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

项目摘要/摘要 在新生儿重症监护病房(NICU)住了2-3个月后，出生体重极低的父母 极低出生体重(VLBW)婴儿面对出院回家时战战兢兢。拥有一个存活出院的极低出生体重儿， 这些父母现在一回到家就必须执行无数的保健任务，但父母经常感到不适-- 准备好的，不知情的，不熟练的来提供这种护理的。AHRQ R21提案的目标是开发 和Pilot，NICU-2-Home服务，一种以智能 这款手机将与摩托罗拉的研究人员共同研发。NICU-2-Home将为VLBW的父母提供支持 婴儿从NICU过渡到他们的家，并最终建立一个医疗之家 婴儿的儿科医生。该提案侧重于AHRQ的信息技术、预防/护理管理、 创新，以及有特殊保健需要的妇女和儿童的优先人口(CSHCN)。 在美国，超过12%的孕妇发生早产，自 20世纪80年代初。极低出生体重的婴儿在出生体重较低时存活，诊断更严重，并患有 存活到出院的可能性更大。极低出生体重儿的父母报告说感觉失控和 出生后和出院时的压力增加。父母还报告说，他们没有做好照顾的准备 对于他们的极低出生体重婴儿，并希望从医疗保健提供者和有关以下方面的信息进行更多交流 照顾他们的极低出生体重儿。这一提议代表了一种创新的、尚未探索的方式来解决 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里 这项建议的目的是：(1)使用定性方法和迭代过程来设计NICU-2- 家庭内容服务，将支持父母从NICU过渡到家；(2)实施 NICU-2-作为父母过渡到家的家庭；以及(3)随机进行可行性研究，以 初步测试NICU-2-Home的能力：(A)提高父母照顾孩子的自我效能感和自信 VLBW婴儿，(B)通过自我报告和唾液皮质醇采样来衡量父母的压力，以及(C) 与对照组相比，加强与极低出生体重儿的接触，特别是在父亲中。目标1将是 通过焦点小组和主要利益相关者之间的迭代设计互动实现：NICU医生， 护士、社会工作者、母亲、父亲和门诊儿科医生。目标2将发生在 来自NorthShore University Health Systems和摩托罗拉研发部门信息系统专家的关键意见 目标3将包括一项可行性测试，随机抽取200名家长进行干预(接受NICU-2-Home 在他们的学习智能手机上提供服务)或控制。该提案设想了在 从NICU过渡到家，并为未来与父母更广泛的沟通策略提供了希望 VLBW婴儿和CSHCN，可能是其他新生儿群体，以及便利医疗院。数据 从这个项目中获得的经验将为AHRQ R18提供可能的信息，以支持多中心干预。

Project Summary/Abstract 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 proposal 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 proposal 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 proposal 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 proposal 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 proposal 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.