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）住了2-3个月后，极低出生体重（VLBW）婴儿的父母将带着忐忑不安的心情出院回家。有了一个存活到出院的VLBW婴儿，这些父母现在必须在家里完成无数的卫生保健任务，然而父母经常感到准备不足，不了解情况，也不熟练提供这种护理。AHRQ R21应用程序的目标是开发和试点NICU-2-Home服务，这是一种以智能手机为中心的健康信息技术（IT）概念，将由摩托罗拉的研究人员创建。新生儿重症监护室-2-之家将为VLBW婴儿的父母提供支持，帮助他们从新生儿重症监护室过渡到自己的家，并最终与婴儿的儿科医生一起建立一个医疗之家。该应用程序侧重于AHRQ的IT优先事项、预防/护理管理、创新以及具有特殊保健需求的妇女和儿童优先人群（CSHCN）。在美国，超过12%的怀孕发生早产，自20世纪80年代初以来增加了36%。VLBW婴儿以较低的出生体重存活，诊断更严重，存活到出院的可能性更大。VLBW婴儿的父母报告说，在出生后和出院回家时，他们感到失去控制和压力增加。父母还报告说，他们对照顾他们的极低体重婴儿感到没有准备好，并希望从医疗保健提供者那里得到更多的沟通和关于照顾他们的极低体重婴儿的信息。这款应用代表了一种创新的、尚未开发的方式，可以解决这些父母的需求，使用当前的智能手机和其他技术来支持他们过渡到家庭。本应用程序的目的是：(1)使用定性方法和迭代过程来设计NICU-2-家庭内容服务，以支持父母从NICU过渡到家庭；(2)在父母向家庭过渡的过程中实施新生儿重症监护病房2- home；(3)开展一项随机化的可行性研究，以试点测试NICU-2-Home的能力(a)提高父母照顾VLBW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父母的压力，以及(c)与对照组相比，提高他们对VLBW婴儿的参与，尤其是父亲。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：新生儿重症监护室医生、护士、社会工作者、母亲、父亲和护理点门诊儿科医生。目标2将由北岸大学卫生系统和摩托罗拉研发中心的信息系统专家提供关键信息。目标3将涉及一项可行性测试，随机抽取200名家长进行干预（在他们的智能手机上接受NICU-2-Home服务）或控制。该应用程序设想了从新生儿重症监护室过渡到家庭的新IT方法，并有望在未来与VLBW婴儿和CSHCN（可能是其他新生儿群体）的父母进行更广泛的沟通策略，并促进医疗之家的建立。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。

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.