Adolescents with Implantable Cardioverter Defibrillators: A Patient and Parent Perspective

Authors

  • BELINDA RAHMAN M.Sc.,

    1. Department of Paediatrics, University of Melbourne, Parkville, Australia
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  • IVAN MACCIOCCA M.Sc.,

    1. Genetic Health Services Victoria, Murdoch Childrens Research Institute, Parkville, Australia
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  • MARGARET SAHHAR M.S.W.,

    1. Department of Paediatrics, University of Melbourne, Parkville, Australia
    2. Genetic Health Services Victoria, Murdoch Childrens Research Institute, Parkville, Australia
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  • SULEMAN KAMBERI B.App.Sc., CDSPECAP,

    1. Cardiology Department, The Royal Children's Hospital, Parkville, Australia
    2. Medtronic Inc., Minneapolis, Minnesota
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  • VANESSA CONNELL C.N.S.,

    1. Cardiology Department, The Royal Children's Hospital, Parkville, Australia
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  • RONY E. DUNCAN Ph.D.

    1. Department of Paediatrics, University of Melbourne, Parkville, Australia
    2. Centre for Adolescent Health, Children's Bioethics Centre and Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, Australia
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  • Dr. Duncan is currently supported by an NHMRC Public Health Training Fellowship.

Address for reprints: Belinda Rahman, M. GEN. COUNS., Psychosocial Research Group, Level 3 Dickinson Building, High Street, Prince of Wales Hospital, Randwick, NSW 2031, Australia. Fax: 612 9382 3372; e-mail: belinda.rahman@unsw.edu.au

Abstract

Background:An implantable cardioverter defibrillator (ICD) is a device used in the treatment of individuals with life-threatening cardiac conditions. These include genetic disorders such as long QT syndrome, hypertrophic cardiomyopathy, and Brugada syndrome, all of which have the propensity to cause sudden cardiac death. Adults with ICDs consistently report elevated levels of anxiety and depression, as well as negative lifestyle changes associated with the device. Compared to older ICD recipients, young patients face decades of life with the device and the long-term impact and implications are important to consider. This research explores the experiences of adolescents living with an ICD. Parents of these adolescents were also included to explore the impact on them as the primary caregivers.

Methods: A qualitative approach was chosen to explore the lived experience; semistructured interviews with six adolescents and six parents were conducted from which a number of key themes emerged.

Results:The experiences described by participants included the restrictions adolescents face, the ICD shock experience, and ongoing challenges post-ICD implantation. However, both adolescents and parents were able to adjust to life after receiving an ICD and described several benefits associated with having the device. Findings also emerged relating to communication between health professionals and adolescents, and the limitations adolescents impose on themselves post-ICD implantation.

Conclusion:These findings have important implications for clinical practice and may help guide medical management for adolescents with ICDs and their families. (PACE 2012; 35:62–72)

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