The Lived Experience of Mothers whose Newborns are Hospitalized with Congenital Anomalies in a Tertiary Hospital in Central Uganda

Abstract

Background/Purpose: There is minimal literature in Uganda that describes mothers’ experiences of caring for their hospitalized newborns with congenital anomalies. Mothers who give birth to newborns with congenital anomalies often experience untold stress, worry, and fear of losing their newborns to the anomalies. The purpose of this study was to explore the lived experience of Ugandan mothers’ whose newborns are hospitalized as a result of the congenital anomalies. Theoretical/Conceptual Framework: Descriptive phenomenology as postulated by Edmund Husserl, was used to explore and describe the universal character of the mothers’ lived experience during their newborns’ hospitalization, and the meaning they attributed to it. Descriptive phenomenology emphasizes the application of a researcher’s objective mind to unravel the universal nature of a particular lived experience. Method: This qualitative study purposively sampled participants until saturation plus one more was reached. Nine eligible mothers who had their newborns hospitalized with congenital anomalies were sampled. A semi structured interview guide was used to probe the mothers’ experiences during their newborns’ hospitalization. The interviews were audio recorded and later transcribed verbatim for analysis using the Colaizzi method of qualitative data analysis. Results: The study reveals several significant factors that pertain to the lived experience of mothers whose newborns are hospitalized with congenital anomalies. Three major themes and fifteen subthemes emerged from the mothers’ narratives of their experiences. The major themes were mixed feelings and emotions, healthcare concerns and responsibilities, and participants’ support system and support needs. The sub-themes were feeling shocked, feeling worried, feeling scared, first time experiences, unknown cause of the anomalies, anticipation of blame, financial woes, pregnancy concerns, the load of care giving responsibilities, faith with hope during hospitalization, familial support, peer support, relationship with the nurses, and support needs. Conclusion: The hospitalization of newborns with congenital anomalies requires nurses to not only take care of the sick babies, but also pay close attention and care to their mothers during hospitalization. Nurses were crucial in providing and influencing the care mothers received, to reduce their physical and emotional vulnerability during their newborns’ hospitalization. Recommendations: Nurses should actively involve mothers in the care of their newborns by teaching how to bathe, feed, and bond with the babies, while also clarifying medications and treatment plans, as well as sharing with them the necessary information about congenital anomalies. Evaluating the mothers’ mental well-being and supporting them to cope with their newborns’ hospitalization can boost their emotional resilience and care-giving confidence to perform their maternal roles towards their hospitalized newborns. Keywords: Mothers’ Lived Experience, Newborns, Congenital anomalies, Family Centered Care, Descriptive Phenomenology, Colaizzi Data Analysis Method