影响多发性硬化症患者生活质量的促进和抑制因素:一项定性研究

A. Homayuni
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摘要

简介:多发性硬化症(MS)是一种与中枢神经系统相关的慢性进行性疾病,影响患者的生活质量。几个因素在这些患者的生活质量中起促进和抑制作用。本研究旨在解释影响MS患者生活质量的促进因素和抑制因素。方法:本研究采用常规的含量分析法。通过有目的抽样和半结构化访谈,选取了18例参考伊斯法罕MS协会的MS患者。继续收集数据,直到达到数据饱和。数据管理采用MAXQDA-10软件。结果:通过访谈内容分析,确定了4个主要类别和15个小类别。主要类别包括个人促进因素(闲暇时间和应对策略)、人际促进因素(运动治疗、社会支持和社会组织)、人际抑制因素(身体问题、心理障碍、不确定未来、功能限制、失业和贫困)和环境抑制因素(疾病和治疗过程、照顾者疲劳、MS信息不足、家庭紧张关系、娱乐和娱乐)。结论:根据目前的研究结果,通过为患者及其护理人员提供教育和心理服务,适当的保险覆盖范围,易于获得药物,特别是国外药物的合理关税,社会和财政支持等措施,提高社会对该疾病的认识,形成适当的城市肌理,有助于改善MS患者的生活质量。
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Facilitating and Inhibiting Factors regarding Quality of Life in Patients with Multiple Sclerosis: A Qualitative Study
Introduction: Multiple sclerosis (MS) is a chronic progressive disease related to the central nervous system, which affects the patients' quality of life. Several factors play the roles of facilitators and inhibitors concerning the life quality of these patients. This study aims to explain the facilitating and inhibiting factors with regard to the life quality of MS patients.   Methods: The present study was conducted through a conventional content analysis approach. Through purposive sampling and semi-structured interviews, 18 MS patients referring to the Isfahan MS Association were selected. Data collection continued until data saturation was reached. For data management, MAXQDA-10 software was used.  Results: Through content analysis of the interviews, 4 main categories and 15 sub-categories were identified. The main categories included personal facilitators (leisure time and coping strategies), interpersonal facilitators (exercise therapy, social support and social organizations), interpersonal inhibitors (physical problems, psychological disorders, uncertain future, functional limitations, losing job and poverty) ,and environmental inhibitors (disease and treatment process, caregivers' fatigue, insufficient information about MS, family tensions, and fun and entertainment). Conclusion: According to the results of the current research, by taking measures such as providing educational and psychological services for patients and their caregivers, appropriate insurance coverage, easy access to drugs, especially foreign ones with reasonable tariffs, social and financial support, raising the society's awareness regarding this disease and developing an appropriate urban texture can help to improve the quality of life in MS patients.
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