Resilience in families with Down syndrome


One out of every 691 newborns in the United States has Down syndrome, yet the birth of a child with Down syndrome is an unexpected event for most families. Because of this, many new parents experience a great deal of uncertainty following the birth of a child with Down syndrome. Many are worried about how their child’s diagnosis will affect their family. Dr. Marcia Van Riper has an ongoing program of research concerning factors that contribute to adaptation and resilience in families of children with Down syndrome.

When Dr. Van Riper started her program of research, much of the focus was on negative consequences. For example, most researchers in this area were assessing levels of stress, depression, anxiety, marital, and family dysfunction. However, in her initial interactions, Dr. Van Riper noted that families she met with did not look or sound like the families of children with Down syndrome in the literature. That is, rather than using words like burden, tragedy, and suffering to describe their child with Down syndrome, families were using words like joy, challenge, and thriving.

Her research has since supported her observations by showing that negative consequences are not inevitable following the birth of a child with Down syndrome. In fact, most families adapt well and many actually thrive. “Nurses and other health care providers can play a critical role in how families respond to the birth of a child with Down syndrome,” says Dr. Van Riper. “We can set the tone. When we give balanced, up-to-date information we help families move forward on their journey. In contrast, when we give biased, outdated information we make the journey more difficult.”

She is now conducting the pilot study for a large, cross-cultural investigation concerning adaptation and resilience in families of children with Down syndrome. The study’s main purpose is to examine how culture, interactions with health care providers, and family factors all contribute to adaptation and resilience in these families. Her overall goal is to develop a body of knowledge that health care providers can refer to when they inform families their child has Down syndrome. She also hopes to identify the best areas for targeting interventions with families of individuals with Down syndrome.

Through surveys and in-person or telephone interviews with families Dr. Van Riper and her collaborators are gathering information on the family’s initial experience, decisions they made, and how they are doing at the present time. She is looking to eventually include over 1000 participants from at least six countries. Expanding to other countries is important, she says, so that the study takes into account cultural differences.

The questionnaire used for the survey has been translated into Korean, Spanish, and Taiwanese, and the Dutch and Italian versions are almost finished. She has also had interest from contacts in Thailand, Japan, and New Zealand.

“Families and individuals with Down syndrome have been my best teachers,” she said. “They have helped me figure out what direction to go next and which areas are important. I never wanted to be one of those researchers that did research just to do research. I wanted to do research that was meaningful to people.”