It is important that women who are or may become pregnant have up-to-date information about Down syndrome (DS). Developing strategies for educating such women about DS require understanding their knowledge and their attitudes, beliefs, resources, and information needs. Few recent studies have examined the understanding of these issues among women of childbearing age, especially those in different age and racial-ethnic groups.
The present study used focus group discussions conducted among women of childbearing age to examine strategies for educating women about DS. A total of 111 women participated in 24 focus groups conducted in 2 US cities. All participants planned to have a child in the next year or were recently pregnant (and had a child ≤3 years old without DS). Participants were further segmented by age groups (18–34 and 35–44 years) and by race/ethnicity (white, African American, and Hispanic). Focus group questions explored the women’s knowledge about DS, knowledge, attitudes, and beliefs about quality of life for persons and families with DS, as well as available resources and information needs.
All women had some knowledge about DS, especially knowledge about facial characteristics and cognitive manifestations of DS. They frequently discussed older maternal age as a risk factor for DS. Most participants knew that DS is a chromosomal disorder. However, many had misconceptions about DS and lacked knowledge in several areas. Most participants were unaware of the birth prevalence of DS in the United States and uncertain about their own risk. The majority believed that having a child with DS would disrupt their lives. Participants had limited knowledge of maternal and paternal risk factors and the mental capacity or average life expectancy of affected children. Nearly all participants wanted stories to help explain what life is like for families with DS. Many Hispanic and African American participants had only seen or knew of white persons with DS; they asked for culturally diverse educational materials. Information resources mentioned by many participants were the Internet and health care providers. Few participants who had a young child reported receiving substantive information about DS from their health care provider.
These findings suggest that women should receive up-to-date tailored clinical information about DS and also information about what life is like for families with DS.
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA; and RTI International, Research Triangle Park, NC.