Youth and Parent Knowledge of Diabetes Complications

描述（由申请人提供）：1型糖尿病（DM 1）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。关于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科普这些风险知之甚少。对这些风险的知识不足或错误可能会使患者和父母对DM 1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。拟议的研究计划可能会导致发展定制提供有关这些风险的准确信息，并为父母提供经过验证的指导，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更好的心理适应DM1，更好的关系，青年，父母和卫生专业人员和DM1自我管理的建设性动机。在以患者为导向的研究中，这一职业中期研究者奖的候选人Tim Wysocki博士，有一个完善的方案，对青年糖尿病的心理方面进行临床研究，并在该方案的背景下进行指导。这个奖项将允许候选人打开这个新的研究路线，同时扩大他的技能，包括焦点小组，定性和基于互联网的研究方法。它还将加强对几位早期职业儿科心理学家的指导，他们将参与解决这些问题的三项连续和累积研究的设计，实施，分析和传播。研究1是一个定性分析的焦点小组讨论中的青少年与DM1的父母对他们的接触信息DM1的长期并发症。研究2是一项通过电子邮件对医疗保健专业人员进行的调查，该调查将收集有关他们在不同发育和经历阶段向父母和青少年提供有关这些风险的信息的做法、理念和决策的信息。研究3是一项横断面研究，探讨父母和青少年对DM 1长期并发症的了解，以及这些知识与心理调整、应对方式、糖尿病相关焦虑、家庭沟通和冲突以及糖尿病治疗依从性等指标的相关性。所有这些研究的设计和实施都将对人类受试者保护问题保持谨慎的敏感性。这项研究将提供大量的信息，最佳的内容，介绍方式，来源和时间提供信息的长期并发症的糖尿病青年DM 1和他们的父母。

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.