Decisionmaking in Pediatric Advanced Care

描述（由申请人提供）：父母在为患有危及生命疾病的孩子做医疗决定时，有时会反复面对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社会心理概念模型，我们使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设定目标，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协作。我们建议在重症监护室、姑息治疗和复杂护理环境中，对面临危及生命疾病的儿童的父母进行队列研究（响应PA-09-122-有或有危及生命疾病风险的人的临床决策研究（R01）），招募200名父母，并在过渡到家庭、6、12、18和24个月时进行随访。具体目标是量化父母希望思维模式、积极和消极影响、关于孩子健康轨迹的想法、社会支持程度、父母对孩子的主要问题和希望的一致性以及对孩子“成为好父母”的潜在属性的判断之间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改变孩子的干预秩序状态限制；2)重新确定照顾孩子的目标的优先顺序，3)更高程度地实现了他们认为成为孩子“好父母”的重要属性。由此产生的对父母决策的更好理解随后可用于提高姑息治疗决策的质量，未来将开发和测试基于证据的干预措施，以支持父母的决策。多学科研究小组将受益于顾问小组的指导，包括家长和国家儿科姑息治疗专家。

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.