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Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach

  • Brownsyne Tucker EdmondsEmail author
  • Shelley M. Hoffman
  • Dustin Lynch
  • Erin Jeffries
  • Kelli Jenkins
  • Sarah Wiehe
  • Nerissa Bauer
  • Miriam Kuppermann
Original Research Article

Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

Notes

Author contributions

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.

Funding

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).

Ethical approval

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

Informed consent was obtained from all individual participants included in the study.

Supplementary material

40271_2018_348_MOESM1_ESM.pdf (662 kb)
Online Resource 1 is the tablet application prototype that was presented in paper format during the test phase and explained by a session facilitator. (PDF 661 kb)
40271_2018_348_MOESM2_ESM.pdf (2.2 mb)
Online Resource 2 is a storyboard of a short documentary-style video that describes the daily lives of children with various outcomes resulting from periviable birth. It was presented in paper format by a session facilitator who explained that the documentary’s purpose was to help illustrate mild, moderate, and severe disabilities for families. (PDF 2268 kb)
40271_2018_348_MOESM3_ESM.pdf (1.6 mb)
Online Resource 3 is the storyboard used by a session facilitator to introduce the virtual reality goggles prototype, in which a virtual reality physician introduced three different scenarios: resuscitation, the NICU experience, and a day in the life one to two years after experiencing a periviable birth. (PDF 2268 kb)

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Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  • Brownsyne Tucker Edmonds
    • 1
    Email author
  • Shelley M. Hoffman
    • 1
  • Dustin Lynch
    • 2
  • Erin Jeffries
    • 1
  • Kelli Jenkins
    • 2
  • Sarah Wiehe
    • 2
  • Nerissa Bauer
    • 2
  • Miriam Kuppermann
    • 3
  1. 1.Department of Obstetrics and GynecologyIndiana University School of MedicineIndianapolisUSA
  2. 2.Patient Engagement Core, Community Health PartnershipsIndiana Clinical and Translational Sciences Institute, Indiana University School of MedicineIndianapolisUSA
  3. 3.Department of Obstetrics, Gynecology and Reproductive SciencesUniversity of CaliforniaSan FranciscoUSA

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