title: Exploring the Discussion of Risk of Sudden Cardiac Death.
abstract: Sudden arrhythmic death syndrome (SADS), where death is secondary to cardiac arrhythmia, is associated with several cardiac ion channelopathies, including long QT syndrome and Brugada syndrome, as well as cardiomyopathies such as hypertrophic cardiomyopathy and dilated cardiomyopathy. Many of these conditions often present in childhood or adolescence. This study investigates how diagnoses of cardiac diseases associated with SADS are communicated within families. A questionnaire was distributed through cardiac disease-focused support groups and organizations. Data from 114 parents who have a child with a SADS condition were used for analysis. Based on the responses, parents explained the risk of SADS in a straightforward manner and related the risk to the importance of compliance with the prescribed treatment. Participants also found it difficult to determine and enforce lifestyle modifications, manage individuals' emotional reactions, convey the seriousness of the information without scaring their children, and discuss the risk of SADS during these conversations. Concerns regarding disease progression, length and quality of life, and treatment failures were also expressed. Healthcare providers, the Internet, other affected people, visual aids, and personal experience were all reported to be helpful for facilitating these discussions. Services and resources requested by participants included children's support groups, a counselor or psychologist, and child-oriented materials. Increased understanding of how families discuss children's diagnosis of SADS conditions will equip healthcare providers with the information to address parental concerns and help facilitate meaningful and informative discussions within families.
authors.affiliation: Wake Forest Baptist Medical Center, OCCC 4TH Floor, Medical Center Blvd, Winston-Salem, NC, USA. kristinannewiley@gmail.com.
authors.forename: Kristin Anne
authors.initials: KA
authors.lastname: Wiley
authors.affiliation: Pediatric Cardiology, Sibley Heart Center Cardiology, 2835 Brandywine Road, Suite 300, Atlanta, GA, 30341, USA.
authors.forename: Erin M
authors.initials: EM
authors.lastname: Demo
authors.affiliation: Genetic Counseling Program, University of South Carolina School of Medicine, Two Medical Park, Suite 103, Columbia, SC, 29203, USA.
authors.forename: Peggy
authors.initials: P
authors.lastname: Walker
authors.affiliation: University Specialty Clinics, University of South Carolina, 9 Medical Park, Ste. 110, Columbia, SC, 29203, USA.
authors.forename: C Osborne
authors.initials: CO
authors.lastname: Shuler
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002311:Cardiomyopathy, Dilated / Q000150:complications*; D002312:Cardiomyopathy, Hypertrophic / Q000150:complications*; D002648:Child; D002675:Child, Preschool; D003142:Communication; D016757:Death, Sudden, Cardiac / Q000453:epidemiology* / Q000209:etiology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008133:Long QT Syndrome / Q000150:complications*; D008297:Male; D008875:Middle Aged; D010290:Parents; D011788:Quality of Life; D012307:Risk Factors; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
keywords: Communication; Family; Genetics; LQTS; Risk; SADS