Families of persons with Down syndrome: new perspectives, findings, and research and service needs

Abstract

To understand the families of offspring with Down syndrome, this article begins by describing the change in orientation--from "negative" to "stress-and-coping" perspectives--in studies of families of offspring with disabilities. In reviewing the existing studies, mothers, fathers, and siblings cope slightly better than family members of persons with other disabilities, a phenomenon called the "Down syndrome advantage." Beyond this more general finding, however, much remains unknown. Most studies examine only parental or sibling levels of stress or coping, leaving unknown the marital, occupational, health, educational, and other "real-world" outcomes for these family members. Increased research attention is needed to understand the life-span needs of families of persons with Down syndrome and the impact of cultural and sociocultural diversity on family outcomes. It will also be important to relate family outcomes to differences in the offspring's behaviors, development, relationships, medical conditions, psychopathology, and the presence (and effectiveness) of needed support services. Although these families have received some research attention over the past several decades, we now need to make family research in Down syndrome more concrete, more life-span, and more tied to characteristics of the individual with the syndrome and the family's surrounding support system.