Brownsyne Tucker Edmonds1, Shelley M Hoffman2, Tatiana Laitano2, Kimberly Coleman-Phox3, Esperanza Castillo3, Miriam Kuppermann3. 1. Department of Obstetrics & Gynecology, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA. Electronic address: btuckere@iupui.edu. 2. Department of Obstetrics & Gynecology, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA. 3. Department of Obstetrics, Gynecology & Reproductive Sciences, University of California, 550 16th St, Box 0132, San Francisco, CA, 94143, USA.
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.
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.
Authors: Margaret H Barlet; Peter A Ubel; Kevin P Weinfurt; Hannah C Glass; Kathryn I Pollak; Debra H Brandon; Monica E Lemmon Journal: J Pediatr Date: 2022-02-26 Impact factor: 6.314