The Sibling Project

What did we do? We searched every sibling research study on sibling self-reported mental health and wellbeing published between 2000 and 2022. Out of 2,437 studies we included 81 studies.

What did we find? Siblings who had a brother or sister with a neurodevelopmental condition had higher risk of psychiatric disorders, especially anxiety and depression, and reported a poorer quality of life. We also found evidence for sibling resilience and growth. The most common risk for poor mental health was the symptom severity of their sibling with the neurodevelopmental condition and the most frequent resilience factor was sibling adaptive coping skills (like emotion regulation, acceptance, hope, optimism).

Implications and future directions: These resilience factors can be targeted with interventions and focused on in support groups, while the risk factors can be addressed with public health reform to help siblings and their families.

Want to read more? Wolff B, Magiati I, Roberts R, Pellicano E & Glasson EJ (2022). Risk and resilience factors impacting the mental health and wellbeing of siblings of individuals with neurodevelopmental conditions: A mixed methods systematic review. Clinical Psychology Review, 98, 102217. https://doi.org/10.1016/j.cpr.2022.102217

What did we do? We looked for papers on psychosocial interventions and support groups designed to help siblings of children with a neurodevelopmental condition. We explored who might benefit from these interventions the most, and how siblings experienced these targeted interventions. Out of 2,025 studies published between 1999 and 2022, we included 24 in our review.

What did we find? Siblings who participated in support groups or individualised interventions improved on self-esteem, coping, sibling relationships, and knowledge of neurodevelopmental conditions. Unfortunately, there were not large improvements seen for symptoms of anxiety, depression, or quality of life. More effective interventions included psychoeducation and parent education components. In interviews post-intervention, siblings said they enjoyed and benefited from the group programs, but more research is needed on the best way to support these siblings.

Implications and future directions: The characteristics of interventions which most benefit siblings can be built upon in future sibling support programs, while further research could design interventions which reduce depression and anxiety.

Want to read more? Wolff B, Magiati I, Roberts R, Skoss R & Glasson EJ (2022). Psychosocial Interventions and Support Groups for Siblings of Individuals with Neurodevelopmental Conditions: A Mixed Methods Systematic Review of Sibling Self-reported Mental Health and Wellbeing Outcomes. Clinical Child and Family Psychology Review. https://doi.org/10.1007/s10567-022-00413-4

What did we do? We co-designed a large survey to ask siblings aged 8 and older about their experiences of wellbeing, risk and resiliency in their lives. We released the survey in 2021, with responses from 715 siblings (235 neurodevelopmental condition (NDC) and 480 non-NDC) – their average age was 22 years (range 8 to 65 years). Their siblings with neurodevelopmental conditions had diagnoses of autism, ADHD, cerebral palsy, Rett syndrome, 22q11.2 deletion syndrome, MECP2 duplication syndrome, fetal alcohol spectrum disorder, intellectual disability, and other rare genetic conditions.

What did we find? The NDC siblings reported more depressive and anxious symptoms than the siblings of people without NDCs, and 72% of them reported at least one psychological diagnosis compared to 37% of controls. Self-reported sleep and post-traumatic stress disorders occurred often with other conditions such as depression, anxiety, and eating disorders.

Implications and future directions: This research highlights the need for accessible sibling-specific supports and also for health practitioners to be aware of co-existing conditions like sleep problems, trauma and anxiety which are common in siblings.

Want to read more? Wolff B, Rosa V F, Magiati I, Cooper MN, Roberts R, Skoss R & Glasson EJ (2023). Individual-level risk and resilience factors associated with mental health in siblings of individuals with neurodevelopmental conditions: a network analysis. Developmental Neuropsychology. Ahead of print. https://doi.org/10.1080/87565641.2023.2190119

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. 

Implications and future directions: Sleep is a powerful intervention target to help these siblings improve their wellbeing.

Want to read more? Stay tuned! We will post the link to our publication here soon.

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.

Implications and future directions: Learning environments at school and health practitioner support could be tailored to optimise siblings’ cognition, and also target mental health difficulties which impact brain function.

Want to read more? Wolff, B., Franco, V. R., Magiati, I., Pestell, C. F., & Glasson, E. J. (2023). Neurocognitive and self-reported psychosocial and behavioral functioning in siblings of individuals with neurodevelopmental conditions: A study using remote self-administered testing. Journal of Clinical and Experimental Neuropsychology, 0(0), 1–24. https://doi.org/10.1080/13803395.2023.2259042

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.

Implications and future directions: Parents and health practitioners need to be aware that siblings may have suicidal thoughts which they aren’t talking about. We think screening for some of these risk factors will inform suicidal behaviour intervention and prevention programs for at-risk siblings.

Want to read more? Wolff, B., Franco, V. R., Magiati, I., Pestell, C. F., & Glasson, E. J. (2023). Psychosocial and neurocognitive correlates of suicidal thoughts and behaviours amongst siblings of persons with and without neurodevelopmental conditions. Research in Developmental Disabilities, 139, 104566. https://doi.org/10.1016/j.ridd.2023.104566

If you are experiencing suicidal thoughts, please contact the Mental Health Services in the infographic below which are available 24/7, or call the Mental Health Emergency Response Line: 1300 555 788 (Perth) or 1800676822 (Peel region).

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.

Implications and future directions: Diverse preferences exist and are dependent on context, which can be used in future education and guidelines around language.

Want to read more? Evans, RL (2021). Investigating Preferences Towards Identity-First Versus Person-First Language Regarding Disability. Honours Dissertation, Curtin University.