Saturday, 28 October 2017: 3:15 PM
Advances in technology have increased survival rates for premature infants; however, patients with complex health issues such as premature infants in a Neonatal Intensive Care Unit have extended hospital stays and are discharged home with unresolved medical issues. While the birth of a new baby is a joyous occasion, parents experience high levels of stress, anxiety, grief, and difficulty coping with the unexpected delivery of their infant and transition to parenthood. Premature infants experience long term complications such as eye problems, feeding difficulties, delays in growth and neurological development, asthma, hernia, and respiratory problems. Stability and care for premature infants require extensive utilization of hospital and community health care resources as a result of chronic health sequelae. Parents require specialized preparation for discharge, and hospitals must coordinate between community resources and parent readiness. Individuals living in rural and underserved areas face unique challenges that create barriers to access health resources. A qualitative phenomenology study was conducted to bring insight and develop an understanding of how families perceive the discharge process, ability to access health care resources, and cope at home after discharge from a Level III Neonatal Intensive Care Unit located in Appalachia. A total of 10 parents were enrolled in the study and seven interviews were conducted over a period of 6 months. Parents consisted of three couples, two married mothers, and two single mothers. Transcripts were analyzed using Cresswell’s six step process, resulting in development of major and minor themes. The overarching theme, Transforming Normalcy and Settling into a Family Routine, described parents experiences of discharge readiness and transition to home. Further analysis revealed subthemes related to discharge readiness included a) shattered dreams and preconceived ideas, b) righting the ship, learning to parent a premature infant, and c) transition to home, finding solid ground. Concepts that further explain these major themes are having the carpet pulled out from under me, trying to surviving, the NICU becomes my second home, things I lost, adaptation and resilience, resourceful, playing it forward, becoming an advocate and expert, and adjustment as a new family. Families experienced stress, anxiety, PTSD, outcast, need for customized teaching and resources, and having support from multiple sources. Implications for discharge readiness include supporting parents as they adapt to a new normal for their family, navigate needed resources, and become self reliant once home.