Living With Half a Heart - Experiences of Young Adults With Single Ventricle Physiology: a Qualitative Study

Dorthe Overgaard, Catriona King, Rie F Christensen, Anne-Marie Voss Schrader, Lis Adamsen

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    Abstract

    J Cardiovasc Nurs 2013;28(2):187-96
    Living With Half a Heart-Experiences of Young Adults With Single Ventricle Physiology: A Qualitative Study.

    Overgaard D, King C, Christensen RF, Schrader AM, Adamsen L.
    SourceDorthe Overgaard, PhD, RN Researcher, The Heart Centre, Copenhagen University Hospital, Rigshospitalet, and University Hospitals Centre for Nursing and Care Research (UCSF), Rigshospitalet, Copenhagen, Denmark. Catriona King, RN Nurse at the Grown-up CHD, The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. Rie F. Christensen, MSc Research Assistant, The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. Anne-Marie Schrader, MPH, RN Lecturer, University College, Metropol, Copenhagen, Denmark. Lis Adamsen, PhD, RN Professor, Institute of Public Health, Copenhagen University, and University Hospitals Centre for Nursing and Care Research (UCSF), Rigshospitalet, Copenhagen, Denmark.

    Abstract
    BACKGROUND AND RESEARCH OBJECTIVE: Approximately 3% of children with congenital heart disease born in Denmark have single ventricle physiology (SVP). In previous decades, these children did not survive into adulthood. However, because of new surgical techniques and improved medical care, they now have a 90% survival rate. Several studies have described the somatic status of SVP patients using clinical parameters; however, only a few studies have researched the life perspectives and coping skills in this patient group. The aim of this study was to investigate how young adults with an SVP diagnosis are coping with adulthood and the emotional experiences of daily life.

    SUBJECTS AND METHODS: Semistructured, qualitative interviews were held with 11 SVP respondents, selected by physical and psychological parameters identified in an earlier quantitative study. Data from the interviews were analyzed by a research group using a phenomenological methodology.

    RESULTS AND CONCLUSIONS: The goal for SVP patients is to gain control over their disease to live normal lives. Patients require special support from their core network to overcome physical and psychological challenges. Respondents underscored the need for friends and resource persons outside the family to help lift them out of their role as disabled cardiac patients and provide them with "normal" life experiences.

    OriginalsprogEngelsk
    TidsskriftJournal of Cardiovascular Nursing
    Vol/bind28
    Udgave nummer2
    Sider (fra-til)187-196
    Antal sider10
    ISSN0889-4655
    DOI
    StatusUdgivet - mar. 2013

    Emneord

    • mestring
    • congenital heart disease
    • coping
    • family
    • normal life
    • single ventricle
    • support
    • young
    • sundhed

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