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.
This study reports the recollected stories of eight parents regarding their experiences of having an infant diagnosed with a congenital heart defect. The qualitative research design incorporated interactive interviews and thematic data analysis, using grounded theory techniques. The results describe various aspects of the parents' transitional experience: something wrong, illusive normality, rude awakening, managing uncertainty, new meanings, and taking stock. Implications are drawn for family practitioners as facilitators of this complex transition.
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