(1369) Meet Us Where We’re At: The Value of Participatory Research in ARF Survivorship

Introduction: Participatory research (PR) is an approach to inquiry that prioritizes direct engagement of stakeholders in research design, methods, and frameworks. While existing literature suggests that peer support is valuable for ICU survivors, it is unknown whether these benefits extend to patient and family stakeholders engaged in PR. This study explored stakeholder experiences participating in a Delphi study on acute respiratory failure (ARF) recovery.

Methods: Stakeholders with lived or professional expertise were recruited for a Delphi study to develop a novel outcome measure for studies of ARF. Lived experience experts included ARF survivors and ARF patient family members. Professional experience experts included ARF clinicians and researchers. Embedded within the serial Delphi surveys were open-ended questions to allow participants to reflect on the research experience. Responses were analyzed using qualitative content analysis.

Results: 57 experts participated in the Delphi study. Responses from 43 experts (75%) contributed to the analysis (54% lived [n=23], 37% professional [n=16], 9% lived/professional [n=4]). Themes included shared experience and validation, altruism, and trauma-informed data collection. For most survivors, reading survey responses from other survivors provided reassurance and validation in their common experiences. The value of sharing perspectives was reciprocal, with professional experts gaining insight from lived experts. Both ARF survivors and family members expressed desire to help future patients and families and gratitude for the opportunity to contribute to research. Participants emphasized the importance of establishing trust and building relationships when conducting PR on ARF survivorship, suggesting data collection must be mindful of inadvertently forcing survivors to re-experience past trauma.

Conclusions: Members of an ARF Delphi study described benefits of participation similar to those attributed to peer support interventions for ICU survivors. Benefits extended to family members and professional experts and may be facilitated even in low touch interactions (reflection on survey responses). Furthermore, it is critical for investigators to employ a trauma-informed approach to data collection on ARF survivorship.