The Development of a Teaching Model for Patients with Hemophilia and their Families

Clements, M; Blumensteinbutler, Regina; Meredith, Karen L.

doi:10.3109/01460868409006344

Cited by 1 publication

(1 citation statement)

References 6 publications

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“…Families report that knowledge of the benefits of prophylactic treatment of hemophilia is a significant factor in promoting adherence (Hacker et al, 2001). The National Hemophilia Foundation (NHF) Nursing Committee developed educational standards for patients of HTCs and their families (Clements et al, 1984) that included the definition of hemophilia, hemophilia diagnostic processes, symptoms of hemophilia (particularly recognition of bleeding events), and treatment. Families who experienced education in these areas felt more confident about caring for their child with hemophilia, felt more in control of the child's condition, and felt more prepared for home care.…”

Section: Educationmentioning

confidence: 99%

Supporting the Development of Adherence and Self-Management in Pediatric Severe Hemophilia

Cartwright¹

2022

Clinical Practice in Pediatric Psychology

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Hemophilia is a complex medical condition in which home-based selfmanagement by children, adolescents, and their families is the standard of care. However, research on hemophilia self-management is limited. Because of its complexity and self-management standard, understanding the development of adherence and selfmanagement in hemophilia may provide insights into supporting pediatric patients and their families in managing complex health care needs that can be generalized and adapted for other conditions. Methods: A topical review and retrospective case report are provided to illustrate issues in the development of adherence and self-management, and to highlight clinical applications, for pediatric patients with severe hemophilia. Results: Individual, social, and contextual factors influence adherence in pediatric severe hemophilia. Interventions that support individual autonomy and competence, such as medical play and education, and social-contextual supports, such as communitybuilding and technological supports, have been shown to improve adherence and selfmanagement in pediatric severe hemophilia, particularly when tailored to patients' individual needs. Conclusions: Though the literature on adherence and self-management in pediatric severe hemophilia is limited, evidence of positive effects of adherence and self-management interventions is promising and could be applied to management of other complex conditions. Future work should examine emerging adults, and roles of health literacy, executive functioning, and pediatric psychologists in adherence and selfmanagement in pediatric severe hemophilia. Implications for Impact StatementPediatric severe hemophilia is a complex condition that is managed at home by children and families. Studying what works to promote the development of adherence and selfmanagement in such a complex condition can help families and providers understand how to manage and foster the development of adherence and self-management in patients with pediatric severe hemophilia and other complex health conditions.

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Section: Educationmentioning

confidence: 99%

Supporting the Development of Adherence and Self-Management in Pediatric Severe Hemophilia

Cartwright¹

2022

Clinical Practice in Pediatric Psychology

View full text Add to dashboard Cite

show abstract

The Development of a Teaching Model for Patients with Hemophilia and their Families

Cited by 1 publication

References 6 publications

Supporting the Development of Adherence and Self-Management in Pediatric Severe Hemophilia

Supporting the Development of Adherence and Self-Management in Pediatric Severe Hemophilia

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