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

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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.