Abstract

Have you supported a woman and her family after they received unexpected news following prenatal screening, with a suspected or confirmed diagnosis of Down syndrome? Down Syndrome Queensland believes that families have the right to feel supported in their choices no matter which path they choose. We aim to provide balanced, evidence-based information so that people can feel empowered to move forward. The health project aims to: 1. Develop clinical guidelines for prenatal testing of Down Syndrome; 2. Establish a formalised referral pathway; 3. Develop an awareness campaign, focusing on aspects of informed consent, prenatal screening options, and conversations around unexpected news; and 4. Implement an accredited professional development educational tool around prenatal screening. The development of training and education resources has been drawn from literature reviews, focus group feedback provided by parents who have undergone prenatal screening, and stakeholder engagement. The clinical guideline will provide easily accessible, evidence-based advice relating to: • The common prenatal screening tests for chromosome conditions including non-invasive prenatal screening • Understanding and communicating the difference between screening and diagnostic tests • Understanding and describing the most common chromosome conditions, including Down syndrome, which are the subject of screening • Enabling informed consent about participating or not participating in screening • Appropriate communication and use of language when discussing screening Results • Supporting informed decision-making following unexpected screening Results • Care pathways following unexpected screening and/or diagnosis. The poster will advocate a woman’s right to balanced, accurate information about prenatal screening and any ensuing results before, during and after such procedures occur. The decision making implications and right to all aspects of information in order to make a fully informed reproductive choice is paramount.

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