The Sibling Project

Here are the ways siblings can get involved:

1)    Our Sibling Advisory Panel

2)    Online survey - now live! Click here to participate!

3)    Participating in a live summit with other siblings

4)    Visual Voices (coming soon!)

1. The Sibling Advisory Panel:

By sharing your own experiences, you will be able to guide and advise on the development of our study methods and materials. We want you to tell us exactly what you think, and even more importantly, tell us how to make our ideas better.

We would love you to express your interest in becoming part of our study here.

Parents of children with a developmental disability, we also need your advice and feedback on our ideas and research methods. If you are interested in a parent advisory role, please get in contact with us here.

2. Online survey:

Our online survey asks questions about wellbeing and family life, and gives an opportunity for reflections and wishes. 

Now live! Click here to take part!

3. Summit:

We are holding online summits for groups of young siblings to come together. The summits will be a personal experience to understand sibling lives, home and school experiences, relationships between siblings, and what siblings think is important for us to research to help them in the future.

If you are interested, email us here.

4. Visual Voices:

A first of its kind special paid project will be launched soon, giving siblings the chance to express their dreams, experiences and inspiration via creative outlets including drawing, photographing, and writing stories.

If you are interested, email us here.

Keep Informed! New opportunities are posted frequently.

You can opt-in here to receive updates about the outcomes of our research projects.

What have we done so far? Participatory research in action!

We formed an international Sibling Advisory Panel and together across several Zoom meetings, we developed the Sibling Project Survey, now live! Click here to have your voice heard!

We directly engaged siblings, their parents and families as partners in research that has directly informed the design and testing of our survey.

What we will do moving forward into 2021:

The Visual Voices Project. This innovative project will collect creative work, photos and stories from participants. We are co-designing this project with the help of our Advisory Panel.

A language preferences project, where you can let us know what language you prefer to use when referring to people with disabilities.

If you would like to participate in this research for 2021, please click here to register your interest.

The Sibling  Project online survey is now live! The survey asks questions about your wellbeing, quality of life, relationships, and unique experiences.

Click here to launch the survey and have your voice heard!

All eligible responses will be in the running to win $100, redrawn every month!

Your privacy is important to us, so your survey responses will be anonymous. The information that is collected will be stored securely on our Qualtrics platform.

The Sibling Project is part of research led by a team of investigators based at Telethon Kids Institute, who have been awarded funding by the National Health and Medical Research Council (NHMRC). The Sibling Voices Project is being led by Dr Emma Glasson and the online survey is coordinated by researcher and PhD student Brittany Mann. If you would like to be a part of this innovative research, please email the team at siblings@telethonkids.org.au

Dr Emma Glasson is a Senior Research Fellow at the Telethon Kids Institute. She has led many research projects investigating the epidemiology, comorbidities, health patterns, diagnoses and management of developmental disorders, including intellectual disability, autism and genetic disorders. She has led internationally unique state and national disability research projects, including a state-wide register for autism with information on over 6,000 cases collected over 19 years, a state-wide genealogy for 2.5 million WA residents, and a national questionnaire and biometrics study on Rett syndrome. To contact her, please email: Emma.Glasson@telethonkids.org.au

A/Professor Helen Leonard has qualifications in medicine and public health. She is a Principal Research Fellow at the Telethon Kids Institute, Associate Professor at The University of Western Australia and is in receipt of an NHMRC Senior Research Fellowship. For twenty years her clinical practice primarily involved the management of children and adults with intellectual disability. In 1992 she established the internationally unique population-based Australian Rett Syndrome Database, in 2002 she established the International Rett Syndrome Foundation Phenotype Database, InterRett and in 2012 the International CDKL5 Disorder Database. To contact her, please email: Helen.Leonard@telethonkids.org.au

Brittany Mann is a Masters/PhD candidate in Clinical Neuropsychology at The University of Western Australia, a Provisional Psychologist, and Research Assistant at Telethon Kids Institute. Her research is investigating siblings of children with neurodevelopmental disabilities. She also has a current research focus on prevention, diagnosis and management of Fetal Alcohol Spectrum Disorder. Her future research aims to explore the neurobiology of complex neurodevelopmental and psychiatric disorders in siblings. She aims to investigate critical brain-behaviour relationships which may indicate new diagnostic markers for early identification, and treatment targets for intervention. To contact her, please email: Brittany.Mann@telethonkids.org.au

Are you a sibling looking for a safe, supportive space to connect with other siblings like you? We have a private  Facebook Group! Here, you can share your experiences, ask questions and support each other. Click here to join the group.

This website has a great list of books for siblings of children with disabilities.

Do you prefer identity-first language (i.e., 'disabled people) or person-first language (i.e., 'people with disabilities')? Or maybe you have a preference for both? If so, we want to hear your thoughts on the language you prefer using to communicate about disability!

We are looking for anyone aged 16 or older who lives in Australia to complete our online survey! This survey should take around 20 minutes to complete. You do not have to identify as having a disability or know anyone with a disability to enter - it is open to anyone! As a thank you for participating, you will be eligible to enter a prize draw. 

If you are interested in completing the survey, please click here. We would also very much appreciate if you could share this with your family, friends and networks - thank you!

(This study has been approved by the UWA Human Research Ethics Committee (2020/ET000259)