Qualitative systematic review on the lived experience of functional neurological disorder

Objectives Functional neurological disorder (FND) is a complex disorder, recently attracting much research into aetiology and treatment. However, there is limited research on the patient’s lived experience. This paper addresses this gap to ask: ‘What is the subjective life experience of adult patien...

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Main Authors: Loyola McLean, Andrea Szasz, Anthony Korner
Format: Article
Language:English
Published: BMJ Publishing Group 2025-01-01
Series:BMJ Neurology Open
Online Access:https://neurologyopen.bmj.com/content/7/1/e000694.full
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author Loyola McLean
Andrea Szasz
Anthony Korner
author_facet Loyola McLean
Andrea Szasz
Anthony Korner
author_sort Loyola McLean
collection DOAJ
description Objectives Functional neurological disorder (FND) is a complex disorder, recently attracting much research into aetiology and treatment. However, there is limited research on the patient’s lived experience. This paper addresses this gap to ask: ‘What is the subjective life experience of adult patients living with FND?’Methods From 1980 to 2020, Medline, PsycInfo, Scopus, Science Direct, PubMed, CINAHL and Embase were searched for English language qualitative adult research. The disciplines used general medicine, psychiatry, physiotherapy, nursing, neurology, psychosomatic medicine and occupational therapy. The qualitative literature search included book chapters, theses, fellowship reports and conference articles as well as peer-reviewed scientific journals.The Critical Appraisal Skills Programme tool was used to assess 33 papers, with eight papers included in the final synthesis. Nine additional papers, suggested during review, were evaluated but excluded from synthesis, though incorporated elsewhere in the paper. Two authors used an integrative immersion approach to identify the literature’s main themes using line-by-line and top-down methods.Results Eight main themes were identified: lost, body–mind dualism, preceding stressful events, relatedness, stigma, the battle or fight, the burden and losses of the illness and trust versus mistrust. From these emerged a central overarching theme of relationally regulated selves, which posits the essence of the lived experience of FND as responding to stressful experiences within a relational, regulatory context.Conclusions The prevalent themes give valuable insight into the lived experience of FND and the impact of stressors, past and present, and the relational environment in the development of and recovery from the disorder. Further research is needed to support the formulation of the patient experience and cocreated recovery pathways.
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spelling doaj-art-a8b310a6472643b99c0608e3dfe9be2e2025-01-20T08:15:16ZengBMJ Publishing GroupBMJ Neurology Open2632-61402025-01-017110.1136/bmjno-2024-000694Qualitative systematic review on the lived experience of functional neurological disorderLoyola McLean0Andrea Szasz1Anthony Korner22 Brain and Mind Centre and Westmead Psychotherapy Program for Complex Traumatic Disorders, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, AustraliaThe Brain and Mind Centre, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, AustraliaSpecialty of Psychiatry, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, AustraliaObjectives Functional neurological disorder (FND) is a complex disorder, recently attracting much research into aetiology and treatment. However, there is limited research on the patient’s lived experience. This paper addresses this gap to ask: ‘What is the subjective life experience of adult patients living with FND?’Methods From 1980 to 2020, Medline, PsycInfo, Scopus, Science Direct, PubMed, CINAHL and Embase were searched for English language qualitative adult research. The disciplines used general medicine, psychiatry, physiotherapy, nursing, neurology, psychosomatic medicine and occupational therapy. The qualitative literature search included book chapters, theses, fellowship reports and conference articles as well as peer-reviewed scientific journals.The Critical Appraisal Skills Programme tool was used to assess 33 papers, with eight papers included in the final synthesis. Nine additional papers, suggested during review, were evaluated but excluded from synthesis, though incorporated elsewhere in the paper. Two authors used an integrative immersion approach to identify the literature’s main themes using line-by-line and top-down methods.Results Eight main themes were identified: lost, body–mind dualism, preceding stressful events, relatedness, stigma, the battle or fight, the burden and losses of the illness and trust versus mistrust. From these emerged a central overarching theme of relationally regulated selves, which posits the essence of the lived experience of FND as responding to stressful experiences within a relational, regulatory context.Conclusions The prevalent themes give valuable insight into the lived experience of FND and the impact of stressors, past and present, and the relational environment in the development of and recovery from the disorder. Further research is needed to support the formulation of the patient experience and cocreated recovery pathways.https://neurologyopen.bmj.com/content/7/1/e000694.full
spellingShingle Loyola McLean
Andrea Szasz
Anthony Korner
Qualitative systematic review on the lived experience of functional neurological disorder
BMJ Neurology Open
title Qualitative systematic review on the lived experience of functional neurological disorder
title_full Qualitative systematic review on the lived experience of functional neurological disorder
title_fullStr Qualitative systematic review on the lived experience of functional neurological disorder
title_full_unstemmed Qualitative systematic review on the lived experience of functional neurological disorder
title_short Qualitative systematic review on the lived experience of functional neurological disorder
title_sort qualitative systematic review on the lived experience of functional neurological disorder
url https://neurologyopen.bmj.com/content/7/1/e000694.full
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AT andreaszasz qualitativesystematicreviewonthelivedexperienceoffunctionalneurologicaldisorder
AT anthonykorner qualitativesystematicreviewonthelivedexperienceoffunctionalneurologicaldisorder