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首页> 外文期刊>Journal of nursing and healthcare of chronic illness >Learning to live with hereditary haemochromatosis: a qualitative descriptive study
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Learning to live with hereditary haemochromatosis: a qualitative descriptive study

机译：学习与遗传性血色素沉着病生活：定性的描述性研究

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Learning to live with hereditary haemochromatosis: a qualitative descriptive study Aim. This article will report on a study which was conducted to explore the experiences of individuals living with hereditary haemochromatosis (HH). Background. Hereditary haemochromatosis is the most common genetic disorder affecting the Caucasian race. It causes excessive intestinal iron absorption resulting in organ damage and impaired function. Little is known about the experience, needs or expertise of those living with this disorder. Methods. A qualitative descriptive approach was used to conduct the study. Purposive sampling was employed to recruit 12 participants attending a haematology clinic in a large teaching hospital in Ireland. Data were collected between February and April 2008 using in-depth interviews and were analysed using content analysis. Results. Three main themes emerged from the data: 'finding out', 'sluggish lethargy' and 'facing challenges'. These themes describe how participants reacted to the diagnosis, experienced the symptoms and met the challenges of coping with the treatment of this disorder. Conclusions. Increased awareness of the challenges experienced by those living with HH can inform the delivery of an effective patient-centered service to individuals diagnosed and living with this genetic illness. Relevance to clinical practice. The knowledge elicited from patients about their experiences of living with HH can be used to inform healthcare professionals about the support and education required to live with this disorder.
机译：学习遗传性血色素沉着病的生活：定性的描述性研究目的。本文将报告一项研究，以探索遗传性血色素沉着病（HH）患者的经历。背景。遗传性血色素沉着病是影响白种人的最常见的遗传疾病。它会引起肠内铁的过度吸收，从而导致器官损伤和功能受损。对于患有这种疾病的人的经验，需求或专业知识知之甚少。方法。定性描述方法用于进行研究。目的抽样被用来招募12名参加爱尔兰一家大型教学医院血液病诊所的参与者。使用深度访谈收集了2008年2月至2008年4月之间的数据，并使用内容分析进行了分析。结果。数据显示出三个主要主题：“发现”，“呆滞嗜睡”和“面对挑战”。这些主题描述了参与者对诊断的反应，经历的症状以及如何应对这种疾病的挑战。结论。对HH感染者所面临挑战的认识的提高，可以为诊断和患有这种遗传病的个体提供有效的以患者为中心的服务。与临床实践有关。从患者那里获得的有关他们与HH的生活经历的知识可用于告知医疗保健专业人员有关该疾病的生存所需要的支持和教育。

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