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Abstract
Purpose Functional neurological disorders are common, highly stigmatised and associated with significant disability. A systematic review of the experiences of people with functional seizures described negative interactions with healthcare professionals and a significant burden of living with seizures. A synthesis of the views and experiences of healthcare professionals working with people with FND found that many felt unsure how to diagnose and treat FND and tended to avoid and pass patients on, leading to a ‘vicious cycle’ where patients receive poor care. To date the experiences of those with motor and/or sensory FND subtypes have not been explored systematically. This review aimed to synthesise qualitative research exploring the experiences of people living with motor and/or sensory FND including those with Persistent Postural Perceptual Dizziness and functional drop attacks. Identifying their needs should inform service development, education for healthcare professionals and generate future research questions.
Method The review was pre-registered on PROSPERO. Five databases were systematically searched (Medline, PsychInfo, Web of Science, Embase and Cinahl) in November 2022, updated in June 2023 as well as forward and back citation searching and consulting relevant experts. 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 using both text-based and illustrative collaborations with co-authors with lived experience of FND.
Results 12 papers were included in the synthesis describing the views of 156 people with FND. The analytic themes represented an interaction between body and mind, in relation with self, healthcare professionals and wider society. The overarching theme was uncertainty; about what caused FND and how to live with it. Uncertainty was underpinned by four analytic themes; 1) Navigating challenging healthcare interactions: a long journey from dismissal to diagnosis, 2) Loss of power and control (and how to regain it), 3) Who or what is responsible and 4) Living with a visible disability and an invisible illness. These were represented pictorially in the attached figure.
Conclusions People with motor and/or sensory functional disorders experience significant disability, stigma, self-blame and functional impairment. Early and clear diagnosis, validation and practical 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.