2025 Volume 45 Pages 490-502
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.
