The Perceptions of Children with Congenital Heart Disease in Saudi Arabia and Parents’ Proxy Reports about the Children’s Behavioural and Emotional Status: A Grounded Theory Study

Background: Even with a recent improvement in survival and prevalence rates of children with congenital heart disease (CHD) worldwide, CHD in children remains a global burden. A high incidence rate of children with CHD in Saudi Arabia (SA) indicates a need for attention to be paid to this population. A literature review was conducted following a systematic process, revealed that children with CHD exhibit behavioural and emotional issues due to undergoing different medical treatments and hospitalisation. There is a lack of in-depth exploration of the behaviour and emotions of children with CHD through qualitative research, and limited understanding of the self-perceptions of children younger than seven-year-old. Aim: To explore the behaviour and emotions of 4-10 years old with CHD in SA, through children’s self-perception and parental proxy reports. Methods: Constructivist Grounded Theory (GT) approach of Charmaz was used. Twenty semi-structured interviews of ten child/parent dyads were undertaken. Children’s interviews were combined with an Arts-Based approach using drawing, pictures, and faces of emotions (emojis). Findings: The perceptions of children and parents were conceptualised into a core category the behavioural and emotional reactions to stressful events related to living with CHD, and three sub-categories: CHD medical treatment stressors, sociocultural stressors, and physical changes stressors. A substantive theory emerged, identified as children’s behavioural and emotional reactions towards stressors related to living with CHD with the presence of influencing factors. Conclusion: The findings from this study contribute to the understanding of relationships between CHD and children’s behavioural and emotional reactions. Also, they supported the need for early assessment of behaviour and emotions among children with CHD, and the application of preventative and supportive measures for the children and their families in SA