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: 7916543
• 负责人: Sharron L Docherty
• 金额: $ 38.61万
• 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/7916543
• 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; Stress; Subgroup; Symptoms; Testing; Time; Treatment Failure; Trust; Typology; Uncertainty; Withdrawing Treatments; Work; Writing; abstracting; base; caregiving; congenital heart disorder; cost; design; economic cost; end of life; experience; high risk; improved; infant outcome; innovation; member; mortality; parental influence; preference; public health relevance; 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）：针对患有复杂生命疾病的婴儿的决策，危及生命状况的婴儿早些时候会在生命的头几个月中死亡，现在已经接受了高度复杂的，有时甚至是实验性治疗方法，旨在治愈疾病或延长寿命。但是，这些疗法的结果不确定，婴儿的死亡风险很高，如果他们活着，则面临着重要的发病率。患有这些疾病的婴儿经历了不确定的轨迹，通常涉及多次健康危机，要求父母和医疗保健提供者对治疗的类型和水平做出重要决定。决定跨越连续性是否开始治疗，如何改变治疗以应对医疗危机，是否从积极的治疗护理转变为以症状为中心的姑息治疗转变为是否撤回治疗。这项为期5年的研究将使用纵向研究设计，以研究接受生命危及生命危及生命的病情（CLTC）的婴儿的决策轨迹。这项研究的重点是三组患有死亡和生命兴奋的病毒风险的CLTC的婴儿：非常早产（<26周的妊娠），患有复杂心脏异常的婴儿以及需要遗传诊断的婴儿，需要血肿干细胞移植（HSCT）。将研究40例，每个案例将包括婴儿，父母，提供者和照料的身体背景。叙事访谈和自我报告措施将在出生或诊断后的病例成员使用，至少在此后每月直到死亡或入学后1年。将使用案例内和跨案例分析来探索这些婴儿的决策轨迹，并研究如何以及何时在整个疾病轨迹中进行决策。该研究将确定整个轨迹的过渡点，并确定影响决策做出的因素，例如父母想要的参与程度；父母的特征或多或少地参与；卫生保健提供者可以在决策中扮演角色。这些发现将用于开发针对患有CLTC的婴儿的决策和疾病轨迹过渡点的类型。这些将为制定干预措施提供基础，以促进这些婴儿的决策。公共卫生相关性：这项研究将使用纵向多重案例研究设计来检查针对患有复杂生命状况（CLTC）的婴儿的决策轨迹，并影响父母从出生或诊断到死亡或死亡或12个月的父母决策的影响。这项研究将是第一项研究，以前瞻性研究与健康相关的决定（治疗起始和加强，从治疗护理到姑息治疗，预扣或撤回治疗的治疗转变）的轨迹，这些疾病轨迹在多个患有CLTC的婴儿中，包括CLTC的多个人群，包括那些死亡的人和死亡的人。此外，非常早产的婴儿（妊娠26周），患有复杂的先天性心脏病（CHD）的婴儿以及需要造血性干细胞移植（HSCT）的遗传诊断的婴儿，将允许探索决策如何在三种最常见的脚踏板死亡的实验性治疗的婴儿治疗中相似的决策和不同。我们将确定决策轨迹的过渡点，并确定对决策的影响，例如父母想要的参与程度；父母的特征或多或少地参与；以及医疗保健提供者在决策中扮演的角色。目标是确定整个轨迹的过渡点，并为制定干预措施提供基础，以促进父母为这些婴儿的决策。