What are the experiences of people with motor and sensory functional neurological disorder? A systematic review and thematic synthesis of qualitative studies.

Bailey, Cate, Tamasauskas, Arnas ORCID: 0009-0002-0035-2973, Bradley-Westguard, Abigail, Gilli, Peter, Poole, Norman ORCID: 0000-0002-3187-6430, Edwards, Mark J, Agrawal, Niruj and Nicholson, Timothy (2024) What are the experiences of people with motor and sensory functional neurological disorder? A systematic review and thematic synthesis of qualitative studies. Disability and rehabilitation, ahead- (ahead-). pp. 1-15.

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Abstract

<h4>Purpose</h4>Functional neurological disorders are common, highly stigmatised and associated with significant disability. This review aimed to synthesise qualitative research exploring the experiences of people living with motor and/or sensory FND. Identifying their needs should inform service development, education for healthcare professionals and generate future research questions.<h4>Method</h4>Five databases were systematically searched (Medline, PsychInfo, Web of Science, Embase and Cinahl) in November 2022, updated in June 2023. Data from included papers was extracted by two authors and studies were critically appraised using the Critical Appraisal Skills Programme (CASP). Data was thematically analysed and synthesised.<h4>Results and conclusions</h4>12 papers were included in the synthesis describing the views of 156 people with FND. The overarching theme was uncertainty; about what caused FND and how to live with it. Uncertainty was underpinned by four analytic themes; challenging healthcare interactions, loss of power and control, who or what is responsible and living with a visible disability and an invisible illness. Early and clear diagnosis, validation and support for living with FND should form part of multidisciplinary care. Co-produced service development, research agendas and education for clinicians, patients and the public would reduce stigma and improve the experiences of people with FND.

Item Type:	Article
Uncontrolled Keywords:	Functional neurological disorder, lived experience, qualitative synthesis, stigma, systematic review
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	03 Apr 2024 14:22
Last Modified:	19 Apr 2024 13:30
DOI:	10.1080/09638288.2024.2333491
Open Access URL:	https://www.tandfonline.com/doi/full/10.1080/09638...
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3180044