Access to Pediatric Specialty Care in Cook County
About the Project and our Goals
What is this research about? The goal of this research is to help the State of Illinois make pediatric specialty care more accessible to children. This particular study focuses on children living in Cook County. This first phase is aimed at collecting all the stories that parents or other caretakers have about the process they have gone through in order to get specialty pediatric care for their children. We want to hear both about problems and helpful people or programs parents encountered. This will help us identify ways to improve the current system.
Who is conducting this research? The University of Chicago Survey Lab is conducting the interviews for this study. The principal investigator in charge of the content of the study, Dr. Karin Rhodes, is at the University of Pennsylvania. Dr. Rhodes will provide results to the Illinois Department of Healthcare and Family Services (HFS). Click here to visit Dr. Rhodes' faculty website at the University of Pennsylvania.
Privacy
Who will know what you tell us? The interviewer that you speak to will know what you say, but all information remains confidential. All our interviewers at the University of Chicago Survey Lab are carefully trained to maintain confidentiality of study respondents and all sign a confidentiality pledge as part of the terms of their employment. We will destroy your contact information as soon as the data collection phase of the project is ended and will erase tapes once they are transcribed. Transcripts are "de-identified" to remove any references to named people or places. Information will be reported in summary form only.
How can you be sure your rights are protected? The University of Chicago has an institutional review board (IRB) which is set of committees that review all protocols for research studies to make sure those who participate are protected. If you ever feel your rights as a survey participant have been violated, you are encouraged to contact the Social and Behavioral Sciences Institutional Review Board at (773) 834-7835, located at 5835 S. Kimbark Ave. Chicago IL 60637. For questions about the substance of the research, please contact the Survey Lab Director, Martha Van Haitsma at 773-834-3843 or mvh@uchicago.edu.
Information for Parents
Who is eligible to participate? Any adult parent or caretaker of a child with need of specialty pediatric care living in Cook County Illinois is eligible, whether or not you were able to obtain specialty care for your child. We are looking for a wide range of experiences; however, we have a fixed total number of interviews to conduct. For this reason, we ask parents or caretakers to call in and provide a very brief description of your story along with some other information such as your child's health problem, your child's age and the type of insurance you have, if any, that covers your child. For those with situations and/or stories different from those we have heard already, we will request an additional follow-up interview in person that will take about an hour.
What will be asked of you if you agree to participate? If you are willing to participate, please call the Survey Lab at 773-834-3843. We will ask you an initial set of about 10 questions to determine if we have already talked to other parents with similar stories. If we have not, we will call back and ask if you are willing to meet with one of our interviewers for about an hour to tell us your story in greater detail. If you are willing to do this, we will arrange a time and place that is private and convenient for you (we can come to your home or place of work or you can come to the University). We will ask to tape record some of the interviews to ensure completeness of our notes, but you may decline to be taped. Everything you say will be confidential. We will not attach your name or the name of your child to anything you say.
Information for Health Care Professionals
Who is eligible to participate? We want to speak to pediatricians or general practitioners who treat children, specialists of different types who treat children, and administrators that work in primary care or specialty offices. Our goal is to learn more about the process through which children obtain appointments to be seen by pediatric specialists and the possible barriers to such care that might include such things as insufficient access to screening referrals, insufficient numbers of specialists who treat children, paperwork burden or poor reimbursement levels posed by particular insurance programs, geographic distribution of specialists or other factors. We want to hear from physicians and practice administrators about any ideas for increasing the availability of pediatric specialty care to children living in Cook County.
What will be asked of you if you agree to participate? If you are willing to participate, we will ask to speak to you for half an hour to an hour. We will ask you open-ended questions about the process through which children come to be seen by pediatric specialists and the places along that path that efforts to see a specialist might get derailed. We will also ask you to think creatively about policies that would increase the ability of pediatric specialists to see more children. We will ask to tape record some of the interviews we conduct to ensure completeness of our notes, but you may decline to be taped. Everything you say will be entirely confidential. We will not attach your name or the name of your clinic or practice to anything you say.
