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

儿童和护理人员姑息和临终关怀家庭体验（EXPERIENCE）项目

• 批准号: 10241296
• 负责人: Jackelyn Y Boyden
• 金额: $ 7.12万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-07 至 2022-09-06
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10241296
• 关键词: Academy; Address; Advocate; American; Attention; Bereavement; Caregivers; Caring; Cessation of life; Child; Child Care; Childhood; Clinical; Communities; Complex; Development; Drops; Ensure; Evaluation; Family; Foundations; Funding; Future; Goals; Healthcare; Home; Hospice Care; Improve Access; Institutes; Interview; Life; Measurement; Measures; Mentorship; Methods; Monitor; Outcome; Palliative Care; Parents; Participant; Patients; Pediatric Hospitals; Pennsylvania; Philadelphia; Play; Primary Health Care; Property; Provider; Psychometrics; Quality of Care; Quality of life; Reporting; Research; Research Project Grants; Research Training; Resources; Role; Sampling; Service setting; Social Work; Standardization; Supportive care; Testing; Time; Universities; Validity and Reliability; acceptability and feasibility; base; care costs; care outcomes; care providers; care systems; career; career development; catalyst; clinical practice; community setting; design; end of life; evidence base; experience; feasibility testing; health care service; hospice environment; improved; instrument; meetings; member; palliative; prevent; programs; real time monitoring; satisfaction; service providers; statistics; time use; tool; training opportunity

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.

项目摘要/摘要 患有严重危及生命的疾病(SLTI)的儿童，或可能或可能没有潜在危险的疾病 根治或延长生命的治疗，但往往会导致死亡，通常寿命更长，显著 和复杂的护理需求。这些儿童越来越多地在家中得到照顾，并以家庭为基础的儿科 姑息和临终关怀(HBPPHC)在帮助SLTI儿童和他们的 通过提供跨医疗保健和社会服务的跨学科护理，家庭有更多的时间待在家里 提供者和环境，特别是在生命的准备阶段和最后阶段。这些孩子中有很多 然而，家庭并没有得到始终如一的高质量的HBPPHC。护理团队迫切需要一种方法来 评估他们提供的护理是否确实与儿童和家庭重视和需要的东西保持一致 大多数，并利用这些评估来改善每个儿童在家中的护理结果和护理质量 还有家人。在我们目前的研究中，我们发展了基于家庭的姑息治疗和临终关怀经验 对于儿童和照顾者(体验)测量，这是已知的第一个标准化工具 评估家庭在美国患上HBPPHC的经验。因此，我们建议评估这种经验 从子女目前正在接受HBPPHC的父母的角度进行衡量，以及 从最终将实施这一计划的姑息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)评估证据 严重生命威胁儿童父母体验量表的效度和信度 目前在家接受姑息或临终关怀的疾病；2)评估以下项目的可行性和可接受性 在患有严重危及生命疾病的儿童的父母中实时使用体验测量 目前在家中接受姑息或临终关怀；以及3)评估感知的临床效用 与儿科、姑息治疗和临终关怀利益相关者组成的跨学科小组进行经验测量。 拟议的项目是第一个检查仪器的实时使用情况的项目，该仪器开发的目的是 评估父母报告的HBPPHC在美国的经历，并符合申请者的长期职业生涯 目标：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 家居布景。这个拟议的项目将由一个强大的指导团队、相关的课程工作和 费城儿童医院的职业发展和其他培训机会 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 HBPPHC的独立研究计划。建议的项目和申请人的长期职业生涯 目标与NINR的战略研究计划和资金优先事项密切一致，以推进高 高质量、以证据为基础的姑息治疗，包括为患有严重疾病的儿童及其家人 住在社区里。