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. PRACTICE IMPLICATIONS: The GOALS DA may prepare families to engage in shared decision-making to facilitate more patient-centered models of periviable care.