{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,10]],"date-time":"2026-06-10T12:36:06Z","timestamp":1781094966391,"version":"3.54.1"},"reference-count":38,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2022,6,15]],"date-time":"2022-06-15T00:00:00Z","timestamp":1655251200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosglobalpublichealth.org"],"crossmark-restriction":false},"short-container-title":["PLOS Glob Public Health"],"abstract":"<jats:p>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: \u201cGS diagnosis had a significant emotional impact on the parents\u201d, \u201cParents 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\u201d, \u201cGS care was accompanied by financial challenges\u201d, \u201csupport systems were important coping mechanisms\u201d and \u201cthe impact of GS care extended into the post-discharge period\u201d. 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\u2019 experience.<\/jats:p>","DOI":"10.1371\/journal.pgph.0000439","type":"journal-article","created":{"date-parts":[[2022,6,15]],"date-time":"2022-06-15T17:56:21Z","timestamp":1655315781000},"page":"e0000439","update-policy":"https:\/\/doi.org\/10.1371\/journal.pgph.corrections_policy","source":"Crossref","is-referenced-by-count":10,"title":["Exploring the lived experiences of parents caring for infants with gastroschisis in Rwanda: The untold story"],"prefix":"10.1371","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2680-2306","authenticated-orcid":true,"given":"Samuel","family":"Kidane","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3404-1233","authenticated-orcid":true,"given":"Semay Desta","family":"Shamebo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9202-1500","authenticated-orcid":true,"given":"Edmond","family":"Ntaganda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5999-6971","authenticated-orcid":true,"given":"Robin T.","family":"Petroze","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zahirah","family":"McNatt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7742-5934","authenticated-orcid":true,"given":"Rex","family":"Wong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melany","family":"Rabideau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2022,6,15]]},"reference":[{"key":"pgph.0000439.ref001","doi-asserted-by":"crossref","first-page":"34","DOI":"10.21037\/jphe-2020-gs-08","article-title":"Children at the heart of global surgery: children\u2019s surgery in low- and middle-income countries","volume":"4","author":"A Abbas","year":"2020","journal-title":"Journal of Public Health and Emergency"},{"issue":"3","key":"pgph.0000439.ref002","doi-asserted-by":"crossref","first-page":"134","DOI":"10.4103\/0189-6725.70410","article-title":"Challenges of anaesthesia in the management of the surgical neonates","volume":"7","author":"G. 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Harris","year":"2014","journal-title":"Journal of Pediatric Surgery"},{"issue":"1","key":"pgph.0000439.ref007","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1097\/01.XPS.0000522257.34234.7d","article-title":"Challenges of congenital malformations: an African perspective","volume":"14","author":"VC Emordi","year":"2018","journal-title":"Annals of Pediatric Surgery"},{"issue":"5","key":"pgph.0000439.ref008","doi-asserted-by":"crossref","first-page":"710","DOI":"10.1542\/peds.56.5.710","article-title":"The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model","volume":"56","author":"D Drotar","year":"1975","journal-title":"Pediatrics"},{"issue":"2","key":"pgph.0000439.ref009","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1016\/0749-5978(91)90020-T","article-title":"The theory of planned behavior","volume":"50","author":"I. Ajzen","year":"1991","journal-title":"Organizational Behavior and Human Decision Processes"},{"key":"pgph.0000439.ref010","unstructured":"National Institute of Statistics of Rwanda (NISR). Population Projection. http:\/\/statistics.gov.rw\/statistical-publications\/subject\/population-size-and-population-characteristics Accessed March\/2021"},{"key":"pgph.0000439.ref011","unstructured":"National Institute of Statistics of Rwanda (NISR), Ministry of Health Rwanda, and The DHS Program ICF International. Rwanda Demographic and Health Survey Key Indicators Report 