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

描述(申请人提供)：患有复杂慢性病(CCC)的儿童在不同的环境中接受多个医疗保健提供者的长期护理 时间到了。这些儿童经常接受对儿童及其家庭具有深远长期影响的维持生命的治疗。患有CCC的儿童的照顾者面临着寻求(或不寻求)这些治疗的艰难决定。照顾者对决策过程很不满意，特别是对他们理解对其决策的长期影响的能力。目前，缺乏证据基础来告知临床医生，在关于维持生命的治疗决策中，什么是支持照顾者的最佳方式。我们设计这个项目是为了解决决策中的这一差距。该项目的目标是：(1)确定对护理人员在为患有CCC的儿童作出维持生命治疗的决策时非常重要的决策要素；(2)确定护理人员和医生之间就维持生命治疗进行沟通的促进者和障碍；以及(3)探索改善维持生命治疗决策过程的临床相关和现实的选择。我们将采用定性的方法来研究这些问题。对于目标1和目标2，我们将对40名接受过气管切开或慢性机械通气的儿童照顾者进行深入的、半结构化的访谈。利用来自前两个目标的信息，我们将对38名内科医生和外科医生进行小组访谈，以探索加强促进者和减少决策障碍的策略，以便为患有CCC的儿童提供维持生命的治疗。这个项目是我们长期目标的第一步，我们的长期目标是开发一种可测试的干预措施，以支持照顾者关于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,