Research Discovery
The studies this project has conducted
Featured research studies
A mixed methods systematic review of sibling wellbeing
Read more about A mixed methods systematic review of sibling wellbeing
A mixed methods systematic review of psychosocial interventions for siblings
Read more about A mixed methods systematic review of psychosocial interventions for siblings
A network analysis of sibling self-reported risk, resilience, and mental health
Read more about A network analysis of sibling self-reported risk, resilience, and mental health
Further publications
Changes in self-reported risk and resilience factors associated with mental health of NDC siblings over one year
What did we do?
We followed-up participants from the 2021 survey, and asked them the same questions 15 months later, in 2022. Of the original 715 participants, 277 responded (134 NDC and 143 non-NDC siblings), aged between 9 and 38 years.
What did we find?
The NDC siblings still had high rates of mental health diagnoses and symptoms of poor wellbeing after 15 months, especially anxiety and depression. Self-reported sleep problems at the time of the first survey strongly predicted depression and anxiety the following year. We also noticed some siblings reported new psychosis symptoms.
Stay tuned! We will post the link to our publication here soon.
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)
Neurocognitive and self-reported mental health of NDC siblings using questionnaires and remote online cognitive testing
What did we do?
During our 2022 survey, we asked siblings to complete online cognitive tests to measure executive functioning, which are the mental processes that help us to plan, focus attention, remember, and juggle multiple tasks (we used adapted versions of the backward Corsi span, N-Back 2-back task, Stop Signal Task, Sustained Attention to Response Task, and the Wisconsin Card Sorting Test). 128 siblings aged 11-27 years completed all five tests (64 NDC and 64 non-NDC).
What did we find?
NDC siblings had poorer executive functioning on all five tasks compared to non-NDC siblings. Siblings of autistic persons and FASD had more difficulties compared to other groups, and also poorer self-reported cognitive skills and mental health than other NDCs siblings. We also found that negative emotionality (i.e., anxiety, sadness, worry) and sleep problems at the time of our first survey predicted worse cognitive test performance the following year.
Psychosocial and cognitive associations with suicidal thoughts and behaviours amongst NDC siblings
What did we do?
In our 2021 survey, we also asked siblings (aged 13+) questions about if they had ever self-harmed or experienced suicidal thoughts and behaviours. Of the 715 participants, 267 gave responses (aged 14-27 years).
What did we find?
NDC siblings had higher current self-harm compared to non-NDC siblings (19% versus 14%), nearly three times higher suicidal ideation (26% versus 9%) and over four times higher rates of suicide attempts (18% versus 4%). We found self-reported cognitive inflexibility, alexithymia (difficulty recognising and expressing emotion), bullying, depression, inattention, and eating or psychotic disorders predicted suicidality.
How would you describe your sibling in 3 words?
Here’s how some young people described their sibling with Down syndrome to us
The Language Project
What did we do?
Using a national online survey, we explored preferences of the use of identity-first and person-first language, and how this preference is influenced by different situations, including type of subject, disability, disability connection, disability pride, social model, and level of contact.
What did we find?
508 participants completed the survey. Identity-first language was significantly preferred by autistic and deaf participants, while person-first language was preferred by people with disabilities when communicating about others, and by family members, professionals, and community members.
Evans, RL (2021). Investigating Preferences Towards Identity-First Versus Person-First Language Regarding Disability. Honours Dissertation, Curtin University.