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The studies this project has conducted

Featured research studies

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We reviewed international literature and found that siblings who had a brother or sister with a neurodevelopmental condition consistently had higher risks of psychiatric conditions, especially anxiety and depression, and poorer quality of life. But there was also clear evidence for sibling resilience and growth.

A child sitting by a calm lake, facing away from the camera
A close-up of a person’s hands in a comforting gesture

A recent review we conducted showed that siblings who participated in support groups or individualised interventions improved on self-esteem, coping, sibling relationships, and knowledge of their sibling’s disability. Unfortunately, there were not large improvements seen for symptoms of anxiety, depression, or quality of life. More research is needed on the best way to support these siblings.

We asked siblings to identify personal qualities and future aspirations. Siblings told us they valued their positive personality traits such as kindness and empathy, their social skills, mental and physical health, creative pursuits, and self-awareness.

Two children sitting outdoors, laughing and enjoying themselves

Further publications

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Research publication

The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review

Data heart

We reviewed how linking together population data from different sources can help capture health outcomes of siblings of children with neurodevelopmental conditions. This method showed great potential in exploring diverse health outcomes, allowing more attention and inclusion to be placed on the support needs of siblings.

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Research publication

Individual-Level Risk and Resilience Factors Associated with Mental Health in Siblings of Individuals with Neurodevelopmental Conditions

A black-and-white close-up portrait of a young girl with a serious expression, gazing directly into the camera

Our large-scale online survey showed that siblings of people with neurodevelopmental conditions reported higher rates of anxiety and depression, when compared to siblings of people without neurodevelopmental conditions. They also reported poorer sleep.

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Here’s what some of our Down Syndrome WA Sibling Camp participants said about getting the opportunity to meet other people who have a brother or sister with Down syndrome:

“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” (aged 16)

“Mentorship, new friendship connections, learning from each other...” (aged 12)

“… 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” (aged 16)

Research publication

Stability and change in self-reported risk and resilience factors associated with mental health of siblings of individuals with and without neurodevelopmental conditions over 15 months

Person sitting on a couch with a laptop and a dog

We tracked siblings of children with neurodevelopmental conditions, and found that high rates of mental health diagnoses and symptoms of poor wellbeing remained after 15 months, especially anxiety and depression. Sleep problems appeared to play a key role in predicting poorer wellbeing at the time of follow-up.

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Research publication

Neurocognitive and self-reported psychosocial and behavioral functioning in siblings of individuals with neurodevelopmental conditions

Close-up of two hands, one hand gently resting on top of the other

We used unique methods to measure and analyse sibling executive functioning (skills like working memory, attention, and flexible thinking). We found that overall, siblings of children with neurodevelopmental conditions have poorer executive functioning when compared to controls.

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How would you describe your sibling in 3 words? 
Here’s how some young people described their sibling with Down syndrome to us

Colourful word cloud depicting various personality traits. The largest words are 'amazing,' 'funny,' and 'kind,' indicating their prominence

Research publication

Psychosocial and neurocognitive correlates of suicidal thoughts and behaviours amongst siblings of persons with and without neurodevelopmental conditions

Two people sitting closely together, one person resting their head on the other's shoulder

When compared to a control group, our research has shown that siblings of children with neurodevelopmental conditions experience higher rates of self-harm, suicidal ideation, and suicide attempts.

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Research publication

Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Three kids standing together outdoors with their arms around each other

Parents of children and young adults with Rett syndrome or Down syndrome told us that siblings develop positive personality traits, have rich relationships, and have optimistic outlooks. Some parents perceived they had reduced time available for siblings, and sometimes faced challenges organising family holidays.

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Our exciting adventures!

A group of kids at the archery range, each drawing back their bows while facing the targets on a grassy field A young person wearing a black bucket hat and a red and black jacket is practicing archery with guidance from an instructor A group of six people is on an outdoor artificial turf sports field, engaging in a casual football game A group of children wearing helmets and harnesses stand in front of an indoor rock-climbing wall, watching others climb A child wearing a helmet and harness gliding on a zip line over a grass field A group of kids at the archery range, each drawing back their bows while facing the targets on a grassy field A young person wearing a black bucket hat and a red and black jacket is practicing archery with guidance from an instructor A group of six people is on an outdoor artificial turf sports field, engaging in a casual football game A group of children wearing helmets and harnesses stand in front of an indoor rock-climbing wall, watching others climb A child wearing a helmet and harness gliding on a zip line over a grass field A group of kids at the archery range, each drawing back their bows while facing the targets on a grassy field A young person wearing a black bucket hat and a red and black jacket is practicing archery with guidance from an instructor A group of six people is on an outdoor artificial turf sports field, engaging in a casual football game A group of children wearing helmets and harnesses stand in front of an indoor rock-climbing wall, watching others climb A child wearing a helmet and harness gliding on a zip line over a grass field
Research publication

Self-Reported Traumatic Brain Injury and Its Biopsychosocial Risk Factors in Siblings of Individuals with Neurodevelopmental Conditions

A person wearing a grey sweater standing outdoors with their head down, holding their head in their hands

The are many things that increase the risk of a traumatic brain injury (TBI) and influence the outcomes that follow. Our research has shown that the siblings of children with neurodevelopmental conditions were more likely to report a history of traumatic brain injury when compared to controls, and this was associated with siblings having a psychiatric diagnosis or other conditions (such as autistic and ADHD traits).

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What three words would you use to describe your relationship with your sibling with Down syndrome?

A colourful word cloud displaying various words and phrases in different sizes and colours. Prominent words include 'respectful,' 'caring,' 'loving,' 'awesome,' 'good,' 'great,' 'playful'