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

  • Lynne Kendall (a1) (a2), Patricia Sloper (a3), Robert J. P. Lewin (a2) and Jonathan M. Parsons (a1)
Abstract

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.

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Corresponding author
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@ leedsth.nhs.uk
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References

Bjornstad PG, Spurkland I, Lindberg HL. The impact of severe congenital heart disease on physical and psychosocial functioning in adolescents. Cardiol Young 1995; 5: 5662.
Brandhagen DJ, Feldt RH, Williams DE. Long-term psychologic implications of congenital heart disease: a 25 year follow-up. Mayo Clin Proc 1991; 66: 474479.
Spurkland I, Bjornstad PG, Lindberg H, Seem E. Mental health and psychosocial functioning in adolescents with congenital heart disease. A comparison between adolescents born with severe heart defect and atrial septal defect. Acta Paediatr 1993; 82: 7176.
Casey FA, Sykes DH, Craig BG, Power R. Behavioural adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 1996; 21: 335352.
Utens EMJW, Verhulst FC, Meijboom FJ, et al. Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med 1993; 23: 415424.
Tomassoni TL. Role of exercise in the management of cardiovascular disease in children and youth. Med Sci Sports Exerc 1996; 28: 406413.
Fredriksen P, Kahrs N, Blaasvaer S, et al. Effect of physical training in children and adolescents with congenital heart disease. Cardiol Young 2000; 10: 107114.
Sparacino PS, Tong EM, Messias DK, Foote D, Chesla CA, Gillis CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart and Lung: J Acute & Critical Care 1997; 26: 187195.
Utens EM, Bieman HJ, Verhulst FC, Witsenburg M, Bogers AJ, Hess J. Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiol Young 2000; 10: 239244.
Kennedy I. The Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995. 2001; Annex B, 11f.
Kennedy I. The Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995. 2001
Tong EM, Sparacino PSA, Messias DKH, Foote D, Chesla CA, Gillis CL. Growing up with congenital heart disease: the dilemmas of adolescents and young adults. Cardiol Young 1998; 8: 303309.
Kendall L, Lewin RJP, Parsons JM, Veldtman GR, Quirk J, Hardman GF. Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiol Young 2001; 11: 431438.
Kendall L, Sloper P, Lewin RJP, Parsons JM. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2002; 13: 1119.
Lewin RJP, Kendall L, Sloper P. Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom. Cardiol Young 2002; 12: 412414.
Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG (eds). Analysing Qualitative Data. Routledge, London, 1994, pp 173194.
Lightfoot J, Wright S, Sloper P. Service support for children with a chronic illness or physical disability attending mainstream schools. Social Policy Research Unit, University of York, 1998.
Beresford B. Personal Accounts: involving disabled children in research. The Stationary Office, London, 1997.
Woodgate R. Health professionals caring for chronically ill adolescents: adolescents' perspectives. J Soc Paediatr Nurs 1998; 3: 5768.
Beresford B, Sloper T. The information needs of chronically ill or physically disabled children and adolescents. Social Policy Research Unit, University of York, 1999.
Gardner FV, Angelini GD. Psychological aspects of congenital heart disease. Cardiol Young 1995; 5: 302309.
Shortis M. Personal communication. (2002).
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Cardiology in the Young
  • ISSN: 1047-9511
  • EISSN: 1467-1107
  • URL: /core/journals/cardiology-in-the-young
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