Youth and Parent Knowledge of Diabetes Complications

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DESCRIPTION (provided by applicant): Youth with type 1 diabetes mellitus (DM1) face long-term risks of microvascular (e.g. retinopathy, nephropathy, neuropathy) and macrovascular (e.g. cardiovascular disease) complications of the disease. Little is known about patients' and parents' knowledge of these, complications, how they acquire this information and how they cope with it. Insufficient or erroneous knowledge about these risks may predispose patients and parents to unfavorable psychological adjustment to DM1. Studies of healthy adolescents suggest that their knowledge of other risks (e.g. reproductive health; AIDS; smokeless tobacco) is often inaccurate and incomplete. The proposed program of research could lead to developmentally-tailored provision of accurate information about these risks and empirically-validated guidance for parents to assist them in communicating with their children about this sensitive topic. These contributions might promote better psychological adjustment to DM1, better relationships among youth, parents and health professionals and more constructive motivation for DM1 self-management. The candidate for this Mid-Career Investigator Award in Patient-Oriented Research, Tim Wysocki, Ph.D., has a well-established program of clinical research into the psychological aspects of diabetes in youth and of mentoring in the context of that program. This award would allow the candidate to open this novel line of research while expanding his skills to include focus groups, qualitative and internet-based research methods. It would also enhance mentoring of several early-career pediatric psychologists who would participate in the design, implementation, analysis and dissemination of three sequential and cumulative studies addressing these issues. Study 1 is a qualitative analysis of focus group discussions among parents of youth with DM1 about their exposure to information about long-term complications of DM1. Study 2 is an e-mailed survey of health care professionals that would capture information on their practices, philosophy and decision-making regarding provision of information about these risks to parents and youth at various developmental and experiential stages. Study 3 is a cross-sectional study of parent and youth knowledge of long-term complications of DM1 and associations of that knowledge with measures of psychological adjustment, coping styles, diabetes-related anxiety, family communication and conflict about the disease, and diabetes treatment adherence. All of these studies have been designed and will be implemented with careful sensitivity to human subject protection issues. This research will provide substantial information about the optimal content, manner of presentation, source, and timing of the provision of information about the long-term complications of diabetes to youth with DM1 and their parents.