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The aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective.
The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore spirituality.
Leisure participation for school-aged children with Down syndrome.
Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family-centred care.
Rates of Down syndrome (DS) show considerable international variation, but a systematic assessment of this variation is lacking.
The aim of this study was to examine trends of Down syndrome (DS) in relation to maternal age and termination of pregnancies (ToP) in 20 registries
This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents.
While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease.
Our vision is to increase awareness and improve outcomes for children with movement disorders and other neurodevelopmental conditions impacting on motor function.
We aim to ensure that high quality outcome measures are available to evaluate treatments and services for children with disability rigorously. We aim to translate our research into resources to support families, carers and clinicians.