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了解西班牙克罗恩病患者的生活经历:一种现象学方法。

Understanding life experiences of people affected by Crohn's disease in Spain. A phenomenological approach.

作者信息

García-Sanjuán Sofía, Lillo-Crespo Manuel, Richart-Martínez Miguel, Sanjuán Quiles Ángela

机构信息

Nursing Department, Health Sciences Faculty, University of Alicante, Alicante, Spain.

出版信息

Scand J Caring Sci. 2018 Mar;32(1):354-362. doi: 10.1111/scs.12469. Epub 2017 Sep 4.

Abstract

BACKGROUND AND OBJECTIVES

People affected by Crohn's disease must adapt their lives to their new chronic condition, and therefore, understanding such experience can be helpful in planning effective interventions for the affected ones. The aim of this study was to gain an insight into such experience and how they adapted in different areas of their lives, particularly in a family-centred culture such as the Spanish one.

METHOD

A descriptive phenomenological study was conducted through in-depth interviews to 19 people diagnosed of Crohn's disease in the province of Alicante (Spain). Once the interviews were transcribed, data were analysed using Colaizzi's seven-step method.

RESULTS

Five emergent themes were identified: self-protection against the unknown cause; self-training; learning to live with Crohn's disease; perceived losses associated to Crohn's disease; and relationship with others. The results portrayed a chronically ill patient who is unconscious about the chronicity and consequently must develop strategies to keep living a similar life like the one lived before.

CONCLUSIONS

This study revealed that people affected by Crohn's disease struggle with the fact of being a chronic patient with uncertainty about the illness and need to learn living with a chronic condition that limits their daily lives. Furthermore, the lack of Crohn's disease a professional in charge of these people's Cares such as the specific nursing role existing in other countries support in the Spanish Health System determines the loneliness those diagnosed experience to cope with the new situation.

摘要

背景与目的

克罗恩病患者必须使自己的生活适应这种新的慢性病状况,因此,了解这种经历有助于为患者制定有效的干预措施。本研究的目的是深入了解这种经历以及他们在生活不同领域的适应方式,特别是在西班牙这样以家庭为中心的文化背景下。

方法

通过对西班牙阿利坎特省19名被诊断为克罗恩病的患者进行深入访谈,开展了一项描述性现象学研究。访谈转录完成后,使用科莱齐的七步法对数据进行分析。

结果

确定了五个新出现的主题:针对未知病因的自我保护;自我训练;学会与克罗恩病共处;与克罗恩病相关的感知到的损失;以及与他人的关系。结果描绘了一位慢性病患者,他并未意识到疾病的慢性性质,因此必须制定策略以维持与患病前相似的生活。

结论

本研究表明,克罗恩病患者因成为一名对病情不确定的慢性病患者而挣扎,并且需要学会与限制其日常生活的慢性病共处。此外,西班牙医疗系统中缺乏负责照顾这些患者的专业人员,如其他国家存在的特定护理角色,这决定了那些被诊断出患病的人在应对新情况时会感到孤独。

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