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多发性硬化症患者生活质量的障碍:一项定性研究。

Barriers to quality of life in patients with multiple sclerosis: a qualitative study.

机构信息

Health Education and Promotion, Social Determinants in Health Promotion Research Center, Hormozgan University of Medical Sciences, Bandar Abbas, Iran.

Student Research Committee, Hormozgan University of Medical Sciences, Bandar Abbas, Iran.

出版信息

BMC Neurol. 2022 May 13;22(1):174. doi: 10.1186/s12883-022-02700-7.

Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic progressive disease of the central nervous system that affects the patients' quality of life. This research was conducted with the aim of identifying the barriers of quality of life in patients with MS.

METHODS

This qualitative study was conducted through a conventional content analysis approach. We used the purposeful sampling with maximum diversity in terms of gender, age, education, marital status and employment. Data were collected through semi-structured interviews with 18 patients with multiple sclerosis referred to the MS Association of Isfahan. Interviews were conducted to the point of information saturation.

RESULTS

Through the content analysis of the interviews, we identified 2 main categories and 11 sub-categories. The main categories include intrapersonal problems (physical problems, psychological disorders, turbulent future, functional limitations, job loss and pennilessness), and environmental barriers (disease and treatment process, fatigue of caregivers, information deficiency about MS, family tensions, lack of social support and fun and entertainment).

CONCLUSIONS

In order to improve the quality of life in these patients, there is a need for attention and practical measures in the field of identified factors. By removing barriers such as providing educational and counseling services to the patients and their families, adapting the urban structure, providing financial support and adequate insurance coverage, the authorities can take measures to ensure patients' health and improve their quality of life.

摘要

背景

多发性硬化症(MS)是一种影响患者生活质量的中枢神经系统慢性进行性疾病。本研究旨在确定多发性硬化症患者生活质量的障碍。

方法

本定性研究采用常规内容分析法进行。我们采用了性别、年龄、教育程度、婚姻状况和就业方面最大多样性的目的抽样。通过对 18 名多发性硬化症患者进行半结构化访谈,收集了数据,这些患者均被转诊至伊斯法罕多发性硬化症协会。访谈进行到信息饱和为止。

结果

通过对访谈的内容分析,我们确定了 2 个主要类别和 11 个亚类别。主要类别包括个体内问题(身体问题、心理障碍、未来动荡、功能受限、失业和贫困)和环境障碍(疾病和治疗过程、照顾者疲劳、缺乏多发性硬化症信息、家庭紧张、缺乏社会支持和乐趣娱乐)。

结论

为了提高这些患者的生活质量,需要在已确定的因素领域关注并采取切实可行的措施。通过为患者及其家属提供教育和咨询服务、调整城市结构、提供经济支持和充足的保险覆盖等措施,当局可以采取措施确保患者的健康并提高他们的生活质量。

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