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Family Relationships Associated with Communication and Testing for Inherited Cardiac Conditions
Journal article   Peer reviewed

Family Relationships Associated with Communication and Testing for Inherited Cardiac Conditions

Lisa L. Shah, Sandra Daack-Hirsch, Anne L. Ersig, Anthony Paik, Ferhaan Ahmad and Janet Williams
Western journal of nursing research, Vol.41(11), pp.1576-1601
12/12/2018
DOI: 10.1177/0193945918817039
PMCID: PMC6561845
PMID: 30539690
url
https://www.ncbi.nlm.nih.gov/pmc/articles/6561845View
Open Access

Abstract

The purpose of this study was to identify characteristics of family relationships associated with communication of genetic risk and testing behaviors among at-risk relatives in families with an inherited cardiac condition. Data were collected from 53 patients and parents of children with an inherited cardiac condition through interviews, pedigrees, and surveys. Associations were examined among family relationship characteristics and whether at-risk relatives were informed about their risk and tested for disease. Of 1,178 at-risk relatives, 52.5% were informed about their risk and 52.1% of those informed were tested. Emotional closeness, relationship quality, and communication frequency had significant bivariate associations with genetic risk communication. Communication frequency was associated with genetic risk communication and testing in multivariate models. This study provides new insight into the extent of genetic risk communication and testing in families with inherited cardiac conditions. Family relationships, especially communication frequency, are critical factors in family communication of genetic risk.
Cardiomyopathy cascade screening Disclosure [Mesh] genetic risk communication Hypertrophic [Mesh] Long QT Syndrome [Mesh]

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