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Family

Family

Photograph of child and motherFamily environments influence the development of all children, including those with Down syndrome.

Research studies indicate that the majority of families cope well with bringing up a child with Down syndrome. They find the resources to adapt and to cope with the additional needs of their child and continue to lead ordinary lives. In these families, brothers and sisters lives do not seem affected in negative ways in the long term and nor do marriage relationships, even though there may be times when life seems to be more difficult as a result of meeting the needs of the family member with Down syndrome.

However, some families find life difficult for a variety of reasons such as poverty, poor housing, significant health difficulties or behavioural difficulties in their children and lack of family, community and social supports. There is a lot of useful information from this research which can have practical relevance for families and services.

Further reading and resources

Books

Photograph of a child and his mother making sounds.

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Activities and achievements

The Trust has not carried out any significant research on family issues to date but Trust staff have reviewed the literature in a number of publications and have many years of personal and practical experience of the issues facing families.

They share this knowledge and experience on training events especially when working with families in the early months after their child's diagnosis.

Education

The Trust has published 2 books[1,2] containing a review of the information on family issues and need in the Down Syndrome Issues and Information series. Trust staff have published 1 paper in a peer-reviewed journal[3], 5 articles in other publications and presented 2 papers at conferences on family issues.

References

  1. Buckley, S. (2002). Issues for families with children with Down syndrome. Portsmouth, UK: The Down Syndrome Educational Trust.
  2. Cuskelly, M., Brown, I., Shearer, J. and Singh, B. (2006). Families of adults with Down syndrome. Portsmouth, UK: The Down Syndrome Educational Trust.
  3. Stores, R., Stores G., Fellows, B. & Buckley, S. (1998). Daytime behaviour problems and maternal stress in children with Down syndrome, their siblings, their non-intellectually disabled and other intellectually disabled peers. Journal of Intellectual Disability Research, 42, 3, 228-237.

A list of publications related to work in this area is available.