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Growing up with congenital heart disease: the dilemmas of adolescents and young adults

Published online by Cambridge University Press:  19 August 2008

Elizabeth M. Tong ,
Patricia S.A. Sparacino ,
DeAnne K.H. Messias ,
Dru Foote ,
Catherine A. Chesla  and
Cartherine L. Gilliss
Elizabeth M. Tong*
Affiliation:
Department of Nursing, UCSF Stanford Health care, San Francisco, CA, USA
Patricia S.A. Sparacino
Affiliation:
Department of Nursing, UCSF Stanford Health care, San Francisco, CA, USA
DeAnne K.H. Messias
Affiliation:
Division of Graduate Nursing, Indiana Wesleyan University, Marion, IN, USA
Dru Foote
Affiliation:
The School of Nursing, University of California, San Francisco, CA, USA
Catherine A. Chesla
Affiliation:
The School of Nursing, University of California, San Francisco, CA, USA
Cartherine L. Gilliss
Affiliation:
The School of Nursing, University of California, San Francisco, CA, USA
*
Elizabeth M. Tong, UCSF Stanford Health Care
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Abstact

Advances in diagnosis, medical management and surgical intervention have improved the longevity and quality of life for children with congenital heart disease. Despite this, research studies specifically examining the psychosocial concerns of adolescents and young adults with congenital heart disease are few. To explore the subjective experiences and dilemmas of this population during the transition from adolescence to young adulthood, we interviewed, using a semi-structured protocol, a convenience sample of nine adolescents and young adults. Using analytic procedures inherent in Grounded Theory methodology, seven themes were identified: the dilemma of normality; dilemmas in disclosure; dilemmas in strategies for management of illness; the challenge of social integration versus social isolation; the challenge of dependence versus independence; the challenge of uncertainty; and strategies for coping. An understanding of these experiences by health professionals can be beneficial in helping this clinical population as they grow up and face the challenges of an uncertain, yet promising, future.

Keywords

Adolescents/young adultscongential heat diseasecoping
Type
Original Articles
Information
Cardiology in the Young , Volume 8 , Issue 3 , July 1998 , pp. 303 - 309
Copyright
Copyright © Cambridge University Press 1998

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