Involvement opportunity: Improving Mental Health Support for Children with Rare Genetic Conditions

Cerebra, a charity who support children with brain conditions and their families, have collaborated with Cardiff University to improve mental health support for children with rare genetic conditions which often cause developmental and intellectual delay.

Research shows that children diagnosed with these genetic conditions are more vulnerable to psychiatric problems, however they often do not receive appropriate mental health support.

The project team have collected data which highlight the current challenges families and service providers experience when trying to access and provide mental health support. They would now like to form a project advisory group to help guide the future direction and activities of the project and devise new strategies that we can trial to help tackle these challenges.

Who can join?

We would like the group to include:

– parents/carers of a child with a developmental genetic condition

– young adults who are over the age of 18 diagnosed with a developmental genetic condition

– health professionals including psychologists, psychiatrists, genetic counsellors, paediatricians and GPs

– health commissioners

– rare disorder charity groups

– educationalists

How often and where will the group meet?

The team will arrange for the meetings to take place at the most mutually convenient location for all members of the group. Should you not be able to attend in person, there may be the opportunity to teleconference into the meeting. The group would meet 2-3 times a year at key stages to discuss the progress of the project and have key input in its direction by making recommendations as to how the research team should proceed to deliver the project aim. The project will run until January 2022.

Is anything offered to members for taking part?

Cardiff University will cover reasonable travel expenses for attendance at meetings, in line with Cardiff University guidelines. Members of the public will be offered £15 per hour for each group meeting they attend (people can request less if they are in receipt of state benefits).

How do I express my interest?

If you would like to hear more information about this opportunity, please email or call Lowri O’Donovan. Lowri is the Research Assistant working on this project.

Email: odonovanl@cardiff.ac.uk / lowrio@cerebra.org

Telephone: 02920 688406