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多发性硬化症患者及其家属的期望:伊朗的一项定性研究。

Expectations of multiple sclerosis patients and their families: a qualitative study in iran.

作者信息

Abolhassani Shahla, Yazdannik Ahmadreza, Taleghani Fariba, Zamani Ahmadreza

机构信息

Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, IR Iran.

Critical Care Nursing Department, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, IR Iran.

出版信息

Iran Red Crescent Med J. 2015 Feb 1;17(2):e18293. doi: 10.5812/ircmj.18293. eCollection 2015 Feb.

Abstract

BACKGROUND

Multiple Sclerosis (MS) is a neurological disease that is most commonly observed among young people. Drug and non-drug treatments are used to prevent the progression of the disease and to control illness-related disorders. Patients with MS often have multiple and complicated needs that require a broad spectrum of health services.

OBJECTIVES

This study was conducted to identify the expectations of individuals with MS and their families for healthcare services.

PATIENTS AND METHODS

This article is part of a qualitative case study. The participants were selected by a purposive sampling method. In this study, semi-structured interviews of 20 individuals with MS and 8 family members were conducted to identify the expectations of MS patients and their families. In addition to the interviews, the documents related to the aim of the study, including weblogs, MS magazines, special websites of individuals with MS, and news agencies were gathered. Analysis of data was performed by a conventional content analysis method.

RESULTS

The age of the participants ranged from 22-63 years. The data obtained from this study was classified into 5 main categories as follows: being cured, need for comfort, promoting knowledge, economic welfare, and social security.

CONCLUSIONS

Individuals with MS and their families had different expectations pertaining to all dimensions of life, such that not meeting the needs related to any dimension could have affect the other dimensions. Therefore, it is necessary for healthcare providers to have a holistic assessment as well as try to meet all needs and expectations.

摘要

背景

多发性硬化症(MS)是一种最常见于年轻人的神经系统疾病。药物和非药物治疗用于预防疾病进展并控制与疾病相关的紊乱。MS患者通常有多种复杂需求,需要广泛的医疗服务。

目的

本研究旨在确定MS患者及其家属对医疗服务的期望。

患者与方法

本文是一项定性案例研究的一部分。参与者通过目的抽样法选取。在本研究中,对20名MS患者和8名家属进行了半结构化访谈,以确定MS患者及其家属的期望。除访谈外,还收集了与研究目的相关的文件,包括博客、MS杂志、MS患者个人的特殊网站以及新闻机构的资料。采用常规内容分析法进行数据分析。

结果

参与者年龄在22至63岁之间。本研究获得的数据分为以下5个主要类别:治愈、舒适需求、知识提升、经济福利和社会保障。

结论

MS患者及其家属在生活的各个方面都有不同的期望,以至于任何一个方面的需求未得到满足都可能影响其他方面。因此,医疗服务提供者有必要进行全面评估,并努力满足所有需求和期望。

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