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

Introduction: Relatives of a victim of sudden cardiac death in the young (SCDY) may be at-risk for hereditary cardiomyopathies and arrhythmias; effective communication of cardiac risk is imperative. Family leaders are often responsible for communicating risk to surviving family during a difficult time. Cascade screening uptake is low among at-risk family members; identifying barriers of risk communication can help improve strategies. Purpose: Explore barriers and facilitators to communication about cascade screening in families who have lost a family member to SCDY. Methods: Semi-structured interviews (n = 14) were conducted with family members of a SCDY decedent. Participants were recruited from the Sudden Arrhythmia Death Syndrome advocacy group. Interviews explored the facilitators, challenges and proposed interventions at different stages of risk communication. Interviews were conducted until data saturation was reached. Interviews were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Five categories were identified from the interviews: 1. Participants understood fundamental risks but the clinical variability in arrhythmia and cardiomyopathy was difficult to interpret and convey; 2. Family leaders felt some family disregarded risk information; 3. Grief interfered with family leader’s ability to understand and communicate risk information; 4. Communication aids were insufficient stand-alone interventions; 5. Families advocated for a “genetic family navigator”. Conclusion: This is the first study to evaluate cardiac risk communication between adult family members after a SCDY. Five categories provide practical strategies to improve clinical care and communication for families after SCDY and emphasize the need for genetic family navigators to facilitate cascade screening.