Caregiver Study at Kennedy Krieger

September 14, 2008 Kyron 3 Comments

Thanks to Johanna Mattern Allen for forwarding this information to me.

Kennedy Krieger has a special place in my heart. It’s a hospital in Baltimore, Maryland which is only for special kids like ours. They are located within the Johns Hopkins campus and have an incredible wealth of talent available to them. Because of this, not only are they able to do some amazingly wonderful things in treating our kids but they are at the forefront of doing some spectacular research as well. Johanna sent me the following notice that I felt compelled to share with all of you. As caregivers some of us special parents may qualify for this study and I know that by getting participants to answer these questions they are best able to help others. So if you have some time and you fit their requirements, please consider helping the wonderful people at KKI out.

National Institutes of Health and Johns Hopkins Research Project  – Share Your Experiences and Help Others

Dear Parents and Caregivers,

You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University.

*Why is this study being done?*

To learn more about how caregivers adjust to having a child with Down syndrome (DS). We are interested in hearing from caregivers who may be learning to adjust and also from caregivers who feel well-adjusted.

*Who can take part in this study?*
You must be 18 years of age or older and must be the primary caregiver for a child with DS. Please fill out only one survey per household.

*What is involved in this study?*

There is one survey that takes approximately 20-30 minutes to complete. It asks about your thoughts and feelings about your experience as a caregiver to your child.

*What are the risks of the study?*
There are no known risks of taking part in this study. If taking the survey makes you feel upset, you can stop taking the survey at any time. If it causes you to become upset or worried about yourself or your child, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.

*Are there benefits to taking part in the study?*

You will not personally receive any benefits from taking part in this study. We hope to learn more about how caregivers adjust to having a child with DS and pass that understanding on to help caregivers in the future.

*Do I have to participate?*
No, you do not have to take part in this study if you do not want to. Your decision to take the survey will not have an affect on your child’s healthcare. If you begin the survey, you can choose to skip any question that you don’t want to answer. You can also stop taking the survey at any time. If you finish the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.

*Who else will know that I am in the study?*

We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This study will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.

*How do I participate?*
The survey can be found online at www.downsyndromesurvey.com. If you prefer to complete a paper version of the survey, please contact Megan Truitt at (301) 443-2595 or mtruitt@mail.nih.gov to receive the survey and a pre-addressed and stamped return envelope. Any contact information you give to the researchers in order to mail the survey will be immediately destroyed after it is mailed. Also, if you are more comfortable completing the survey over the phone, please contact Megan Truitt (see contact information below) to arrange a time to do so.

Thank you for your interest and time! If you are taking this survey online, please print a copy of this consent form so that you have the researchers’ contact information.

Also, after the study is complete, we plan on giving out a short summary of the results through the recruitment sources as a way of saying thanks for participating. If interested, please check the Kennedy Krieger Institute website below for the study summary: www.kennedykrieger.org/kki_cp.jsp?pid=1399

Megan Truitt
Associate Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 443-2595
mtruitt@mail.nih.gov

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979
barbarab@mail.nih.gov

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Categories : General

Currently there are "3 comments" on this Article:

  1. James says:

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  2. Stacey says:

    I like what you write—and the positive things you do
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  3. Vern M. says:

    I would encourage anyone who meets the criteria to participate in this study, simpley because the data will end up doing such good things for other people in the same situation. Potentially, the information and insight collected through this survey can be put to immediate use in any number of caregiver resources, allowing people new to caregiving an opportunity to better prepare themselves for the challenges they face.

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