4.5 Article

Creating a postmortem examination decision aid: Suggestions from bereaved parents of a stillborn

Journal

PATIENT EDUCATION AND COUNSELING
Volume 112, Issue -, Pages -

Publisher

ELSEVIER IRELAND LTD
DOI: 10.1016/j.pec.2023.107746

Keywords

Postmortem examinations of stillbirth; Decision aid; Fetal death

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This study conducted interviews with parents who received stillbirth care to understand their needs and preferences in postmortem decision-making. The study suggests the development of a decision aid to provide balanced information and support couple's decision-making.
Objectives: To understand the postmortem decision-making needs and preferences of parents of a stillborn.Methods: A qualitative content analysis was conducted. Patients who received stillbirth care at the University of Utah in the last 5 years, were 18 years of age or older, and English speakers, were invited to participate via an email and follow-up phone call. Participants were interviewed about their experiences, values, beliefs, decisionmaking experience regarding the postmortem examinations of their stillborn, and suggestions for how to assist their decision-making needs. Results: Nineteen participants who consented to one or more postmortem examination of their stillborn were interviewed. They expressed needing information, altruism, and/or a belief in science as reasons for consenting. The most common reason for declining was already knowing the stillbirth cause. Recommendations for a decision aid included a description of all stillbirth evaluation options, risks and benefits, and a timeline.Conclusion: Participants had a variety of reasons for consenting to or declining postmortem examinations of their stillborn. Recommendations for a decision aid include a full description of each examination, the risks and benefits, and a timeline.Practical implications: An example decision aid was created from recommendations, which presents balanced information to help support couple's decision-making.

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