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Parents’ experiences of having an asymptomatic child diagnosed with hypertrophic cardiomyopathy through family screening

Published online by Cambridge University Press:  01 October 2010

Ewa-Lena Bratt ,
Ingegerd Östman-Smith ,
Carina Sparud-Lundin  and
B. Åsa Axelsson
Ewa-Lena Bratt*
Affiliation:
Department of Paediatrics, Institute of Clinical Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Department of Paediatric Cardiology, The Queen Silvia Children’s Hospital, Gothenburg, Sweden
Ingegerd Östman-Smith
Affiliation:
Department of Paediatrics, Institute of Clinical Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden Department of Paediatric Cardiology, The Queen Silvia Children’s Hospital, Gothenburg, Sweden
Carina Sparud-Lundin
Affiliation:
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
B. Åsa Axelsson
Affiliation:
Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
*
Correspondence to: E.-L. Bratt, MScN, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy. The Queen Silvia Children’s Hospital, 416 85 Gothenburg, Sweden. Tel: 0046 31 3435139; Fax: 0046 31 3435947; E-mail: [email protected]
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Abstract

Background

Hypertrophic cardiomyopathy is hereditary and the commonest medical cause of sudden death in childhood and adolescence, which is the reason for recommending screening in children with an affected parent. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the affected individual and impacts on the whole family.

Objective

To describe parents’ experiences of how the diagnosis of hypertrophic cardiomyopathy in their child affects daily life.

Method

Twelve parents with asymptomatic children diagnosed with hypertrophic cardiomyopathy through family screening were interviewed 12–24 months after the diagnosis. Analysis was conducted with qualitative content analysis.

Results

Parents described the immediate reaction of shock, grief, and injustice but were also grateful that the child was still asymptomatic. The diagnosis caused a significant change in lifestyle for most families due mainly to restrictions of sports activities. Parents had to adapt to the new life and develop strategies to protect their child. Death became a reality causing feelings of vulnerability. Regular medical check-ups and access to the liaison nurse were described as important factors of reassurance.

Conclusions

Parents experienced early diagnosis as positive in a long-term perspective. The main changes perceived were ascribed to lifestyle modifications. Parents with athletic children experienced the lifestyle modifications as more severe. They strived to create a new life where they could feel secure and have faith in the future, and emphasised the need of regular follow-up and support from health care professionals as “mental pain relief”, which helped them achieve a new state of normality.

Keywords

Adolescencechildhoodcontent analysisinterviewpsychosocial consequencestransition
Type
Original Articles
Information
Cardiology in the Young , Volume 21 , Issue 1 , February 2011 , pp. 8 - 14
Copyright
Copyright © Cambridge University Press 2010

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