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

IF 2.2 3区医学 Q1 OTORHINOLARYNGOLOGY

Dysphagia Pub Date : 2024-10-08 DOI:10.1007/s00455-024-10764-5

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

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引用次数: 0

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.

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慢性吞咽困难成人的日常挑战和资源：一项定性调查。

识别和解决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一个关键的组成部分，但在研究中却被忽视了。为了对这些方面进行研究，25 名因癌症或神经退行性疾病而患有慢性口咽吞咽困难的意大利成年人参加了半结构式访谈，访谈是按照修改后的框架分析方法设计的。两名研究人员独立对访谈内容进行誊写和编码，制定工作分析框架，为数据编制索引和图表，并通过与第三名研究人员的协商和讨论解决分歧。对摘录的引文的一致比例进行了计算。总体而言，从访谈中提取了 457 条引文（88% 的一致率）。日常挑战涉及身体、实践和社会领域；大多数参与者报告了与 OD 相关的问题；近一半的参与者提到了护理需求和使用医疗服务的障碍。关于管理 OD 的资源，大多数参与者提到了以问题为中心和以意义为中心的应对策略、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的改变。研究结果表明，适应 OD 意味着不同生活领域的挑战和资源调动。未来的研究应纵向阐明积极适应的动态变化，以便根据个人感知到的需求和挑战，促进以患者为中心的OD护理，并为医疗保健政策提供信息。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Dysphagia 医学-耳鼻喉科学

CiteScore

4.90

自引率

15.40%

发文量

149

审稿时长

6-12 weeks

期刊介绍： Dysphagia aims to serve as a voice for the benefit of the patient. The journal is devoted exclusively to swallowing and its disorders. The purpose of the journal is to provide a source of information to the flourishing dysphagia community. Over the past years, the field of dysphagia has grown rapidly, and the community of dysphagia researchers have galvanized with ambition to represent dysphagia patients. In addition to covering a myriad of disciplines in medicine and speech pathology, the following topics are also covered, but are not limited to: bio-engineering, deglutition, esophageal motility, immunology, and neuro-gastroenterology. The journal aims to foster a growing need for further dysphagia investigation, to disseminate knowledge through research, and to stimulate communication among interested professionals. The journal publishes original papers, technical and instrumental notes, letters to the editor, and review articles.