Sudden cardiac death in the young: A qualitative study of experiences of family members with cardiogenetic evaluation

Abstract

Introduction: Sudden cardiac death (SCD) is a devastating event for the family and the community, especially when it occurs in a young person (<45 years). Genetic heart diseases, including cardiomyopathies and primary arrhythmia syndromes, are an important cause of SCD in the young. Although cardiogenetic evaluation, i.e., clinical evaluation, genetic testing and psychological support, is increasingly performed after SCD, it is unknown how suddenly bereaved family members experience the process. We aimed to explore the experiences of family members with cardiogenetic evaluation after SCD, and their perception of the process and care received. Methods: In-depth interviews were conducted with eighteen family members of young people (<45 years old) who died suddenly, including parents, siblings and partners. The interviews were thematically analysed by two researchers independently. Results: In total, 18 interviews were conducted from 17 families. The following themes were identified: (1) Experiences with postmortem genetic testing including managing expectations and psychological impact, (2) appreciation of care such as access to genetic counselling and relief following cardiac evaluation of relatives, and (3) need for support including unmet psychological support needs and better coordination of care immediately after the death. Conclusion: Although participants appreciated the opportunity for cardiogenetic evaluation, they also experienced a lack of coordination of cardiogenetic and psychological care. Our findings stress the importance of access to expert multidisciplinary teams, including psychological care, to adequately support these families after a SCD in a young family member.

Competing Interest Statement

JI receives research grant support from Bristol Myers Squibb unrelated to this study.

Funding Statement

This study was funded by: LY is a recipient of a co-funded National Heart Foundation of Australia/National Health Medical Research Council (NHMRC) PhD Scholarship (#102568/ #191351). CS is the recipient of an NHMRC Practitioner Fellowship (#1154992) and a New South Wales (NSW) Health Cardiovascular Health Clinician Scientist Grant. JI is the recipient of a NHMRC Career Development Fellowship (#1162929). This study was funded in part by a (NSW) Health Cardiovascular Research Capacity Program early-mid career research grant (JI).

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Sydney Local Health District (Royal Prince Alfred Hospital Zone) Ethics Committee gave ethical approval for this work (X19-0019 & 2019/ETH00094). Participants provided written, informed consent.

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Data Availability

All data produced in the present study are available upon reasonable request to the authors

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