Sibling Voices Project

Here are the ways siblings can get involved:

1)    Advisors

2)    Online survey

3)    Participating in a live summit with other siblings

4)    Focus groups

5)    Keeping informed of our research

1. Advisors:

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 want to know what matters to you as a sibling, and how we can help.

Please note, we are not looking for more Advisors at the moment, but we would love you to express your interest in becoming part of our study at a later date here.

2. Online survey:

Our online survey asks questions about wellbeing and family life, and gives an opportunity for reflections and wishes.  There will be a parent-assisted survey (ages 4-12) and a sibling alone survey (ages 13-24).

If you are interested, please submit a form here to be notified when the survey launches!

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. Focus groups:

For siblings too young to attend a summit, or those living away from Perth, we will hold a series of small focus group discussions to make sure your voices are heard too.

If you are interested, email us here.

5. Keeping informed:

You can opt-in here to have future contact, and to receive feedback about the outcomes of our research projects.

We are additionally seeking the input of: 1) health, education and disability support agencies, 2) policy change agents in government, and 3) online support groups or networks. If any of these apply to you, please register your interest by visiting this link or emailing us.

Your responses will help shape ideas to develop support systems for siblings. By participating, you will be on the frontline of our research to make it real and relevant.

The Sibling Voices Project online survey will be available online soon. The survey asks questions about wellbeing, quality of life, sibling relationships, and unique experiences. The survey will also give siblings the opportunity to share their strengths, hopes and dreams for their own future and their sibling’s.

The survey will take approximately 20-30 minutes to complete. It can be completed online at a time and location that is convenient to you. Register your interest here (launching soon!).

All eligible responses will be in the running to win a range of gift cards!

Your privacy is important to us, so your survey responses will be anonymous. The information that is collected will be stored on the REDCap platform with secure data technologies.

Stay tuned for the survey link!

The Sibling Voices 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 A/Professor Helen Leonard and the online survey is coordinated by researcher Brittany Mann. If you have any questions or comments about the Sibling Voices Project, or 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. She is a member of an international autism collaboration, funded by the  NIH as a “virtual and global” Autism Centre of Excellence and which has the infrastructure to undertake pooled analyses of international data comprising over 2.5 million births and nearly 34,000 cases of autism. 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

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.

More resources just for you are coming soon!