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从多发性硬化症患者的角度体验由非专业人员主导的慢性病自我管理计划。

The experience of attending a lay-led, chronic disease self-management programme from the perspective of participants with multiple sclerosis.

机构信息

Coventry University, Coventry, CV1 5FB, United Kingdom.

出版信息

Psychol Health. 2009 Dec;24(10):1167-80. doi: 10.1080/08870440802040277.

DOI:10.1080/08870440802040277
PMID:20204986
Abstract

A lay-led, community-based intervention, the Chronic Disease Self-Management Course (CDSMC) is effective for a range of long-term health conditions (e.g. arthritis, heart disease). However, the perceived value and experience of the CDSMC for people with Multiple Sclerosis (MS) has not been examined. The present qualitative study addressed this omission. Ten participants with MS (7 female; age range 35 to 60 years; disease duration 4 to 19 years) were interviewed before attending the CDSMC and at 4-month follow-up. Data were analysed using Framework Analysis. Some participants learned new self-management techniques and reported enhanced confidence (self-efficacy), whereas other participants were already confident in their self-management ability and found the CDSMC acted as a reminder of techniques previously used. Relaxation, pacing, and goal setting were particularly valuable for managing fatigue. Goal setting helped some participants to build confidence. Participants valued meeting similar others including those with different conditions. The CDSMC was an opportunity for social comparison and inspirational role modelling. Improvements to the CDSMC were suggested, including the addition of specific MS information. Overall, the CDSMC was viewed as a valuable source of new skills and a reminder of previously learned self-management skills, particularly in the context of managing fatigue. Gender differences emerged.

摘要

一项由非专业人员主导的基于社区的干预措施,即慢性病自我管理课程(CDSMC),对于一系列长期健康状况(如关节炎、心脏病)都具有显著效果。然而,多发性硬化症(MS)患者对 CDSM 课程的感知价值和体验尚未得到检验。本研究旨在弥补这一空白。10 名 MS 患者(7 名女性;年龄范围 35 至 60 岁;疾病持续时间 4 至 19 年)在参加 CDSM 课程之前和 4 个月随访时接受了访谈。使用框架分析对数据进行了分析。一些参与者学习了新的自我管理技巧,并报告说增强了信心(自我效能感),而其他参与者对自己的自我管理能力已经很有信心,发现 CDSM 课程只是提醒他们想起以前使用过的技巧。放松、调整节奏和设定目标对于管理疲劳特别有价值。设定目标有助于一些参与者建立信心。参与者重视与类似的其他人(包括患有不同疾病的人)会面。CDSMC 课程为社会比较和鼓舞人心的榜样提供了机会。参与者建议对 CDSM 课程进行改进,包括增加特定的 MS 信息。总体而言,CDSMC 被视为一种宝贵的技能来源,也是对以前所学自我管理技能的提醒,特别是在管理疲劳方面。研究还发现了性别差异。

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