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病(CCHD)的婴儿的父母在婴儿出生的第一年可能会遇到新的、复杂的和紧张的育儿责任。父母在管理这些责任方面的能力可能会对他们自己和婴儿的福祉产生影响。这些能力可能是他们养育子女的工作模式(WMS)的函数。WM是由相互关联的组件组成的动态系统，具有根据目标、动机和意义设置和修正的过程。意图决定了实现目标的渐进式进展所采用的策略。期望在事件期间是“在线的”，有助于根据目标来解释它们，(通过战略)指导行动，预测未来，并调节意义。WMS是通过经验构建的，可能会受到家庭成员和临床医生的影响。没有为患有CCHD或其他健康问题的婴儿探索育儿WMS的框架。照顾理论和有特殊保健需要的儿童的家庭管理理论表明，从父母对他们的WMS的描述中可以识别出WMS的类型。这项纵向研究的目的是通过对工作记忆类型的识别和描述，促进对患有慢性阻塞性肺病的儿童父母的生活质量的理解。具体目标是：(1)通过三个婴儿年龄(1、6和12个月)的多方法研究，探索WMS PC、CCHD对个别父母和整体父母在婴儿一岁期间的演变；以及(2)在混合方法分析的背景下，在婴儿条件(疾病的严重程度、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名父母，他们是婴儿的主要照顾者(PCG)，已婚或有伴侣，年龄至少18岁，会说英语。方法包括：(A)在家中与PCG和配偶/伴侣(如果有的话)进行三次半结构访谈；(B)在录像带重放刚刚完成的婴儿喂养的选定部分时进行有指导的讨论；(C)PCG对疾病对家庭的影响以及积极和消极影响的平衡的结构化测量；(D)父母与婴儿互动的观察性测量；(E)生活质量的视觉模拟测量；(F)每月电话访谈；(G)审查婴儿的医疗记录。这项探索性研究将推进对有其他特殊保健需求婴儿父母的WMS的研究，支持进一步的WM类型学的发展，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.