Postgraduate Researcher, NMHAP Research Unit, Faculty of Health Sciences and Sport, University of Stirling, Stirling, UK.
School of Health and Life Sciences, University of West of Scotland, Paisley, UK.
Disabil Rehabil. 2023 Aug;45(16):2554-2566. doi: 10.1080/09638288.2022.2104942. Epub 2022 Aug 1.
Current 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?
A 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.
Twenty 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.
This 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.
目前的研究表明，感到缺乏控制是肌萎缩侧索硬化症（plwMND）患者中普遍存在的现象。本系统综述旨在探讨和综合以下证据：（1）哪些因素导致 plwMND 患者对控制的感知；（2）plwMND 患者如何试图在日常生活中保持控制？
从 CINAHL、MEDLINE、PsycINFO、ASSIA、Embase 和 AMED 数据库中，对截至 2022 年 1 月发表的关于 plwMND 对控制的感知或体验的定性和混合方法的原始研究或综述的同行评审期刊文章进行了系统检索。对符合条件的文章进行了质量评估、数据提取，并进行了主题综合分析。
从 9 个国家的 20 篇出版物中，共包括 19 项原始研究和 1 项综述，涉及 578 名年龄在 20 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）诊断可能导致先前持有的控制信念发生中断；（2）plwMND 使用多种控制策略试图在其生活中保持控制。
这是第一项系统综述和定性证据综合，揭示了 plwMND 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发生显著改变。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，以减少潜在的冲突。
