Working Models for Care of Infants with a Heart Defect

描述（由申请人提供）：患有复杂先天性心脏缺陷（CCHD）婴儿的父母在婴儿出生的第一年可能会遇到新的、复杂的、强烈的养育责任。父母管理这些责任的能力可能会对他们自己和婴儿的幸福产生影响。这些能力可能是他们养育子女的工作模式（WMs）的功能。WM是一个由相互连接的组件组成的动态系统，这些组件具有根据目标、动机和意义设置和纠正的过程。意图决定了为实现目标而采取的循序渐进的策略。期望在事件期间是“在线的”，并根据目标促进其解释，指导行动（通过策略），预测未来，并调节意义。WMs是通过经验构建的，可能受到家庭成员和临床医生的影响。目前还没有一个框架来探讨对患有CCHD或其他健康问题的婴儿进行育儿WMs。有特殊保健需要儿童的看护理论和家庭管理理论表明，可以从父母对其看护问题的描述中识别出看护问题的类型。本纵向研究的目的是通过识别和描述WM类型，提高对养育CCHD儿童的WM的理解。具体目标是：(1)通过对三个婴儿年龄（1、6和12个月）的多方法研究，探索婴儿第一年WMs、PC、CCHD在父母个体和父母整体上的演变；(2)通过混合方法分析，在婴儿状况（疾病严重程度、疾病对家庭的影响）和父母结果（喂养能力、情感体验和生活质量/生活质量）的背景下，探索这些WMs。我们还将开始开发WMs的类型学。参与者将是18位父母，他们是婴儿的主要照顾者（PCG），已婚或有伴侣，至少18岁，会说英语。方法包括：(a)在家中与PCG和配偶/伴侣（如有）进行3次半结构化访谈；(b)在录像回放刚完成的婴儿喂养的选定部分时进行指导讨论；及(c)有组织的测量方法，以评估长者对疾病对家庭的影响，以及如何平衡正面和负面的影响；(d)亲子互动的观察性测量；(e)生活质素的视觉模拟量度；(f)每月一次电话访谈；(g)审查婴儿医疗记录。本探索性研究将进一步推动有其他特殊医疗需求的婴儿父母WM的研究，支持WM类型的进一步发展，并为以患者为中心的干预措施的临床试验提供理论基础。

DESCRIPTION (provided by applicant): Parents of infants with a complex congenital heart defect (CCHD) are likely to encounter new, complex, and intense parenting responsibilities during the infant's first year. Parents' competency in managing these responsibilities may make a difference for their own and the infant's well-being. These competencies may be a function of their working models (WMs) of parenting. A WM is a dynamic system of interconnected components with processes that are set and corrected according to goals, motivations, and meanings. Intentions determine strategies employed to make incremental progress toward goals. Expectations are "online" during events and facilitate their interpretation in light of goals, guide action (through strategies), forecast the future, and regulate meaning. WMs are constructed through experience and may be influenced by family members and clinicians. A framework for exploring parenting WMs for infants with CCHD or other health problem is not available. Caregiving theory and theory of family management for children with special health-care needs suggests that types of WMs may be identifiable from parents' descriptions of their WMs. The purpose of this longitudinal study is to advance understanding of WMs of parenting a child with a CCHD through identification and description of WM types. The specific aims are: (1) through multi-method study at three infant ages (1, 6, and 12 months), explore the evolution of WMs PC, CCHD for individual parents and for parents, on the whole, across the infant's first year; and (2) explore, in mixed-methods analyses, these WMs in the context of infant conditions (severity of illness, illness impact on the family) and parental outcomes (feeding competencies, affective experience, and quality of life/QOL). We will also begin to develop a typology of WMs. Participants will be 18 parents who are the infant's primary caregivers (PCG) and who are married or partnered, at least 18-years-old, and English speaking. Methods include: (a) semistructured interviews done 3 times in the home with, PCG and spouse/partner, if available; (b) guided discussion during videotape replay of selected portions of a just-completed infant feeding; and (c) structured measures of the PCG's perception of illness impact on the family and of balance of positive and negative affect; (d) an observational measure of parent-infant interaction; (e) a visual analogue measure of QOL; (f) a monthly telephone interview; and (g) a review of infant medical records. This exploratory study will advance study of the WMs of parents of infants with other special health-care needs, support further WM typology development, and contribute a theoretical base for clinical trials of patient-centered interventions.