Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'
Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'
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DOI：
10.1136/bmjoq-2017-000207
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发表时间：
2018-01-01
期刊：
影响因子：
1.4
通讯作者：
Swigris, Jeffrey J
中科院分区：
文献类型：
--
作者：
Ramadurai, Deepa;Corder, Stephanie;Swigris, Jeffrey J
背景技术背景：特发性肺纤维化（IPF）是一种进行性、不可治愈的肺部疾病，其侵入性症状剥夺了患者的生活质量。IPF患者依赖其护理人员提供支持和帮助，支持和帮助的数量根据患者的个体情况和疾病严重程度而有所不同。知识渊博和消息灵通的患者和护理人员最适合处理改变生活的条件，如IPF.METHODS：我们进行了两个小时的焦点小组与13名IPF患者和4名IPF患者的护理人员，以更好地了解他们的信息需求，并在什么样的格式，这样的信息应该delivered.RESULTS：患者讨论了挑战，创造IPF在他们的日常生活。他们希望获得关于尽管患有IPF但如何生活得更好的信息，关于他们如何保持活跃和旅行的实用信息，以及尽管患有危及生命的疾病（如IPF），他们如何保持生活质量的实用信息。护理人员希望了解IPF的一般信息，因为这将有助于他们了解患者正在经历的事情。他们还希望了解如何护理IPF患者的具体信息，即使在可能不需要身体护理的情况下（如在疾病的早期阶段）。患者和护理人员都需要从值得信赖的来源（包括参与其护理的医疗团队）获得有效的信息传递。他们认为口头和书面的信息有价值的，容易访问是critical.CONCLUSION：这项研究提供了宝贵的见解，IPF患者和他们的照顾者的信息需求。希望确定或创建这些信息的来源，并确保患者和护理人员能够获得这些信息，将改善IPF患者及其护理人员的健康状况。
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.METHODS: We conducted twohour-long focus groups with 13 patients with IPF and 4 caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered.RESULTS: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical.CONCLUSION: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.