2019\u201320. Calverton, Maryland, USA. https:\/\/www.statistics.gov.rw\/publication\/demographic-and-health-survey-20192020-key-indicators"},{"key":"pgph.0000439.ref012","doi-asserted-by":"crossref","DOI":"10.11604\/pamj.2014.17.232.3471","article-title":"Universal health coverage in Rwanda: dream or reality","volume":"17","author":"M Nyandekwe","year":"2014","journal-title":"Pan African Medical Journal"},{"key":"pgph.0000439.ref013","unstructured":"Rwanda Ministry of Health. (2017). National Surgical, Obstetrics, And Anesthesia Plan 2018\u20132024 (No. 1). Ministry Of Health. https:\/\/www.moh.gov.rw\/fileadmin\/user_upload\/Moh\/Publications\/Strategic_Plan\/NSOAP_Rwanda-_Approved1.pdf"},{"key":"pgph.0000439.ref014","unstructured":"CHUK\u2014the university teaching hospital of Kigali [Internet]. Chuk.rw. [cited 2021 Aug 23]. http:\/\/chuk.rw\/about-chuk\/article\/background"},{"issue":"3","key":"pgph.0000439.ref015","doi-asserted-by":"crossref","first-page":"238","DOI":"10.1525\/irqr.2017.10.3.238","article-title":"Writing Practice","volume":"10","author":"S. Faulkner","year":"2017","journal-title":"International Review of Qualitative Research"},{"issue":"6","key":"pgph.0000439.ref016","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"A. Tong","year":"2007","journal-title":"International Journal for Quality in Health Care"},{"issue":"4","key":"pgph.0000439.ref017","doi-asserted-by":"crossref","first-page":"320","DOI":"10.1080\/02646838.2011.634398","article-title":"Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly","volume":"29","author":"A Fonseca","year":"2011","journal-title":"Journal of Reproductive and Infant Psychology"},{"issue":"11","key":"pgph.0000439.ref018","doi-asserted-by":"crossref","first-page":"1772","DOI":"10.1016\/j.jpedsurg.2016.07.011","article-title":"Gastroschisis in Uganda: Opportunities for improved survival","volume":"51","author":"AS Wesonga","year":"2016","journal-title":"J Pediatr Surg"},{"issue":"S2","key":"pgph.0000439.ref019","doi-asserted-by":"crossref","DOI":"10.1186\/1742-4755-12-S2-S6","article-title":"Neonatal mortality and coverage of essential newborn interventions 2010\u20132013: a prospective, population-based study from low-middle income countries","volume":"12","author":"S Dhaded","year":"2015","journal-title":"Reproductive Health"},{"issue":"10297","key":"pgph.0000439.ref020","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1016\/S0140-6736(21)00767-4","article-title":"Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study","volume":"398","author":"Global PaedSurg Research Collaboration","year":"2021","journal-title":"Lancet"},{"issue":"2","key":"pgph.0000439.ref021","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1053\/j.sempedsurg.2012.01.007","article-title":"Neonatal surgery in Africa","volume":"21","author":"L Chirdan","year":"2012","journal-title":"Seminars in Pediatric Surgery"},{"issue":"4","key":"pgph.0000439.ref022","doi-asserted-by":"crossref","first-page":"305","DOI":"10.1177\/0049475517718103","article-title":"Paediatric surgery outreach: analysis of referrals to a tertiary paediatric surgery service to plan an outreach programme Kwa-Zulu Natal, South Africa","volume":"47","author":"Y Manickchund","year":"2017","journal-title":"Tropical Doctor"},{"issue":"3","key":"pgph.0000439.ref023","doi-asserted-by":"crossref","first-page":"610","DOI":"10.1016\/j.jpedsurg.2009.11.007","article-title":"Challenges of training and delivery of pediatric surgical services in Africa","volume":"45","author":"L Chirdan","year":"2010","journal-title":"Journal of Pediatric Surgery"},{"issue":"2","key":"pgph.0000439.ref024","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1053\/j.sempedsurg.2012.01.002","article-title":"Training and practice of pediatric surgery in Africa: past, present, and future","volume":"21","author":"E Elhalaby","year":"2012","journal-title":"Seminars in Pediatric Surgery"},{"issue":"5","key":"pgph.0000439.ref025","doi-asserted-by":"crossref","first-page":"941","DOI":"10.1007\/s00268-011-1010-1","article-title":"Systematic Review of Barriers to Surgical Care in Low-Income and Middle-Income Countries","volume":"35","author":"C Grimes","year":"2011","journal-title":"World Journal of Surgery"},{"issue":"1\u20132","key":"pgph.0000439.ref026","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1007\/s003830050006","article-title":"Ruptured