Suppr超能文献

慢性吞咽困难成人的日常挑战与资源:一项定性研究。

Daily Challenges and Resources of Adults with Chronic Dysphagia: A Qualitative Investigation.

作者信息

Ninfa Aurora, Morandi Giulia, Schindler Antonio, Delle Fave Antonella

机构信息

Department of Pathophysiology and Transplantation, University of Milan, Milan, Italy.

Department of Biomedical Sciences, University of Milan, Milan, Italy.

出版信息

Dysphagia. 2025 Jun;40(3):637-649. doi: 10.1007/s00455-024-10764-5. Epub 2024 Oct 8.

Abstract

Identifying and addressing daily challenges and resources associated with chronic oropharyngeal dysphagia (OD) is a pivotal, though still neglected component of person-centred care, yet overlooked in research studies. To investigate these dimensions, 25 Italian adults with chronic OD due to cancer or neurodegenerative diseases participated in semi-structured interviews, designed following a modified framework analysis approach. Two researchers independently transcribed and coded interviews, elaborated a working analytical framework, indexed and charted the data, solving discrepancies through negotiated agreement and discussion with a third researcher. Proportion agreement on extracted quotations was calculated. Overall, 457 quotations were extracted from the interviews (88% agreement). Daily challenges pertained to physical, practical, and social domains; most participants reported OD-related problems; almost half mentioned care needs and obstacles in using healthcare services. Concerning resources in OD management, most participants referred to problem-focused and meaning-focused coping strategies, personal capabilities, and support from family and healthcare services. Finally, almost half of the participants reported OD-related changes in life view and meaning. Findings suggest that adjusting to OD implies challenges and resource mobilization in different life domains. Future studies should longitudinally elucidate the dynamics of positive adjustment, to promote patient-centred OD care based on individually perceived needs and challenges, and to inform healthcare policies.

摘要

识别并应对与慢性口咽吞咽困难(OD)相关的日常挑战和资源,是以人为本的护理中关键但仍被忽视的部分,在研究中也常被忽略。为了探究这些方面,25名因癌症或神经退行性疾病导致慢性OD的意大利成年人参与了半结构化访谈,访谈依据改良的框架分析方法设计。两名研究人员独立转录并编码访谈内容,精心构建了一个工作分析框架,对数据进行索引和图表制作,并通过协商一致以及与第三名研究人员讨论来解决分歧。计算了所提取引语的比例一致性。总体而言,从访谈中提取了457条引语(一致性为88%)。日常挑战涉及身体、实际和社会领域;大多数参与者报告了与OD相关的问题;近一半的人提到了护理需求以及使用医疗服务时的障碍。关于OD管理中的资源,大多数参与者提到了以问题为导向和以意义为导向的应对策略、个人能力以及来自家庭和医疗服务的支持。最后,近一半的参与者报告了与OD相关的人生观和意义变化。研究结果表明,适应OD意味着在不同生活领域面临挑战并调动资源。未来的研究应纵向阐明积极调整的动态过程,以促进基于个体感知需求和挑战的以患者为中心的OD护理,并为医疗政策提供参考。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ca53/12145295/4d1ed628166f/455_2024_10764_Fig1_HTML.jpg

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验