Department of Endocrinology, The First Hospital of Lanzhou University, No. 11 Donggang west Road, Chengguan District, Lanzhou, 730000, China.
School of Nursing, Lanzhou University, No. 28, Yanxi Road, Chengguan District, Lanzhou, 730030, Gansu, China.
Sci Rep. 2024 Sep 18;14(1):21774. doi: 10.1038/s41598-024-72641-3.
The study explore the influencing factors and healthy self-management of MS patients with bereaved relatives after Wenchuan and Yushu Earthquake of their real life; explore difficulties and challenges in the process of self-management; and supply information that could not be sought in quantitative studies. Purposive sampling was used to recruit 36 MS patients who are bereavement population in two earthquakes, and those patients met the inclusion criteria for semi-structured focus group interview. The Nvivo11 software was used to collate and analyze the transcribed data. The main influencing factors of health self-management behavior for MS patients are as follows: the degree of understanding of disease prevention knowledge, emotion management induced by earthquake trauma, the source of disease-related information, access and identification are very limited; ethnic traditional culture, religious beliefs, and production activities and routines before and after the earthquake is an important factor in their healthy self-management behavior. The lack of health beliefs and self-efficacy of MS patients among bereaved families after Wenchuan and Yushu earthquake are key obstacle in their self-management. The overall level of the knowledge of patients' MS prevention, self-efficacy and self-management behaviors are still low. Some positive factors that can be changed including MS prevention knowledge, self-efficacy, social support, and family function. Some negative factors which can be improved afterwards, including negative coping style, traumatic life experiences from earthquake and smoking.
本研究旨在探索汶川和玉树地震后丧亲的多发性硬化症(MS)患者的影响因素和健康自我管理,探索自我管理过程中的困难和挑战,并提供定量研究无法获得的信息。采用目的抽样法招募了 36 名符合纳入标准的汶川和玉树地震丧亲多发性硬化症患者进行半结构式焦点小组访谈。使用 Nvivo11 软件对转录数据进行整理和分析。MS 患者健康自我管理行为的主要影响因素如下:对疾病预防知识的理解程度、地震创伤引起的情绪管理、疾病相关信息的来源、获取和识别非常有限;民族传统文化、宗教信仰以及震前和震后的生产活动和日常生活习惯是其健康自我管理行为的重要因素。汶川和玉树地震丧亲多发性硬化症患者缺乏健康信念和自我效能感是其自我管理的关键障碍。多发性硬化症患者的整体预防知识、自我效能感和自我管理行为水平仍然较低。一些可以改变的积极因素,包括多发性硬化症预防知识、自我效能感、社会支持和家庭功能。一些可以改善的消极因素,包括消极的应对方式、地震带来的创伤性生活经历和吸烟。