Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
Haemophilia. 2014 Jan;20(1):1-8. doi: 10.1111/hae.12223. Epub 2013 Jun 28.
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 haemophilia need help to manage transitions while dealing with the complications of their disorder. The National Haemophilia Foundation (NHF), headquartered in New York City, has an extensive information centre on bleeding disorders, but it was not clear how much material existed on the topic of transition. The objectives of this project were to (i) assess the availability of literature about transition for children and adolescents living with haemophilia, (ii) determine which transition issues were the most relevant and (iii) develop and test information products that would address those transition issues. 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. The literature search yielded limited information available on transition for children and adolescents with haemophilia. 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. Children and adolescents living with haemophilia 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.
从一个生活阶段过渡到下一个阶段可能很困难，但对于那些患有慢性疾病的人来说，这可能更加具有挑战性。患有血友病的儿童和青少年在处理疾病并发症的同时，还需要帮助来管理过渡阶段。总部位于纽约市的国家血友病基金会（NHF）拥有一个关于出血性疾病的广泛信息中心，但不清楚关于过渡阶段的主题有多少材料存在。该项目的目标是：(i)评估有关患有血友病的儿童和青少年过渡阶段的文献可用性，(ii)确定哪些过渡问题最相关，以及 (iii)制定和测试解决这些过渡问题的信息产品。对 NHF 的资源进行了清查，并在互联网上进行了环境扫描。进行了焦点小组讨论以确定信息传递内容。创建了包含信息传递内容的视频原型，通过焦点小组进行了测试并进行了修订。文献检索仅提供了有关患有血友病的儿童和青少年过渡阶段的有限信息。形成性研究的结果表明，青少年希望获得更多关于运动参与和披露其病情（例如向同龄人、老师、教练、医疗保健提供者）的信息。研究发现视频是首选的传递格式。患有血友病的儿童和青少年需要信息来帮助他们过渡到成年生活。由于这项研究，制作了两个教育产品，但建议制作更多产品来指导这些人健康地过渡到成年期。
