Thriving Minds DSD Youth Support research project is a collaboration between the Centre for Appearance Research (CAR) at the University of the West of England (UWE), Bristol, and DSD Families.

The research project is funded by UK Youth Awards Thriving Minds program and is being conducted by Emma Waite, who is a Trainee Health Psychologist and Research Associate at CAR, and Dr Maia Thornton, who is a Research Fellow at CAR.

The aim of this project is to better understand the support needs of young people with a DSD and to develop support based on this research.

They are currently calling for User Representatives across the DSD community to help inform this project find out more details below from the researchers:

What does being a User Representative involve?

We want to include the voices of people from the UK with lived experience as much as possible in the design and implementation of the research. To do this, initially we will ask you to complete an anonymous online survey about your experience, what kind of support is missing for young people with DSDs, and what kind of questions would be helpful for us to ask so we can better understand their experiences.

We will then meet with User Representatives in two groups – one for parents and one for young people. These will be conducted virtually (via video chat or telephone) and we will talk about the responses from the surveys. We will give User Representatives time during this meeting to talk together without us present. Throughout the project we will aim to hold several of these meetings to continue getting your feedback and suggestions and these will be flexible to respect your school, work, and social commitments.

After each User Representative meeting, we will give you the opportunity to provide feedback via an anonymous online survey. This is to help make sure your voice is heard and the research project is going in the direction that you feel is right. Once we have created some research materials, we will also ask for your feedback on them. This would be a time commitment of no more than 5 hours total and a small fee is provided to participants in recognition of their time.

We are looking for young people aged 16-25 years with lived experience of a DSDs and their parents. We will be asking you to discuss your experiences and thoughts about support needs for young people with a DSD

Interested?  Please.follow the link to learn more and contact the researchers if you would like to participate.

Emma Waite (Trainee Health Psychologist and Research Associate) 
Dr Maia Thornton (Research Fellow)

Please note this is not an MRKH Connect led study but we believe it to be of interest to the community and are pleased to share this given the importance of the topic and improvement support for young people with DSDs🤍