The Perceptions of Caregivers Toward Physical Activity and Health in Youth with Congenital Heart Disease

Medical advances have reduced mortality in youth with congenital heart disease (CHD). Although physical activity is associated with enhanced quality of life, most patients are inactive. By addressing medical and psychological barriers, previous literature has reproduced discourses of individualism which position cardiac youth as personally responsible for physical inactivity. Few sociological investigations have sought to address the influence of social barriers to physical activity, and the insights of caregivers are absent from the literature. In this study, caregiver perceptions toward physical activity for youth with CHD were investigated at a Canadian hospital. Media representations, school liability, and parental overprotection construct cardiac youth as “at risk” during physical activity, and position their health precariously. Indeed, from the perspective of hospital staff, the findings indicate the centrality of sociological factors to the physical activity experiences of youth with CHD, and the importance of attending to the contextual barriers that constrain their health and physical activity.