Bringing Statistics to Life: Developing “Lived-Experience” Family Videos for a Periviable Decision-Support Tool [06K

Abstract

INTRODUCTION: To develop and incorporate ‘lived-experience’ videos of families describing their lives following periviable delivery into the Periviable GOALS (Getting Optimal Alignment around Life Support) decision-support tool. METHODS: Through patient-engaged research methodology, patient-partners advocated ‘bringing statistics to life’ by including videos into the tool (IRB-approved). Five videos were created; each contained two families’ stories reflecting: death following comfort care, non-survival following resuscitation, or survival with mild, moderate, or severe neurodevelopmental impairment (NDI). Diverse families represented the spectrum of NDI, using different scripts for bereavement versus survival. Professional videographers filmed and edited the segments (3-5 minutes), which were embedded into the GOALS tool. Focus groups were conducted with pregnant women (20-26 weeks) and women who have delivered periviably to assess the videos’ acceptability. RESULTS: Ten families participated in the ‘lived-experience’ videos. Half were African American and half were white; children were age 16 months to 4 years. Bereaved parents were asked about end-of-life experiences and support after loss, while survivor segments described typical days, on-going medical care, and family adjustment. The videos were rated “excellent” (41.7%) or “good” (25%) by focus group participants (n=12). Most (91.7%) thought the tool provided sufficient information and would be useful in helping families make treatment decisions. CONCLUSION: Videos provide context for families to make meaning of complex prognostic information on long-term outcomes. They must be developed with caution due to their potential to introduce anchoring, conformity, or optimistic biases. Stakeholder engagement and diverse representation across the spectrum of outcomes and decisions may help to mitigate potential biases.