FND Impact of Stigma

Title of Study: Exploring the Relationship Between Psychological Flexibility, the Psychological Impact of Stigma, and Health-Related Quality of Life in Individuals with Functional Neurological Disorder

Before you decide whether to participate, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please get in touch if there is anything that is not clear or if you would like more information; our contact details are at the end of this document.

There is a lot of evidence to suggest people with FND are at a greater risk of experiencing stigma. We want to explore the impact of self-stigma on health-related quality of life in people with FND. Self-stigma is when somebody internalises negative beliefs and attitudes expressed by others about them, even when these beliefs are inaccurate, unfair or harmful. Self-stigma has been examined in a range of other clinical groups, but research in FND is limited. 

We have developed a questionnaire to measure self-stigma in people with FND. It was created with people with FND, and researchers and clinicians working with this clinical group. The questions are based on people’s experiences and other questionnaires developed for other conditions. The wording of all questions has been shaped by people with lived and/or professional experience of FND to make sure they are clear, relevant and as sensitive as possible. 

We also want to explore what might help reduce the impact of self-stigma in FND. Psychological flexibility is the ability to stay present and behave in ways that are consistent with personal values, despite experiencing difficult thoughts or feelings. Increasing psychological flexibility can be an important aim in some psychological therapy such as Acceptance and Commitment Therapy (also known as ACT). 

We want to investigate the relationship between psychological flexibility, self-stigma and health-related quality of life in FND. 

You will be asked to complete an anonymous online questionnaire, which will take approximately 20 minutes.

·      Thoughts and feelings related to the psychological impact of stigma

·      Your quality of life

·      Your symptoms of FND

·      Your demographics

·      Psychological flexibility

·      Aged 18 or older

·      Diagnosed with Functional Neurological Disorder (e.g., by a healthcare professional). this will be self-reported i.e. we will not ask you to provide any formal proof of your diagnosis. 

·      Fluent in English

Taking part in this research is entirely voluntary. If you do not wish to take part, there will be no negative consequences.

If you decide to take part, you will be asked to sign a consent form before you begin the questionnaire. You may withdraw from the survey at any time before completing it. You can withdraw your data from the survey for up to two weeks after you have completed it. At the start of the survey, you will be asked to create a participant code (two digits and three letters). To withdraw your data, you can contact the lead researcher with this code.

The questionnaires ask about topics that may be upsetting. If any of the questions cause you distress, please see a list of services that you can contact at the end of this form. Alternatively, you can contact either member of the research team using the details below.

Your participation may help us to better understand how FND affects psychological wellbeing and quality of life. When you complete the questionnaire, you will have the chance to win either a £25 or £10 Amazon voucher. To enter, you will need to provide your email address.

Will my taking part in this project be kept confidential?

All the information that you provide will be kept strictly confidential. Your data will not be identified in any reports or publications.

Your data will be stored securely at the University of Sheffield on password-protected files, accessible only to members of the research team. Data will be anonymised as you will be assigned a participant number.

The results of this study will form part of a Clinical Psychology Doctoral thesis. We also aim to publish the results in an academic journal.

The email addresses of those individuals who receive a voucher will be kept for 6 years for auditing purposes. The email addresses for those who do not receive a voucher will be deleted after the prize draw.

What is the legal basis for processing my personal data? According to data protection legislation, we are required to inform you that the legal basis we are applying in order to process your personal data is that ‘processing is necessary for the performance of a task carried out in the public interest’ (Article 6(1)(e)). Further information can be found in the University’s Privacy Notice https://www.sheffield.ac.uk/govern/data protection/privacy/general

This study is being conducted by Hayley Goddard (Clinical Psychologist in Training), as part of the qualification towards becoming a Doctor of Clinical Psychology at the University of Sheffield. Hayley is being supervised by Dr Gregg Rawlings, who is also based at the University of Sheffield.

The University of Sheffield will act as the Data Controller for this study. This means that the University is responsible for looking after your information and using it properly. 

This project has been approved by the University of Sheffield ethical review board, which checks that research is safe and ethical to carry out.

If you would like to make a complaint about this project, please contact the lead researcher or their supervisor in the first instance. If you do not feel satisfied that your complaint has been dealt with appropriately, you can contact the Head of the School of Psychology, Dr Chris Martin. He can be contacted at the following address: School of Psychology, ICOSS Building, 219 Portobello, Broomhall, Sheffield S1 4DP and psy-hos@sheffield.ac.uk

UK based

Please contact your GP or NHS 111 for medical advice

Samaritans: 116 123

FND resources: https://fndhope.org/resources/

Online FND support groups: https://www.fndaction.org.uk/online-support-groups/

Name: Hayley Goddard 

Address: School of Psychology, ICOSS Building, 219 Portobello, Broomhall, Sheffield S1 4DP

Email: hgoddard1@sheffield.ac.uk

Name: Dr Gregg Rawlings

Address: School of Psychology, ICOSS Building, 219 Portobello, Broomhall, Sheffield S1 4DP

Email: gregg.rawlings@sheffield.ac.uk

Thank you very much for taking time to read about the project.