Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis.
Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis.
复制标题
运动神经元疾病患者对控制的看法和经验：系统回顾和主题综合。
DOI：
10.1080/09638288.2022.2104942
复制
发表时间：
2023
影响因子：
2.2
通讯作者：
Glennie N
中科院分区：
文献类型：
--
作者：
Glennie N
目的当前研究表明，运动神经元疾病 (plwMND) 患者普遍感到缺乏控制。本系统综述探讨并综合了以下方面的证据：(1) 哪些因素有助于 plwMND 的控制感 (2) plwMND 如何尝试在日常生活中保持控制？方法从开始到 2022 年 1 月，对报告定性和混合方法初步研究或对 plwMND 的控制感或体验进行综述的同行评审英文期刊文章进行了系统搜索，这些文章是在 CINAHL、MEDLINE、PsycINFO、 ASSIA、Embase 和 AMED。对符合条件的文章进行质量评估、数据提取和主题综合。结果纳入了来自 9 个国家的 20 篇出版物、19 项初步研究和一项综述，报告了 578 名年龄在 20 岁至 90 岁之间的参与者的观点。确定了两个关键的分析主题 (1) 诊断可能会导致先前持有的控制信念的破坏 (2) PLWMND 使用一系列控制策略来试图保持对生活的控制。结论这是第一次系统回顾和定性证据综合，揭示了 PLWMND 用于重新获得控制的策略，以及关于健康、命运、身份和身体控制的控制信念因诊断而显着改变。对康复的影响 PLWMND 的结果测量应考虑个人价值观和偏好以及客观的临床测量。plwMND 使用一系列控制策略，这些策略可能会随着时间的推移而改变和变化，因此医疗保健专业人员也可能需要随着时间的推移审查和调整治疗决策。在临床情况下应考虑医疗保健专业人员和 plwMND 的不同观点，以减少冲突的可能性。
PurposeCurrent research suggests that feeling a lack of control is common among people living with Motor Neurone Disease (plwMND). This systematic review explores and synthesises evidence about: (1) What factors contribute towards perceptions of control in plwMND (2) How do plwMND attempt to maintain control in their daily lives?MethodsA systematic search from inception to January 2022 for peer-reviewed journal articles in English reporting qualitative and mixed-method primary studies or reviews of plwMND’s perceptions or experiences of control was conducted on CINAHL, MEDLINE, PsycINFO, ASSIA, Embase and AMED. Eligible articles underwent quality appraisal, data extraction and a thematic synthesis was carried out.ResultsTwenty publications, 19 primary studies and one review, from nine countries, reporting the views of 578 participants aged from 20 to 90 years were included. Two key analytical themes were identified (1) diagnosis can lead to a disruption of previously held control beliefs (2) plwMND use a range of control strategies to attempt to retain control in their lives.ConclusionThis is the first systematic review and qualitative evidence synthesis to reveal the strategies plwMND use to regain control and that control beliefs about health, fate, identity and bodily control are significantly altered by the diagnosis.Implications for rehabilitationOutcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements.plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time.The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict.