Linking heart and mind - lived experiences of parents to children with congenital heart disease and mental health issues

Abstract

Children with congenital heart disease are more likely to receive special educational services in schools and have an increased risk of mental health issues. We explored the lived experiences of parents caring for a child with heart disease and concurrent mental health issues in Denmark. Semi-structured interviews with ten parents (age 39–57 years) to these children (age 5–17 years) were analysed using interpretative phenomenological analysis. Three Group Experiential Themes (GETs) were generated from the analysis: The first GET, Parental roles and caring behaviours, described parental struggles of fulfilling their parenting role ideals and experiences with stigmatization of MHI. GET two, Parental reflections on their illness explanations, portrayed how parents utilize different illness explanations to make sense of their child’s MHI. GET three, Differences in access to help and support, captured how the CHD affected overall access to mental health support. The results may inform various topics of importance for health professionals to address in their clinical encounters with these families.