Youth and Parent Knowledge of Diabetes Complications

描述(申请人提供)：患有1型糖尿病(DM1)的青少年面临微血管并发症(如视网膜病变、肾病、神经病变)和大血管并发症(如心血管疾病)的长期风险。对于患者和父母对这些并发症的了解，他们是如何获得这些信息的，以及他们是如何应对这些信息的，人们知之甚少。对这些风险的了解不足或错误，可能会使患者和父母容易对DM1进行不利的心理调整。对健康青少年的研究表明，他们对其他风险(例如生殖健康、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导致为父母提供有关这些风险的准确信息和经验性指导，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地适应DM1的心理，改善青年、父母和卫生专业人员之间的关系，并促进DM1自我管理的更具建设性的动机。蒂姆·维索基博士是这项以患者为中心的研究的职业生涯中期奖的候选人，他有一个成熟的临床研究计划，对青少年糖尿病的心理方面进行研究，并在该计划的背景下进行指导。这一奖项将允许候选人开启这一新颖的研究路线，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。它还将加强对几名初出茅庐的儿科心理学家的指导，他们将参与设计、实施、分析和传播三项针对这些问题的连续和累积研究。研究1是对患有DM1的青少年父母关于他们接触到关于DM1长期并发症的信息的焦点小组讨论的定性分析。研究2是对保健专业人员的电子邮件调查，将收集有关他们的做法、哲学和决策方面的信息，向处于不同发育和经验阶段的父母和青年提供关于这些风险的信息。研究3是关于父母和青少年对DM1长期并发症的知识的横断面研究，以及这些知识与心理适应、应对方式、糖尿病相关焦虑、关于疾病的家庭沟通和冲突以及糖尿病治疗依从性的测量之间的关系。所有这些研究都经过精心设计，并将对人类主体保护问题特别敏感地加以实施。这项研究将提供关于向患有DM1的青少年及其父母提供有关糖尿病长期并发症的信息的最佳内容、呈现方式、来源和时机的大量信息。

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.