Cardiovascular medicine
Illness understanding in children and adolescents with heart
disease
G R Veldtman, S L Matley, L Kendall, J Quirk, J L Gibbs, J M Parsons, J Hewison
Department of
Paediatric Cardiology, Yorkshire Heart Centre, Leeds General Infirmary,
Great George Street, Leeds LS1 3EX, UK
Correspondence to: Dr Gibbs email: jgibbs{at}cwcom.net
Accepted 24 May 2000
AIMS
To evaluate illness knowledge
and understanding in children and adolescents with congenital and
acquired heart disease, and whether the degree of understanding is
related to age, sex, or complexity of the heart disease.
DESIGNProspective cohort study.
SETTINGTertiary paediatric cardiac centre.
METHODSPatients' understanding of
their congenital heart disease was assessed in a representative sample
of volunteers aged between 7-18 years using semistructured interviews
based upon Leventhal's illness representation model.
RESULTS63 of 69 interviews were
suitable for analysis. There were similar numbers of boys and girls and
a wide distribution of heart defects. Only 30% of patients had a good
understanding of their illness; 77% did not know the medical name of
their condition, and 33% had a wrong or poor understanding of their
illness. Understanding was unrelated to age, sex, or the nature of the
heart disease. Understanding of illness duration was significantly
related to age, but not to sex or to the nature of the disease.
CONCLUSIONSIllness understanding is
poor in children and adolescents with heart disease, and many have an
entirely wrong concept of their disease. Intensified efforts to ensure
better patient and parental understanding are needed.
Keywords: understanding illness; children; heart disease
© 2000 by Heart
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