慢性单纯性疾病的经验:一项定性访谈研究。

IF 3.4 2区 医学 Q2 GENETICS & HEREDITY
Marco Richard Zugaj, Claudia Busch, Andrea Züger, Jens Keßler
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引用次数: 0

摘要

背景:慢性singultus持续一个月以上是一种罕见的疾病。由于其发病率低,很难获得证据。慢性病患者的生活质量受到相当大的限制。慢性打嗝会导致失眠、厌食症、疲劳、疲惫、体重减轻和抑郁等问题。本研究的目的是为了更好地了解慢性singultus患者的生活质量,以及他们与医疗保健系统和一般人群接触的经历。方法:采用半结构化访谈法收集资料。数据分析采用Kuckartz和Rädiker的定性结构化内容分析。通过考虑不同观点的专家对访谈进行联合跨专业评估,确保了可靠性。结果:对20例慢性singultus患者的访谈进行分析。分析产生了43个类别,可分配给5个主要主题。患者疾病负担高。除了伴随的胃肠病症状、呼吸短促和疲劳等生理症状外,羞耻、社交退缩、焦虑、抑郁甚至自杀等心理社会后果也会导致生活质量下降。结论:医疗保健利益相关者对慢性singultus的无知和无助可能导致疾病和患者的边缘化。将患者转介到具有适当专业知识的中心可以帮助避免医疗保健使用不足、过度使用或误用。因此,必须提高利益攸关方对这种疾病的认识。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experience of illness with chronic singultus: a qualitative interview study.

Background: Chronic singultus lasting longer than one month is a rare disease. Due to its low prevalence, generating evidence about it is difficult. Patients with chronic diseases struggle with considerable restrictions in their quality of life. Chronic hiccups can lead to problems such as insomnia, anorexia, fatigue, exhaustion, weight loss, and depression. The aim of this study was to gain a better understanding of the quality of life of patients with chronic singultus and their experiences in contact with the healthcare system and with the general population.

Methods: The data were collected using semi-structured interviews. The data analysis was carried out using qualitative structuring content analysis according to Kuckartz and Rädiker. Reliability was ensured by joint interprofessional evaluation of the interviews by experts, considering different perspectives.

Results: Interviews from 20 patients with chronic singultus were analyzed. Analysis yielded 43 categories that could be assigned to five main topics. The disease burden of the patients was high. In addition to physical symptoms such as concomitant gastroenterological symptoms, shortness of breath, and fatigue, psychosocial consequences such as shame, social withdrawal, anxiety, depression, and even suicidality led to reduced quality of life.

Conclusions: Ignorance and helplessness among healthcare stakeholders in the case of chronic singultus could lead to a marginalization of the disease and patients. Referring patients to a center with the appropriate expertise can help to avoid underuse, overuse, or misuse of healthcare. Therefore, the awareness of the disease among stakeholders must raise.

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来源期刊
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases 医学-医学:研究与实验
CiteScore
6.30
自引率
8.10%
发文量
418
审稿时长
4-8 weeks
期刊介绍: Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.
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