Decision-making for Infants with Complex Life-Threatening Conditions

患有复杂的危及生命状况的婴儿的决策

• 批准号: 8120494
• 负责人: Sharron L Docherty
• 金额: $ 38.22万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-09-30 至 2013-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8120494
• 关键词: Address; Affect; Age; Area; Birth; Cardiac; Caring; Case Study; Categories; Cessation of life; Characteristics; Child; Childhood; Complex; Conflict (Psychology); Data; Decision Making; Development; Diagnosis; Distress; Educational Status; Emotional; Enrollment; Face; Family; Foundations; Funding; Gender; Genetic; Goals; Guidelines; Health; Health Personnel; Hematopoietic stem cells; Hospitalization; Infant; Intervention; Interview; Life; Longevity; Measures; Medical; Medical Records; Morbidity - disease rate; National Institute of Nursing Research; Nurses; Outcome; Palliative Care; Parents; Patient Self-Report; Pattern; Physicians; Play; Population; Pregnancy; Premature Infant; Process; Provider; Quality of life; Race; Research; Research Design; Role; Sampling; Signal Transduction; Social Workers; Spirituality; Stem cell transplant; Subgroup; Symptoms; Testing; Time; Treatment Failure; Trust; Typology; Uncertainty; Withdrawing Treatments; Withholding Treatment; Work; Writing; abstracting; caregiving; congenital heart disorder; cost; design; economic cost; end of life; experience; high risk; improved; infant outcome; innovation; member; mortality; parental influence; preference; social; therapy design

DESCRIPTION (provided by applicant): Decision-Making For Infants with Complex Life-Threatening Conditions Abstract Infants with life-threatening conditions who earlier would have died in the first months of life are now receiving highly complex and sometimes experimental treatments designed to cure the condition or prolong life. However, these treatments have uncertain outcomes, the infants are at high risk for death, and if they live face a life-span of significant morbidity. Infants with these conditions experience an uncertain trajectory that typically involves multiple health crises requiring parents and health care providers to make critical decisions about the type and level of treatment. Decisions span the continuum from whether to initiate treatment, how to alter the treatment to respond to a medical crisis, whether to shift from aggressive curative care to symptom- focused palliative care, to whether to withdraw treatment. This 5-year study will use a longitudinal, case study design to examine the trajectory of decision making for infants undergoing life-sustaining treatment for complex life-threatening conditions (CLTC). Three groups of infants with CLTCs who are at particularly high risk for death and significant life-span morbidity are the focus of this study: extremely preterm infants (<26 weeks gestation), infants with complex cardiac anomalies, and infants with genetic diagnoses requiring a hematopoietic stem cell transplant (HSCT). Forty cases will be studied and each case will include the infant, parents, providers and the physical context of caregiving. Narrative interviews and self-report measures will be used with case members following birth or diagnosis and at least monthly thereafter until death or 1 year following enrollment. A within-case and cross-case analysis will be used to explore the trajectory of decision making for these infants and examine how and when decisions are across the illness trajectory. The study will identify transition points across the trajectory and identify factors influencing decision making, such as the level of involvement that parents' want; characteristics of parents who desire more or less involvement; and roles health care providers can play in decision making. The findings will be used to develop typologies of decision making and illness trajectory transition points for infants with CLTCs. These will provide a foundation for developing interventions to facilitate the decision making for these infants. PUBLIC HEALTH RELEVANCE: This study will use a longitudinal multiple case study design to examine the trajectory of decision making for infants with complex life-threatening conditions (CLTC) and influences on parents' decision making from birth or diagnosis until death or 12 months. This study will be the first study to prospectively examine the trajectory of all types of health-related decisions (treatment initiation and intensification, shifts in treatment from curative care to palliative care, withholding or withdrawing treatment) across a year-long illness trajectory, in multiple populations of infants with CLTCs, both those who die and those who survive. In addition, the sample of extremely premature infants (<26 weeks gestation), infants with complex congenital heart disease (CHD), and infants with genetic diagnoses requiring a hematopoietic stem cell transplant (HSCT) will allow for exploration of how decision making is both similar and different for infants undergoing experimental treatment for the three most common causes of pediatric death. We will identify transition points across the trajectory of decision making and identify the influences on decision making, such as the level of involvement that parents' want; characteristics of parents who desire more or less involvement; and roles health care providers play in decision making. The goal will be to identify transition points across the trajectory and provide a foundation for developing interventions to facilitate parents' decision-making for these infants.

描述（由申请人提供）：针对患有复杂的危及生命状况的婴儿的决策摘要患有危及生命状况的婴儿在生命的最初几个月内可能会死亡，现在正在接受高度复杂的、有时是实验性的治疗，旨在治愈这种状况或延长寿命。然而，这些治疗的结果不确定，婴儿死亡的风险很高，而且如果他们活着，也将面临显着的发病率。患有这些疾病的婴儿会经历一个不确定的轨迹，通常会涉及多种健康危机，需要父母和医疗保健提供者就治疗类型和水平做出关键决定。决策涵盖从是否开始治疗、如何改变治疗以应对医疗危机、是否从积极的治疗转向以症状为中心的姑息治疗，以及是否撤回治疗等一系列连续过程。这项为期 5 年的研究将采用纵向案例研究设计来检查因复杂危及生命的病症 (CLTC) 接受生命维持治疗的婴儿的决策轨迹。本研究的重点是三组患有 CLTC 的婴儿，这些婴儿死亡风险特别高，并且终生发病率显着升高：极度早产儿（妊娠 <26 周）、患有复杂心脏异常的婴儿以及需要进行基因诊断的婴儿。造血干细胞移植（HSCT）。将研究四十个案例，每个案例都将包括婴儿、父母、提供者和护理的实际环境。病例成员出生或诊断后，将采用叙述性访谈和自我报告措施，此后至少每月一次，直至死亡或入组后一年。将使用病例内和跨病例分析来探索这些婴儿的决策轨迹，并检查决策如何以及何时跨越疾病轨迹。该研究将确定整个轨迹的转变点，并确定影响决策的因素，例如父母希望的参与程度；渴望或多或少参与的父母的特征；以及医疗保健提供者在决策中可以发挥的作用。研究结果将用于开发 CLTC 婴儿的决策类型和疾病轨迹转变点。这些将为制定干预措施奠定基础，以促进这些婴儿的决策。公共健康相关性：本研究将采用纵向多案例研究设计来研究患有复杂危及生命状况的婴儿 (CLTC) 的决策轨迹，以及从出生或诊断到死亡或 12 个月对父母决策的影响。这项研究将是第一项前瞻性研究一年的疾病轨迹中所有类型的健康相关决策（治疗开始和强化、治疗从治疗性护理转向姑息性护理、暂停或撤回治疗）的轨迹的研究，多个患有 CLTC 的婴儿群体，包括死亡的和存活的婴儿。此外，极早产儿（妊娠<26周）、患有复杂先天性心脏病（CHD）的婴儿以及基因诊断需要造血干细胞移植（HSCT）的婴儿的样本将有助于探索决策如何同时对于正在接受儿童死亡的三种最常见原因的实验性治疗的婴儿来说，有相似之处，也有不同之处。我们将确定决策轨迹上的转变点，并确定对决策的影响，例如父母希望的参与程度；渴望或多或少参与的父母的特征；以及医疗保健提供者在决策中发挥的作用。目标是确定整个轨迹的过渡点，并为制定干预措施奠定基础，以促进父母为这些婴儿做出决策。