Health-care Providers Roles in Decision Making in Pediatric Palliative Care

描述（由申请人提供）：患有复杂慢性病（CCC）的儿童在各种环境中接受多个卫生保健提供者的长期护理， 时间这些儿童经常接受维持生命的治疗，这对儿童及其家庭具有深远的长期影响。患有CCC的儿童的照顾者面临着进行（或不进行）这些治疗的困难决定。照顾者在很大程度上对决策过程不满意，特别是在他们理解其决定的长期影响的能力方面。目前，缺乏证据基础，以告知临床医生什么应该是一个最佳的方式来支持护理人员在决策有关维持生命的治疗。我们设计了这个项目来解决决策中的这一差距。本项目的目的是：（1）确定决策的关键要素，这些要素对护理人员为患有CCC的儿童做出关于生命维持治疗的决策非常重要，（2）确定护理人员和医生之间关于生命维持治疗的沟通的促进者和障碍，以及（3）探索临床相关和现实的选择，以改善关于生命维持治疗的决策过程。我们将采用定性的方法来研究这些问题。对于目标1和2，我们将对40名接受气管切开术或慢性机械通气的儿童的照顾者进行深入的半结构化访谈。利用前两个目标的信息，我们将对38名内科医生和外科医生进行小组访谈，以探讨加强促进者和减少CCC儿童生命维持治疗决策障碍的策略。该项目是我们长期目标的第一步，即开发一种可测试的干预措施，以支持护理人员做出有关维持生命治疗的决策，

DESCRIPTION (provided by applicant): Children with complex chronic conditions (CCC) receive care from multiple health-care providers in a variety of settings for a prolonged period of time. These children often receive life- sustaining treatments that have profound long-term implications for children and their families. Caregivers of children with CCC face difficult decisions about pursuing (or not pursuing) these treatments. Caregivers are largely dissatisfied with the decision making process, particularly with regard to their ability to understand the long-term implications for their decisions. Currently, there is a lack of evidence-base to inform clinicians about what should be an optimal way to support caregivers in decision-making about life-sustaining treatments. We have designed this project to address this gap in decision-making. The aims of this project are to: (1) define key elements of decision-making that are important to caregivers in making decisions about life- sustaining treatments for their children with CCC, (2) identify facilitators and barriers to communication between caregivers and physicians about life-sustaining treatments, and (3) explore clinically relevant and realistic options for improving decision-making process about life- sustaining treatments. We will use qualitative methodology to study these questions. For Aims 1 and 2, we will conduct in-depth, semi-structured interviews of 40 caregivers of children who have received tracheostomy or chronic mechanical ventilation. Using information from the first two aims, we will conduct group interviews of 38 physicians and surgeons to explore strategies to enhance facilitators and reduce barriers to decision-making about life-sustaining treatments for children with CCC. This project is the first step in our long-term goal to develop a testable intervention to support caregivers' in decision-making about life-sustaining treatments,