The Acceptability and Feasibility of ACT informed self-help for FND V1
Research type
Research Study
Full title
Development of an Acceptance and Commitment Therapy informed self-help intervention for Functional Neurological Disorder: An acceptability and feasibility study.
IRAS ID
338328
Contact name
Cordelia Gray
Contact email
Sponsor organisation
The
Clinicaltrials.gov Identifier
STH23017, Sheffield Teaching Hospital R&D
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Research Summary:
Functional Neurological Disorder (FND) is an often disabling condition in which neurological symptoms such as seizure or weakness occur in the absence of damage in the nervous system, but often in a context of previous trauma or ongoing life stress. Acceptance and Commitment Therapy (ACT), is a form of psychological treatment which has been shown to be helpful for patients with a range of neurological problems and has been used as a basis for self-help treatments previously. This study seeks to develop and assess initial acceptability and feasibility for an ACT-based self-help guide for individuals with Functional Neurological Disorder (FND). The study consists of two phases:Phase one:
A draft of the guide will be discussed with experts by experience (i.e. individuals with personal experience of FND) who have previously engaged in psychological therapy to determine the acceptability of the content, functionality, and medium of delivery. This will allow for feedback and initial revisions to be made.Phase two:
The guide will then be offered to individuals on a waiting list for one-to-one outpatient psychotherapy relating to their FND (the wait for psychotherapy currently exceeds one year). This shall be used to further explore the acceptability and feasibility of this self-help intervention within a clinical context.Lay summary of study results:
Development of an Acceptance and Commitment Therapy informed self-help intervention for Functional Neurological Disorder: An exploration of acceptability and feasibility.We developed and completed some first tests of a new self-help guide for people living with Functional Neurological Disorder (FND). The guide (‘Finding a way forward with FND’) is based on a type of therapy called Acceptance and Commitment Therapy (ACT), which aims to help people improve their quality of life. The aim of this research was to see whether the guide was helpful, easy to use, and something people would want to engage with.
What We Did
The project had two parts:
Phase One involved interviews with eight people with FND in the UK who had previously received psychological therapy. We asked for their feedback on an early version of the guide to help us improve it.
Phase Two involved offering the revised guide to people with FND currently on a waiting list for psychotherapy in the NHS. We asked them to complete short questionnaires before receiving the guide, then 4 weeks and 8 weeks after using the guide to understand how acceptable they found it.What We Found
Participants in Phase One said the guide was clear, friendly, and helpful. Some felt it gave them the kind of support they had not received when they were first diagnosed. The guide was described as practical and non-blaming, and people especially liked the case vignettes and exercises included.
In Phase Two, 10 of 14 people who started using the guide completed it and reported it was acceptable. However, many people who were invited to take part chose not to (38 of 54 first approached). This tells us that, while the guide can be useful for those who want it, it may not be suitable for everyone.What This Means
This research shows that an ACT-based self-help guide may be a helpful and acceptable option for some people with FND, especially when other treatment options are limited. In the future, we hope to explore how this guide could be offered more widely to people with FND and how to tailor it to individual needs ( for example, by identifying who is most likely to find it acceptable and the reasons why).We are very grateful to everyone who took part in this study and to the organisations who supported the work.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
24/YH/0071
Date of REC Opinion
23 May 2024
REC opinion
Further Information Favourable Opinion