Researchers at Melbourne University and the Australian Genomics Health Alliance would like your feedback. They are working on a project for which they are searching for participants to give feedback on the effect of the COVID-19 crisis on the quality of life of parents with children affected by genetic conditions.
COVID-19 has generated unprecedented uncertainty with severe consequences. There are many avenues through which COVID-19 is likely to have impacted families. Lost employment and school closures may significantly add to the parental burden when severe behavioural and developmental issues pre-exist. Concerns about the risk of contracting COVID from carers may have limited access to respite and other allied health services. Loss of connection from peer support may have further endorsed feelings of anxiety and isolation.
Participation in this survey will help understand how the pandemic has affected your life.
Should you agree to participate, you will be asked to complete one survey. The survey will take about 10 minutes to complete. Initially, the survey asks some questions about you and your child. The survey then asks some questions about which areas of your life or your child’s condition have been affected. You will then be asked to complete a validated measure of quality of life.
Please contact the researchers directly should you wish to get involved:
Dr Ilias Goranitis (Responsible Researcher); Email: [email protected]
Dr Stephanie Best; Email: [email protected]
Please click here for more information.