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.

项目摘要 严重神经病学障碍（SNI）的儿童占小儿密集型的50％以上 护理单位（ICU），尽管占小儿人口的1％，但SNI的儿童占ICU的25％ 他们在重病期间经历了两倍的机械通气的招生。 父母的压力很高，且受恶化的人的污名与孩子的神经系统有关 疾病，无法分享有关孩子的健康和家庭价值的信息 与时间有限的临床医生进行决策，经常旋转 该应用程序的总体目的是开发一种交流干预措施，以增强其能力 与ICU中的临床医生分享他们的观点，需求和价值观。 对于SNI及其家人的患者，ICU的临床护理至关重要 严格干预开发的方法，AIM 1将前瞻性检查Longitationsshipsss 父母对治疗联盟和社会心理结局的看法，包括父母的压力， 在孩子的ICU录取期间 基于亲律师二元组的预后研究和输入的间隔。 在ICU考试中，有SNI及其临床医生的儿童父母的干预， 可接受性和初步疗效。 与她的成功至关重要的其他专业知识紧密相关的专业知识，包括 培训：1）纵向同伴研究； 随机对照试验（RCT）。 成功的指导和咨询团队在纵向队列中具有专业知识 儿童及其父母，照相，社会心理介入干预和临床试验。 Bogetz博士完成该项目的环境是无与伦比的，可以访问指导， 课程，临床和办公空间，研究和赠款管理以及行政支持 应用是第一个表征治疗联盟和其他对福祉重要的变量的应用程序 ICU中有SNI的孩子的父母，并开发了针对您量身定制的新型交流干预措施 该申请的独特需求是重要的。 父母的脆弱且研究不足的群体，其子女由于 严重疾病。 干预，试点数据和出版物，使她能够提交并进行R01级项目 检验以下假设，即沟通间隔不佳改善了Pareng Pareng父母的社会心理结局 孩子在孩子的重病期间患有SNI的孩子。