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Journal of Genetic Counseling

, Volume 27, Issue 5, pp 1022–1039 | Cite as

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

  • Lisa L. Shah
  • Sandra Daack-Hirsch
Review Paper

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.

Keywords

Hypertrophic cardiomyopathy Long QT syndrome Cascade screening Family communication Genetic risk Disclosure Inherited arrhythmia Inherited cardiomyopathies Sudden cardiac death 

Notes

Acknowledgements

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

Funding Information

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.

Compliance with Ethical Standards

Conflict of Interest

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.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  1. 1.University of Pittsburgh School of NursingPittsburghUSA
  2. 2.University of Iowa College of NursingIowa CityUSA

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