Challenges and Care Recommendations of Persons with Functional Neurological Disorder and Care Partners: A Qualitative Study.

BACKGROUND

Functional neurological disorder (FND) remains inadequately included in policy and research in various healthcare settings, including Canada, where patient voices and lived experiences have yet to be systematically explored. Hence, the study aimed to analyze patients' and care partners' challenges with the healthcare system in Ontario, Canada, and their perspectives on how to improve FND care.

METHODS

This qualitative study explored the lived experiences of individuals with FND in Ontario, Canada, using a descriptive approach informed by patient journey mapping. Two focus groups were conducted with 11 patients and 2 care partners, and data were analyzed inductively using thematic analysis via NVivo. Ethical approval was obtained, and all participants provided informed consent.

RESULTS

Participants reported prolonged diagnostic delays (mean: 4.8 years), limited access to specialists and widespread lack of FND knowledge among healthcare providers. Three major challenges emerged: recurrently seeking care, searching for a diagnosis and accessing treatment - each marked by systemic gaps, stigma and emotional distress. Patients described being misdiagnosed, dismissed and forced to self-advocate, often relying on personal research to understand their condition. Treatment access was hindered by high costs, lack of public funding and limited availability of FND-informed services. Participants recommended improvements in education, integrated service programs, patient-led advocacy and sustainable funding to address these gaps.

CONCLUSION

This study highlights the urgent need for systemic reform in FND care, as patients and families face prolonged diagnostic delays, fragmented services and widespread stigma. Participant-driven recommendations are crucial for consideration by healthcare professionals and policymakers.