Families of children with Down syndrome

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Abstract
The paper presents an overview, from a personal perspective, of the key research findings of the longitudinal study of the Manchester Down Syndrome Cohort. The study began in 1973 and is currently visiting the families as the young people enter adulthood. At present over 100 families remain in the cohort and provide a representative sample of families of children with Down syndrome in the UK during these years. It is one of the largest and most detailed multifactorial studies in the field of Down syndrome. The overriding impression of the families and their child with Down syndrome is one of normality. The factors that influence the well being of all members are largely the same as those influencing any child or family. The majority of families do not exhibit pathology as a consequence of having a child with Down syndrome. Indeed the evidence points to positive effects for many families when one member has Down syndrome. The results also emphasise the diversity of families and of individuals with Down syndrome. Some families and children with Down syndrome are vulnerable and at risk. The research has begun to identify who these may be and suggest possible directions for more effective support and intervention.

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