Experiences of people with FND
Research type
Research Study
Full title
Experiences, understanding and conceptual models in patients with functional neurological disorders (FND): a qualitative and quantitative study
IRAS ID
268233
Contact name
Timothy Nicholson
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Functional neurological disorders (FNDs) occur when a person develops symptoms (such as weakness, numbness, tremors or seizures) which are not caused by neurological disease but have distinct clinical features. Despite being common FNDs remain poorly understood, are associated with significant stigma and disability and patients often experience interactions with healthcare professionals as unhelpful. As in other conditions, the patient’s understanding will affect engagement and confidence in treatment.
South West London and St George’s (SWLSTG) Mental Health NHS Trust in conjunction with St George’s Hospital Functional Neurological Disorders Service offers a novel 2-hour education session for patients with FND and their family. This includes lectures from an experienced neurologist, neuropsychiatrist, psychologist, neuro-physiotherapist, and patient-expert.
The primary aim of this study is to explore the lived experience, understanding of the illness, engagement and needs of people with FND using qualitative and quantitative methods. A secondary aim is to investigate the experiences of people with FND who receive a novel multi-disciplinary education session.
Secure online questionnaires will be used to collect information on illness perceptions, functioning, quality of life, engagement and experiences of stigma before and after attendance at the education session. A subgroup of participants will be invited to share their thoughts aloud as they are completing the questionnaires to explore how the questions apply in FND. Focus groups will be held with participants who have attended the education sessions to explore their experiences. Lastly a small group of participants will be interviewed in-depth, to explore their experience of FND symptoms, how they make sense of their illness and what it is like to live with FND.
All interviews and focus groups will be recorded using Microsoft Teams, unless the COVID-19 situation allows face to face meetings. In this instance focus groups and interviews will be recorded using a secure digital dictaphone.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
21/EE/0224
Date of REC Opinion
12 Nov 2021
REC opinion
Further Information Favourable Opinion