How can VicCHILD help children born with hearing loss?
Each year in Victoria, around 110 babies are born with a permanent hearing loss. As these children grow, they can face extra challenges with things that come naturally to other children like language and learning, and their quality of life can be diminished.
The VicCHILD register can help us understand why some children with a hearing loss do so well, while others experience greater difficulties. This important 'bank' of information could improve ways of supporting, treating and ultimately improving the lives of children with hearing loss and their families.
How can families help VicCHILD?
Families with children with a permanent hearing loss (born since 1st January 2005) can register with VicCHILD. VicCHILD will collect a small amount of information, every few years.
Information from families can help researchers work towards unlocking the secrets of hearing loss.
To register, call (03) 9345 4215 or email email@example.com.
I received a letter from VicCHILD - what should I do now?
Families around Victoria who have a child born with a permanent hearing loss are being sent a letter about VicCHILD. These letters are being sent out to families known to the Victorian Infant Hearing Screening Program, or by the SCOUT and CHIVOS projects.
Shortly after you've received this letter, VicCHILD will contact you via telephone.
If you do not want a VicCHILD researcher to contact your family, simply return the slip provided in the letter (within 10 days of receiving it), and your details will not be passed on to VicCHILD.
If you have moved house or changed phone numbers since your child's hearing diagnosis, VicCHILD may have trouble reaching you. In this case it would be helpful for you to contact VicCHILD directly by calling (03) 9345 4215 or firstname.lastname@example.org.
What do parents in VicCHILD need to do?
We know how busy families are, so VicCHILD is designed in a way that takes up as little time as possible.
At the time of enrolling, a VicCHILD researcher will ask to visit the family at their home. These home visits are an opportunity for families to have their questions answered in person, allow the family and researchers to discuss and complete parent consent forms, and allow the researcher to collect a simple cheek swab and/or spit pot from the child.
Families are also invited to complete a short questionnaire when they first join VicCHILD. The questions are about their child's health and development. As a child's family has such an important role in the child's development, we also ask questions about the child's parents/guardians and family.
After enrolling, families will only be contacted every few years:
- When the child enters primary school
- When the child enters high school
- At these times, researchers will arrange home visits to gather more information about the child's development. Parents are invited to complete a short questionnaire while their child takes part in simple assessments of their language and general development.
For a copy of the Parent Information Statement and Consent Form, click here.
What do children in VicCHILD need to do?
The information collected from children is very simple and easy.
When a child's family first signs up to participate in VicCHILD, a researcher will visit the family and, with the parents' permission, collect a cheek swab and/or spit pot from the child. A cheek swab involves a cotton swab gently rubbed inside the cheek. Read more about cheek swabs. A spit pot involves a child providing a saliva sample into a plastic tube.
After the initial visit, a researcher will only be in contact with the family every few years to arrange a visit. During these visits, the researcher will carry out short assessments of the child. The assessments are short activities that tell us more about children's language and general development.
What biological samples are being collected and why?
There are three types of biological samples being collected for VicCHILD, and two of these have already been collected during pregnancy and when the child was born. The three samples are:
- Maternal serum (already collected during pregnancy, parent consent required to access sample).
- Newborn screening card (already collected after child's birth, parent consent required to access sample).
- Cheek (buccal) swab and/or a spit pot (to be collected by a VicCHILD researcher or in some cases, the parent).
The collection of biological samples helps researchers investigate the potential causes of different hearing impairments in children.
How can families update their contact details?
It is very important to maintain correct contact information with the families in VicCHILD. If you or your child is part of VicCHILD and you have recently moved or changed phone numbers, please click here to update your details. Or you can contact the VicCHILD team and they can update the details for you.
Phone: (03) 9345 4215