Exploring health-related experiences of children and young people with congenital heart disease

  1. Yvonne Birks BSc DPhil RN RSCN1,
  2. Patricia Sloper BA MA PhD CPsychol2,
  3. Robert Lewin MPhil3,
  4. Jonathan Parsons MBBS FRCP4

Article first published online: 4 SEP 2006

DOI: 10.1111/j.1369-7625.2006.00412.x

Issue

Health Expectations

Health Expectations

Volume 10, Issue 1, pages 16–29, March 2007

Additional Information

How to Cite

Birks, Y., Sloper, P., Lewin, R. and Parsons, J. (2007), Exploring health-related experiences of children and young people with congenital heart disease. Health Expectations, 10: 16–29. doi: 10.1111/j.1369-7625.2006.00412.x

Author Information

  1. 1

    Research Fellow, Department of Health Sciences, University of York, York

  2. 2

    Professor, Child and Families Team, Social Policy Research Unit, University of York, York

  3. 3

    Director of BHF Care and Education Group, Department of Health Sciences, University of York, York

  4. 4

    Consultant Paediatric Cardiology, Yorkshire Heart Centre, Paediatric Cardiac Centre, Leeds General Infirmary, Leeds, UK

*Yvonne Birks Department of Health Sciences Area 2 Seebohm Rowntree Building University of York York YO10 5DD UK E-mail: yfb1@york.ac.uk

Publication History

  1. Issue published online: 11 SEP 2006
  2. Article first published online: 4 SEP 2006
  3. Accepted for publication 19 June 2006

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Keywords:

  • children;
  • congenital heart disease;
  • qualitative

Abstract

Objective  To determine the health-related experiences of children with congenital heart disease.

Design  Qualitative, semi-structured interviews.

Participants  A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England.

Results  The main themes identified included: physical limitations of their condition; restrictions; attitudes of others; choices about information; coping with life and privacy.

Conclusions  This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

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