Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
SWAN is sometimes approached by clinicians, researchers, PhD students, Masters of Genetic Counselling students, and psychology students who are seeking participants for their research projects. Research opportunities are shared in our newsletter and you can find the details to more information on current research projects below.
Research Fee Update 2023
If you would like SWAN to help recruit participants for your research study, we will be charging a $100 fee in 2023 to cover administration prices. We will waive this fee for PhD and masters students. Thanks for your understanding and we look forward to supporting your research.
Australian Bereaved Parents Study
Monique Garcia is a PhD student at the School of Medical and Health sciences, Edith Cowan University, Perth, Western Australia. Monique is looking for research participants for the Australian Bereaved Parents Study.
The study seeks to investigate the health of parents who have lost a child (0-18 years) within the last 5 years. The link below outlines the specific details of the study. The study is interested to learn if parental bereavement increases the risk of an individual obtaining a suboptimal health status as well as developing anxiety, depression, stress, and PTSD. By identifying “at-risk” parents this will allow the development of targeted interventions to improve their future health outcomes.
You can complete the study at the following link: https://ecuau.qualtrics.com/jfe/form/SV_cILTdBLXtIiZtlA
Participation in this survey qualifies parents to go into the draw to win a $1000 VISA card, drawn on the 1st May 2023.
Contact details: Monique Garcia, 0420 866 151
Plain Language Genomic Test Reports
Some of our SWAN families kindly offered to be participants in Gemma Brett’s Australian Genomics research study about plain language genomic test reports.
You can download these plain language reports by clicking here.
You can read about Gemma’s research findings at the following links:
Supporting your young person with CP and complex communication needs to talk about puberty, relationships and sexuality
Are you the parent or guardian of a young person (aged 10-24 years) who has CP and uses AAC to communicate?
During adolescence and young adulthood, your young person is going through major life changes.
These include things like physical changes related to puberty and developing a sense of sexuality.
We want to know about your experiences talking with them about these important and tricky
changes! Please click here for the study flyer and to get involved, please email Megan Walsh at email@example.com