A Novel Photo-Narrative Communication Intervention Among Parents of Children with Severe Neurological Impairment in the ICU

针对 ICU 严重神经损伤儿童家长的新型照片叙事沟通干预

• 批准号: 10350175
• 负责人: Jori Bogetz
• 金额: $ 16.06万
• 依托单位: SEATTLE CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-21 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10350175
• 关键词: Admission activity; Adult; Advisory Committees; Area; Behavior; Caring; Cessation of life; Child; Child Advocacy; Child Care; Child Health; Childhood; Clinical; Clinical Investigator; Clinical Trials; Clinical Trials Design; Communication; Critical Illness; Data; Decision Making; Empathy; Enrollment; Environment; Family; Feeling; Foundations; Frequencies; Funding; Future; Goals; Gold; Health; Healthcare; Hospitalization; Impairment; Intensive Care; Intensive Care Units; Intervention; Interview; K-Series Research Career Programs; Longitudinal cohort study; Measures; Mechanical ventilation; Medical; Mentors; Mentorship; Methods; Neurologic; Outcome; Parents; Patients; Pediatric Intensive Care Units; Perception; Personal Satisfaction; Population; Prospective cohort; Publications; Qualitative Methods; Quality of life; Randomized; Randomized Controlled Trials; Reporting; Research; Research Project Grants; Stress; Structure; Testing; Therapeutic; Therapeutic Intervention; Time; Training; Translating; United States National Institutes of Health; Work; arm; base; career development; clinical care; design; experience; group intervention; implementation intervention; improved; intervention delivery; intervention refinement; multidisciplinary; novel; pilot test; post intervention; prospective; provider behavior; psychosocial; resilience; social stigma; stakeholder perspectives; success; therapy development; treatment as usual

PROJECT SUMMARY Children with severe neurological impairment (SNI) account for over 50% of deaths in the pediatric intensive care unit (ICU). Despite making up <1% of the pediatric population, children with SNI make up 25% of ICU admissions where they experience twice the frequency of mechanical ventilation. During critical illness, parental stress is high and exacerbated when parents experience stigma related to their child’s neurologic illness and are unable to share information about their child’s health and family values that guide medical decision-making with clinicians who have limited time to develop relationships and rotate frequently. The overall objective of this application is to develop a communication intervention that bolsters parents’ ability to share their perspectives, needs, and values with clinicians in the ICU. Development of this intervention is critical to improve clinical care in the ICU for patients with SNI and their families. Following a stepwise approach for rigorous intervention development, Aim 1 will prospectively examine the longitudinal relationships between parent perceptions of therapeutic alliance and psychosocial outcomes, including parental stress, during their child’s ICU admission. Aim 2 will iteratively refine a novel photo-elicitation communication intervention based on preliminary studies and input from parent-clinician dyads. Aim 3 will pilot test the intervention among parents of children with SNI and their clinicians in the ICU examining feasibility, acceptability, and preliminary efficacy. This application will support Dr. Bogetz’ career development as it aligns closely with additional expertise essential to her success as an independent clinical investigator including training in: 1) longitudinal cohort studies; 2) psychosocial intervention development; and 3) conducting randomized controlled trials (RCTs). Dr. Bogetz’ career development will be supported by a highly skilled and successful mentorship and advisory team with expertise in longitudinal cohort studies among seriously ill children and their parents, photo-elicitation, psychosocial intervention development, and clinical trials. The environment in which Dr. Bogetz will complete this project is unparalleled, with access to mentoring, coursework, clinical and office space, research and grants management, and administrative support. This application is the first to characterize therapeutic alliance and other variables important to the wellbeing of parents of children with SNI in the ICU and to develop a novel communication intervention tailored to the unique needs of this population. This application is significant because it aims to relieve stress among a vulnerable and understudied group of parents whose children disproportionally receive care in the ICU due to serious illness. At the conclusion of this career development award, Dr. Bogetz will have the training, scalable intervention, pilot data, and publications to allow her to successfully submit and undertake an R01-level project testing the hypothesis that the communication intervention will improve psychosocial outcomes among parents of children with SNI during their child’s critical illness.

项目总结 儿童严重神经功能障碍(SNI)占儿科重症监护室死亡的50%以上 监护室(ICU)。尽管SNI儿童占儿科人口的1%，但仍占ICU的25% 入院时，他们的呼吸频率是机械通风的两倍。在危重疾病期间， 父母的压力很大，当父母感受到与孩子的神经学有关的耻辱时，父母的压力会加剧 他们无法分享有关孩子健康和家庭价值观的信息，这些信息可以指导医生 与时间有限和频繁轮换的临床医生进行决策。这个 这个应用程序的总体目标是开发一种沟通干预，以增强父母的能力 与ICU的临床医生分享他们的观点、需求和价值观。这种干预的发展是 改善ICU对SNI患者及其家属的临床护理至关重要。遵循一步一步的 对于严格干预开发的方法，目标1将前瞻性地检查纵向关系 父母对治疗联盟的看法和心理社会结果之间的关系，包括父母的压力， 在他们的孩子住进ICU期间。目标2将反复提炼一种新颖的光启发交流 基于初步研究和来自父母-临床医生二人组的输入的干预。AIM 3将试行测试 ICU中SNI患儿父母及其临床医生干预可行性研究， 可接受性和初步疗效。此应用程序将支持博盖兹博士的职业发展，因为它与 拥有对她作为一名独立临床调查员的成功至关重要的其他专业知识，包括 培训：1)纵向队列研究；2)心理社会干预发展；3)开展 随机对照试验(RCT)。博盖兹博士的职业发展将得到高度熟练和 成功的指导和咨询团队，在重症患者的纵向队列研究方面具有专业知识 儿童和他们的父母、照片启发、心理社会干预发展和临床试验。这个 博盖兹博士将完成这个项目的环境是无与伦比的，有机会获得指导， 课程、临床和办公空间、研究和资助管理以及行政支持。这 应用程序是第一个表征治疗联盟和其他对患者福祉重要的变量 在ICU中为SNI儿童的父母和开发一种新的沟通干预措施 这群人的独特需求。此应用程序具有重要意义，因为它旨在缓解 弱势和研究不足的父母群体，他们的孩子在ICU得到不成比例的照顾，原因是 得了重病。在这个职业发展奖结束时，Bogetz博士将接受可扩展的培训 干预、试验数据和出版物，使她能够成功提交和承担R01级项目 检验沟通干预将改善父母心理社会结果的假设 在孩子的危重疾病期间感染SNI的儿童。