Invitation to parents of children with Down syndrome to take part in research

"Adaptation and Resiliency in Families of Children with Down Syndrome"

The purpose of the study is to learn about factors that influence how families respond following the birth of a child with Down syndrome. This study is part of a larger cross-cultural study we will be conducting in at least 8 to 10 countries (Brazil, Ireland, Italy, Japan, Korea, Netherlands, Portugal, United Kingdom, and United States).

To date, over 600 parents have taken part in the study. If possible, we would like to collect data from 2,000-3,000 families.

Who can participate? If you are the parent of a child with Down syndrome, you are invited to participate. If you have a spouse or partner, he or she is also eligible to participate. Your child with Down syndrome can be of any age.

What will we ask you to do? We will ask you to complete an online survey (this should take approximately 20-30 minutes) and if you would like, we will interview you. Generally the interview will conducted by telephone or Skype. We expect the interview will take approximately 60-90 minutes. After you talk with us and complete the online survey we may contact you a second time if we need to clarify any information with you.

The project has been approved by the institutional review board for human subjects research at the University of North Carolina at Chapel Hill. If you agree to take part, all information you give will be confidential. No one except our research team will have access to your information.

If you wish to be involved in this research, please either email me or go to one of the links below to access the survey directly.

There is one link for mothers and one link for fathers. The surveys are exactly the same but if two people use the same computer to complete the survey, they need to use different links.)

If you agree to be interviewed, we will arrange to do the interview at a time that is convenient for you.

Link for mothers: https://www.surveymonkey.com/s/GZG7KW6

Link for fathers: https://www.surveymonkey.com/s/WBJL9ZF

Many thanks for your kind consideration.

Marcia

Marcia Van Riper, RN, PhD, FAAN
Professor, Chair, Family Health
University of North Carolina at Chapel Hill
Fulbright Scholar Ireland /President International Family Nursing Association
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