WS Sibling Study Seeks Volunteers

Hello from the lab of Elisabeth Dykens and Elizabeth Roof at the Vanderbilt Kennedy Center! My name is Melissa Maxwell. I am a graduate student with Dr. Dykens and Elizabeth Roof, and I have received a small pilot grant to conduct a study on the sibling relationship. We are happy to say that we now have official IRB approval to conduct a survey of the siblings of brothers or sisters with Williams syndrome, and I would like to extend an invitation to you to participate if you are interested.

The aim is to identify the range and correlates of outcomes that siblings experience - both the challenging and rewarding aspects of the sibling relationship - and how these effects might differ from siblings who have brothers or sisters with other types of developmental disabilities. We hope that this study garners some of the interests and concerns that families have voiced, and can lead to more effective supports for siblings - especially for siblings who will become caretakers when parents can no longer serve this role.

This study involves a 30 minute telephone interaction with a parent, a 30 minute telephone interaction with a sibling of your child with Williams syndrome, and a few short follow-up questionnaires that we will send via mail. There is no follow-up to the study, so participation for each individual is just one-time 30 minute participation, along with a little additional time required to fill out questionnaires.

Telephone interviews can be scheduled to take place at your convenience (including evenings and weekends) and we would be happy to conduct the parent and sibling interviews on different days depending on what suits your schedules. Both the sibling and parent will receive a $10.00 gift card for participating.

If you have any interest in participating or finding out more about the study, please e-mail Melissa Maxwell at m.maxwell@vanderbilt.edu or telephone (574) 261-6937. Thank you and we hope to hear from you!

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Please send mail to williamssyndrome@insightbb.com with questions or comments about this web site.

For additional information about Williams syndrome, please send an e-mail to hlenhoff@uci.edu.

For contact with other Williams syndrome families --

In the USA: please send e-mail to info@williams-syndrome.org

Outside the USA: please visit our International Williams Syndrome Support Groups page for contact information.