Newswise — Texas Tech University and Kansas State University researchers are seeking participants in an online survey to help develop support information and resources for parents of children with Down syndrome and the professionals who work with them.
Nicole Springer, director of Texas Tech’s Family Therapy Clinic, and Briana Nelson Goff, a professor in family studies and human services at K-State, will use the survey data to pinpoint common practices in families who have successfully adjusted to a Down syndrome diagnosis.
Springer and Goff, both mothers of children with Down syndrome, are seeking to broaden existing academic literature on the subject. However, they also are working to produce consumer books providing research-based information for parents. This will include a balanced assessment of day-to-day life in the home of a child with Down syndrome.
“Most of what is available to parents in bookstores provides anecdotal rather than research-based information – or focuses on interventions – but does not address the adjustment process for parents,” Springer said.
Responses will help the researchers glean information such as how parents coped with their child’s diagnosis and how it impacted their relationship and outlook on the future. Springer and Goff will supplement data from the surveys with in-depth qualitative interviews with selected participants.
Springer said she and Goff also are looking to develop training materials for medical professionals likely to give a diagnosis of Down syndrome, teaching them to present positives as well as potential challenges rather than focusing solely on worst-case scenarios.
“Doctors tend to paint a gloomy picture,” Springer said. “The termination rate for prenatal diagnosis of Down syndrome is around 90 percent, and I believe that rate is related to the bias of the person delivering the news and the subsequent fear it creates. We hope to learn more about the sources of fear and how parents move beyond it.”
The survey requires about 30-45 minutes to complete. Parents of children or adults with Down syndrome may participate at https://surveys.ksu.edu/TS?offeringId=148766.