Parents of Children with Congenital Heart Disease (CHD): A Narrative Study of the Social and Clinical Impact of CHD Diagnosis on Their Role and Health

Congenital heart diseases (CHDs) lead to psychological and social repercussions for parents of affected children: the diagnosis, screenings, surgeries, and hospitalization, as well as ongoing difficulties bring with them stress, anxiety, fear, stigmatization, and isolation. Studies investigating parents' direct perspective on these issues lack in the field literature. Our research aims to leverage parents' narratives in order to explore how they describe their role as parents of a child with CHD and the impact of its social and clinical repercussions on their lives. We recruited 45 parents and analyzed their narratives through the MADIT approach, focusing on the discursive modalities and content cores employed. Parents describe and judge their role as 'worried-protective', 'heroic', 'normal-untroubled', and 'unfortunate', in a way that strongly characterizes the person, leaving limited possibilities for assuming different features. The clusters 'state of ordeal', 'state of alert-overprotection', and 'personal identity changes' are connoted as inevitable and established component of parents' lives, while 'limitation of life experiences' is less monolithic and more open to change. Current narratives assume a totalizing form in the life of these parents, that can lead to stigma and exacerbate the already present difficulties and challenges, that need targeted psychological intervention by field professionals.