The Murdoch Children’s Research Institute (MCRI) is calling for input to help inform Australia’s service delivery and policy for deaf and hard of hearing children aged up to 26 and their families.
Associate Professor Valerie Sung, a Royal Children’s Hospital paediatrican and NHMRC Fellow at the MCRI, wants to hear what matters to these children and their families.
She is calling for parents and carers of children or young people who are deaf or hard of hearing, along with professionals who work with or conduct research for deaf and hard of hearing children, to take part in a survey which is open until 5 March 2025.
“We want to know what information you think is most important for services and researchers to collect about deaf and hard of hearing children, to measure how they progress to inform service delivery and policy,” she said.
Participants are asked to rank this information in order of importance by filling in a survey.
A/Prof Sung said, in a video, that since 2023 a research team from the MCRI, along with carers, parents and other researchers across Australia had been working to understand what outcomes matter most for families and young people who are deaf or hard of hearing.
Outcomes could include quality of life, social competence and education progress.
“So far, we have already heard from 35 families across Australia and every single one has helped us understand the views of parents, carers and young people,” she said. “We are learning so much about what information hearing health and education services should collect about young people who are deaf or hard of hearing.”
Valuable insights about what information hearing services should collect could have impacts that last years and create meaningful change, parents said in the video. Personal details will be kept confidential.
The survey forms part of the ANCHOR Outcomes Matter project.
ANCHOR, or the Australian National Child Hearing Health Outcomes Registry, is the first national registry in Australia to track treatment and outcomes for deaf and hard of hearing children.
Aussie Deaf Kids said it had worked with the ANCHOR study team and members of the Australian Childhood Deafness Research Community Advisory Group to develop a long list of ‘core outcomes’ generated from focus groups/interviews and scientific literature. These are grouped into different ‘core outcome domains’ in the survey.
“Now, we need your help in ranking these core outcome domains, so that we can narrow down the list to the most important outcomes that child hearing health professionals/researchers/stakeholders should measure in the future,” Aussie Deaf Kids said.
Who can take part?
Aussie Deaf Kids said people eligible to take part are:
- a parent/carer of a child or young person who is deaf or hard of hearing (aged 0 to 26 years)
- a young person who is deaf or hard of hearing (aged between 16 to 26 years)
- a deaf adult who uses Auslan
- a health professional, early intervention or allied health worker, support or advocacy professional or educator who has worked with at least 10 children or young people who are deaf or hard of hearing in the past 12 months
- a researcher who has undertaken research into child hearing in the past five years
- a delegate attending the 2025 Australasian Newborn Hearing Screening Conference in Canberra
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