A longitudinal study of parent-child collaboration in CF and type 1 diabetes

CF 和 1 型糖尿病亲子合作的纵向研究

• 批准号: 8040690
• 负责人: Victoria Allison Miller
• 金额: $ 35.59万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-01-15 至 2015-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8040690
• 关键词: Accounting; Address; Adherence; Adolescence; Adolescent; Adult; Affect; Age; Area; Behavior; Characteristics; Child; Child Behavior; Child Development; Child health care; Childhood; Chronic Disease; Cognitive; Collaborations; Communication; Complex; Control Locus; Cystic Fibrosis; Data; Decision Making; Development; Disadvantaged; Disease Management; Equilibrium; Family; Family Characteristics; Family member; Foundations; Health; Individual Differences; Insulin-Dependent Diabetes Mellitus; Intervention; Investigation; Joints; Lead; Learning; Longitudinal Studies; Measures; Mediation; Methodology; Methods; Monitor; Outcome; Parenting behavior; Parents; Pattern; Personal Satisfaction; Process; Regimen; Research; Role; Sampling; Self Management; Symptoms; Time; Treatment Protocols; Work; Youth; base; cohort; design; innovation; instrument; longitudinal design; member; parental role; psychosocial; skills; therapy development; treatment adherence

DESCRIPTION (provided by applicant): Childhood chronic illnesses affect between 7% and 18% of children, and each of these illnesses requires decisions concerning the timing, completion, and monitoring of complex treatment regimens. The process by which children achieve greater independence for decision making related to these regimens may influence effective self-management and health outcomes. Collaborative decision making (CDM) between parents and children is a potentially important precursor to full decision making independence during childhood and adolescence. CDM provides an opportunity for children to learn what family members take into account when making decisions and the consequences of different decisions, which may contribute to the development of the child's own decision making skills. Because of its potential role in the successful transition to independent and effective decision making, additional empirical data related to collaborative decision making for illness management is needed. The primary objective of this research is to determine developmental mechanisms, predictors, and outcomes of collaborative decision making in children and adolescents with a chronic illness (type 1 diabetes or cystic fibrosis) and their parents. This research addresses the following specific aims: 1) To describe developmental trajectories of CDM and to identify the developmental mechanisms underlying these trajectories (e.g., cognitive development; psychosocial maturity), 2) To identify characteristics of the child, parent, and family that are related to patterns of CDM over time (e.g., child health locus of control; parent autonomy support; family communication), and 3) To determine if CDM is related to patterns of treatment adherence and responsibility over time. The methods incorporate an accelerated longitudinal design, in which we assess multiple age cohorts at Time 1 and then collect longitudinal data on members of each cohort over a three-year period. This approach minimizes the disadvantages of the traditional longitudinal design and allows us to examine a broad range of development (age 8-18 years) in a shorter study period than would otherwise be possible. Very few studies have utilized longitudinal methodology to understand chronic illness management as a function of developmental variables. This research has significant implications for the health and well-being of children and adolescents with a chronic illness, by seeking to understand how they learn to manage their health both independently and effectively. Furthermore, the transition to greater independence may provide the foundation for effective disease management during adulthood, making it a critical area of empirical investigation. Data from this project will lead to the development of intervention strategies to enhance parent-child decision making interactions about chronic illness management at different ages. This data will also enable us to identify early patterns of interacting that either facilitate or impede adherence and responsibility later on, so that clinicians can intervene before problems develop. PUBLIC HEALTH RELEVANCE: Childhood chronic illnesses affect 7 to 18% of children and often involve decision making and complex tasks that must be carried out on a daily basis. This project will examine the role of parent-child collaborative decision making in the transition to greater independence for chronic illness self-management. The transition to greater independence provides the foundation for effective disease management during adulthood, making it a critical area of empirical investigation.

描述(申请人提供)：儿童慢性病影响7%至18%的儿童，这些疾病中的每一种都需要决定复杂治疗方案的时间、完成和监测。儿童在与这些疗法有关的决策中获得更大独立性的过程可能会影响有效的自我管理和健康结果。父母和孩子之间的协作决策(CDM)是儿童和青春期完全决策独立的潜在重要先兆。清洁发展机制为儿童提供了一个机会，让他们了解家庭成员在做出决定时考虑了什么以及不同决定的后果，这可能有助于发展儿童自己的决策技能。由于它在成功过渡到独立和有效的决策过程中的潜在作用，需要与疾病管理的协作决策相关的额外经验数据。这项研究的主要目标是确定患有慢性疾病(1型糖尿病或囊性纤维化)的儿童和青少年及其父母的发展机制、预测因素和协同决策的结果。本研究的具体目标如下：1)描述清洁发展机制的发展轨迹，并确定这些发展轨迹背后的发展机制(例如，认知发展；心理社会成熟度)；2)确定随着时间的推移，与清洁发展机制模式相关的儿童、父母和家庭的特征(例如，儿童健康控制点；父母自主支持；家庭沟通)；以及3)确定清洁发展机制是否与随时间推移的治疗依从性和责任模式有关。这些方法包括加速纵向设计，在该设计中，我们在时间1评估多个年龄队列，然后在三年期间收集每个队列成员的纵向数据。这种方法最大限度地减少了传统纵向设计的缺点，并允许我们在比其他情况下更短的研究时间内检查广泛的发展范围(8-18岁)。很少有研究使用纵向方法论来理解慢性病管理作为发育变量的函数。这项研究对患有慢性病的儿童和青少年的健康和福祉具有重大影响，试图了解他们如何学会独立和有效地管理自己的健康。此外，向更大独立性的过渡可能为成年期有效的疾病管理提供基础，使其成为经验性研究的关键领域。来自该项目的数据将导致制定干预策略，以加强不同年龄段的父母和孩子在慢性病管理方面的决策互动。这些数据还将使我们能够识别早期的相互作用模式，这些模式有助于或阻碍后来的坚持和责任，以便临床医生可以在问题出现之前进行干预。 公共卫生相关性：儿童慢性病影响7%至18%的儿童，往往涉及决策和必须每天执行的复杂任务。本项目将研究亲子合作决策在慢性病自我管理向更大独立性过渡中的作用。向更大独立性的过渡为成年期有效的疾病管理提供了基础，使其成为经验性研究的关键领域。