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

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. Congenital heart disease is the most common congenital condition, affecting approximately 1% of newborns. Parents of these children often experience substantial psychological distress due to the fear of losing their child, the burden of hospital stays and surgeries, and concerns about their child's future health. Additionally, children with congenital heart disease more often require special education services and face a higher risk of mental health issues. Parenting a child with mental health issues also presents specific challenges, as parents may find it hard to access proper help for their child, may feel stigmatised or have feelings of blame and guilt. We explored the lived experiences of parents raising a child with both heart disease and mental health issues in Denmark by interviewing ten parents (aged 39-57) of children (aged 5-17). Through qualitative analysis, we identified 3 themes of importance for these parents: (1) Parental roles and caring behaviours: Parents struggled with meeting their own parenting ideals and dealing with the stigma of mental health issues. (2) Parental reflections on their illness explanations: Understanding the child's mental health issues was important. Parents often perceived a connection between their child's heart disease and mental health issues, influenced by biological, psychological, or social factors. (3) Differences in access to help and support: Parents described how their child's heart disease impacted their ability to obtain mental health support. Some felt that the heart disease delayed access to mental health support, while others leveraged the physical condition to secure mental health support. Overall, these findings might assist health professionals in providing better support to these families in clinical settings.