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受治疗的乳糜泻患者的疾病信念。

Illness beliefs among people living with treated coeliac disease.

机构信息

Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.

出版信息

Scand J Caring Sci. 2020 Jun;34(2):401-408. doi: 10.1111/scs.12741. Epub 2019 Jul 31.

Abstract

BACKGROUND

Evidence suggests that many people with coeliac disease (CD) suffer from continuing illness despite following a strict gluten-free diet. Beliefs affect how people experience and manage their residual symptoms. Illness beliefs therefore provide a useful framework for understanding these problems.

AIM

To explore illness beliefs among people living with treated coeliac disease.

METHODS

The design was qualitative descriptive with semi-structured interviews including 22 adults with coeliac disease. Data were analysed with qualitative content analysis. The study follows the ethical guidelines given in the Declaration of Helsinki and was approved by the local ethical committee (DN 2014/92-31).

FINDING

The source of experienced continuing illness, despite following a gluten-free diet, was believed to be a bodily imbalance affecting participants' lives in many ways, both private and in contact with the health services. Due to a feeling of exhaustion and lack of energy, this imbalance had prevented them from participating in school, work life and social activities. Since the participants had often been ill for many years before diagnosis, they believed their intestine to be so damaged that it was no longer possible to achieve a bodily balance.

CONCLUSIONS

Illness beliefs in people diagnosed and treated for CD showed that they explained various continuing conditions, physiological and/or psychological, by a bodily imbalance, originally caused by the CD. By uncovering these illness beliefs, the possibility of finding an adequate and facilitative strategy grows stronger.

摘要

背景

有证据表明,尽管许多乳糜泻(CD)患者遵循严格的无麸质饮食,但仍有持续的疾病症状。信念会影响人们对残余症状的体验和管理方式。因此,疾病信念为理解这些问题提供了一个有用的框架。

目的

探讨已接受治疗的乳糜泻患者的疾病信念。

方法

设计为定性描述性研究,采用半结构式访谈,共纳入 22 名乳糜泻患者。使用定性内容分析法对数据进行分析。本研究遵循《赫尔辛基宣言》中的伦理准则,并获得了当地伦理委员会的批准(DN 2014/92-31)。

结果

尽管遵循无麸质饮食,但仍经历持续疾病的原因被认为是一种身体失衡,这种失衡以多种方式影响着参与者的私人生活和与医疗保健服务的接触。由于疲惫和缺乏能量的感觉,这种失衡使他们无法参与学校、工作和社交活动。由于患者在确诊前通常已经患病多年,他们认为自己的肠道受损如此严重,以至于不可能恢复身体平衡。

结论

已确诊和治疗的 CD 患者的疾病信念表明,他们通过身体失衡来解释各种持续存在的身体和/或心理状况,这种失衡最初是由 CD 引起的。通过揭示这些疾病信念,找到一个适当且有益的策略的可能性就更大了。

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