Thank you for your interest in this survey.
Functional Neurological Disorder (FND) is a common condition, yet our understanding of how people experience care within our healthcare system is largely anecdotal.
The purpose of this survey is to understand the healthcare usage, experiences and quality of life for people living with FND in Aotearoa New Zealand. Your responses will help identify gaps and inequities in care and will inform future improvements to health services for people with FND.
The survey is completely anonymous. You will be asked for your age band, your gender, the region you live and details about your current living arrangement and employment situation. You will not be asked for your name but at the end of the survey, you'll have the option to provide your email address. This will be stored separately from your survey responses, ensuring that your email cannot be linked to your answers. Because the survey is anonymous, once you submit your responses, it will not be possible to withdraw your data.
You will also be asked questions about your diagnosis, FND symptoms, medical conditions, your current quality of life and your use and experiences of healthcare. This survey combines several standardised health surveys that require selecting from pre-specified options, and there are optional sections where you can provide additional comments.
The survey is also completely voluntary, and you can stop answering questions at any time or skip questions you prefer not to answer. It takes approximately 30 minutes to complete. You can save your progress and return later if needed.
How will this information be used:
- All survey responses are anonymous and confidential
- Survey data will be stored securely on an encrypted online survey platform or the University of Auckland's server
- Study investigators will analyse the survey results
- A summary of findings will be shared with participants, and an academic article will be submitted to a relevant health journal for publication
- The data will also be used for a doctoral thesis for Mr Benjamin Scrivener
- You will be asked whether you agree to allow your anonymous survey data to be used in future ethically approved research projects. This means that your survey responses may be shared with other approved researchers for studies related to FND, neurological rehabilitation, or broader health services research. If you do not wish your data to be used in future projects, you can still complete the survey and opt out of data sharing. Your responses will then only be used for this doctoral project and its directly related publications.
If you are interested in taking part, we encourage you to discuss your participation with your whānau, friends, or supporters, if you wish.
Participants can opt into a draw to receive one of ten $50 Woolworths vouchers for completing the survey.
If you would like more information before you decide whether to participate, please feel free to contact the study coordinator b.scrivener@auckland.ac.nz. We are happy to answer your questions. You may also contact the Principal Investigator's Head of Department, Professor Nicola Dalbeth at: n.dalbeth@auckland.ac.nz
If you require Māori cultural support, contact the administrator for He Kamaka Waiora (Māori Health Team). Telephone: 09 486 8324 ext. 42324
If you have any concerns about the conduct of the study, you may contact the Chair of the Auckland Health Research Ethics Committee (AHREC) at ahrec@auckland.ac.nz, quoting the study reference number 30536.
This research is funded by the Health Research Council of New Zealand.