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

• DOI: 10.1101/2024.02.01.24302009
• Publication Date: 2024-02-04T08:30:10Z
• Authors: Lisa M. Dellefave...; Franceska Hinkamp; Lisa Shah; Courtney L. Scherr; Jennifer Young; Gregory Webster; Debra Duquette
• Keywords: Sudden Death; Family member

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