We need your family’s help to shape them…
A team at Imperial College Healthcare NHS Trust has created two new information leaflets written specifically for children and young people living with congenital CMV. We’re helping them gather feedback, and your family’s views could shape whether these leaflets are used in cCMV clinics across the UK.
What are the leaflets?
Children and young people with congenital CMV often receive clinical letters written for their parents or their medical team. These new leaflets are different. They’re written directly for the young person, explaining what cCMV is, what it might mean for their body, and what they can do to look after themselves. There’s one version for children aged 7–10 and one for young people aged 11–15.
cCMV Information Leaflet
for ages 7-10
cCMV Information Leaflet
for ages 11-15
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Why does your feedback matter?
Before these leaflets are adopted more widely, across regional and national cCMV services, the team at Imperial wants to know what families actually think of them. Are they clear? Are they the right tone for the age group? Is there anything missing? Your answers will directly influence how these leaflets develop and whether they become part of standard care for young people with cCMV across the country.
Who can take part?
Any family with a child or young person aged 7–15 who has been diagnosed with congenital CMV is warmly invited to take part. There are three surveys:
- A short, friendly survey for children aged 7–10 (takes around 5 minutes, and can be completed with a parent’s help)
- A survey for young people aged 11–15 (takes around 8 minutes)
- A survey for parents and carers, for any family where the child is unable to complete a survey themselves, including those with developmental differences, cognitive or learning difficulties, or communication needs. Parents can also complete this alongside their child’s own response (takes around 10 minutes)
All surveys are completely anonymous.
Click on the image below to go to the correct survey for you.
A note for families of children with developmental differences
We know that many children with cCMV have developmental differences, cognitive difficulties, or communication needs that make completing a survey independently very difficult, or impossible. These families matter enormously to this project, and the parent/carer survey was designed with exactly this in mind. If your child cannot complete a survey themselves, please complete the parent/carer survey on their behalf. Your experience of the leaflet, and of receiving a cCMV diagnosis as a family, is every bit as important as your child’s, and we want to make sure it is heard.