患者和医疗保健专业人员对特发性肺纤维化护理之旅的看法：一项定性研究。
Patients' and healthcare professionals' perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study.
机构信息
Department of Chronic Diseases and Metabolism, Laboratory of Respiratory Diseases and Thoracic Surgery, KU Leuven, Leuven, Belgium.
Department of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 35 blok D-box 7001, 3000, Leuven, Belgium.
出版信息
BMC Pulm Med. 2021 Mar 18;21(1):93. doi: 10.1186/s12890-021-01431-8.
BACKGROUND
Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care. Consequently, it is crucial to establish integrated care processes, maximizing patient value and patients' individual needs. The aim of the study was to shed light on the care trajectory based on the perspectives of patients and healthcare professionals.
METHODS
The study was conducted at a tertiary Belgian IPF centre of excellence. We conducted individual interviews with patients and healthcare professionals, guided by the Chronic Care Model (CCM) as a framework for integrated care. Thematic analysis was used to underpin data analysis.
RESULTS
Experiences were gathered of nine patients with IPF (aged 57-83 years, of which the informal caregivers were present at five interviews) and nine professionals involved in the IPF care trajectory. Our findings identified pitfalls and suggestions for improvement covering all elements of the CCM, primarily at the level of the individual patient and the care team. We covered suggestions to improve the team-based care and pro-active follow-up of patients' needs. Self-management support was highlighted as an important area and we identified possibilities, but also challenges regarding the use of patient-reported outcomes and eHealth-tools. Furthermore, the importance of continuous training for professionals and the implementation of guidelines in routine care was pointed out. Also, participants mentioned an opportunity to collaborate with community-based organizations and raised challenges regarding the overall health system. Lastly, the pertaining lack of IPF awareness and the disease burden on patients and their caregivers were covered.
CONCLUSIONS
Our research team has initiated a project aiming to optimize the current care delivery practice for IPF patients at a Belgian centre of excellence. These results will inform the further optimisation of the care program and the development of feasible supportive interventions.
背景
特发性肺纤维化（IPF）严重影响患者的多个生活维度，并对医疗保健实践提供高质量护理提出挑战。因此，建立综合护理流程至关重要，以最大限度地提高患者价值和患者的个体需求。本研究的目的是从患者和医疗保健专业人员的角度阐明护理轨迹。
方法
该研究在比利时卓越的特发性肺纤维化中心进行。我们对患者和医疗保健专业人员进行了个体访谈，以慢性护理模型（CCM）为综合护理框架进行指导。采用主题分析对数据进行分析。
结果
我们收集了九名 IPF 患者（年龄 57-83 岁，其中五名访谈中有非正式照顾者）和九名参与 IPF 护理轨迹的专业人员的经验。我们的研究结果发现了所有 CCM 元素的缺陷和改进建议，主要是在个体患者和护理团队层面。我们涵盖了改善以团队为基础的护理和主动跟进患者需求的建议。自我管理支持被强调为一个重要领域，我们确定了使用患者报告结果和电子健康工具的可能性，但也存在挑战。此外，还指出了为专业人员提供持续培训和将指南纳入常规护理的重要性。还提到了与社区组织合作的机会，并提出了关于整个卫生系统的挑战。最后，提到了缺乏对 IPF 的认识以及疾病对患者及其护理人员的负担。
结论
我们的研究团队已经启动了一个项目，旨在优化比利时卓越中心 IPF 患者的当前护理提供实践。这些结果将为进一步优化护理计划和开发可行的支持性干预措施提供信息。
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