Youth & Parent Knowledge of Diabetes Complications
Investigators:
- Tim Wysocki, PhD (Principal Investigator)
- Lisa Buckloh, PhD (Co-Investigator)
- Amanda Lochrie, PhD (Co-Investigator)
- Atilio Canas, MD (Co-Investigator
- Holly Antal, PhD (Co-Investigator)
- Amy Milkes, MA (Research Specialist)
- Jeanpaul Burnett, MPH (Research Specialist)
- Alli Edney-White (Research Specialist)
- Sally Hutchinson, PhD, RN (Consultant)
Background:
Diabetes mellitus increases the risks of several serious long-term health problems including damage to the heart and blood vessels, kidneys, eyes and nerves. These risks are all reduced when patients keep their blood sugar levels as close to the normal range as possible. There is little empirical data available about what parents and youths with diabetes know about these risks, how they acquired the knowledge they have, and how they cope with it. This 5-year NIH grant (#K24-DK61728), which is a Mid-Career Investigator Award for Patient-Oriented Research, will support three studies that will each explore different aspects of this basic idea. This program of research will provide extensive information about how, what, when and by whom information about the long-term complications of diabetes should be provided to parents and to children at varied developmental and experiental stages. This research could contribute to enhanced psychological adaptation to diabetes among patients and parents and improved diabetes self-management motivation and behavior. The research may also be pertinent to other pediatric chronic diseases that carry long-term health risks.
What We're Doing:
Three sequential studies will be conducted under this grant:
- Parent focus group study - Under the direction of Lisa Buckloh, PhD, this completed study involved convening groups of 6-8 parents of youths with type 1 diabetes in focus group discussions. Participants (67 parents or other caregivers) were asked to respond to a series of structured questions about their experiences regarding learning about the long-term complications of diabetes, their children’s similar experiences, their thoughts and feelings about these issues, and their methods of coping with it. Focus group sessions were audiotaped for later qualitative analysis that will yield information about the primary content and meanings that are revealed in the conversations. Each focus group session concluded with a 20-25 minute multimedia educational presentation about the long-term health risks associated with diabetes, the prevention of these complications, and sensitive and effective communication with youths about these difficult topics. This study was completed in the fall of 2006 and is expected to yield rich data that will guide the later studies that are planned as well as stimulate additional hypotheses for further evaluation.
- Internet-based survey of diabetes professionals - Under the direction of Amanda Lochrie, PhD, this recently completed study consisted of internet delivery and automated collection of a survey of diabetes professionals regarding their philosophy, practices and attitudes regarding education of parents and youths about the long term complications of diabetes. An international e-mail distribution list consisting of more than 2,800 pediatric endocrinologists and diabetes educators was constructed. A total of 757 pediatric diabetes professionals completed some survey items and 535 completed the entire survey. This study will yield valuable information about the variations in practice regarding this topic as well as about demographic, geographic and attitudinal correlates of educational practices.
- Associations among youth and parent knowledge of diabetes complications with adjustment, self-management and health status -This final planned study under this grant will ask questions such as "What do youths and parents actually know about diabetes complications?" and "How is this knowledge associated with other diabetes outcomes such as psychological adjustment, quality of life, family relationships, treatment adherence and diabetic control?" Parents and youths will take part in individually administered structured interviews that have been carefully constructed to determine what they know about diabetic complications related to the eyes, heart, kidneys and nerves. The interview is structured such that extremely open-ended questions are followed by progressively more detailed questions about this content area. This structure will prevent any child or parent from being exposed for the first time to threatening information during the interview. At the same evaluation visit, each parent and youth will complete questionnaires about the other study outcomes that are of interest. As with the parent focus group study above, each evaluation session will conclude with a multi-media educational presentation about the epidemiology, detection, prevention and treatment of diabetes complications and about how to talk with children and adolescents about these sensitive topics.
