Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Project

项目总结/摘要 患有严重危及生命的疾病（SLTI）或可能或可能不具有潜在危险的疾病的儿童 治愈性或延长生命的治疗，但往往导致死亡，通常是活得更长， 复杂的护理需求。这些儿童越来越多地在家里得到照顾， 姑息和临终关怀（HBPPHC）在帮助患有SLTI的儿童及其 通过提供医疗保健和社会服务领域的跨学科护理，家庭花更多时间在家 提供者和环境，特别是在生命的最后阶段。其中许多儿童 然而，家庭并没有得到始终如一的高质量HBPPHC。护理团队迫切需要一种方法， 评估他们提供的护理是否确实符合儿童和家庭的价值和需要， 并利用这些评估来改善每个儿童的家庭护理成果和质量 和家人.在我们目前的研究中，我们开发了姑息和临终关怀的家庭体验 儿童和照顾者（经验）测量，这是第一个已知的标准化工具， 评估家庭的经验与HBPPHC在美国，因此，我们建议评估的经验 从其子女目前正在接受HBPPHC的父母的角度进行衡量，以及 从姑息治疗和临终关怀提供者的角度来看， 临床实践中的工具。为了实现这一目标，我们提出了三个具体目标：1）评估以下证据 严重危及生命的儿童父母的经验测量的得分效度和信度 目前在家接受姑息治疗或临终关怀的疾病; 2）评估 在患有严重危及生命疾病的儿童的父母中实时使用经验测量 目前正在家中接受姑息治疗或临终关怀;以及3）评估 经验与儿科姑息治疗和临终关怀利益相关者的跨学科小组一起测量。 拟议的项目是第一个检查实时使用的仪器，专门开发， 评估美国父母报告的HBPPHC经历，并符合申请人的长期职业生涯 改善所有SLTI儿童及其家庭获得优质姑息治疗的机会，特别是在 家庭环境这个拟议的项目将由一个强大的导师团队，相关的课程， 职业发展和其他培训机会在费城儿童医院和 宾夕法尼亚大学;研究项目和培训计划将共同为未来奠定基础 在HBPPHC研究的独立程序。申请人拟从事的项目和长期职业 目标与NINR的战略研究计划和资助优先事项密切相关，以推进高水平的 高质量的循证姑息治疗，包括为患有严重疾病的儿童及其家人提供的姑息治疗 生活在社区里。

PROJECT SUMMARY/ABSTRACT Children with serious life-threatening illnesses (SLTIs), or illnesses that may or may not have potential curative or life-prolonging treatments, but all-too-often result in death, are generally living longer with significant and complex care needs. These children are increasingly being cared for at home, and home-based pediatric palliative and hospice care (HBPPHC) is playing a greater role in helping children with SLTIs and their families spend more time at home by providing interdisciplinary care across health care and social service providers and settings, particularly in the period leading up to and at the very end of life. Many of these children and families, however, are not receiving consistently high-quality HBPPHC. Care teams urgently need a way to assess whether the care they provide is indeed aligned with what children and families value and need the most, and to use these assessments to improve care outcomes and quality of care in the home for each child and family. In our current study, we developed the Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure, which is the first known standardized instrument to assess families’ experiences with HBPPHC in the U.S. We therefore propose to evaluate the EXPERIENCE Measure from the perspective of parents whose children are currently receiving HBPPHC, as well as from the perspective of palliative and hospice care providers who will ultimately be implementing this tool in clinical practice. To accomplish this goal, we propose three specific aims: 1) Evaluate evidence for score validity and reliability on the EXPERIENCE Measure from parents of children with serious life-threatening illnesses currently receiving palliative or hospice care at home; 2) Evaluate the feasibility and acceptability of using the EXPERIENCE Measure in real-time in parents of children with serious life-threatening illnesses currently receiving palliative or hospice care at home; and 3) Evaluate the perceived clinical utility of the EXPERIENCE Measure with an interdisciplinary group of pediatric palliative and hospice care stakeholders. The proposed project is the first to examine the real-time use of an instrument developed to specifically evaluate parent-reported HBPPHC experiences in the U.S., and fits within the applicant’s long-term career goals to improve access to quality palliative care for all children with SLTIs and their families, particularly in the home setting. This proposed project will be supported by a strong mentorship team, relevant coursework, and career development and other training opportunities at the Children’s Hospital of Philadelphia and the University of Pennsylvania; together, the research project and training plan will build a foundation for a future independent program of research in HBPPHC. The proposed project and the applicant’s long-term career goals align closely with the NINR’s strategic research plan and funding priorities to advance high- quality, evidence-based palliative care, including for children with serious illnesses and their families living in the community.