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

ABSTRACT

PURPOSE: 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. METHOD: 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. RESULTS AND CONCLUSIONS: 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.

A clear diagnosis and explanation of motor and/or sensory functional neurological disorder is validating and an important first step in recovery.People with motor and/or sensory functional neurological disorder experience significant disability, stigma, self-blame and functional impairment.Multidisciplinary care pathways for functional neurological disorder urgently need to be developed.There is a need for co-produced education and training for healthcare professionals which covers how to deliver diagnoses and personalised formulations, communicate concepts of applied neuroscience and challenges stigma and discrimination.