Family Members' Experiences Communicating with Coroners in Suspected Hereditary Sudden Cardiac Death Cases: A Mixed Methods Study

BackgroundAs SCD in the young can be caused by heritable cardiac conditions, up to 50% of family members may be at risk. Coroners are often responsible for communicating this risk, in addition to investigating the cause of death. PurposeTo explore how family members of SCD victims experience the type, timing, and suitability of communication with coroners about the cause of death and their own risk for SCD. MethodsWe conducted an explanatory sequential mixed methods study. Eligible family members of SCD victims who died in 2021 from a potentially heritable cardiac condition and were investigated by the Office of the Chief Coroner of Ontario (Canada) were invited tocomplete a web survey and/or telephone interview. We used descriptive statistics to analyze the survey data and thematic analysis to analyze the interview data. Integration occurred at multiple levels. ResultsWe sent survey invitations to 126 family members of 115 SCD victims; 50 family members completed the web-based survey between September 2022 and February 2024. We interviewed a subset of 17 family members. Most participants received initial communication by phone (n=30, 60%) or in-person (n=13, 26%). While many participants (n=39; 78%) received a timeline of when to expect death investigation results, 16 (32%) did not receive results within the expected timeframe. Family members characterized effective communication as clear, with coroners being perceived as kind, accessible, and approachable. When communication needs went unmet, families relied on external support networks to fill information gaps. Suggestions for improved communication included repeating information and using differing modes of communication to enhance understanding. ConclusionsThese findings emphasize the need for coroners to adopt empathetic approaches and to deliver information in a timely and clear manner. Addressing current gaps in communication may ensure the needs of grieving family members of SCD victims are met. What is Known- The unexpected and sometimes unclear cause of sudden cardiac death (SCD), particularly in young persons, leaves families grieving, often with unanswered questions. - In many jurisdictions, coroners investigate SCDs and have the most information regarding the circumstances and possible causes. - Communication with coroners influences families experiences with respect to learning about the cause of death and their own personal risk for a heritable cardiac condition. What this Study Adds- Family members of SCD victims seek clarity, accessibility, approachability, and kindness in their interactions with coroners. - When family members communication needs went unmet, many independently sought resources and support networks outside the coroner system. - Family members recommend improving coroner communication by providing clear timelines for death investigation results, repeating key information using several different modes of communication, and directing the family to counseling resources.