Youth and Parent Knowledge of Diabetes Complications

描述（由申请人提供）：1型糖尿病（DM1）青年患者面临微血管（如视网膜病变、肾病、神经病变）和大血管（如心血管疾病）并发症的长期风险。患者和父母对这些并发症的了解，他们如何获得这些信息以及他们如何应对这些信息，都知之甚少。对这些风险认识的不充分或错误可能使患者和家长对DM1产生不利的心理适应。对健康青少年的研究表明，他们对其他风险（如生殖健康、艾滋病、无烟烟草）的了解往往不准确和不完整。拟议的研究项目可以为父母提供有关这些风险的准确信息和经验验证的指导，以帮助他们与孩子就这一敏感话题进行沟通。这些贡献可能会促进对DM1更好的心理调整，改善青年、父母和卫生专业人员之间的关系，并为DM1自我管理提供更有建设性的动机。Tim Wysocki博士是本次面向患者研究的中期研究者奖的候选人，他在青少年糖尿病心理方面的临床研究以及该项目背景下的指导方面有着完善的项目。该奖项将允许候选人开启这一新颖的研究领域，同时扩展他的技能，包括焦点小组、定性和基于互联网的研究方法。它还将加强对几名早期职业儿科心理学家的指导，这些心理学家将参与设计、实施、分析和传播针对这些问题的三个连续和累积研究。研究1是一个定性分析焦点小组讨论的青少年DM1的父母关于他们暴露的DM1的长期并发症的信息。研究二是通过电子邮件对卫生保健专业人员进行调查，收集他们在向处于不同发展和经验阶段的父母和青少年提供这些风险信息方面的做法、理念和决策方面的信息。研究3是一项横断面研究，研究家长和青少年对DM1长期并发症的认识，以及这种认识与心理适应措施、应对方式、糖尿病相关焦虑、家庭对疾病的沟通和冲突以及糖尿病治疗依从性的关系。所有这些研究都是在设计和实施时对人体受试者保护问题非常敏感。本研究将为DM1青少年及其父母提供关于糖尿病长期并发症的信息的最佳内容、呈现方式、来源和时间提供大量信息。

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.