‘I am almost like a fish’: an investigation of how children with congenital heart disease experience and perform movement in daily life

BACKGROUND: Because of dramatic medical improvements, most children with congenital heart disease (CHD) survive into adulthood. Nevertheless, they remain in need of long-term health care. Living with CHD implies having diminished aerobic capacity. As far as we know, no previous study within healthcare research has focused on how children with CHD experience movement and activity in daily life. METHODS: In order to examine this topic, a qualitative approach was employed that combined both interviews and observation of 11 children between 7 and 12 years of age and interviews with their parents. The theoretical base of the article is inspired by the philosopher Maurice Merleau-Ponty and his theory of movement. We use his descriptions of movement as intentional expressions to illuminate how children with CHD move in daily life. RESULTS: The study shows how the children use different strategies to participate in play and that they move to fulfill their first priority: to be together with other children. Despite having limited physical endurance, the children perceive themselves as having the same capabilities as other children and as acting as they do. At the same time, they are not unaware of their own limitations. They adjust and respond to the challenges they face in the different situations to which they are exposed. On one hand, they want others to take their limitations into consideration, while, on the other hand, they do not want others to know about these limitations. CONCLUSIONS: In our analysis, we interpret that living with CHD creates situations where the children constantly face their limitations, the gazes of others and their own wish to participate.