It’s difficult to say no: Development of a parenting booklet about physical activity restrictions and recommendations in pediatric hemophilia

Abstract

Physical activity restrictions can be particularly difficult for children with hemophilia and their parents, as most children want to engage in the same activities as their friends or siblings. This study aimed to assess parents’ need for a booklet on how to manage physical activity restrictions based on the self-determination theory and gather their suggestions for the booklet’s improvement in a focus group. Data were analyzed using thematic analyses to highlight to what extent the needs of parents were met by the booklet, as well as their suggestions for improvement. A discussion on the methodology of the booklet’s creation is also presented.