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

This paper provides a brief overview of what is currently known about families of children with Down syndrome. Inaddition, it highlights a number of issues that require further research if we are to have a thorough understandingof the impact of a child with Down syndrome on families as a system and on the individuals who make up thatsystem. Some of these issues include the need for: 1) a more balanced perspective one that acknowledgesboth positive and negative aspects of the experience, 2) greater attention to the experiences of fathers, 3) morecross-cultural research and studies focused on cultural perspectives, 4) increased attention to the change indemands for families as the individual with Down syndrome ages, 5) more longitudinal studies, 6) greater variety inmethodological 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 changein both parents and children.