Jurnal

Living With Hypertrophic Cardiomyopathy

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Purpose: The purpose of this study is to provide an insider’s account of what it is like to live with hypertrophic cardiomyopathy (HCM), a genetic cardiovascular illness that carries the risk for sudden cardiac death. This study aims to reveal how HCM impacts the family and guides the decision whether or not to pursue genetic testing, how the physical limitations associated with HCM alter being-in-the-world, and how HCM alters social relationships. Design: Fifteen adults with HCM were recruited for a longitudinal, phenomenological, qualitative study through purposive sampling and word of mouth. A total of 45 interviews were conducted by the researcher at a time and place designated by the participant between August 2011 and January 2012. The first interview with each participant was conducted in person. While efforts were made to conduct all interviews in person, a total of three interviews were conducted by telephone as requested by three participants due to scheduling conflicts. Methods: Through methods of interpretive phenomenology, three audiorecorded, semistructured interviews occurred over the course of 3 months. Detailed narratives were solicited and transcribed verbatim. Methodological and analytical documentation was supported with the identification of key phrases, similar experiences, themes, and documentation of the rationale for decisions throughout the research process. Conclusions: Participation in genetic testing carries a multitude of personal, familial, financial, and emotional implications. The results of a genetic test elicited an emotional response regardless of whether the results were negative, positive, or inconclusive. Living with a potentially life-threatening illness altered identity, disrupted social relationships, and generated chronic fear and uncertainty. A new normal was re-ordered or transformed by the demands and limitations posed by HCM, and by the person’s concerns, priorities, and the meaning of the illness. Clinical Relevance: Results from this study underscore the need for healthcare professionals to learn more about HCM and to conduct screenings that will facilitate a prompt and accurate diagnosis. In doing so, the risk for sudden cardiac death may be averted. There is a need to educate and to advocate for genetic testing of HCM. It is necessary for healthcare providers to move beyond their biomedical understanding of genetic illness and to address the lived experience of the illness, how the illness impacts the family, and the multifaceted concerns of people who have a genetic illness as well as the concerns of their family members.

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Detail Information

Series Title

Journal of Nursing Scholarship, Volume 45, Number 4 2013

Call Number

(05) 610.5 WIL j

Publisher

Malden : Wiley-Blackwell., 2013

Collation

Hlm. 371-379

Language

English

ISBN/ISSN

1527-6546

Classification

(05) 610.5 WIL j

Content Type

-

Media Type

-

Carrier Type

-

Edition

Volume 45, Number 4

Subject(s)

qualitative
Hypertrophic cardiomyopathy
interpretive phenomenology
genetic

Specific Detail Info

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Statement of Responsibility

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