INVITATION TO PARTICIPATE IN RESEARCH

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INVITATION TO PARTICIPATE IN RESEARCH
Study Information for Parents Participating in Online Testing of the
Family-Centered Care Assessment
You are invited to participate in testing a new Family-Centered Care Assessment to measure the
ways in which health care providers support families of children and youth with special health
care needs.
A child has a special health care need if he or she has a medical, behavioral, or other health
problem that lasts for more than 1 year and for which he or she receives or does any of the
following:
Needs prescription medicine;
Uses more medical care, mental health, or educational services than is usual for most
children of the same age;
Is limited or prevented in his/her ability to do the things most children of the same age
can do;
Gets special therapy, such as physical, occupational or speech therapy; or
Receives counseling or treatment for an emotional, developmental, or behavioral
problem.
This information describes the research study and its purpose. Taking part in this study is
voluntary. You do not have to be in the study. You can print out this Invitation to Research and
keep it.
PROJECT TITLE:
Developing a Psychometrically Sound Parent Measure of Family-Centered Care
PRINCIPAL INVESTIGATOR: Lynn Pedraza, Ph.D.
WHY IS THIS RESEARCH BEING DONE?
This research is being done to develop a way to measure whether children, youth and families
are receiving family-centered care from their health care providers. Health care visits can be
more than a time for shots, ear exams, and school forms. Each visit is a chance for families -
parents, children, youth - and health care providers to work together. When everyone works
together:
Children are healthier;
Families feel supported;
Health care providers know more about families' needs;
The health care system improves.
This working together is called family-centered care.
This Family-Centered Care Assessment questionnaire is designed to:
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Help families and their child's health care providers have a better understanding of
family-centered care;
Help families know what to look for and ask for from the providers from whom their
children and youth get health care; and
Help health care providers that give health care to children, youth and their families look
at how well they are doing in giving family-centered care so they can improve what they
are doing.
To accomplish this, we want to be sure that the survey questions really measure what we need to
measure and can provide information on how well health care providers work with families.
WHAT WILL I BE ASKED?
After reading this information and agreeing to participate, you will be asked to take a survey
with a series of questions related to how you and your child experience health care. No names or
anything that can identify you or your child personally will be asked for. We will ask for your
child's age, type of special health care need and insurance status as well as your relationship to
your child (such as parent, grandparent, foster parent, other), race, ethnicity and the state where
you live (to be sure that we hear from all kinds of families across the country.)
In other questions, we will ask you to think about one of your child's health care providers who
sees you and your child on a regular basis, and to answer a list of questions about how they work
with you and your child.
You will also be asked questions about what kind of location your health care provider is in and
whether he/she is a primary care doctor or specialist.
ARE THERE ANY RISKS?
There are no anticipated risks. Your participation in this study will in no way affect the services
you and your child receive and no identifying information about you or your child will be
included in any part of the study or reports.
WILL I BE PAID FOR PARTICIPATING?
No, there is no payment or compensation for your participation. Your input will be very
valuable, however, in helping to develop the best tool to measure family-centered care.
WHAT ABOUT MY PRIVACY?
WHO CAN GET INFORMATION ABOUT ME?
There will be no information collected that can connect your answers or even the fact that you
took the questionnaire back to you. We will not have any information that identifies you, your
child, or your health care provider.
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IS MY PARTICIPATION VOLUNTARY?
Being in this study is voluntary. You do not have to be in it. You can stop replying to the
questions at any point in the survey. Nothing will happen to you if you do not complete the
survey. It will not harm your relationship with any of the people who provide you or your child
with health care or other services associated with your child's medical conditions.
WHAT IF I HAVE QUESTIONS OR PROBLEMS?
Please contact Clarissa Hoover at Family Voices Toll-Free: (888) 835-5669 x6 or
CHoover@familyvoices.org if:
You have questions about the study.
You have problems related to the study.
You have any physical or psychological discomforts related to the study.
WHO WILL HAVE ACCESS TO THE RESEARCH RECORDS?
Western Institutional Review Board® (WIRB®)
3535 Seventh Avenue, SW
Olympia, Washington 98502
Telephone: 1-800-562-4789 or 360-252-2500
E-mail: Help@wirb.com
Contact WIRB if you have any questions or concerns about your rights as a research subject or if
you have questions, concerns, or complaints about the research.
WIRB is a group of people who perform independent review of research.
WIRB will not be able to answer some study-specific questions. However, you may contact WIRB if the
research staff cannot be reached or if you wish to talk to someone other than the research staff.
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