Exploring the lived experiences of parents caring for infants with gastroschisis in Rwanda

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.