Centre for Appearance Research NF Survey - Results
04 March 2021
The Centre for Appearance Research at UWE Bristol interviewed parents and carers of children with NF that took part in an online survey about their parenting and caring experiences. Findings from the survey are a vital part of informing the development of future support for parents and carers of children with appearance affecting conditions and injuries.
Thank you to all those participating there has been one lucky winner of £50.00 who has been informed by CAR directly
Details of the survey:
Maia Thornton, a PhD researcher at the Centre for Appearance Research, has designed an online survey based on the findings of parent interviews and focus groups with parents of children with a range of appearance affecting conditions and injuries.
The online survey covers a number of topics including parenting/caring experiences, how parents/carers manage challenges related to their child’s condition or injury and parents’/carers’ thoughts and feelings about their child’s condition or injury.
It would be really helpful to hear from the parents of children with NF about their experiences. The data collected from this survey will inform decisions about the development of future support and anyone who participates will help to contribute to this.
There is also an opportunity to enter into a prize draw to win a £50 Amazon voucher at the end of the survey, as a thank you for your time.
If you are a parent of a child (aged 0-18 years) with NF and would be interested in taking part, please click on the button below.
There is an information page at the beginning of the survey so you can find out more details before you decide whether you would like to take part. Alternatively, you can find out more about the project by watching the video below.
Both parents and multiple carers within a single-family are welcome to take part so please feel free to share the link with anyone who you think may be interested.
If you have any questions about any of the above, please don’t hesitate to get in touch with me at Maia.thornton@uwe.ac.uk
Ethics approval code: HAS.19.12.092 Centre for Appearance Research (CAR) at the University of the West of England, Bristol.
Nerve Tumours UK is not responsible for any data management and content of the research.
Filter News
Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)
Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's
Read MoreNF2 Day 2024 by Emily Owen
A reflective poem for World NF2 Day, to celebrate people living with NF2
Read MoreConnor’s NF2 story
Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated
Read MoreJo’s Shine A Light Family Fun Day
The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board
Read MoreErin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
Read MoreTate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read MoreAccess to your GP
We want to hear from you… Help us improve services by completing a quick survey
Read MoreLondon Marathon 2024 Team NTUK
Thank you and congratulations to Team NTUK for their marathon effort
Read MoreThomas’ NF1 story
Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife
Read More