User-testing of a decision-support tool for parents facing threatened periviable delivery: The Periviable GOALS decision aid

Abstract

Background To report user-centered design methods and stakeholder acceptability ratings of the Periviable GOALS (Getting Optimal Alignment around Life Support) decision aid (DA).

Methods ‘Experienced’ and ‘expectant’ mothers engaged in content and design refining sessions. Five videos (10 families) were embedded in the DA to highlight life after delivery. User-testing sessions were conducted with mothers and providers to assess acceptability. End-user testing was conducted with hospitalized women facing potential periviable delivery to assess acceptability and feasibility in the clinical setting.

Results 108 participants engaged in sessions from July 2017-January 2020. Twenty-seven refining sessions resulted in a DA providing survival estimates, neonatal outcomes descriptions, and values clarification exercises. Five white and five black women participated in the videos; six having surviving children (ages 16 months-4 years). Twelve mothers, 16 providers, and six hospitalized women evaluated acceptability. 95.1 % found the content “just right,” 94.9 % rated the videos “good” or “excellent,” and 97.2 % believed GOALS would support families in periviable decision-making.

Conclusion Our results highlight the importance of developing a DA that is acceptable for patient use with direct involvement of stakeholders.