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.
Parents or legal guardians of children who had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.
The survey will take approximately 20 minutes to complete and can be completed online by the survey link. This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne.
For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109 or [email protected], Elly Lynch on 03 9936 6315 or [email protected] or Anita Gorrie on 03 9594 2026 or [email protected]
The Epilepsy Foundation is working with the Royal Children’s Hospital, Melbourne, Genetic Epilepsy Team Australia (GETA), Murdoch Children’s Research Institute and Australian Genomics to find out more about your experiences of caring for a child with complex needs. Your feedback will help the Epilepsy Foundation advocate for an improved Australian healthcare system, and for a greater understanding of rare and genetic epilepsies.
If your child doesn’t have seizures but has a genetic condition in which some people experience seizures, then we encourage you to participate.
Complete the survey by following the link here.
More information about the research can be found via the link below or by scanning the QR code. If you would like further information or have questions, you can contact the study team:
Katherine Howell: [email protected]
Stephanie Best: [email protected]
Together with Palliative Care Australia (PCA), Childhood Dementia Initiative is hosting a family roundtable by Zoom on Wednesday 24th November. If you are a parent or carer of a child living with dementia this is a great opportunity to have your say on how palliative care for infants, children and young people in Australia can be improved. You don’t need to be accessing palliative care right now, you may be planning to in the future or you may be choosing not to connect – the team would like to hear all perspectives. You can find the list of conditions that cause childhood dementia at www.childhooddementia.org.
If you are interested email the team at [email protected]
Early Response Tool
Researchers from The University of Queensland are conducting a study to evaluate the Early Response Tool – a tool that measures day-to-day issues parents and carers commonly experience when providing care to a child or adolescent with disability. This study will inform new service delivery practices to better identify and support parents, carers and families who may be finding the parenting/caring role difficult and challenging.
How you can help:
We are seeking parents or carers of children and adolescents with disability (up to 18 years) to complete an anonymous survey about their parenting/caring experiences. The survey takes between 10 and 20 minutes to complete, and those who complete the survey can enter a raffle to win one of four $50 Coles Myer Gift Cards. You can complete the survey online using the access password parent. To request a paper survey or if you have any questions regarding the survey or the project in general, please contact Maria Vassos T: 0413 769 142. The survey will be available to complete until Friday, 31 December 2021.
Exploring allied health professionals’ awareness of genetic counselling and learning needs about genetics, genomics and precision-medicine
“Calling on allied health professional friends, do you ever see clients or families with genetic conditions? The genetic counselling research team at the University Technology of Sydney want to hear your views on the role of genetics in your discipline, your experiences and learning needs in online an interview/focus group at your convenience (before/after hours available).
This research project aims to understand the awareness and specific learning needs of allied health professionals about genetic counselling, genetics, genomics and precision-medicine and the situations where these health professionals may work with clients who are concerned about these issues. These findings will inform the development of learning resources in this area. Please email Chris Jacobs for more information.