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

PATIENT EDUCATION AND COUNSELING

卷:104

Article

Edmonds, Brownsyne Tucker¹  Hoffman, Shelley M.¹  Laitano, Tatiana¹  Coleman-Phox, Kimberly²  Castillo, Esperanza²  Kuppermann, Miriam² 

[1] Indiana Univ Sch Med, Dept Obstet & Gynecol, 410 W 10th St, Indianapolis, IN 46202 USA

[2] Univ Calif San Francisco, Dept Obstet Gynecol & Reprod Sci, 550 16th St,Box 0132, San Francisco, CA 94143 USA

关键词: Periviable delivery;    User-centered design;    Stakeholders;    Decision making;    Patient centered;    Decision support tool;   

DOI  :  10.1016/j.pec.2020.10.004

来源: Elsevier

【 摘 要 】

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. (c) 2020 Elsevier B.V. All rights reserved.

【 授权许可】

Free