Exploring the lived experiences of parents caring for infants with gastroschisis in Rwanda: The untold story

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.

[1]  Merin K Kurian,et al.  Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study , 2021, The Lancet.

[2]  V. Bhandari,et al.  Gastroschisis: A State-of-the-Art Review , 2020, Children.

[3]  L. Samad,et al.  Children at the heart of global surgery: children’s surgery in low- and middle-income countries , 2020 .

[4]  D. Ozgediz,et al.  Barriers to Pediatric Surgical Care in Low-Income Countries: The Three Delays' Impact in Uganda. , 2019, The Journal of surgical research.

[5]  R. Ray,et al.  Perspectives of time: a qualitative study of the experiences of parents of critically ill newborns in the neonatal nursery in North Queensland interviewed several years after the admission , 2019, BMJ Open.

[6]  N. Sevdalis,et al.  Improving outcomes for neonates with gastroschisis in low-income and middle-income countries: a systematic review protocol , 2018, BMJ Paediatrics Open.

[7]  L. Hinton,et al.  What can make things better for parents when babies need abdominal surgery in their first year of life? A qualitative interview study in the UK , 2018, BMJ Open.

[8]  Sandra L. Faulkner.  Writing Practice , 2017 .

[9]  L. N. Lukolo,et al.  Congenital abnormalities: experiences of parents atoshakati intermediate hospital, oshana region, Namibia , 2017 .

[10]  Yashoda Manickchund,et al.  Paediatric surgery outreach: analysis of referrals to a tertiary paediatric surgery service to plan an outreach programme Kwa-Zulu Natal, South Africa , 2017, Tropical doctor.

[11]  T. Yasui,et al.  Omphalocele and Gastroschisis in Newborns: Over 16 Years of Experience from a Single Clinic , 2017, Journal of neonatal surgery.

[12]  D. Ozgediz,et al.  Gastroschisis in Uganda: Opportunities for improved survival. , 2016, Journal of pediatric surgery.

[13]  W. Carlo,et al.  Neonatal mortality and coverage of essential newborn interventions 2010 - 2013: a prospective, population-based study from low-middle income countries , 2015, Reproductive Health.

[14]  M. Shrime,et al.  Catastrophic expenditure to pay for surgery worldwide: a modelling study. , 2015, The Lancet. Global health.

[15]  E. Nathan,et al.  The long term physical consequences of gastroschisis. , 2014, Journal of pediatric surgery.

[16]  P. Midrio,et al.  Abdominal wall defects: prenatal diagnosis, newborn management, and long-term outcomes. , 2014, Seminars in pediatric surgery.

[17]  M. Nzayirambaho,et al.  Universal health coverage in Rwanda: dream or reality , 2014, The Pan African medical journal.

[18]  P. Phillips-Howard,et al.  Exploring Risk Perception and Attitudes to Miscarriage and Congenital Anomaly in Rural Western Kenya , 2013, PloS one.

[19]  H. Rode,et al.  Training and practice of pediatric surgery in Africa: past, present, and future. , 2012, Seminars in pediatric surgery.

[20]  L. Chirdan,et al.  Neonatal surgery in Africa. , 2012, Seminars in pediatric surgery.

[21]  M. C. Canavarro,et al.  Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly , 2011 .

[22]  Christopher M. Dodgion,et al.  Systematic Review of Barriers to Surgical Care in Low-Income and Middle-Income Countries , 2011, World Journal of Surgery.

[23]  G. Amponsah.  Challenges of anaesthesia in the management of the surgical neonates in Africa. , 2010, African journal of paediatric surgery : AJPS.

[24]  E. Ameh,et al.  Challenges of training and delivery of pediatric surgical services in Africa. , 2010, Journal of pediatric surgery.

[25]  F. Apiribu,et al.  Exploring the reasons for novice nurse educators’ transition from practice to academia in Ghana , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[26]  M. Redshaw,et al.  Maternal perceptions of neonatal care , 1995, Acta paediatrica.

[27]  I. Ajzen.  The theory of planned behavior , 1991 .

[28]  D. Drotar,et al.  The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model. , 1975, Pediatrics.

[29]  Melbourne Victoria.  A Ministry of Health , 1917, Nature.

[30]  D. Abeasi,et al.  What mothers go through when the unexpected happens: A look at challenges of mothers with preterm babies during hospitalization in a tertiary institution in Nigeria , 2020 .

[31]  Victor C. Emordi,et al.  Challenges of congenital malformations: an African perspective , 2018 .

[32]  R. Hind.  An exploration of parents' experiences of having an infant who requires surgery using Interpretative Phenomenological Analysis , 2014 .

[33]  A. Tenbrunsel,et al.  Organizational Behavior and Human Decision Processes , 2013 .

[34]  E. Ameh,et al.  Ruptured exomphalos and gastroschisis: a retrospective analysis of morbidity and mortality in Nigerian children , 2000, Pediatric Surgery International.