Decisionmaking in Pediatric Advanced Care

描述（由申请人提供）：为患有危及生命的疾病的儿童做出医疗决定的父母有时会反复面临一项极其艰巨的任务，一项几乎超出想象的任务：如何决定何时将治愈或延长生命的治疗目标放在一边，而是优先考虑舒适或生活质量的目标。在过去的五年里，我们的研究团队已经开发出一个综合的心理社会概念模型，我们采用它来帮助父母在姑息治疗决策。该模型的组成部分包括：a）评估目标和潜在的重新目标，B）吸收认知信息，c）管理情感输入和影响，以及d）父母和医疗保健提供者之间的合作。我们建议对子女正面对危及生命的疾病的家长进行队列研究（响应PA-09-122-关于患有或有风险患有危及生命疾病的患者的临床决策研究（R 01）），在重症监护、姑息治疗和复杂护理环境中，招募200名父母，在过渡到家中、6、12、18和24个月时进行随访，特别是旨在量化父母希望的思维模式，积极和消极影响，关于儿童健康轨迹的想法，社会支持程度，父母对子女的主要问题和希望的一致性，以及对子女“成为好父母”的潜在属性的判断的基线测量之间的关联，以及随后做出的关于儿童护理的决定以及随着时间的推移可能重新确定治疗目标的优先级。我们假设，在正式的重新评估后，具有更高水平的希望思维模式的父母更有可能随后1）改变孩子的干预命令状态的限制; 2）重新优先考虑照顾孩子的目标，以及3）报告更高水平的实现他们认为是孩子的“好父母”的重要属性。由此产生的改善父母的决策的理解，随后可以用来提高姑息治疗决策的质量，与未来的发展和测试的循证干预父母的决策支持。多学科研究小组将受益于一个顾问小组的指导，包括家长和国家儿科姑息治疗专家。 公共卫生相关性：目前，由于对父母在面临往往是不确定和可怕的情况时实际参与的决策过程了解有限，改善对患有危及生命的复杂慢性病的儿童的照料的努力受到阻碍。建立在以前的研究决策的儿童接受姑息治疗咨询服务的父母，这项队列研究将遵循125名儿童和大约200名家长的成年人，纵向研究决策过程和决策的影响，希望的思维模式，积极和消极的影响，以及儿童的疾病轨迹。

DESCRIPTION (provided by applicant): Parents making medical decisions for a child living with a life-threatening condition confront, sometimes repeatedly, an extremely daunting task, one almost beyond imagination: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life. Over the past five years, our research team has developed an integrative psychosocial conceptual model that we employ to aid parents in palliative care decision making. Components of this model include a) evaluating goals and potential re-goaling, b) assimilating cognitive information, c) managing emotional input and influences, and d) working collaboratively between parents and health care providers. We propose to conduct cohort study of parents whose children are confronting life-threatening illnesses (responding to PA-09-122- Research on Clinical Decision Making in People with or at Risk for Life-Threatening Illness (R01)) in intensive care, palliative care, and complex care settings, enrolling 200 parents with follow-up measures at transition to home, 6, 12, 18, and 24 months, specifically aiming to quantify the association between baseline measurements of parental hopeful patterns of thinking, positive and negative affect, thoughts regarding the child's health trajectory, degree of social support, concordance within parental dyads regarding the major problems and hopes for their child, and judgments regarding potential attributes of "being a good parent" for their child, and the subsequent decisions made regarding the care of the children and potential reprioritization of therapeutic goals over time. We hypothesize that parents with higher levels of hopeful patterns of thinking will be more likely, upon formal reassessment, to subsequently 1) have changed the child's limit of intervention order status; 2) reprioritize goals of care for the child, and 3) report higher levels of achieving what they deem to be important attributes of being a "good parent" for their child. The resulting improved understanding of parental decisionmaking can subsequently be used to enhance the quality of palliative care decisionmaking, with future development and testing of an evidence-based intervention for parental decisionmaking support. The multi- disciplinary research team will benefit from the guidance of a panel of consultants, including parents and national pediatric palliative care experts. PUBLIC HEALTH RELEVANCE: Efforts to improve the care of children with life-threatening complex chronic conditions are currently hampered by limited understanding of the decisionmaking process actually engaged in by parents when they are confronted with often uncertain and dire situations. Building on a previous study of decisionmaking by parents of children receiving palliative care consultative services, this cohort study will follow 125 children and approximately 200 parental adults, examining the process of decisionmaking longitudinally and the impact on decisionmaking of hopeful patterns of thought, positive and negative affect, and the child's illness trajectory.