exomphalos and gastroschisis: a retrospective analysis of morbidity and mortality in Nigerian children","volume":"16","author":"E Ameh","year":"2000","journal-title":"Pediatric Surgery International"},{"issue":"6","key":"pgph.0000439.ref027","doi-asserted-by":"crossref","first-page":"593","DOI":"10.1111\/j.1651-2227.1995.tb13705.x","article-title":"Maternal perceptions of neonatal care","volume":"84","author":"M Redshaw","year":"1995","journal-title":"Acta Paediatrica"},{"issue":"5","key":"pgph.0000439.ref028","doi-asserted-by":"crossref","first-page":"e026344","DOI":"10.1136\/bmjopen-2018-026344","article-title":"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","volume":"9","author":"S Ireland","year":"2019","journal-title":"BMJ Open"},{"issue":"6","key":"pgph.0000439.ref029","doi-asserted-by":"crossref","first-page":"e020921","DOI":"10.1136\/bmjopen-2017-020921","article-title":"What can make things better for parents when babies need abdominal surgery in their first year of life? 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Theses.gla.ac.uk. 2014 [cited 10 August 2021]. https:\/\/theses.gla.ac.uk\/5601\/."},{"issue":"2","key":"pgph.0000439.ref031","doi-asserted-by":"crossref","first-page":"228","DOI":"10.14419\/ijm.v5i2.8106","article-title":"Congenital abnormalities: experiences of parents at Oshakati intermediate hospital, Oshana region, Namibia","volume":"5","author":"M Sankombo","year":"2017","journal-title":"International Journal of Medicine"},{"key":"pgph.0000439.ref032","doi-asserted-by":"crossref","first-page":"S38","DOI":"10.1016\/S2214-109X(15)70085-9","article-title":"Catastrophic expenditure to pay for surgery worldwide: a modelling study","volume":"3","author":"M Shrime","year":"2015","journal-title":"The Lancet Global Health"},{"key":"pgph.0000439.ref033","unstructured":"Ministry of Health G. Annual Report July 2012-June 2013. Kigali, Rwanda: Ministry of Health;2013. https:\/\/extranet.who.int\/countryplanningcycles\/sites\/default\/files\/planning_cycle_repository\/rwanda\/moh_annual_report_july_2012-june_2013.pdf"},{"issue":"1","key":"pgph.0000439.ref034","doi-asserted-by":"crossref","first-page":"22","DOI":"10.4103\/JNMS.JNMS_39_19","article-title":"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","volume":"7","author":"D Abeasi","year":"2020","journal-title":"Journal of Nursing and Midwifery Sciences"},{"key":"pgph.0000439.ref035","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1016\/j.jss.2019.03.058","article-title":"Barriers to Pediatric Surgical Care in Low-Income Countries: The Three Delays\u2019 Impact in Uganda","volume":"242","author":"N Kakembo","year":"2019","journal-title":"Journal of Surgical Research"},{"key":"pgph.0000439.ref036","unstructured":"WHO, Global monitoring report on financial protection in health. (2019). Geneva: World Health Organization and International Bank for Reconstruction and Development \/ The World Bank; 2020. License:CC BY-NC-SA 3.0 IGO. http:\/\/www.who.int\/health_financing\/topics\/financial-protection\/monitoring-sdg\/en\/."},{"issue":"11","key":"pgph.0000439.ref037","doi-asserted-by":"crossref","first-page":"e80551","DOI":"10.1371\/journal.pone.0080551","article-title":"Exploring Risk Perception and Attitudes to Miscarriage and Congenital Anomaly in Rural Western Kenya","volume":"8","author":"S Dellicour","year":"2013","journal-title":"PLoS ONE"},{"issue":"12","key":"pgph.0000439.ref038","doi-asserted-by":"crossref","first-page":"302","DOI":"10.3390\/children7120302","article-title":"Gastroschisis: A State-of-the-Art Review","volume":"7","author":"V Bhat","year":"2020","journal-title":"Children"}],"container-title":["PLOS Global Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pgph.0000439","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,6,15]],"date-time":"2022-06-15T17:57:08Z","timestamp":1655315828000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pgph.0000439"}},"subtitle":[],"editor":[{"given":"Bethany","family":"Hedt-Gauthier","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2022,6,15]]},"references-count":38,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2022,6,15]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pgph.0000439","relation":{},"ISSN":["2767-3375"],"issn-type":[{"value":"2767-3375","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,6,15]]}}}