NICU-2-HOME: Using HIT to support parents of NICU graduates transitioning home

描述（由申请人提供）：在新生儿重症监护室（NICU）2-3个月后，极低出生体重（VLBW）婴儿的母亲和父亲面临着恐惧的出院回家。有一个VLBW婴儿已经存活出院，这些父母现在必须执行无数的卫生保健任务，一旦在家里，但父母往往感到准备不足，不知情，不熟练提供这种护理。这项AHRQ R21应用的目标是开发和试点NICU-2-Home服务，这是一项以智能手机为中心的健康信息技术（IT）概念，将与摩托罗拉的研究人员一起创建。NICU-2-Home将为VLBW婴儿的父母提供支持，因为他们从NICU过渡到他们的家，并最终与婴儿的儿科医生建立医疗之家。该应用程序侧重于信息技术、预防/护理管理、创新以及有特殊保健需要的妇女和儿童优先人群的AHRQ优先事项。 在美国，早产发生在超过12%的怀孕中，自20世纪80年代初以来增加了36%。极低出生体重婴儿在出生体重较低时存活，诊断更严重，存活出院的可能性更大。极低出生体重婴儿的父母报告说，他们在出生后和出院回家时感到失控和压力增加。父母还报告说，他们没有准备好照顾他们的VLBW婴儿，并希望更多的沟通，从医疗保健提供者和信息照顾他们的VLBW婴儿。这款应用代表了一种创新的、尚未探索的方式来满足这些父母的需求，使用当前的智能手机和其他技术来支持他们向家庭的过渡。 本申请的目的是：（1）使用定性方法和迭代过程来设计NICU-2-家庭内容服务，其将在父母从NICU过渡到家庭时支持父母;（2）在父母过渡到家庭时实现NICU-2-家庭;和（3）进行随机可行性研究，初步测试NICU-2-Home在以下方面的能力：（a）提高父母照顾极低出生体重婴儿的自我效能和信心，（B）通过自我报告和唾液皮质醇采样测量，减少父母压力，（c）与对照组相比，增加对极低出生体重婴儿的参与，特别是在父亲中。目标1将通过焦点小组和主要利益相关者之间的迭代设计互动来实现：NICU医生，护士和社会工作者，母亲，父亲和护理点门诊儿科医生。目标2将在北岸大学卫生系统和摩托罗拉研发中心的信息系统专家的关键投入下实现。目标3将涉及一项可行性测试，将200名父母随机分为干预组（在其研究智能手机上接受NICU-2-家庭服务）或对照组。该应用程序设想了从NICU过渡到家庭期间的IT新方法，并有望在未来与VLBW婴儿和CSHCN（可能是其他新生儿人群）的父母进行更广泛的沟通策略，并促进医疗之家。从该项目中获得的数据和经验将为可能的AHRQ R18提供信息，以支持多中心干预。 公共卫生相关性：在新生儿重症监护室（NICU）2-3个月后，极早产儿的父母必须过渡到家庭和社区儿科医生。该项目结合了健康信息技术，智能手机和其他技术来设计，实施和测试NICU-2-Home，这是一种以患者和患者为中心的信息和通信服务，旨在帮助父母完成这一过渡。这项研究将导致更好地了解信息，沟通和技术需求的极端早产儿的父母，因为他们过渡到家里，这反过来可能适用于其他新生儿重症监护病房和可能的其他新生儿人口，并可能促进建立一个医疗之家。

DESCRIPTION (provided by applicant): After 2-3 months in the Neonatal Intensive Care Unit (NICU), mothers and fathers of Very Low Birth Weight (VLBW) infants face discharge home with trepidation. Having a VLBW infant that has survived to discharge, these parents now must perform a myriad of health care tasks once at home, yet parents often feel ill- prepared, uninformed, and unskilled to provide this care. The goal of this AHRQ R21 application is to develop and pilot, the NICU-2-Home service, a health information technology (IT) concept centered around the smart phone that will be created with researchers at Motorola. NICU-2-Home will provide support to parents of VLBW infants as they transition from the NICU to their homes and eventually establish a medical home with the infant's pediatrician. This application focuses on the AHRQ priorities of IT, prevention/care management, innovation, and the priority populations of women and children with special health care needs (CSHCN). Premature birth occurs in more than 12% of pregnancies in the United States, a 36% increase since the early 1980s. VLBW infants are kept alive at lower birth weights, with more severe diagnoses, and with a greater likelihood of surviving to discharge. Parents of VLBW infants report feeling a loss of control and increased stress after birth and when being discharged home. Parents also report feeling unprepared to care for their VLBW infant and desire greater communication from healthcare providers and information about caring for their VLBW infant. This application represents an innovative, and as yet unexplored, way to address the needs of these parents, using current smartphone and other technology to support their transition to home. The aims of this application are: (1) to use qualitative methods and an iterative process to design the NICU-2- Home content service that will support parents as they transition to home from the NICU; (2) to implement NICU-2-Home as parents are transitioning to home; and (3) to conduct a feasibility study with randomization to pilot test the ability of NICU-2-Home to (a) improve parent's self-efficacy and confidence in caring for their VLBW infant, (b) decrease parental stress as measured by self-report and salivary cortisol sampling, and (c) enhance involvement with their VLBW infants compared to controls, especially among fathers. Aim 1 will be achieved via focus groups and iterative design interactions among the major stakeholders: NICU physicians, nurse, and social workers, mothers, fathers, and point-of-care outpatient pediatricians. Aim 2 will occur with key input from Information System's experts at NorthShore University Health Systems and Motorola R & D. Aim 3 will involve a feasibility test with randomization of 200 parents to intervention (receiving NICU-2-Home service on their study smartphone) or control. This application envisions new approaches to IT during the transition to home from the NICU and holds promise for future broader communication strategies with parents of VLBW infants and CSHCN, possibly other newborn populations, and facilitation of a medical home. Data and experience gained from this project will inform a possible AHRQ R18 to support a multi-center intervention. PUBLIC HEALTH RELEVANCE: After 2-3 months in the Neonatal Intensive Care Unit (NICU), parents of extremely premature babies have to transition to home and their community pediatrician. This project combines health information technology, smartphones, and other technologies to design, implement, and test NICU-2-Home, a patient-and caregiver-centered informational and communication service to help parents during this transition. This study will lead to a better understanding of the information, communication and technological needs of parents of extremely premature babies as they transition to home, which may in turn be applied to other NICUs and possibly other newborn populations, and may facilitate the establishment of a medical home.