Szasz Andrea, Korner Anthony, McLean Loyola
The Brain and Mind Centre, The University of Sydney Faculty of Medicine and Health, Sydney, New South Wales, Australia.
Specialty of Psychiatry, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
BMJ Neurol Open. 2025 Jan 19;7(1):e000694. doi: 10.1136/bmjno-2024-000694. eCollection 2025.
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?'
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.
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.
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.
功能性神经障碍（FND）是一种复杂的疾病，最近引发了对其病因和治疗的大量研究。然而，关于患者实际生活体验的研究有限。本文旨在填补这一空白，提出问题：“成年FND患者的主观生活体验是什么？”
在1980年至2020年期间，检索了Medline、PsycInfo、Scopus、Science Direct、PubMed、CINAHL和Embase等数据库，查找英文的成人定性研究。涉及的学科包括普通医学、精神病学、物理治疗、护理、神经病学、身心医学和职业治疗。定性文献检索包括书籍章节、论文、研究报告和会议文章以及同行评审的科学期刊。使用批判性评估技能计划工具对33篇论文进行评估，最终综合纳入8篇论文。在评审过程中建议的另外9篇论文也进行了评估，但被排除在综合分析之外，不过在论文的其他部分有所提及。两位作者采用综合沉浸式方法，通过逐行和自上而下的方法确定文献的主要主题。
确定了八个主要主题：迷失、身心二元论、先前的应激事件、人际关系、耻辱感、抗争或战斗、疾病的负担和损失以及信任与不信任。由此产生了一个核心的总体主题，即关系调节自我，该主题认为FND患者实际生活体验的本质是在关系调节的背景下应对应激经历。
这些普遍主题为FND患者的实际生活体验以及过去和现在的应激源和关系环境对该疾病发生和康复的影响提供了有价值的见解。需要进一步研究以支持制定患者体验和共同创造的康复途径。
