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 and their parents

ABSTRACT

The purpose of this study was to examine the body and physical activity perceptions and experiences of children with congenital heart disease (CHD) and of their parents to advance understanding of how they make sense of and navigate the complexities of the children’s physical activity participation in the context of their everyday lives. Guided by narrative constructionism, we conducted semi-structured interviews with 16 children aged 9 to 12 and their parents (32 interviews total) and examined the content of and core patterns within their body and physical activity-related stories. Children derived pleasure, social connection, physical literacy, and health and well-being from activity engagement. Children and parents experienced complex emotional webs of pride, embarrassment, shame, envy, and fear/anxiety in relation to the body and physical activity, however, attempted to manage these emotions to foster sustained activity involvement. While children engaged in safe yet pleasurable activities by self-regulating, parents attempted to hide their worries surrounding their children’s self-regulatory abilities. Cultural narratives of risk, healthism, and disability were drawn upon by participants when structuring their stories, thereby shaping the body and activity-related cognitions, emotions, and behaviours they experienced. This study highlights the utility of narrative inquiry to examine the complexities of children with CHD’s activity participation, including the role of the sociocultural milieu in shaping body and physical activity-related psychological states. The findings can guide activity leaders, parents, and health-care practitioners in how to foster inclusive physical activity programming to optimise the health and well-being of children with CHD.

KEYWORDS:

• Congenital heart disease
• child-parent dyads
• physical activity
• body perceptions and experiences
• narrative inquiry

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Funding for this research was provided by the Heart and Stroke Foundation of Canada (Grant # G-17-0018284).

Notes on contributors

E. V. Bennett

E. V. Bennett is a Postdoctoral Teaching Fellow in the School of Kinesiology and in the Department of Pediatrics at the University of British Columbia. Her research focuses on the role of physical (in)activity coupled with social relationships and cultural norms in shaping body-related perceptions, cognitions, emotions, and behaviours across the lifespan.

C. Voss

C. Voss is a Clinical Assistant Professor with the Department of Pediatrics, Faculty of Medicine at the University of British Columbia. Her research focuses on the measurement of children’s physical activity behaviours and how this important health behaviour is related to current and long-term health outcomes.

G. Faulkner

G. Faulkner is a professor in the School of Kinesiology at the University of British Columbia and a CIHR-PHAC Chair in Applied Public Health. He is the founding editor of the Elsevier journal 'Mental Health and Physical Activity'. Broadly, his research has focused on two interrelated themes: the effectiveness of physical activity promotion interventions, and physical activity and mental health.

K. C. Harris

K. C. Harris is a pediatric interventional cardiologist, an Assistant Professor in the department of Pediatrics at the University of British Columbia, and the Research Director of the BC Children’s Hospital Children’s Heart Centre. His research focuses on pediatric congenital heart disease and physical activity promotion.