Sunday, May 15, 2011

Please take time to complete this survey about families with a child with Down syndrome

This is from Marcia Van Riper, a nursing professor at University of North Carolina School of Nursing

Update on Study about Adaptation and Resilience in Families of Children with Down Syndrome
During the past year, many of you were kind enough to take time out of your busy life to complete our online survey about adaptation and resilience in families of children withDown syndrome. In addition, many of you expressed interest in being interviewed. To date, almost 250 parents have completed the survey. As far as the interviews, I have conducted around 35 interviews, but plan to do many more now that the semester has ended here at the University of North Carolina School of Nursing were I teach.
The main reason I am emailing you today is to let you know that there is still time to complete the survey if you have not yet had time to do it (or if you started it, but did not find time to finish it). Also, if your partner or spouse has not yet had time to complete the survey, I hope you will encourage him or her to do so. Currently the majority of the parents who have completed the survey are mothers (190 mothers and 58 fathers). I believe it is very important to hear from both mothers and fathers, so again, I hope you will encourage your partner or spouse to complete the survey. In addition, you are welcome to share the links to the survey with other parents of children with Down syndrome. Currently, we have versions in English and Spanish. Soon we will have versions in Dutch, Italian, Japanese, Korean and Portuguese. Ultimately, my goal is to collect data from 2,000 to 3,000 parents of children with Down syndrome. Then, to make sure this information is shared in both the popular media and the literature health care professionals read. Your stories are very powerful stories, ones that will help change attitudes about life with Down syndrome, as well as lead to improved outcomes for individuals with Down syndrome and their families.
Here are the links –
English Version

Spanish Version

Thank you to all of you who have already completed the survey and/or been interviewed. I have been doing work with children with Down syndrome and their families for over 25 years, and truly you and your children have been my best teachers.
Best Wishes,

Marcia Van Riper, PhD, RN
Associate Professor Chair Family Health Division
School of Nursing/Carolina Center for Genome Sciences
University of North Carolina at Chapel Hill, NC
CB #7460 Carrington Hall Chapel Hill, NC. 27599-7460
President, International Family Nursing Association

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