University Of Tasmania

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

journal contribution
posted on 2023-05-19, 18:52 authored by Monica CuskellyMonica Cuskelly, Hauser-Cram, P, Van Riper, M
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.


Publication title

Down Syndrome Research and Practice






Faculty of Education


Down Syndrome Educational Trust

Place of publication

United Kingdom

Rights statement

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

Repository Status

  • Restricted

Socio-economic Objectives

Families and family services

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