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Centre for Appearance Research NF Survey

08 September 2020

The Centre for Appearance Research at UWE Bristol is looking for parents and carers of children with NF to take part in an online survey about their parenting and caring experiences. Findings from the survey will go on to inform the development of future support for parents and carers of children with appearance affecting conditions and injuries.

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 form 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.

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