Research On Family Management Of Childhood Disease

青年糖尿病的成功管理在很大程度上取决于家庭对疾病所带来的情感、行为和认知需求的适应。 在青春期前和早期，糖尿病管理责任的转变，沿着正常的生理和心理发育变化，创造了一个特别具有挑战性的情况。 虽然许多青年和父母有效地谈判了这一过渡，但在这一时期，许多其他青年走上了代价高昂、自我毁灭的道路，造成了可预防的保健费用和短期心理痛苦，并加速了疾病长期并发症的发病和发展。研究表明，青春期对糖尿病的适应不良可能会持续到成年早期，从而加速长期医疗并发症的风险。 迄今为止的研究表明，如果将行为干预作为标准护理的一部分常规实施，则可以提高依从性，生活质量和血糖控制。 然而，将这些干预措施转化为常规临床实践存在许多障碍，包括成本、可获得性、第三方覆盖、合格临床医生的可用性、便利性、社会耻辱和其他此类变量。 一个多成分的行为干预，将心理学原则纳入糖尿病的医疗管理，可能会加强家庭管理的糖尿病在青春期早期的一个实用的，具有成本效益和持久的方式。 这项多中心研究的目的是评估临床综合行为干预对1型糖尿病青少年及其父母的疗效。 该研究采用了随机实验设计，其中，在四个临床中心之一就诊的年轻父母对按血糖控制程度分层，并随机接受标准护理或临床综合行为干预。 干预是基于个人和家庭系统的理论观点，包括社会认知理论，自我调节和权威的养育。 其目的是为家庭提供使用解决问题方法的经验培训，以促进改善父母与子女的团队合作，并提高糖尿病管理中解决问题的有效技能。 该干预措施旨在适用于广大的糖尿病青年及其家庭，灵活实施，适合家庭的不同需求，并随着时间的推移以低强度提供，以满足糖尿病管理责任通常经历过渡期间家庭不断变化的需求和作用。 结合现场评估、电话评估和临床数据收集，评估血糖控制、依从性、生活质量、心理状态和这些结局的假设介质 这项研究的临床地点包括：马萨诸塞州波士顿的乔斯林糖尿病中心;佛罗里达州杰克逊维尔的内穆尔儿童诊所;德克萨斯州休斯顿的德克萨斯儿童医院;以及伊利诺伊州芝加哥的儿童纪念医院。 本研究的协调中心是James Bell Associates。 几项初步研究为该临床试验提供了信息。 一项纵向观察性研究，发展对1型糖尿病管理的影响，研究了家庭，社会和行为变量对糖尿病自我管理行为的影响，特别关注青少年的发展转变。 一项试点干预研究，糖尿病私人教练研究，评估了个性化问题解决方法的有效性，以动机访谈和应用行为分析的原则为指导，并由受过专门训练的本科生和研究生担任糖尿病私人教练。 多中心临床试验中使用的特定干预方法的简化形式的初步研究评估了研究设计和干预方法的可行性。

Successful management of diabetes in youth is heavily dependent upon family adaptation to the affective, behavioral, and cognitive demands imposed by the disease. During pre and early adolescence, transition in responsibility for diabetes management, along with normal physiological and psychological developmental changes, create an especially challenging situation. Although many youths and parents negotiate this transition effectively, it is also a period when many other youths take costly, self-destructive paths resulting in preventable health care costs and psychological suffering in the short-term and accelerated onset and progression of long-term complications of the disease. Studies suggest that poor adaptation to diabetes during adolescence is likely to persist into early adulthood, accelerating the risks of long-term medical complications. Research to date suggest that adherence, quality of life, and glycemic control could be enhanced if behavioral interventions were routinely implemented as part of standard care. Yet there are many barriers to the translation of these interventions into routine clinical practice, including cost, access, third party coverage, availability of qualified clinicians, convenience, social stigma, and other such variables. A multi-component behavioral intervention that integrates psychological principles into medical management of diabetes is likely to enhance family management of diabetes during early adolescence in a practical, cost-effective and lasting manner. The goal of this multi-site study was to assess the efficacy of a clinic-integrated behavioral intervention for youth with type 1 diabetes and their parents. The study employed a randomized experimental design in which youth-parent dyads attending one of four clinical sites were stratified by degree of glycemic control and randomized to receive either standard care or a clinic-integrated behavioral intervention. The intervention was based on both individual and family system theoretical perspectives, including social cognitive theory, self-regulation, and authoritative parenting. It was designed to provide experiential training for families in the use of a problem solving approach to promote improved parent-child teamwork and more effective problem-solving skills for diabetes management. The intervention was designed to be applicable to the broad population of youth with diabetes and their families, flexibly implemented and tailored to the varying needs of families, and delivered at a low intensity over time to meet the changing needs and roles of families during the period in which responsibility for diabetes management typically undergoes transition. A combination of in-person assessments, telephone assessments, and in-clinic data collection were utilized to assess glycemic control, adherence, quality of life, psychological status, and hypothesized mediators of these outcomes Clinical Sites for this stucy included: Joslin Diabetes Center in Boston, MA; Nemours Childrens Clinic in Jacksonville, FL; Texas Childrens Hospital in Houston, TX; and Childrens Memorial Hospital in Chicago, IL. The coordinating center for this study was James Bell Associates. Several pilot studies informed this clinical trial. A longitudinal observational study, Developmental Influences on Management of Type 1 Diabetes, examined the influence of family, social, and behavioral variables on diabetes self-management behaviors with a particular focus on adolescent developmental transitions. A pilot intervention study, the Diabetes Personal Trainer Study, assessed the effectiveness of an individualized problem-solving approach, guided by principles of motivational interviewing and applied behavior analysis, and implemented by specially-trained undergraduate and graduate students, who served as diabetes personal trainers. A pilot study of an abbreviated form of the specific intervention approach used in the multi-site clinical trial assessed the feasibility of the study design and intervention approach.