Family Members’ Experiences Communicating With Coroners in Suspected Hereditary Sudden Cardiac Death Cases: A Mixed Methods Study in Canada

BACKGROUND: Sudden cardiac death (SCD) can be caused by heritable cardiac conditions, as such, up to 50% of family members may be at risk. Coroners are responsible for communicating this risk, in addition to investigating the cause of death. The purpose of this study was to 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. METHODS: We conducted an explanatory sequential mixed methods study. Eligible family members of SCD victims aged 2 to 70 years, 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 to complete a web survey or telephone interview. We used descriptive statistics to analyze the survey data and thematic analysis to analyze the interview data. Quantitative and qualitative data integration occurred at multiple levels. RESULTS: We sent survey invitations to 126 family members of 115 SCD victims; 50 completed the web-based survey between September 2022 and February 2024. We interviewed a subset of 17 participants. Most received initial communication by phone (n=30, 60%) or in-person (n=13, 26%). Although many (n=39; 78%) received a timeline for death investigation results, 16 (32%) did not receive results within the expected timeframe. In interviews, family members described effective communication as clear, with the coroners' demeanor being important, in particular, perceived as kind, accessible, and approachable. When communication needs went unmet, families relied on external support networks (outside of the coroner system) to fill information gaps. Suggestions for improved communication included repeating information and using multiple communication modes to enhance understanding. CONCLUSIONS: Findings emphasize the need for coroners to use empathetic approaches and provide timely, clear information. Addressing communication gaps may better meet the needs of grieving SCD families.