Identifying Information Needs Among Children and Teens Living With Hemophilia
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Identifying Information Needs Among Children and Teens Living With Hemophilia

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    Introduction Transitioning from one life stage to the next can be difficult, but for those living with a chronic condition, it can be even more challenging. Children and adolescents with hemophilia need help to manage transitions while dealing with the complications of their disorder. The National Hemophilia Foundation (NHF) headquartered in New York has an extensive information center on bleeding disorders, but it was unclear how much material existed on the topic of transition. Aim The objectives of this project were to (1) assess the availability of literature about transition for children and adolescents living with hemophilia, (2) determine which transition issues were the most relevant, and (3) develop and test information products that would address those transition issues. Methods An inventory of NHF’s resources and an environmental scan over the Internet was performed. Focus groups were conducted to determine messaging. Video prototypes containing messages were created, tested by focus groups, and revised. Results The literature search yielded limited information available on transition for children and adolescents with hemophilia. Results of the formative research indicated that adolescents wanted more information on sports participation and disclosure of their condition (e.g., to peers, teachers, coaches, health care providers). Video was found to be the preferred delivery format. Conclusion Children and adolescents living with hemophilia need information to help them transition through life. As a result of this study, two educational products were produced, but several more are recommended to guide these individuals in making healthy transitions into adulthood.
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