Exploring the lived experiences of parents caring for infants with gastroschisis in Rwanda: The untold story
Samuel Kidane1, Semay Desta Shamebo1, Edmond Ntaganda2
1Bill and Joyce Cummings Institute of Global Health, University of Global Health Equity, Butaro, Rwanda.
Insights
Parental experiences with gastroschisis (GS) in Rwanda reveal significant emotional and financial burdens. Support systems and improved healthcare services are crucial for enhancing care for children with this congenital anomaly.
Area of Science:
- Global Health
- Pediatric Surgery
- Congenital Anomalies
Background:
- Pediatric surgery, vital for health equity, is under-prioritized globally, particularly in low- and middle-income countries.
- Gastroschisis (GS), a treatable congenital anomaly, highlights disparities in neonatal surgical care access in Rwanda, where services are centralized.
- Parental experiences with gastroschisis in Rwanda remain under-explored, necessitating research into their lived realities.
Purpose of the Study:
- To explore the lived experiences of parents whose children were diagnosed with gastroschisis (GS) in Rwanda.
- To identify the emotional, financial, and social impacts of GS on Rwandan families.
- To inform improvements in healthcare services and support systems for pediatric surgical conditions.
Main Methods:
- A qualitative study employing semi-structured interviews with parents of children diagnosed with GS.
- Interviews were conducted with parents of children discharged alive from the hospital between May and July 2021.
- Data analysis involved transcription, translation, coding using a structured code-book, and thematic analysis via Dedoose software.
Main Results:
- Sixteen parents participated, revealing five key themes: significant emotional impact of GS diagnosis, satisfaction with life-saving care despite delays and medication shortages, substantial financial challenges, the importance of support systems, and the extended impact of GS care post-discharge.
- Parents experienced shock due to lack of prior knowledge about gastroschisis.
- Support from faith and peer groups was crucial for coping.
Conclusions:
- Parental experiences with gastroschisis in Rwanda are emotionally taxing and financially burdensome, extending beyond hospital stays.
- While medical care was largely satisfactory, improvements in prenatal services, timely treatment initiation, medication availability, and financial assistance are recommended.
- Strengthening support systems, including peer, spiritual, and financial aid, is essential to enhance the overall care experience for families affected by gastroschisis.
Abstract:
Pediatric surgery is a crucial pillar of health equity but is often not prioritized in the global health agenda, especially in low-and middle-income countries. Gastroschisis (GS) is a type of structural congenital anomaly that can be treated through surgical interventions. In Rwanda, neonatal surgical care is only available in one hospital. The experience of parents of children born with gastroschisis has not been previously studied in Rwanda. The objective of this study was to explore the lived experiences of parents of children diagnosed with GS in Rwanda. A qualitative study using a semi-structured interview guide was conducted. Parents who had children with gastroschisis and were discharged alive from the hospital in Rwanda were interviewed by trained data collectors, from May to July 2021. Data were transcribed, translated, and then coded using a structured code-book. Thematic analysis was conducted with the use of Dedoose software. Sixteen parents participated in the study. Five themes emerged from the data. They were: "GS diagnosis had a significant emotional impact on the parents", "Parents were content with the life-saving medical care provided for their children despite some dissatisfaction due to the delayed initiation of care and shortage of medications", "GS care was accompanied by financial challenges", "support systems were important coping mechanisms" and "the impact of GS care extended into the post-discharge period". Having a newborn with GS was an emotional journey. The lack of pre-knowledge about the condition created a shock to the parents. Parents found support from their faith and other parents with similar experiences. The experiences with the care received were mostly positive. The overall financial burden incurred from the medical treatment and indirect costs was high and extended beyond the hospital stay. Strengthening prenatal and hospital services, providing peer, spiritual and financial support could enhance the parents' experience.
