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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis
Author(s): Glennie, Nicola
Harris, Fiona M
France, Emma F
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Keywords: Rehabilitation
Motor Neurone Disease
Amyotrophic lateral sclerosis
quality of life
patient experience
Issue Date: 1-Aug-2022
Date Deposited: 3-Oct-2022
Citation: Glennie N, Harris FM & France EF (2022) Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis. Disability and Rehabilitation.
Abstract: Purpose: 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 main tain control in their daily lives? Methods: 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. Results: 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. Conclusion: 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.
DOI Link: 10.1080/09638288.2022.2104942
Rights: © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Notes: Output Status: Forthcoming/Available Online
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