Newswise — The tumultuous feelings parents have when they first learn their child will be born with Down syndrome give way to joy and resilience, according to preliminary data from a study by researchers at Kansas State University and Texas Tech University.
Briana Nelson Goff and Nicole Springer, both mothers of a child with Down syndrome, can attest to the findings. Goff is associate dean for academic affairs in the College of Human Ecology and professor of family studies and human services at K-State, and Springer is director of the Texas Tech University Family Therapy Clinic.
The two researchers, who met while completing their doctoral work at Texas Tech, reconnected after learning of their personal connection as parents. Their study is called "My Kid Has More Chromosomes Than Yours! The Journey to Resilience and Hope in Parenting a Child with Down Syndrome."
"The goal of our study is to help parents and professionals understand that having a child with Down syndrome isn't the end of the world; it can be a very positive experience," Goff said.
The researchers collected data through an online survey for parents of children with Down syndrome. Together with their student teams, they are analyzing the more than 500 responses they’ve received since the survey went live October 2009.
The researchers found that the parents' experiences in first learning their child had Down syndrome had similarities, regardless of whether the diagnosis was before or after the birth.
"The majority said it was very devastating, and went through periods of depression, grief, mourning and shock, and felt scared, angry, disappointed or helpless," Goff said.
However, once those initial feelings subsided, parents reported positive experiences and joy raising a child with special needs.
"Several parents said the time to bond with their child was one of the most important keys to their resilience. They had to take that time to realize what they were facing, which then helped their adjustment," Goff said.
Experiences with medical professionals was an emerging theme not directly polled, Goff said. Around 20 percent of the parents voluntarily reported negative experiences, compared to 8 percent who said their experiences were positive. Goff said often -- specifically for parents who completed prenatal screening -- the negative experiences involved medical professionals discussing abortion as the only option or parents feeling pressured into making a decision to abort.
"This was the biggest surprise to come from the results," she said. "I would expect this answer from parents who had their child 20 years ago, but not from parents who had their child within the past five years.
"Honestly, though, I can't imagine what it’s like for a medical professional," Goff said. "Having a baby is such a joyous occasion. So for an obstetrician to deliver what is potentially some of the worst news a parent could ever experience is certainly a difficult situation to face. But that's part of what this study is for: to get professionals information so they know how to respond in ways that are most helpful to the parents and children."
Goff said the parents reporting positive interactions were presented other options, such as adoption or raising the child. Some were even referred to local families raising a child with Down syndrome.
Once all the data is collected and interviews are conducted with selected parents, Goff and Springer will publish a book with statistical information and personal stories from parents.
K-State students involved in the study are Courtney Frantz, sophomore in family studies and human services, Derby; Taylor Veh, junior in microbiology and premedicine, Hutchinson; Laura Cline, a May 2010 bachelor's graduate in family studies and human services, Overland Park; Madison Peak, junior in nutritional sciences, Shawnee; and Courtney Tracy, junior in elementary education and humanities, Franktown, Colo.
The survey is ongoing and is at https://surveys.ksu.edu/TS?offeringId=148766.
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