Parental recommendations and exercise attitudes in congenital hearts

This is the final version. Available from Cambridge University Press via the DOI in this record. Background: Children and young people with CHD benefit from regular physical activity. Parents are reported as facilitators and barriers to their children’s physical activity. The aim of this study was to explore parental factors, child factors, and their clinical experience on physical activity participation in young people with CHD. Methods: An online questionnaire was co-developed with parents (n = 3) who have children with CHD. The survey was then distributed in the United Kingdom by social media and CHD networks, between October 2021 and February 2022. Data were analysed using mixed methods. Results: Eighty-three parents/ guardians responded (94% mothers). Young people with CHD were 7.3 ± 5.0 years old (range 0–20 years; 53% female) and 84% performed activity. Parental participation in activity (X2 (1) = 6.9, P < 0.05) and perceiving activity as important for their child were positively associated with activity (Fisher’s Exact, P < 0.05). Some parents (~15%) were unsure of the safety of activity, and most (~70%) were unsure where to access further information about activity. Fifty-two parents (72%) had never received activity advice in clinic, and of the 20 who received advice, 10 said it was inconsistent. Qualitative analysis produced the theme “Knowledge is power and comfort.” Parents described not knowing what activity was appropriate or the impact of it on their child. Conclusion: Parental participation and attitudes towards activity potentially influence their child’s activity. A large proportion of young people performed activity despite a lack and inconsistency of activity advice offered by CHD clinics. Young people with CHD would benefit from activity advice with their families in clinics.Canon Medical Systems LimitedUniversity of ExeterWellcome Trus