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Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review

  • Review Paper
  • Published:
Journal of Genetic Counseling

Abstract

Screening for hereditary cardiomyopathies and arrhythmias (HCA) may enable early detection, treatment, targeted surveillance, and result in effective prevention of debilitating complications and sudden cardiac death. Screening at-risk family members for HCA is conducted through cascade screening. Only half of at-risk family members are screened for HCA. To participate in screening, at-risk family members must be aware of their risk. This often relies on communication from diagnosed individuals to their relatives. However, family communication is not well understood and is ripe for developing interventions to improve screening rates. Until very recently, family communication of genetic risk has been mostly studied in non-cardiac disease. Using this non-cardiac literature, we developed the family communication of genetic risk (FCGR) conceptual framework. The FCGR has four main elements of the communication process: influential factors, communication strategies, communication occurrence, and reaction to communication. Using the FCGR, we conducted an integrated review of the available literature on genetic risk communication in HCA families. Descriptive analysis of 12 articles resulted in the development of categories describing details of the FCGR elements in the context of HCA. This review synthesizes what is known about influential factors, communication strategies, communication occurrence, and outcomes of communication in the context of HCA.

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Acknowledgements

The authors acknowledge Janet K. Williams for thoughtful review of this work.

Funding

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under award numbers F31NR014758 and T32NR009759 and the Midwest Nurses Research Society Dissertation Grant.

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Authors and Affiliations

  1. University of Pittsburgh School of Nursing, 363A Victoria Building, 3500 Victoria Street, Pittsburgh, PA, 15261, USA

    Lisa L. Shah

  2. University of Iowa College of Nursing, Iowa City, IA, USA

    Sandra Daack-Hirsch

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  1. Lisa L. Shah
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  2. Sandra Daack-Hirsch
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Correspondence to Lisa L. Shah.

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Lisa L. Shah and Sandra Daack-Hirsch declare that they have no conflict of interest.

Human Studies and Informed Consent

No human studies were carried out by the authors for this article. No animal studies were carried out by the authors for this article.

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Shah, L.L., Daack-Hirsch, S. Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review. J Genet Counsel 27, 1022–1039 (2018). https://doi.org/10.1007/s10897-018-0225-9

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  • DOI: https://doi.org/10.1007/s10897-018-0225-9

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