妊娠期に胎児の生命を脅かす病態に直面した親の「子どもとの過ごしかた」：支援者向け意思決定支援ガイド試作版の開発

Development of a Decision Guide Prototype for Guiding Healthcare Professionals in Supporting Parents Faced With Life-Limiting or Life-Threatening Fetal Conditions on "How to Spend Time With the Baby"

要旨

　目的：妊娠期に胎児の生命を脅かす病態に直面した親を対象とした「支援者向け：『子どもとの過ごしかた』意思決定支援ガイド試作版（以下，試作版）」を開発・評価する．

　方法：収斂デザインによる混合研究法．支援者と母親（妊娠期に胎児異常を診断された，または/および，周産期喪失の体験者）を対象に，自記式質問票を用いて受容性（内容の理解しやすさ，長さや情報量，適切性）とユーザビリティを評価し，試作版の強みと課題を特定した．

　結果：参加者23名（支援者18名，母親5名）から回答を得た．量的・質的結果の双方が試作版の適切性を支持していた．一方，ページ数や情報量の多さに加え，質的結果から支援者は【視覚的な魅力の向上】や【効率よく理解する工夫】を求めており，【標準化された手順で対応することの難しさ】への懸念が示された．

　結論：試作版の強みとして適切性が確認され，臨床実装における課題が明確になった．

　Aim: To develop and evaluate a decision guide prototype for guiding healthcare professionals in supporting parents faced with life-limiting or life-threatening fetal conditions on how to spend time with their baby.

　Methods: A convergent mixed-methods design was used. The participants included supporters (such as doctors, nurses, midwives, and clinical psychologists), and mothers, particularly those who had faced fetal anomalies or had experienced perinatal loss. Self-administered questionnaires were used to evaluate the acceptability (e.g., comprehensibility of the components of the prototype, its length and amount of information, overall suitability for the decision-making) and usability of the decision guide prototype and identify its strengths and limitations.

　Results: A total of 23 participants (18 healthcare professionals, 5 mothers) were included in this study. Both quantitative and qualitative results supported the overall suitability for the decision-making. On the other hand, it was found that supporters wanted an enhanced decision guide prototype not only in terms of the number of pages and the amount of information, but also in terms of "visual improvements" and "ways to efficiently convey information" from qualitative results. Furthermore, supporters had concerns regarding the "difficulty in standardizing support".

　Conclusion: The overall suitability of the prototype was supported as a strength, and challenges for clinical implementation were clarified.