Department of Obstetrics & Gynecology, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA.
Department of Obstetrics & Gynecology, Indiana University School of Medicine, 410 W. 10th Street, Indianapolis, IN, 46202, USA.
Patient Educ Couns. 2021 Jun;104(6):1286-1294. doi: 10.1016/j.pec.2020.10.004. Epub 2020 Oct 10.
To report user-centered design methods and stakeholder acceptability ratings of the Periviable GOALS (Getting Optimal Alignment around Life Support) decision aid (DA).
'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.
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.
Our results highlight the importance of developing a DA that is acceptable for patient use with direct involvement of stakeholders.
The GOALS DA may prepare families to engage in shared decision-making to facilitate more patient-centered models of periviable care.
报告以患者为中心的设计方法和利益相关者对围产 GOALS（围绕生命支持获得最佳调整）决策辅助工具（DA）的接受程度。
经验丰富和预期的母亲参与了内容和设计精炼会议。五个视频（10 个家庭）被嵌入到 DA 中，以突出分娩后的生活。对母亲和提供者进行用户测试，以评估可接受性。对面临潜在围产分娩的住院妇女进行最终用户测试，以评估在临床环境中的可接受性和可行性。
2017 年 7 月至 2020 年 1 月，108 名参与者参加了会议。27 次精炼会议得出了一个提供生存估计、新生儿结局描述和价值澄清练习的 DA。五名白人妇女和五名黑人妇女参加了视频；其中六名有存活的孩子（年龄 16 个月至 4 岁）。12 名母亲、16 名提供者和 6 名住院妇女评估了可接受性。95.1%的人认为内容“恰到好处”，94.9%的人认为视频“好”或“优秀”，97.2%的人认为 GOALS 将支持家庭进行围产决策。
我们的结果强调了开发一种 DA 的重要性，这种 DA 必须在患者使用方面是可接受的，并且需要直接让利益相关者参与。
GOALS DA 可以使家庭做好准备，参与共同决策，从而促进更以患者为中心的围产护理模式。
