Narrative analysis of adults with complex congenital heart disease: Childhood experiences and their lifelong reverberations

Background: With access to surgical care, >90% of today's infants with congenital heart disease (CHD) will reach adulthood. During childhood, survivors accrue a wealth of health care experience and develop strategies for navigating life with a chronic disease. Methods: Seeking to learn from this individualized process, we invited adults with complex CHD to participate in narrative analysis—an established qualitative research method for studying how individuals derive meaning from their personal stories. Audio recordings of 2-4 hour free-form interviews were transcribed and iteratively analyzed to identify common themes and detect similarities or differences in language, viewpoint and interpretation. Recruitment continued until saturation was reached (n = 10). Results: While each narrative was unique, CHD had a pervasive effect on the autobiography of all participants. Seven themes were discussed consistently: (1) parental/sibling relationships, (2) physical limitations, (3) embarrassment/denial, (4) memories of pediatric health care, (5) transition to adult care, (6) education and career choices, and (7) relationship and reproductive choices. While some of the recalled experiences were negative, all participants also spoke positively about the effect of CHD on their lives. Conclusions: Adults with CHD provide the voices of expert witnesses; illuminating how the pediatric journey influences their identity, choices, personal relationships and adult health care interactions. These narratives could inform and improve the contemporary care of children with heart disease.