Cardiology in the Young

Original Article

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease

Lynne Kendall a1a2c1, Patricia Sloper a3, Robert J. P. Lewin a2 and Jonathan M. Parsons a1
a1 Paediatric Cardiac Department, Yorkshire Heart Centre, Leeds General Infirmary, Leeds, York, UK
a2 Department of Health Sciences, Research Section, Seebohm Rowntree Building, York, UK
a3 Social Policy Research Unit, University of York, Heslington, York, UK

Article author query
kendall l   [PubMed][Google Scholar] 
sloper p   [PubMed][Google Scholar] 
lewin rj   [PubMed][Google Scholar] 
parsons jm   [PubMed][Google Scholar] 


Background and purpose: Although much previous research has focused on the medical aspects of congenital cardiac disease, there is a growing body of research which suggests that families may need help and support with the wider issues associated with the medical condition. We have previously ascertained from young people with congenital cardiac disease their views on this subject. The purpose of this study was to obtain the views of their parents about the need for, and shape of, services for rehabilitation. Methods: This was a qualitative study using semi-structured interviews. We interviewed 17 parents in their own home. Interviews were tape-recorded and transcribed. Results: Parents would welcome more help and support from health professionals to enable them to manage more effectively the condition with their children. Particular areas of concern relate to the information they receive about the condition; communication between themselves and health professionals; establishing safe levels of activity; and managing the condition at school. Conclusions: This is a small study of the experiences and views of parents, which provides some important information on ways in which health professionals could address the current lack of services for rehabilitation.

(Accepted September 23 2002)

Key Words: Congenital heart disease; adolescents; young adults; physical activity.

c1 Correspondence to: Mrs L. Kendall, Research Physiotherapist, Ward 10 Yorkshire Heart Centre, Jubilee Wing, Leeds General Infirmary, Leeds, LS1 3EX, UK. Tel: 0113 392 7310; Fax: 0113 392 8474; E-mail: lynne.kendall@