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"The communication and support from the health professional is incredibly important": A qualitative study exploring
Celine Lewis1,2, Megan Riddington3, Melissa Hill1,2
1North East Thames Regional Genetics Service, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Background:
Consent rates for postmortem (PM) examination in the perinatal and paediatric setting have dropped significantly in the United Kingdom, the United States, and the Western Europe. We explored the factors that act as facilitators or barriers to consent and identified processes and practices that support parental decision-making.
Methods:
A qualitative study conducted with bereaved parents, parent advocates, and health care professionals in the United Kingdom. Analysis was conducted on 439 free-tect comments within a cross-sectional survey, interviews with a subset of 20 survey respondents and 25 health professionals, and a focus group with five parent advocates.
Results:
Three broad parental decision-making groups were identified: 1, "Not open to postmortem examination"; 2, "Consent regardless of concerns"; and 3, "Initially undecided." Decisional drivers that were particularly important for this "undecided" group were "the initial approach," "adjustment and deliberation," "detailed discussion about the procedure," and "formal consent." The way in which these were managed by health care staff significantly impacted whether those parents' consented to PM, particularly for those who are ambivalent about the procedure.
Conclusions:
We propose a set of recommendations to improve the way PM counselling and consent is managed. Adopting such measures is likely to lead to improved family experience and more consistent and high-quality discussion regarding PM.
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