Living Well Study Instructions and Timelines
[In MSWord format]

Date:      August 2007

TO:        Living Well Facilitators

FROM:   Kay DeGarmo
               319-353-7050
               kay-degarmo@uiowa.edu

RE:         Living Well Study Instructions and Timelines

This set of instructions accompanies the two documents you will be sent to initiate the study process with the participants in your upcoming Living Well with a Disability program.  The two study documents include a 1) consent letter, and a 2) revised health survey. 

1. Consent Letter:  This is the letter that explains the study and asks for the Living Well participants to sign a form to agree to take part in the study.  This letter is updated, reviewed and approved by the University of Iowa IRB each year.  Eventually, it will available to you online at the Living Well web site.  For the present, you will receive a copy of the form in regular and large print by mail.  If you need a different format or a Braille version of the form, please contact Brandee Toland at brandee-toland@uiowa.edu.   You will need to add your local contact information and make copies for all those who sign-up for the Living Well course.  The consent letter only needs to be signed once, at the beginning of the study process. Remember that participation in the study is strictly voluntary and that participants do not have to enroll in the study in order to take part in the Living Well program.
    

2. Revised Health Survey: The revised survey is now available and is being sent to you by mail.  As with the consent letter, the survey will be available for download from the Living Well web site in the future.  Be advised that the revised survey replaces both the screener and the old health questionnaire.  Make sure you have copies of the new survey for all of your Living Well program participants.  Everyone who enrolls in the Living Well training should receive a copy of the letter and survey.  Only those who consent to enroll in the study will receive a similar survey 30 days after completing the original Living Well course and again 6 months and 12 months after completing the original Living Well program. 

You should send the consent letter along with a copy of the heath survey to each individual who enrolls in your upcoming Living Well program about one week before the first training begins. Some of you may wish to take some time during the first class to explain and distribute the forms.  That is also OK. You will notice that the consent letter tells participants that they can ask for help from your agency in completing the survey forms.  This is especially important as the survey is not currently available in large print or Braille.

I would suggest that you spend a portion of your first Living Well session reviewing the study purpose and protocol, and answering questions about the study forms.  Please know I’m available to call anyone of your enrollees who has questions about the study that you don’t feel comfortable answering.

The consent letter and health survey should be completed by participants who agree to take part in the study prior to beginning the second Living Well program session.   

Once you’ve collected all the completed survey forms, place them in an envelope and send them on to your LWD Consultant:

Mike Hoenig
Center for Disabilities and Development
100 Hawkins Drive, 140A CDD
Iowa City, IA  52242

Please note that it is very important that the signed consent letter is securely attached to the individual participant’s health survey. We need to be able to attach a name to each survey so we can determine who is eligible for the study and who should receive follow-up health surveys.* We will notify you of who is eligible for the study so you know who to mail the follow-up surveys to at 30 days, 6 months and 12 months after completing the original Living Well course. You will need to keep the names, addresses, and phone numbers of your Living Well participants on file so that they may be contacted for follow-up.

To assure the confidentiality of each participant’s survey information, we ask that you limit the number of people who handle the consent and survey forms.  We also ask that you keep the completed consent letter and health surveys in a locked box or file until such time as you forward them on to me. 

Remember that is important that each participant gives his/her informed consent to enroll in the study.  You are authorized to pay participants $10.00 each time they complete and turn-in the study forms.  You will be reimbursed for this cost.  It is up to you to determine how best to handle participant payments.

I plan to send further instructions along with additional copies of the surveys each time you need to initiate a step in the study process.  I thought it would be easier for us to track all the study details rather than ask you to handle that locally. 

Good luck with the Living Well program.  I’m expecting a favorable outcome evaluation.

* Although we need to know the participant’s name for this phase of the study, please know that we will assign each individual a number before their information is entered into the data base and analyzed.  This method will help insure the confidentiality of the data.