Hostname: page-component-848d4c4894-p2v8j Total loading time: 0 Render date: 2024-06-11T01:37:15.689Z Has data issue: false hasContentIssue false

What do parents know about the malformations afflicting the hearts of their children?

Published online by Cambridge University Press:  22 April 2005

Massimo Chessa
Affiliation:
Paediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Milan, Italy
Gabriella De Rosa
Affiliation:
Paediatric Cardiology Unit, Paediatric Department, Università Cattolica del Sacro Cuore, Rome, Italy
Manuela Pardeo
Affiliation:
Paediatric Cardiology Unit, Paediatric Department, Università Cattolica del Sacro Cuore, Rome, Italy
Diana G. Negura
Affiliation:
Paediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Milan, Italy
Gianfranco Butera
Affiliation:
Paediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Milan, Italy
Alessandro Giamberti
Affiliation:
Paediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Milan, Italy
Edoardo Bossone
Affiliation:
National Research Council, Southern Italy c/o ISBEM Cittadella della Ricerca, Brindisi, Italy
Mario Carminati
Affiliation:
Paediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Milan, Italy

Abstract

Traditionally, medical professionals have entrusted the parents of children with chronic illness with the task of imparting knowledge about the illness to the children. This practice assumes that parents understand the illness, and that they pass on their knowledge in a manner appropriate for the individual child. The aim of our study was to assess the knowledge that parents of children with a cardiac defect have about the malformation in the heart of their child. We sent a modified version of the Leuven questionnaire to 350 families. The questionnaire was filled in and sent back to our centre by 148 families. Parents showed a good knowledge of the name and anatomical characteristics of the cardiac disease suffered by their child. Parents with a child taking drugs were not very knowledgeable about the regime, side effects, and interaction with other drugs or food. Only one-quarter of the parents knew the definition of endocarditis, although almost two-fifths were aware that unexplained fever for more than 5 days was the most typical symptom. Less than half of the parents knew that endocarditis could recur. About two-fifths of parents knew the real possibility of their child being involved in competitive sports; but almost half of parents were unable to answer this question. The poor knowledge about particular aspects of the disease, treatment, and preventive measures revealed by our parents may have major consequences. The results of our study are relevant to general daily clinical practice.

Type
Original Article
Copyright
© 2005 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Perloff JK. Congenital heart disease in adults: a new cardiovascular subspecialty. Circulation 1991; 84: 18811889.Google Scholar
Chessa M, Cullen S, Deanfield J, et al. The care of adult patients with congenital heart defects: a new challenge. Ital Heart J 2004; 5: 178182.Google Scholar
Eiser C, Town C, Tripp JH. Illness experience and related knowledge amongst children with asthma. Child Care Health Dev 1987; 14: 1124.Google Scholar
Veldtman GR, Matley SL, Kendall L, et al. Illness understanding in children and adolescents with heart disease. Heart 2000; 84: 395397.Google Scholar
Moons P, De Volder E, Budts W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001; 86: 7480.Google Scholar
Manning JA. Congenital heart disease and the quality of life. In: Engle MA, Perloff JK (eds). Congenital Heart Disease After Surgery: Benefits, Residua, Sequelae. Yorke Medical Books, New York, 1983, pp 347361.
Kantoch MJ, Collins-Nakai RL, Medwid S, Ungstad E, Taylor DA. Adult patients's knowledge about their congenital heart disease. Can J Cardiol 1997; 13: 641645.Google Scholar
Cetta F, Warnes CA. Adults with congenital heart disease: patient knowledge of endocarditis prophylaxis. Mayo Clin Proc 1995; 70: 5054.Google Scholar
Sparacino PS, Tong EM, Messias DK, et al. The dilemmas of parents of adolescents and young adult with congenital heart disease. Heart Lung 1997; 26: 187195.Google Scholar