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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444


Wednesday 19 September 2012

Survey on sleep disorders in children with Down syndrome

Ph D candidate, paediatric nurse, Shervin Chirchill is recruiting families of children with Down syndrome to participate  in an online survey about their children's sleep habits.  We have checked with Shervin that responses are welcome from around the world, as long they are made in English. Participants will also be eligible to enter a draw for a gift card that can be mailed outside of the US.  

Sleep disorders are a significant issue for people with Down syndrome of all ages, including children, so we encourage you to consider contributing, and/or passing this information on to a family that can:

I am mother to a 16 year old son with Down syndrome, and also a doctoral student at the University of Washington's School of Nursing. I have been a health researcher for the past 15 years - with a focus on children with special health care needs for the past 11 years, while working at Seattle Children's Hospital. 

 I decided to pursue a doctoral degree four years ago because I was interested in designing research studies that focus on the health and well-being of children with Down syndrome. I am most interested in designing interventions to minimize health problems in our children and maximize their health and well-being as much as possible through preventive measures. 

Prior to designing interventions however there is need for knowledge about what needs to be done.


To this end I have designed my dissertation research to focus on gathering information about sleep and activity patterns of children with Down syndrome who are 5 to 18 years old. There is a great need for research in this area and little has been done to find out about parents' perceptions of sleep and activity habits of their children with Down syndrome. 

We know from previous studies that some of our children with DS can be at risk for sleep problems and we know they can also be at risk for overweight and lower amount of physical activity than their typically-developing peers. But we do not know the details of our children's sleep habits and activity habits as a population.

This is why, along with my professor and advisor, Dr. Gail Kieckhefer, PhD, ARNP, I am inviting you, if you are a parent, to participate in an online survey for parents of children with Down syndrome and their typically-developing friends. The survey will take approximately 30-45 minutes to complete online. 

 If you are a professional serving families who have a child with DS, or if you are a family member of a child with Down syndrome, I invite you to inform the parent of the child you know to participate in this survey.

The survey is secure and does not ask for any sensitive information. There are no questions about income or race/ethnicity - only questions about child's sleep and activity habits, some questions about parents' sleep and family environment, and some background information about child's health. There is also no identifying information within the survey. 

I will need the e-mail address of the parent to send a private survey link to them. If you are, or someone you know is, interested in taking the survey the first step is to contact me to get more detailed information about the survey and how to access it.

In the end of the survey the parent will be asked if they have a friend a relative with a typically developing child who would be willing to participate in the survey as part of a comparison or "control" group. The parent need not share the name or e-mail address, only to give the friend or relative my contact information for them to get in touch me to receive a survey link.

There are no direct benefits to parent or child; only that taking the survey may spark an interest in finding out more about sleep and activity for children with Down syndrome, or perhaps encourage the parent to discuss sleep and activity issues with their family health care provider.

Otherwise by participating you will only invest your time in helping advance research in issues related to children with Down syndrome.

Please contact me if you wish to participate in the survey or if you have any questions. You may send me e-mail at shervinc@uw.edu, or call me at 425-785-5706.

Most sincerely,
Shervin
Shervin S. Churchill, MPH, PhD Candidate
Department of Family and Child Nursing
School of Nursing
University of Washington, Seattle

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