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

医疗保健提供者在儿科姑息治疗决策中的作用

• 批准号: 8664437
• 负责人: Savithri Nageswaran
• 金额: $ 21.98万
• 依托单位: WAKE FOREST UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-05-21 至 2016-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8664437
• 关键词: Accounting; Address; Area; Caregiver Burden; Caregivers; Caring; Cessation of life; Child; Childhood; Chronic; Communication; Communities; Complex; Data; Decision Making; Elements; Face; Family; Gastrostomy; Goals; Group Interviews; Health Personnel; Institute of Medicine (U.S.); Institution; Intervention; Intervention Studies; Interview; Knowledge; Life; Mechanical ventilation; Medical; Methodology; Operative Surgical Procedures; Palliative Care; Pediatric Hospitals; Physicians; Play; Process; Qualitative Methods; Quality of Care; Quality of life; Research; Risk; Role; Structure; Surgeon; Testing; Time; Tracheostomy procedure; United States; Withdrawal; Withholding Treatment; base; clinical decision-making; clinical practice; clinically relevant; design; end of life; evidence base; improved; outcome forecast; preference; public health relevance; response; scoliosis; shared decision making

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,

描述（由申请人提供）：患有复杂慢性病 (CCC) 的儿童在不同环境中长期接受多个医疗保健提供者的护理 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。 CCC 儿童的看护者面临着是否接受（或不接受）这些治疗的艰难决定。护理人员对决策过程非常不满意，尤其是他们理解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什么是支持护理人员做出维持生命治疗决策的最佳方式。我们设计这个项目就是为了解决决策中的这一差距。该项目的目的是：(1) 定义对护理人员在为患有 CCC 的儿童做出生命维持治疗决定时非常重要的决策关键要素，(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因素和障碍，以及 (3) 探索临床相关且现实的选择，以改善有关生命维持治疗的决策过程。我们将使用定性方法来研究这些问题。对于目标 1 和 2，我们将对 40 名接受过气管切开术或慢性机械通气的儿童的护理人员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，以探索增强促进者并减少 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，