An explanatory model of health service trajectories for people with functional neurological disorder: a co-produced qualitative study.

Abstract

People with functional neurological disorder (FND) report poor healthcare experiences. This study explored how people with FND experience health services, and how their experiences are shaped by personal agency, social structure, and socio-cultural narratives of FND. This qualitative narrative study was co-produced in partnership with people with lived experience of FND. Data from seventeen interviews were co-analysed using thematic narrative analysis. Findings show two divergent yet interconnected narrative patterns in participants' accounts. Commonly, participants described a stigmatised trajectory through health services, including experiences of denial, disbelief, stigma and discrimination. People with FND were not passive in the face of these experiences, but their ability to exercise personal agency was often undermined by illness. Less frequently participants experienced a supportive trajectory, where their agency was assisted by the agency and power of health professionals. However, supportive care could be undermined by a lack of health professional knowledge and healthcare resources. Findings highlight the agency of people with FND in shaping their healthcare trajectories and the role of health professionals in challenging stigma and discrimination. Health professional training, treatment guidelines, and funded care pathways are needed to ensure structured and equitable care for people with FND.