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Survey: Parenting children with genetic disorders

Are you a parent or caregiver to a child with a genetic condition? Researchers at the University of Newcastle’s FIND Lab (Family Interaction and Neurodevelopmental Disorders) are interested in your experiences surrounding your child, including your emotional reaction and psychological well-being.

Following on from their earlier study of how parents disclose a genetic disorder* to their children, researchers are also interested in the support that caregivers have available, and how this helped them to cope with the experience.

The questionnaire is completed online. Parents and caregivers who took part in the previous study in 2012/13 can still participate. Participants can remain anonymous if preferred.

Completing the survey will help researchers gain a greater understanding of managing the diagnosis situation. Hopefully, the findings will provide parents in the same situation with more guidance and tools.

Find the questionnaire online here.

For more information, contact Jane.Goodwin@uon.edu.au

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