The studies this project has conducted
Discover what we’re learning about life as a sibling of someone with a developmental disability.
Explore the findings
Rural study
93 siblings aged 16–30 in regional and remote Australia described unmet needs and self-reliance. They valued online support, shared activities, being acknowledged as individuals, and supported as a sibling.
Sibling voices
We asked young siblings to describe their brother or sister with Down syndrome using three words.
Parent study + data linkage
Parent study
Parents of children and young adults with Down syndrome or Rett syndrome described siblings’ positive qualities, close relationships and optimistic outlooks. Some parents also spoke of having less time for siblings, and challenges planning family holidays.
Read the studyData linkage
Linkage of disability and family data in WA showed that children with neurodevelopmental conditions are more likely to have siblings in their family, and larger family sizes. Birth order varies, and family sizes have generally reduced over time.
Read the studyNational sibling survey
Our national survey explored sibling strengths, wellbeing, experiences and perspective.
Young people valued kindness, empathy, social skills, health, creativity and self-awareness when describing their strengths and hopes for the future.
Read the studyCompared with other siblings, survey participants whose sibling had a neurodevelopmental condition reported more anxiety and depression, and poorer sleep.
Read the studyHigh levels of mental health diagnoses and poor wellbeing persisted. Sleep difficulties helped predict poorer wellbeing at follow-up.
Read the studyResponses showed overall lower performance in skills such as working memory, attention and flexible thinking.
Read the studyCompared with a control group, siblings reported higher rates of self-harm, suicidal thoughts and suicide attempts. These findings highlight important support needs.
Read the studySiblings more often reported a history of traumatic brain injury than the control group. This was associated with psychiatric diagnoses and autistic or ADHD traits.
Read the studyIn their own words
“… siblings have pretty similar experiences and it's important to celebrate and recognise how awesome it is to have a disabled sibling when the world has a tendency to look at disability with pity”
Down Syndrome WA Sibling Camp participant, aged 16
More sibling voices 
Moments from our sibling camp gallery. Select a photo to view it in full.
Literature reviews
Three literature reviews bring together what is known about sibling wellbeing and support.
Our review found higher risks of mental health conditions, especially anxiety and depression, and poorer quality of life. It also found evidence of resilience and personal growth.
Read the studySibling support improves self-esteem, emotional wellbeing and sibling relationships. More focus on individualised supports is needed.
Read the studyOur review found that linking population records can help understand a wide range of sibling health outcomes and bring more attention to their support needs.
Read the studySibling voices
We asked young siblings to use three words to describe their relationship with their brother or sister with Down syndrome.
Sibling connections
“Connecting with other siblings is really valuable…”
Down Syndrome WA Sibling Camp participant, aged 16
“Connecting with others is already valuable, but connecting with others similar to you helps recognise yourself in others and vice versa... I also like making friends”
Participant, aged 16
“Mentorship, new friendship connections, learning from each other...”
Participant, aged 12
More to discover
Four more studies are complete. We’ll share the findings here soon.
Findings coming soon