MGHD 2021

Background: Addressing the issues of global children’s surgery is a crucial pillar of global health equity. Despite this allotted importance, numerous gaps are still prevalent in the children's surgery field and very little attention is given to preventing neonatal morbidity and mortality caused by surgically amenable conditions in LMICs. Gastroschisis (GS) is one of the commonest congenital anomalies that can be treated through surgical interventions. In Rwanda, Centre Hospitalier Universitaire de Kigali (CHUK) is the only hospital that provides specialized neonatal surgical care services. There is a massive gap in the literature as it pertains to the experiences of parents whose children are diagnosed with gastroschisis. Objective: The objective of this study was to provide insight into the lived experiences of parents whose children were diagnosed with GS in Rwanda. Methods: A qualitative study using a phenomenological approach was conducted in Rwanda. The participants were parents who had children with gastroschisis, received treatment, and were discharged alive from CHUK. After obtaining informed consent, in-depth interviews were conducted over the phone and in person using a semi-structured interview guide. Interviews were conducted in Kinyarwanda, recorded, transcribed, and translated into English. Additionally, open reading was followed by the development of a codebook. Coding of the transcripts using Dedoose Version 9.0 was undertaken. Using thematic analysis identified codes were organized into categories which were then organized into themes. Results: A total of 11 interviews with 16 participants (5 couples and 6 mothers) were conducted. The study results framed the participants’ journey which consisted of diagnosis of gastroschisis and referral to CHUK, treatment at CHUK, and the post-discharge period. Five cross-cutting themes were identified, which were: “GS diagnosis had significant emotional impact on the parents”, “parental perception of medical care provided for their children was mostly positive’, “GS care was accompanied by financial challenges”, “support systems and religious faith were important coping mechanisms”, and “the impact of GS care extended into the post discharge period.” Conclusion: This study showed that giving birth to a child with congenital malformations like GS is associated with a complex array of challenges and experiences. Beginning from the time of delivery, where parents were informed of their child’s condition for the first time, to their hospital experience and beyond. Experiences of parents receiving care at CHUK for their child with GS was mostly positive. The financial burden of getting treatment for their child was heavy for most parents and evident throughout the journey. Most of the participants went for follow-up care and perceived that their children were doing well. Making GS a survivable condition needs much more than hospital-based care, including prenatal care, nutritional and financial support, follow-up and parental support and mental health and engagement in the care.