Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
The experience of being diagnosed with hypertrophic cardiomyopathy through family screening in childhood and adolescence.
University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy.
University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy.
University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy.
University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy.
2012 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 22, no 5, 528-535 p.Article in journal (Refereed) Published
Abstract [en]

Aim To describe the experiences of children and adolescents being screened positive for hypertrophic cardiomyopathy and how this impacts their daily life. BACKGROUND: Hypertrophic cardiomyopathy is a hereditary disease and the most common medical cause of sudden death in childhood and adolescence. This is the reason for recommending screening in children with an affected first-degree relative. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the daily life of the affected individual. DESIGN: This is a descriptive qualitative interview study. METHODS: We interviewed 13 asymptomatic children or adolescents diagnosed with hypertrophic cardiomyopathy through family screening 12-24 months after the diagnosis. Analysis was conducted with qualitative content analysis. RESULTS: Children described an involuntary change, which affected their daily life with limitations and restrictions in life, both in the individual and social context. Lifestyle recommendations had the most severe impact on daily life and affected their social context. They tried to navigate in a world with new references, and after reorientation they felt hope and had faith in the future. CONCLUSIONS: Children diagnosed with hypertrophic cardiomyopathy through family screening went through an involuntary change resulting in limitations and restrictions in life. This study indicates that there is a need for support and that healthcare professionals have to consider the specific needs in these families. Our findings thus give guidance in how best to improve support to the patients and their family. Diagnosis in asymptomatic children should be accompanied by ideally multi-professional follow-up, focusing not only on medical issues.

Place, publisher, year, edition, pages
2012. Vol. 22, no 5, 528-535 p.
Keyword [en]
Adolescence, childhood, content analysis, hypertrophic cardiomyopathy, interview, psychosocial consequences, transition, family screening, inherited cardiac disease
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hv:diva-4367DOI: 10.1017/S1047951111002101ISI: 000308722000006PubMedID: 22272577OAI: oai:DiVA.org:hv-4367DiVA: diva2:533037
Available from: 2012-06-12 Created: 2012-06-12 Last updated: 2014-10-23Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed
In the same journal
Cardiology in the Young
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

Altmetric score

Total: 73 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf