Family Leaders Navigate Burden to Communicate Risk during Cascade Screening after Sudden Cardiac Death in the Young

Area of Science:

• Cardiovascular Genetics
• Clinical Communication
• Public Health

Background:

• Sudden cardiac death in the young (SCDY) places relatives at risk for hereditary cardiomyopathies and arrhythmias.
• Effective communication of cardiac risk is crucial for at-risk family members.
• Low cascade screening uptake necessitates identifying communication barriers.

Purpose of the Study:

• To explore barriers and facilitators to cascade screening communication in families affected by SCDY.
• To identify challenges and potential interventions in communicating cardiac risk.
• To understand family perspectives on risk communication after a SCDY event.

Main Methods:

• Semi-structured interviews were conducted with 14 family members of SCDY decedents.
• Participants were recruited from a Sudden Arrhythmia Death Syndrome advocacy group.
• Conventional content analysis was used to analyze interview data until saturation.

Main Results:

• Interpreting and conveying clinical variability of arrhythmias/cardiomyopathies posed challenges.
• Family members sometimes disregarded risk information, and grief interfered with communication.
• Communication aids alone were insufficient; families advocated for a "genetic family navigator".

Conclusions:

• This study is the first to evaluate cardiac risk communication post-SCDY among adult family members.
• Findings offer practical strategies to enhance clinical care and communication for SCDY families.
• The need for genetic family navigators to facilitate cascade screening is emphasized.