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

项目摘要 在儿科重症监护室中，患有严重神经损伤（SNI）的儿童占死亡人数的50%以上。 监护室（ICU）。尽管SNI儿童占儿科人口的1%，但占ICU的25% 在那里他们经历了两倍的机械通气频率。在病危期间， 父母的压力很大，当父母经历与孩子神经系统疾病有关的耻辱时， 他们无法分享有关孩子健康和家庭价值观的信息，这些信息指导着医疗保健。 与时间有限的临床医生建立关系和频繁轮换的决策。的 该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 改善重症监护室对SNI患者及其家属的临床护理至关重要。在逐步 严格的干预开发方法，目标1将前瞻性地检查纵向关系 父母对治疗联盟的看法与心理社会结果之间的关系，包括父母的压力， 在他们的孩子入住重症监护室期间AIM 2将反复改进一种新颖的光激发通信 根据初步研究和家长-临床医生二人组的输入进行干预。Aim 3将对 在SNI儿童的父母和他们在ICU的临床医生中进行干预，检查可行性， 可接受性和初步疗效。此应用程序将支持博士博格茨的职业发展，因为它符合 与她作为独立临床研究者的成功所必需的其他专业知识密切相关，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）。博格特博士的职业发展将得到一个高技能和 在重病患者中进行纵向队列研究方面拥有专业知识的成功导师和咨询团队 儿童和他们的父母，照片启发，心理社会干预的发展，和临床试验。的 Bogetz博士将完成这个项目的环境是无与伦比的，可以获得指导， 课程，临床和办公空间，研究和赠款管理，以及行政支持。这 应用是第一个表征治疗联盟和其他变量的重要福祉 ICU中SNI儿童的父母，并开发一种针对SNI儿童的新型沟通干预措施。 这一人群的特殊需求。这个应用程序是重要的，因为它旨在缓解压力之间的一个 弱势和未得到充分研究的父母群体，他们的孩子在ICU接受护理， 严重的疾病。在这个职业发展奖结束时，博格特博士将接受培训， 干预措施、试验数据和出版物，使她能够成功提交并承担R 01级项目 检验沟通干预将改善父母心理社会结果的假设 SNI患儿在其重症期间的情况。

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.