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Refereed Publications

  1. Tong, E. M. and Sparacino, P. S. and Messias, D. K. and Foote, D. and Chesla, C. A. and Gilliss, C. L., Growing up with congenital heart disease: the dilemmas of adolescents and young adults, Cardiology in the young, vol. 8 no. 3 (July, 1998), pp. 303-9, ISSN 1047-9511
    (last updated on 2011/01/30)

    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.

    Adaptation, Psychological* • Adolescent • Adult • Aging* • Female • Heart Defects, Congenital • Humans • Male • Quality of Life • Social Adjustment* • psychology* • surgery