Siblings of individuals with neurodevelopmental disabilities: Exploring dynamic networks of risk and resilience to enable early identification, intervention, translation, and implementation of sustainable scalable change.

Miss Brittany Mann1,2

1Telethon Kids Institute, Subiaco, Australia, 2The University of Western Australia, Crawley, Australia

Siblings of individuals with neurodevelopmental conditions may experience joys and struggles associated with the sibling experience. Previous research has highlighted both the increased risk of psychosocial and behavioural difficulties in these siblings compared to controls, and also the likelihood of more opportunities for growth and resilience.  There is a need to understand more about the challenges of the sibling experience and the benefits of having a sibling with a developmental disability. Using a strengths-based resiliency approach, with quantitative network analysis and qualitative exploration, the socioemotional, behavioural, and neurocognitive outcomes of these siblings can be examined in a holistic manner. Data collected will be used to extend our understanding of risk and resilience factors influencing sibling wellbeing outcomes, and identify determinants of wellbeing. The results of the first four Phases of this PhD will aim to identify  modifiable risk and resilience factors which can be targeted for early identification and implementation of sustainable change through supports and services, and will be used in the fifth Phase, the Sibling Summit. Siblings’ risks and resilience will be comprehensively explored from a critical realist perspective, beginning by investigating the unique psychological, behavioural, social and cognitive profiles of siblings of individuals with developmental disabilities, in order to identify prevalence of psychological disorders in this population, and implications for support and treatment. Risk, resilience, and biopsychosocial factors will be examined with individual, family, and systems-level variables from both a categorical (reported diagnoses) and dimensional (spectrum) approach using network analyses and psychometrics for instrument analysis and creation. This will determine how clinical presentations and psychosocial developmental trajectories are predicted and modified by the interactions of individual and external variables. Siblings’ voices will be heard through innovative qualitative methodology to identify their strengths, difficulties and needs, wishes and future dreams.


Biography:

Telethon Kids Institute researcher investigating siblings of children with neurodevelopmental disabilities. Developmental trajectories of children with Rett syndrome, autism, and intellectual disability. Early identification, intervention, translation, and scalable sustainable change. Risk and resilience biomarkers. Youth mental health. Transdiagnostic network analysis. EEG and TMS-based biomarkers for diagnosis or prediction of treatment response. Bayesian statistics. Twitter: @NeuroBrittany