Wednesday, August 8, 2012

Participate in a study on delivery of Down syndrome diagnosis

To Whom it May Concern,

My name is Jane Goodwin and I am a student researcher at the University of Newcastle, Australia. Currently, I am working with Dr Linda Campbell (chief investigator) on an investigation into parents' and caregivers' experiences regarding the diagnosis of Down syndrome. Specifically, we are interested in the diagnosis experience, how the children were told, and coping methods used. We are also looking at caregivers' and parents' concerns around telling their children about the syndrome. This project has ethics approval from the University of Newcastle's Human Research Ethics Committee. Approval No. H-2012-0129.

To investigate this, a 20 – 30 minute questionnaire has been created which can be found at We hope that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.

Link to our study website ( We are seeking people 18 and over who are either a parent or a caregiver of an individual with Down syndrome.

If you have any questions or concerns, please contact myself ( or Dr Linda Campbell (

Thank you for considering this request,

Jane Goodwin and Linda Campbell

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