Our PhD student Lowri O’Donovan has put together a survey for parents of children with rare genetic conditions. Working with Cerebra and Cardiff University, Lowri wants to understand the school experiences of children with rare genetic diagnoses and how these experiences impact children’s mental health.

Lowri explains: “We know that school experiences have an effect on children’s mental health outcomes, however there is no research which looks at the effect on children with a genetic condition specifically. We hear from parents that their child’s school often does not understand their child’s condition, that they have difficulty securing the support their child needs at school, and that their child has been the victim of bullying by their peers. It’s important to understand the impact of these experiences as this will help us help schools to be a more positive place for all children. In turn, this will help children to achieve their potential.

To help us with our research, you can take part in this survey. The survey is for parents/main caregivers of children with a genetic condition, and who are 15 years or younger. It asks those completing the survey questions about their children’s experience of school and about their child’s mental health”.

Participation in the survey is confidential and participants can withdraw at any time.

If you are interested in taking part, you can find more information about the study and complete the survey here.

If you’d like to speak directly to Lowri, you can contact her on 02920 600406 or [email protected].

Find out more

You can watch Lowri explain a bit more about her research to Elaine from our Comms Team.

We believe much more can be done to improve mental health care and support for children with rare disorders, their families, service providers and wider communities. Through our project with Cardiff University we hope to develop innovative interdisciplinary partnerships between services. You can find out about our project here.