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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