Decisionmaking in Pediatric Advanced Care

描述(由申请人提供)：父母为患有危及生命的儿童做出医疗决定时，有时会反复面临一项极其艰巨的任务，这项任务几乎超出想象：如何决定何时搁置治愈或延长生命的治疗目标，转而优先考虑舒适或生活质量的目标。在过去的五年里，我们的研究团队开发了一个综合的心理社会概念模型，我们用它来帮助父母做出姑息治疗的决策。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)管理情绪输入和影响，d)父母和卫生保健提供者之间的合作。我们建议在重症监护、姑息治疗和复杂护理环境中对孩子面临生命威胁疾病(响应PA-09-122-患有或有生命威胁疾病风险的人的临床决策研究(R01))的父母进行队列研究，招募200名父母在过渡到家、6个月、12个月、18个月和24个月时采取后续措施，特别旨在量化父母希望思维模式、积极和消极影响、对孩子健康轨迹的想法、社会支持程度、父母内部关于主要问题和对孩子的希望的一致性之间的关联。以及关于孩子“做一个好父母”的潜在属性的判断，以及随后做出的关于照顾孩子的决定，以及随着时间的推移可能重新确定治疗目标的优先顺序。我们假设，具有更高水平的希望思维模式的父母在正式重新评估后，更有可能随后1)改变孩子的干预顺序状态的限制；2)重新确定照顾孩子的目标的优先顺序；3)报告更高水平的成就，他们认为这些是他们认为是孩子“好父母”的重要特征。由此产生的对父母决策的更好的理解随后可用于提高姑息护理决策的质量，并在未来开发和测试基于证据的干预以支持父母的决策。多学科研究团队将受益于顾问小组的指导，顾问小组包括父母和国家儿科姑息治疗专家。 与公共卫生相关：改善对患有危及生命的复杂慢性病儿童的护理的努力，目前由于对父母在面对往往不确定和可怕的情况时实际参与的决策过程的了解有限而受到阻碍。在先前关于接受姑息治疗咨询服务的儿童的父母决策的研究的基础上，这项队列研究将跟踪125名儿童和大约200名父母成人，纵向考察决策过程，以及希望思维模式、积极和消极影响以及儿童的疾病轨迹对决策的影响。

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.