According to a study published in Health Psychology Open, researchers have developed a booklet intended for parents of children with hemophilia based on the self-determination theory, which can help parents set limits without compromising their child’s well-being while promoting self-motivation to comply with healthcare providers’ recommendations.

“According to this theory, parents can foster the development of a more autonomous and long-lasting form of motivation for health-related goals in their child by adopting an autonomy-supportive style of communication,” wrote Sarah Bérubé, PhD, of Sainte-Justine University Hospital and University of Montreal, Canada, and colleagues.

The researchers designed a booklet on how to manage physical activity restrictions based on the self-determination theory using previously available written materials and in collaboration with healthcare providers. They then assessed parents’ need for the booklet using a questionnaire and gathered their suggestions on how to improve the booklet in a focus group. The team used the study data and suggestions to refine the booklet in collaboration with healthcare providers.

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The target population for the booklet is parents of school-aged children with hemophilia. “The reasoning behind this decision was that it is generally at school age that children begin to compare themselves and want to move and play in the same way as their friends,” the authors wrote.

The team identified two groups of parents whose children were being treated at the Hematology Clinic of Sainte-Justine University Hospital: parents of school-age children 5-7 years and 8-9 years of age. A total of 11 parents (8 mothers and 3 fathers) were included in the study (5-7 years-old group, 60% and 8-9 years-old group, 40%).

Each parent reviewed the booklet and completed the questionnaire before attending the focus groups. On 0-5 scale with a neutral point of 2.5, the parents generally agreed that the booklet was clear (mean, 4.59; range, 3.50-5.00) and well structured (mean, 4.45; range, 3.00-5.00), and the advice was useful or easy to use (mean, 4.18; range, 3.50-5.00).

In the focus groups, parents expressed the need for better support and information on the issues related to physical activity and that they needed a booklet that would be reassuring and would normalize their emotions. They also shared themes that they felt were missing from the booklet, such as how to encourage children to be physically active and how to valorize children.

“Parents were also particularly interested in concrete and specific information, such as the importance of silently listening to their child instead of rushing to solutions,” the authors wrote. “They also wanted more parenting tips such as ideas of questions to ask their child to better understand their perception of the illness and its impact on their life.”

Limitation of the study included the single-center design, as intervention methods and the recommendations may differ between treatment centers; and access to prophylaxis may be limited in regions without a public healthcare insurance system, limiting generalizability.

“The study’s output is a booklet whose implementation could be studied in the hematology clinic. It is also ready to be adapted to other hemophilia treatment centers,” the authors wrote.


Bérubé S, Ogez D, Aramideh J, et al. It’s difficult to say no: Development of a parenting booklet about physical activity restrictions and recommendations in pediatric hemophilia. Health Psychol Open. 2021;8(2):20551029211039920. doi:10.1177/20551029211039920