C. G. Kerl1,2, J. K. Chica1,2, M. A. Bartz-Kurycki1,2, M. J. Ottosen4, E. I. Garcia1,2, N. B. Hebballi1,2, K. C. Kelly3, K. Tsao1,2, C. U. Aneji3,5, E. A. Hillman3,5, B. Tang1,2, M. T. Austin1,2 1McGovern Medical School at UTHealth,Department Of Pediatric Surgery,Houston, TX, USA 2Children’s Memorial Hermann Hospital,Department Of Pediatric Surgery,Houston, TX, USA 3Children’s Memorial Hermann Hospital,Division Of Neonatology,Houston, TX, USA 4Cizik School of Nursing at UTHealth,Houston, TX, USA 5McGovern Medical School at UTHealth,Department Of Pediatrics,Houston, TX, USA
Introduction: Transitioning from the Neonatal Intensive Care Unit (NICU) to home is a vulnerable time for parents of NICU infants. This transition to home is the period in which parental knowledge, skills, and resources can have tremendous impact on the infant’s outcome. Uncertainty exists as to the barriers parents experience when transitioning home from the NICU. We conducted a group interview with parents of former NICU infants to understand challenges faced by parents during the discharge process when transitioning home.
Methods: A group interview was conducted November, 2017 with ten parents of former NICU infants recruited from the NICU Parent Advisory Council and by recommendations of NICU social workers/discharge coordinators. The group interview was conducted by a qualitative researcher, audio recorded and transcribed. A thematic content analysis of the coded data was performed by the research team. A base of 40 codes was created inductively and deductively by the research team to answer the research question. Codes were assigned to quotations in the transcript by members of the research team and then discussed as a group to reach consensus of the emergent themes.
Results: This group of parents identified multiple challenges in the discharge process. Major themes included lack of support, information sharing, lack of preparedness or parental education on durable medical equipment, expectations, and feelings of anxiety / overwhelming stress (see Table). Parents often lacked a robust support system on an emotional, mental, and physical level. Anxiety and stress surrounding the unknown and the information gap that existed with respect to the complex care of their child were commonly described by parents. Some parents also felt unprepared with regard to operating various forms of durable medical equipment. They stated that information regarding discharge schedule and care management changes were not always clearly communicated. Parents highlighted the use of social media to seek further information to address these barriers. To help manage the complex care of their children, parents developed their own schedules, checklists, and alarms.
Conclusion: This study identified specific barriers that parents of our NICU infants have when transitioning home. As such, this raises the need to create a program that may address these barriers in order to improve not only patient satisfaction, but also improve healthcare outcomes in our most vulnerable population.
