Research On Family Management Of Childhood Disease

儿童疾病家庭管理研究

• 批准号: 8553903
• 负责人: Tonja Nansel
• 金额: $ 15.66万
• 依托单位: EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/8553903
• 关键词: Acute; Adherence; Adolescence; Adolescent; Affective; Behavior; Behavior Therapy; Behavioral; Boston; Characteristics; Chicago; Child; Childhood; Clinic; Clinical Trials; Cognitive; Communication; Conflict (Psychology); Data Collection; Development; Diabetes Mellitus; Disease; Effectiveness; Experimental Designs; Family; Feasibility Studies; Goals; Health Care Costs; Health Personnel; Hospitals; Individual; Informal Social Control; Insulin-Dependent Diabetes Mellitus; Intervention; Intervention Studies; Maintenance; Mediation; Mediator of activation protein; Medical; Multi-Institutional Clinical Trial; Observational Study; Outcome; Parenting behavior; Parents; Pattern; Persons; Physiological; Pilot Projects; Population; Problem Solving; Psychological adjustment; Qualifying; Quality of life; Randomized; Research; Research Design; Risk; Role; Self Efficacy; Self Management; Site; Subgroup; System; Telephone; Texas; Time; Training; Translations; Youth; base; clinical practice; clinical research site; cost; cost effective; cost effectiveness; design; diabetes management; early adolescence; emerging adult; family influence; family management; glycemic control; graduate student; improved; intervention effect; medical complication; meetings; motivational enhancement therapy; primary outcome; psychologic; secondary outcome; skills; social; social cognitive theory; social stigma; standard care; treatment adherence; undergraduate student

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 include: 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 is 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.

青少年糖尿病的成功管理在很大程度上取决于家庭对疾病施加的情感、行为和认知需求的适应。在青春期前和青春期早期，糖尿病管理责任的转变，以及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。尽管许多青少年和父母有效地谈判了这一过渡，但这也是许多其他青少年选择代价高昂、自我毁灭的道路的时期，导致可预防的医疗费用和短期内心理痛苦，并加速疾病的长期并发症的发病和发展。研究表明，青春期对糖尿病的不良适应可能会持续到成年早期，从而加速患长期医学并发症的风险。 到目前为止的研究表明，如果将行为干预作为标准护理的一部分进行常规实施，那么依从性、生活质量和血糖控制可以得到提高。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、第三方覆盖范围、合格临床医生的可用性、便利性、社会耻辱和其他此类变量。一种将心理学原理整合到糖尿病医疗管理中的多成分行为干预可能会以实用、成本效益和持久的方式加强青少年早期糖尿病的家庭管理。 这项多点研究的目的是评估临床综合行为干预对患有1型糖尿病的青少年及其父母的效果。这项研究采用了随机实验设计，在四个临床地点之一的青年父母二人组根据血糖控制程度进行分层，并随机接受标准护理或临床综合行为干预。干预基于个人和家庭系统的理论视角，包括社会认知理论、自我调节和权威性教养。它的目的是为家庭提供使用问题解决方法的经验培训，以促进改善亲子合作和更有效地解决糖尿病管理的问题技能。这项干预措施旨在适用于广大患有糖尿病的青年人口及其家庭，根据家庭的不同需要灵活实施和量身定做，并随着时间的推移以较低的强度提供，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。采用面对面评估、电话评估和临床数据收集相结合的方法来评估血糖控制、依从性、生活质量、心理状态以及这些结果的假设中介因素。 这项研究的临床站点包括：马萨诸塞州波士顿的Joslin糖尿病中心；佛罗里达州杰克逊维尔的Nemour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。这项研究的协调中心是James Bell Associates。 几项试点研究为这项临床试验提供了信息。一项名为发展对1型糖尿病管理的影响的纵向观察性研究，考察了家庭、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。一项名为糖尿病私人教练研究的试验性干预研究评估了个性化问题解决方法的有效性，该方法以动机访谈和应用行为分析原则为指导，由接受过专门培训的本科生和研究生实施，他们担任糖尿病私人教练。一项在多点临床试验中使用的特定干预方法的简化形式的试点研究评估了研究设计和干预方法的可行性。