Participation in physical activity improves health in individuals with congenital heart disease. However, most do not sufficiently engage in physical activity. The aim of this study was to collect information regarding the experiences of adolescents with congenital heart disease who practiced physical activities.
French adolescents aged 13-18 years, diagnosed with congenital heart disease, class I or II dyspnea on the NYHA scale and authorized physical activity were interviewed individually about their physical activity experiences using a semi-structured format. The qualitative interview transcript data were analyzed using a phenomenological approach; data analysis was performed independently by three researchers and merged at each step until saturation.
Eleven adolescents with congenital heart disease participated. Three main themes emerged: ‘own representation’, ‘physical activity (PA) set-up’ and ‘environment’. Adolescents had a generally positive view of physical activity which was associated with positive experiences. However, they reported that their physical condition limited PA, and they wished for adapted activities. The results revealed the importance of environmental factors, for example within the social and school environments. The participants indicated that they appreciated the social interactions that PA afforded, but that integration into a group could be difficult, especially in school, with some participants describing feelings such as anxiety, frustration or guilt when they could not participate fully. PA facilitators included familial support. However, participants noted a lack of clear medical guidance to help them choose suitable activities based on their circumstances and personal preferences. They wished for the public to be better informed about congenital heart disease to reduce stigmatism.
This study provides valuable information for clinicians, physical educators, and policy makers to help them promote physical activity and support adolescents and their families in understanding their own condition, maximizing their potential, and in their choice of activities.
Physical activity; adolescents; congenital heart disease; participation.