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) 的婴儿的父母可能会在婴儿的第一年遇到新的、复杂的、紧张的养育责任。父母管理这些责任的能力可能会对他们自己和婴儿的福祉产生影响。这些能力可能是他们养育子女的工作模式（WM）的函数。 WM 是一个由互连组件组成的动态系统，其流程根据目标、动机和含义进行设置和纠正。意图决定了为实现目标而逐步取得进展所采用的策略。期望在事件期间“在线”，并促进根据目标进行解释、指导行动（通过策略）、预测未来并调节意义。 WM 是根据经验构建的，可能会受到家庭成员和临床医生的影响。目前还没有探索针对患有先天性心脏病或其他健康问题的婴儿的育儿 WM 的框架。有特殊医疗保健需求的儿童的照护理论和家庭管理理论表明，WM 的类型可以从父母对其 WM 的描述中识别出来。这项纵向研究的目的是通过识别和描述 WM 类型来加深对养育患有 CCHD 孩子的 WM 的理解。具体目标是：（1）通过对三个婴儿年龄（1、6、12个月）的多方法研究，探讨婴儿第一年个体父母和整体父母WMs PC、CCHD的演变； (2) 在混合方法分析中，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/QOL）的背景下探索这些 WM。我们还将开始开发 WM 的类型。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，年满 18 岁，会说英语。方法包括： (a) 在家中与 PCG 和配偶/伴侣（如果有）进行 3 次半结构化访谈； (b) 在录像带重播刚刚完成的婴儿喂养的选定部分期间进行引导讨论； (c) PCG 对疾病对家庭影响的看法以及积极和消极影响平衡的结构化衡量标准； (d) 父母与婴儿互动的观察措施； (e) 生活质量的视觉模拟测量； (f) 每月一次电话访谈； (g) 婴儿医疗记录的审查。这项探索性研究将推进对有其他特殊医疗保健需求的婴儿父母的 WM 的研究，支持 WM 类型学的进一步发展，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.