McMaster University, Department of Medicine, Hamilton, ON, Canada.
Haemophilia. 2013 Jul;19(4):503-10. doi: 10.1111/hae.12104. Epub 2013 Apr 1.
Haemophilia is a complex disease to manage. Home-based management of haemophilia has placed greater responsibility for disease management on individuals with haemophilia, heightening the individual's need for knowledge, particularly among individuals with severe haemophilia. The aim of this study was to identify and understand the knowledge needs and gaps of Canadian men with severe haemophilia from the perspectives of health care providers. A qualitative approach was undertaken. Data were collected using semi-structured focus groups and interviews with health care providers from Haemophilia Treatment Centres (HTCs) across Canada; data were analysed using thematic analysis. Three focus groups and two interviews were conducted; 13 individuals participated in this study. Health care providers identified the following areas of knowledge required by men with severe haemophilia: disease pathology, causes and consequences of bleeds, bleed prevention, recognition, treatment, how and when to access support, activity selection and risk reduction, benefits of exercise, genetic inheritance patterns, impact on career selection, travel and ageing. Knowledge gaps and challenges to knowledge provision were highlighted. In addition, providers emphasized the influences of timing, rapport and context on readiness to receive and assimilate information and recommended tailoring education to the individual and creating a developmental curriculum and knowledge assessment tool. Provision and uptake of disease knowledge is essential to patient self-management. To effectively receive, retain and assimilate information, individuals with severe haemophilia require the right information, from the right source, at the right time. Education should be tailored to the needs of the individual, provided throughout the lifespan.
血友病是一种难以管理的复杂疾病。血友病的家庭管理将疾病管理的更大责任放在了血友病患者身上，这增加了个人对知识的需求，尤其是在严重血友病患者中。本研究旨在从医疗保健提供者的角度确定和了解加拿大严重血友病男性的知识需求和差距。采用定性方法。从加拿大各地的血友病治疗中心（HTCs）收集了使用半结构化焦点小组和医疗保健提供者访谈的数据；使用主题分析进行数据分析。进行了三个焦点小组和两次访谈；共有 13 人参加了这项研究。医疗保健提供者确定了严重血友病男性所需的以下知识领域：疾病病理学、出血的原因和后果、出血预防、识别、治疗、如何以及何时获得支持、活动选择和降低风险、运动的益处、遗传遗传模式、对职业选择的影响、旅行和衰老。突出了知识差距和提供知识的挑战。此外，提供者强调了时机、融洽关系和背景对接收和吸收信息的准备的影响，并建议根据个人情况量身定制教育，创建发展课程和知识评估工具。提供和接受疾病知识对于患者的自我管理至关重要。为了有效接收、保留和吸收信息，严重血友病患者需要从正确的来源在正确的时间获得正确的信息。教育应根据个人需求提供，并贯穿整个生命周期。
