Return-Path: <nifl-health@literacy.nifl.gov> Received: from literacy (localhost [127.0.0.1]) by literacy.nifl.gov (8.9.3/8.9.0.Beta5/980425bjb) with SMTP id PAA20965; Thu, 17 Feb 2000 15:53:10 -0500 (EST) Date: Thu, 17 Feb 2000 15:53:10 -0500 (EST) Message-Id: <v04210103b4d204c15dc4@[146.186.96.31]> Errors-To: listowner@literacy.nifl.gov Reply-To: nifl-health@literacy.nifl.gov Originator: nifl-health@literacy.nifl.gov Sender: nifl-health@literacy.nifl.gov Precedence: bulk From: Barb Van Horn <blv1@psu.edu> To: Multiple recipients of list <nifl-health@literacy.nifl.gov> Subject: [NIFL-HEALTH:2180] Re: Consent and Confidentiality X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas Content-Type: text/plain; charset="us-ascii" ; format="flowed" Status: OR Deborah, You wrote: >A third-year medical student ...has asked our help in getting input from low >literacy adults with diabetes... > >We thought we would provide her with a list of our volunteer tutors and their >phone numbers. She will randomly call some of them to ask if they are aware >of whether their learning partner has diabetes. If by chance she finds a >tutor who knows his/her learner is diabetic, she will then discuss with the >tutor whether the tutor would be comfortable placing a call to the learner. >If so, the tutor would tell the learner about the project, and invite the >learner to call the medical student to participate in a short, oral >questionnaire on the phone about the take-home packet. As part of a university, we are required to obtain informed consent for any contacts that are part of a research or development project. And, we often work with adults with limited skills and adult educators. This is how we have handled the scenario you describe: The medical student would provide you, as the program director, with a description of her study including what she wants to do, who she'd like to talk with, and the parameters of their involvement. Then, you would set up a meeting for her to discuss the project with tutors, indicating that they should mention the project to the learners -- "looking for people with diabetes to help develop information for diabetes patients... do you know anyone who might be interested in helping with this project?" [If a group meeting couldn't be arranged, the director should notify the tutors about the project and that the researcher would be contacting them about adult learners' participation in the project.] The tutors should be given copies of the informed consent document and explanation of study to share with interested learners. If the adult learner expresses interest, the tutor would then read the informed consent document to the learner, explaining the details and checking comprehension. If the learner is still interested, the tutor would submit the learner's name to the director. The director would pass all names to the researcher. Actually, I liked the idea of having the researcher meet with the learners and have them work through the packet, providing comments and suggestions. If that isn't possible, the researcher would contact the learners by phone to confirm their interest and to reread the consent document to them before conducting the interview/questionnaire. Sorry for the lengthy response, but it seems I spend a lot of time trying to figure the best way to get informed consent documents signed -- and ensuring that adults with limited literacy understand what it is they are agreeing to do. Although we are not asking them to be involved in medical procedures or other risky studies, it's important to make sure we are not taking advantage of their inexperience and that we can offer the "informed consent" process as a meaningful learning experience rather than just an administrative necessity. ****************** Barbara Van Horn NIFL-WORKPLACE List Co-Moderator Assistant Director Institute for the Study of Adult Literacy College of Education The Pennsylvania State University 102 Rackley Building University Park, PA 16802-3202 Phone: 814-863-3777 Fax: 814-863-6108 E-mail: BLV1@PSU.EDU From ACTUAL SIGNS -- In a New York restaurant: "Customers who consider our waitresses uncivil ought to see the manager."
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