Conclusion:
These findings underscore the importance of sensitive and parent-led communication during a time of profound emotional disruption for families. Further training, guidance, and information resources are crucial to improve communication between HCPs and families navigating this difficult space.
