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“Awakening to” a new meaning of being at-risk for arrhythmogenic right ventricular cardiomyopathy: a grounded theory study

Journal of Community Genetics volume 6, pages 167–175 (2015)Cite this article

Abstract

Efforts of social scientists to understand how individuals living in a family at risk for a genetically linked condition make health care decisions, having brought to the forefront the contextual nature of risk perception. Using a grounded theory approach, this study examines the experiences of 29 individuals living in families at risk for arrhythmogenic right ventricular cardiomyopathy (ARVC). Attention is paid to how individuals (re)construct the meaning of being at risk in relation to the developing science of gene discovery. Findings highlight that individuals living in a family at risk for ARVC juxtapose existing scientific knowledge against experiential knowledge as they “awaken to” the fact that they or a family member are at risk. This process is pragmatic and fluid and contingent upon whether and how symptoms are aligned with the constructed image of the at-risk relative.

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Acknowledgments

Authors would like to thank all of the participants, Dr. Kathy Hodgkinson, Dr. Shirley Solberg, Dr. Diana Gustafson, Genome Atlantic and the Provincial Medical Genetics Clinic, NL.

Conflict of interest

April Manuel and Fern Brunger declare that they have no conflict of interest.

Compliance with ethical guidelines

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with Helsinki Declaration of 1975, as revised in 2000(5). Informed consent was obtained from all patients for being included in the study.

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Authors and Affiliations

  1. Memorial University, St. John’s, Newfoundland and Labrador, Canada

    April Manuel

  2. Memorial University of Newfoundland School of Nursing, 300 Prince Phillip Drive, St. John’s, Newfoundland and Labrador, A1B 3V6, Canada

    April Manuel

  3. Division of Community Health and Humanities, Faculty of Medicine, Memorial University, St. John’s, Newfoundland and Labrador, Canada

    Fern Brunger

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  1. April Manuel
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  2. Fern Brunger
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Correspondence to April Manuel.

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Manuel, A., Brunger, F. “Awakening to” a new meaning of being at-risk for arrhythmogenic right ventricular cardiomyopathy: a grounded theory study. J Community Genet 6, 167–175 (2015). https://doi.org/10.1007/s12687-015-0212-x

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  • DOI: https://doi.org/10.1007/s12687-015-0212-x

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