Developing physical activity interventions for youth with cystic fibrosis and congenital heart disease: Learning from their parents

Despite the benefits of physical activity for youth with cystic fibrosis (CF) and congenital heart disease (CHD), most are insufficiently active. More information is required on how to facilitate physical activity in these populations. Although there are no studies that provide information about participation in CF and CHD youth from the perspective of parents, the involvement of caregivers may be an important facilitator to physical activity in youth with chronic diseases.ObjectiveThis qualitative study explored how the parents of youth with CF and CHD experience physical activity, and parents commented on both their own and their child’s physical activity.MethodsTwenty-nine parents from a CHD and CF clinic participated in a semi-structured interview, and a thematic analysis of the transcribed data was undertaken.ResultsParents discussed the numerous benefits and barriers associated with physical activity for both child and self. Role modeling was a critical social process to overcoming barriers. Parents experiences were situated within the broader family context characterized by a prevailing sense of stress and complexity.ConclusionBy illustrating how the parents of youth with CF and CHD understand the role of physical activity in their and their child’s life, this study provides valuable information regarding the development of interventions to increase physical activity among children with CF and CHD.

► This study explored parental perceptions toward physical activity (PA) among youth with CF and CHD. ► Parents reported benefits and barriers associated with PA for both child and self. ► PA was influenced by the broader family context characterized by chronic stress. ► Recommendations for the design of safe, enjoyable, and inclusive PA interventions are offered. ► Sensitivity to temporal dilemmas and stress is critical to intervention success.