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

Author:

Bérubé Sarah12ORCID,Ogez David123ORCID,Aramideh Jennifer12,Amesse Claudine2,Bourque Claude J24,Longpré Claire2,Muise Lorraine2,Levesque Ariane12,Sultan Serge12

Affiliation:

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.

Funder

Canadian Institutes of Health Research

Fonds de Recherche du Québec - Santé in collaboration with the Fondation des Étoiles

Publisher

SAGE Publications

Subject

Psychiatry and Mental health,Clinical Psychology

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