Abstract
The genetic nature of an inherited cardiac condition (ICC) places first- and second-degree relatives at risk of cardiac complications and sudden death, even in the absence of symptoms. Communication of cardiac genetic risk information allows at-risk relatives to clarify, manage, and potentially prevent ICC-associated risks through cardiac screening. Literature regarding family communication of genetic risk information are predominantly based on Western populations, with limited insight into the Asian experience. This qualitative exploratory study provides a male perspective into the communication of ICC risks within families in Singapore. Eight male participants with clinically diagnosed cardiomyopathy, who had all received genetic counseling, were recruited. A phenomenological perspective was used to identify emergent themes from semi-structured interviews. In this study, most participants recalled their healthcare professional’s emphasis on family communication. Notably, participants revealed that at-risk relatives were not accessing screening, and many described family members as currently asymptomatic and “healthy.” These findings coincide with documented Asian beliefs regarding perceptions of health, which have important implications for the provision of genetic counseling support within Asian communities, especially in facilitating family communication such that at-risk relatives are informed about their ICC risks and available management options.
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Notes
Quotes are reflected verbatim. Two-dot ellipses (..) represent short pauses; three-dot ellipses (...) represent longer pauses; four-dot ellipses flanked by spaces (....) represent speech that has been truncated but without altering the meaning. Square brackets [] are included to add clarification, while round brackets () indicate non-verbal communication such as laughter or gestures.
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Funding
This study was completed in partial fulfillment of the requirements for the Master of Genetic Counselling, University of Melbourne, Victoria, Australia, and was supported by the Victorian Government’s Operational Infrastructure Support Program.
Sylvia Kam was supported by POLARIS @ SingHealth to undertake the Master of Genetic Counselling. POLARIS (Personalised OMIC Lattice for Advanced Research and Improving Stratification) is a collaboration between the Genome Institute of Singapore (GIS) at the Agency for Science, Technology and Research (A*STAR) and Singapore Health Services (SingHealth).
This work was also in part supported by a grant from the National Medical Research Council and a National University Health System (NUHS) Seed Fund that went towards setting up the ICC clinic at the National University Heart Centre Singapore (NUHCS).
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
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Kam, S., Bylstra, Y., Forrest, L. et al. Experience of Asian males communicating cardiac genetic risk within the family. J Community Genet 9, 293–303 (2018). https://doi.org/10.1007/s12687-017-0352-2
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DOI: https://doi.org/10.1007/s12687-017-0352-2