Down syndrome research project

January 26, 2010

Passing this along for those who might be interested in participating.

This project is being conducted by a couple of PH. D. doctors out of

Texas Tech and Kansas State who both happen to have small children with

Ds.

" Down Syndrome Family Research

This research project explores the journey to resilience and hope

experienced by families with a child with Down Syndrome (DS). The study

will include both single parents and parents who are currently in a

relationship (married, dating, stepparent, etc.). For couples, each

partner will need to access the site separately and complete the

questions independently, without sharing answers. You will be asked to

enter a common code word or series of numbers (up to 5 characters),

which will allow us to connect your answers for data analysis, but it

will maintain your anonymity and confidentiality.

Thank you for participating in this research study and sharing your

experiences!

PURPOSE OF THE RESEARCH:

This research will include online surveys and qualitative interviews

with parents that will explore the journey to resilience and hope

experienced by families with a child with Down Syndrome (DS). This

research will identify the key resilience factors in families who have

successfully navigated this difficult transition and provide important

information and resources for families facing this journey in the

future. Specific questions will ask participants how they coped with

their child's Down syndrome diagnosis, about their relationship as a

couple, and their hope and satisfaction with life. In addition,

qualitative questions will ask more about their initial response to the

diagnosis, their current attitude about the diagnosis, and other

specific experiences they have had as a parent to a child with DS.

We anticipate two primary outcomes from this project: 1) academic

publications and presentations based on the research data, and 2) a

consumer media publication for families with children with DS. The

consumer media publication for new parents of children with DS will

include the experiences of parents, in their own words, as well as

several key resources to help parents in this journey. "

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