Perceptions of surrogate decision-makers of cardiac arrest patients on engaging in research during high emotional distress

Abstract

INTRODUCTION: The perception that individuals in crisis experience undue psychological burden by participation in research is a barrier to including surrogate decision-makers to critically ill patients in research studies. Importantly, perceptions from those who have engaged as surrogates are necessary to develop interventions to better support the process of decision making and recovery. PURPOSE: This study will explore surrogates’ perceptions on participating in research during high emotional distress. METHODS: This is a sub-study of a larger qualitative study of surrogates for comatose survivors of out of hospital cardiac arrest (OHCA) entitled “Experience of Surrogate Decision-Makers in Post Cardiac Arrest Decision-Making”. Surrogates were approached in the intensive care unit at a single US academic hospital to consent for follow up contact 30-days after patient discharge or death. On follow up, participants were consented to participate in a semi-structured interview. Based upon the Grounded Theory, interviews were conducted, recorded, transcribed, coded and analyzed thematically. RESULTS: Between 9/2017 and 7/2019, 34 surrogates agreed to be contacted and 12 (35%) consented to participate. Median time to interview was 48 days. Of the 12 participants, 8 were grieving the death of their loved one (bereaved surrogate) and 4 surrogates had their loved one survive to hospital discharge (defined as “co-survivor”). Most participants were women (n = 5, 75%) and just under half identified as the spouse/partner of the patient (n = 5, 42%). Three themes emerged on perceptions of participation in research (1) the importance of contributing their perspectives to improve future surrogates’ experiences, (2) even in the context of emotional challenges, 3.Surrogates appreciate willingness to delay follow-up depending on their emotional needs, endorsing a personal approach to participation. CONCLUSION: Surrogate decision-makers of OHCA patients emphasized the importance of their perspective in research, despite the emotional challenges they might be facing. Further research is needed that incorporate surrogates’ perspectives to develop interventions to support surrogate decision making and to improve outcomes for all who experience out of hospital cardiac arrest. Source: Perman SM, Siry-Bove B, Presciutti A, Havranek E, Matlock D. BMC Medical Ethics (2026). https://doi.org/10.1186/s12910-026-01584-3. Reproduced under CC BY-NC-ND 4.0: https://creativecommons.org/licenses/by-nc-nd/4.0/. Abstract wording unchanged; section-heading formatting adapted.