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

描述（由申请人提供）：儿童慢性疾病影响7%至18%的儿童，这些疾病中的每一种都需要对复杂治疗方案的时机、完成和监测做出决定。儿童在与这些方案有关的决策方面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）是儿童和青少年时期完全独立决策的潜在重要先导。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决定时所考虑的因素以及不同决定的后果，这可能有助于儿童发展自己的决策技能。由于其在成功过渡到独立和有效决策中的潜在作用，因此需要更多与疾病管理协作决策相关的经验数据。本研究的主要目的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协作决策的发育机制、预测因素和结果。本研究的具体目的如下：1)描述CDM的发展轨迹，并确定这些轨迹背后的发展机制（如认知发展、心理社会成熟）；2)确定儿童、父母和家庭的特征，这些特征与CDM随时间的发展模式有关(如儿童健康控制点、父母自主支持；3)确定CDM是否与治疗依从性和责任模式相关。该方法采用了加速纵向设计，其中我们在时间1评估多个年龄队列，然后收集每个队列成员在三年期间的纵向数据。这种方法最大限度地减少了传统纵向设计的缺点，并使我们能够在较短的研究时间内检查大范围的发展（8-18岁）。很少有研究利用纵向方法来理解慢性疾病管理作为发展变量的函数。这项研究对患有慢性疾病的儿童和青少年的健康和福祉具有重要意义，旨在了解他们如何学会独立有效地管理自己的健康。此外，过渡到更大的独立性可能为成年期有效的疾病管理提供基础，使其成为经验调查的关键领域。本项目的数据将引导干预策略的发展，以加强不同年龄的慢性病管理的亲子决策互动。这些数据还将使我们能够识别早期的相互作用模式，这些模式促进或阻碍了后来的依从性和责任感，因此临床医生可以在问题发展之前进行干预。

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.