Lay summary
Neurodevelopmental disabilities, such as Down syndrome, autism spectrum disorder, and fetal alcohol spectrum disorder, are commonly associated with impaired orosensory (oral-related senses) functions, which can cause critical health issues, such as choking or severe malnutrition. As a case in point, US studies show that children with Down syndrome have 30-50% increased risk of death from choking. In Aotearoa New Zealand, information about feeding problems for children with neurodevelopmental disabilities is extremely scarce. This ‘blind-spot’ in our healthcare system requires urgent attention if we are to devise appropriate support to children with these disabilities, and their whānau and caregivers. The proposed project seeks to understand the extent to which NZ guidelines reflect the lived experience of caregivers and whānau of children with neurodevelopmental disabilities with respect to feeding disorders and dysphagia, leading to a actionable research roadmap, aligned with Te Tiriti o Waitangi, to support children with neurodevelopmental disabilities.