FROM ‘IT MAKES ME FEEL FREE’ TO ‘THEY WON'T LET ME PLAY’: THE BODY AND PHYSICAL ACTIVITY-RELATED PERCEPTIONS AND EXPERIENCES OF CHILDREN WITH CONGENITAL HEART DISEASE

Abstract

Despite the promotion of evidence based physical activity guidelines and the well-established links between activity engagement and health, well-being, and quality of life in individuals with Congenital Heart Disease (CHD), children with CHD tend to be insufficiently active. The purpose of this study was to examine the body and physical activity perceptions and experiences of children with CHD and of their parents to advance understanding of how children make sense of and navigate the complexities associated with physical activity participation. Adopting a narrative constructionist approach, we conducted semi-structured interviews with 16 children aged 9 to 12 (56% female; n = 9) and their parents (32 interviews total) recruited through a pediatric cardiology clinic. The children had diagnoses of Fontan circulation (n=6); Transposition of the Great Arteries (n=5); Tetralogy of Fallot (n=3); and Coarctation of the Aorta (n=2). Interview data were analyzed using thematic narrative analysis; we examined the content of participants’ body and physical activity stories and the core patterns within them. Based on accelerometry (ActiGraph) data, their median moderate-to-vigorous physical activity was 47 mins/day (interquartile range 33-72 mins/day). Children were physically active for pleasure, social connection, health and well-being, and to enhance sport performance. While confident in their abilities, some children had trouble keeping up with others due to fatigue, delayed motor skill development, and/or cognitive impairment, and were often socially excluded from physical activity settings. This exclusion engendered self-conscious emotions of embarrassment, shame, and envy, and loneliness and isolation, thereby negatively impacting activity involvement. Parents attempted to mitigate these emotions by being active with their children and by enrolling them in inclusive activities promoting physical literacy and life-long participation (e.g. hiking/walking, biking, dance, baseball). Many children had symptoms associated with physical activity and discussed the ongoing process of learning to self-regulate by taking breaks and hydrating, adjusting activity intensity and type, however at times over-regulated and abandoned activity entirely. Socioeconomic status underpinned the participants’ experiences; some families had resources to access inclusive physical activity programming, while others had trouble finding affordable options which denied their children opportunities to participate in safe and enjoyable activities. The findings can inform clinicians, parents, and activity leaders as to the complexities associated with activity participation, guiding them in how to promote safe, sustainable, and enjoyable physical activity for children with CHD. The findings also have the potential to inform interventions to make physical activity more inclusive of children with CHD.