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Families of children with Down syndrome: what we know and what we need to know


Cuskelly, M and Hauser-Cram, P and Van Riper, M, Families of children with Down syndrome: what we know and what we need to know, Down Syndrome Research and Practice pp. 105-113. ISSN 0968-7912 (2008) [Refereed Article]

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2018 Down Syndrome Education International, Down Syndrome Education USA and/or associated organizations.

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DOI: doi:10.3104/reviews.2079


This paper provides a brief overview of what is currently known about families of children with Down syndrome. In addition, it highlights a number of issues that require further research if we are to have a thorough understanding of the impact of a child with Down syndrome on families as a system and on the individuals who make up that system. Some of these issues include the need for: 1) a more balanced perspective one that acknowledges both positive and negative aspects of the experience, 2) greater attention to the experiences of fathers, 3) more cross-cultural research and studies focused on cultural perspectives, 4) increased attention to the change in demands for families as the individual with Down syndrome ages, 5) more longitudinal studies, 6) greater variety in methodological approaches, for example greater use of qualitative approaches and observational methods, and 7) an increase in the use of statistical approaches that model change and test hypotheses about predictors of change in both parents and children.

Item Details

Item Type:Refereed Article
Keywords:Down syndrome, families, balanced perspective, cross-cultural
Research Division:Psychology
Research Group:Social and personality psychology
Research Field:Social psychology
Objective Division:Law, Politics and Community Services
Objective Group:Community services
Objective Field:Families and family services
UTAS Author:Cuskelly, M (Professor Monica Cuskelly)
ID Code:126534
Year Published:2008
Deposited By:Education
Deposited On:2018-06-15
Last Modified:2018-08-16

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