Babies and children with Down syndrome have a genetic variation. Whilst they share some common features, they are all unique individuals with their own abilities, needs, interests and aspirations. Down syndrome is not a disease and people who have Down syndrome are not ill. Everyone with Down syndrome should receive early support to meet their needs, and families and carers should receive the help they need to enable them to guide their child’s development.
iHV Resources
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Developed in collaboration with topic experts, health visitors, and other professionals, our resources draw on the latest available evidence at the time of publication. Each resource is produced through a robust quality assurance process and peer reviewed to ensure accuracy, relevance, and strong alignment with health visiting practice.
19 June 2025 - Improving the lives of babies and children with SEND
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🔎 iHV Research
Improving the way healthcare professionals deliver different news to families during pregnancy or at birth: a qualitative study
Authors: Mugweni E, Goodliffe S, Jaswal S, Walker M, Emrys-Jones A, Adams C, Kendall S.
This study aimed to explore the lived experience of delivering or receiving news about an unborn or newborn child having a condition associated with a learning disability (including parents of babies with Down syndrome). The study examined what was working well in this area, the gaps in practice, as well as support and training needs, in order to use the study findings to develop a corresponding training intervention that corresponds with parents’ needs and experiences.
🔗 Read here
Mugweni E, Goodliffe S, Jaswal S, Walker M, Emrys-Jones A, Adams C, Kendall S. Improving the way healthcare professionals deliver different news to families during pregnancy or at birth: a qualitative study. Prim Health Care Res Dev. 2021 Mar 29;22:e10. doi: 10.1017/S1463423620000651. PMID: 33775272; PMCID: PMC8101073: https://pmc.ncbi.nlm.nih.gov/articles/PMC8101073/.
External Resources
Down Syndrome UK (DSUK) - Resources - Down Syndrome UK
Positive About Down Syndrome (DSUK) - A website by parents for parents and parents-to-be.