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How long has the project been running?
We started this project in the fall of 1993 and
have been visiting families for over ten years!
We're currently finishing up a few of our fourth
and fifth visits with families.
How many families are participating
in this study?
The research study began with 152
families. Of the 152 families that started with
us, 143 are still participating in the study.
We thank each and every family for continuing
to participate!
Is this really the last visit?
Our fifth visit with your family will
be the last time that we will visit with you in
person. If we do decide to contact you in the
future, it would likely be to have you fill out
some brief questionnaires and return them to us
in the mail. Again, your participation at that
time would be reimbursed and voluntary. Thanks
for all your hard work over the past 10 years!
How can families benefit from participating
in the study?
Families who participate in this
study get a chance to spend time interacting with
each other and talking about issues that are of
concern to them. In addition, families are helping
us gain information about the development of children
and adolescents with spina bifida. Other families
with children with Spina Bifida and Health care
professionals that work with such families will
benefit from our findings. We have published numerous
papers that detail our results and we frequently
present our findings at national conferences.
Why are we studying spina bifida?
Children and teenagers with spina bifida face
a variety of issues in their daily lives that,
at times, can be challenging for them (as well
as their families) to manage. Through our research
study, we are trying to better understand ways
in which families cope with these issues, as well
as ways in which medical professionals, psychologists,
and professional organizations might be able to
assist families. The information that we obtain
from you is used in presentations at psychology
conferences, and in meetings with doctors, nurses,
and other health care professionals to improve
the services provided to children and adolescents
with spina bifida, and to help you and others
obtain the support and resources you may need.
How are you using all the info that
you receive from the families?
We bring all the questionnaires and
tapes back to Loyola University, where we enter
the data (without including names) into our computers.
Next we use all this information to answer our
research questions about families and adolescent
development. Next, we write our results into articles
that we submit to psychology journals or present
at conferences to those who work with adolescents
who have spina bifida. Our primary goal is to
learn more about how families cope with spina
bifida so that we can find new ways of providing
individuals with spina bifida and their families
with the support and resources you may need.
Why do the home visits last so long?
Why are the questionnaires so repetitive?
We try to keep the visits as enjoyable
as possible, but we realize that filling out the
questionnaires can become a little tedious, especially
because some of them may be somewhat repetitive.
The reason that some of the items on different
questionnaires overlap is because many of them
are designed to assess related topics, and each
questionnaire is designed with its own system
of scoring and interpretation. If we were to take
out those questions, the scoring and interpretation
methods would no longer be valid. As a result,
we have to present the questionnaires in their
complete form, so we can adequately interpret
the results. We do try to keep the overlapping
items to a minimum, whenever possible. We are
very grateful for your patience!
What should we do if we move?
If your family is planning on moving,
please let us know! You can contact the CHATS
office at (773) 508-8908 and leave us a message
with your new phone number and address. You can
send a written notification to us at the following
address: Grayson Holmbeck, Ph.D., Department of
Psychology, Loyola University Chicago, 6525 N.
Sheridan Rd., Chicago IL 60626. You can e-mail
Dr. Holmbeck at gholmbe@luc.edu.
When can we see the results?
Many of the families in the study have been interested
in hearing about our findings. In order to not
bias your reponses to our questionnaires in any
way, it's important that we don't share too much
information about what we've found with you until
after all of the data have been collected. As
soon as we've finished collecting all of the data
and have had a chance to enter it, we'll send
each family a copy of a report summarizing our
findings. We think that this information will
be very interesting and useful to all of you,
and we really appreciate your patience in waiting
to see the results.
How do we compare to other families?
We are interested in how families in general deal
with the changes that occur during adolescence.
We do not look at the results for each individual
family. Thus, regretfully, we cannot provide you
with information specific to your family. However,
we hope that our more general findings will be
helpful to you.
What are the best ways to parent?
Research on parenting has shown that authoritative
parenting generally encourages the best development
for children. Authoritative parenting indicates
a parenting style whereby the parent sets limits,
yet is flexible and encourages independence in
the child. Parents are communicative with their
child and encourage their child to communicate
with them. These parents are viewed as supportive,
warm, and nurturing towards their child. For more
info click here.
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