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

Journal: Disability and rehabilitation

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Affiliated Institutions:  Neuropsychiatry Research and Education Group, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK. Liverpool Brain Lab, University of Liverpool, Liverpool, UK. FND Portal, Canada. Lishman Unit (Brain Injury and Functional Neurology), South London and Maudsley NHS Foundation Trust, Bethlem Royal Hospital, Beckenham, UK. Neuropsychiatry Service, South West London & St. George's Mental Health Trust, St. George's Hospital, London, UK.

Abstract summary 

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.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.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.

Authors & Co-authors:  Bailey Tamasauskas Bradley-Westguard Gilli Poole Edwards Agrawal Nicholson

Study Outcome 

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Statistics
Citations : 
Authors :  8
Identifiers
Doi : 10.1080/09638288.2024.2333491
SSN : 1464-5165
Study Population
Male,Female
Mesh Terms
Other Terms
Functional neurological disorder;lived experience;qualitative synthesis;stigma;systematic review
Study Design
Study Approach
Qualitative
Country of Study
Publication Country
England