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

Sarah Bérubé; David Ogez; Jennifer Aramideh; Claudine Amesse; Claude J Bourque; Claire Longpré; Lorraine Muise; Ariane Levesque; Serge Sultan

doi:10.1177/20551029211039920

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

Health Psychol Open. 2021 Nov 25;8(2):20551029211039920. doi: 10.1177/20551029211039920. eCollection 2021 Jul-Dec.

Authors

Sarah Bérubé^{1

2}, David Ogez^{1

2

3}, Jennifer Aramideh^{1

2}, Claudine Amesse², Claude J Bourque^{2

4}, Claire Longpré², Lorraine Muise², Ariane Levesque^{1

2}, Serge Sultan^{1

2}

Affiliations

¹ Department of Psychology, University of Montreal, Montreal, QC, Canada.
² Sainte-Justine UHC, Montreal, QC, Canada.
³ Hôpital Maisonneuve-Rosemont, Montreal, QC, Canada.
⁴ Department of Pediatrics, Université de Montréal, Montreal, QC, Canada.

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.

Keywords: adherence; body image; children; clinical health psychology; exercise behavior; health behavior; illness; information; physical activity; qualitative method.