Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach
Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach.
We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each 2-h session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session.
Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos.
Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.
BTE and MK contributed to study concept and design and writing of the manuscript. SMH and EJ participated in subject recruitment, conducting sessions, and writing the manuscript. DL and KJ developed the session content and participated in conducting sessions, analyzing data, and writing the manuscript. SW and NB managed the session content and conduct of sessions, and participated in writing the manuscript.
Compliance with Ethical Standards
Conflict of interest
Authors, BTE, SMH, DL, EJ, KJ, SW, NB, and MK, declare that they have no conflict of interest.
This project was funded, in part, with support from the Indiana Clinical and Translational Sciences Institute and, in part, by Award Number UL1TR002529 from the National Institutes of Health, National Center for Advancing Translational Sciences, Clinical and Translational Sciences Award. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This research was supported by the University of California, San Francisco, California Preterm Birth Initiative, funded by Marc and Lynne Benioff.
Research involving human participants
This study was approved to include human subjects by the Indiana University Institutional Review Board (IRB protocol #1606279321) and the University of California, San Francisco Institutional Review Board (IRB protocol #16-20705).
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.
Informed consent was obtained from all individual participants included in the study.
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