A bio-psycho-social follow-up model for children born with oesophageal atresia

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dc.contributor.advisorGoussard, Pierreen_ZA
dc.contributor.advisorSidler, Danielen_ZA
dc.contributor.advisorVan Wyk, Lizelleen_ZA
dc.contributor.authorDe Vos, Corneen_ZA
dc.contributor.otherStellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Paediatrics and Child Health. Paediatric Surgery.en_ZA
dc.date.accessioned2024-01-15T06:04:30Zen_ZA
dc.date.accessioned2024-05-09T13:36:21Zen_ZA
dc.date.available2024-01-15T06:04:30Zen_ZA
dc.date.available2024-05-09T13:36:21Zen_ZA
dc.date.issued2024-03en_ZA
dc.descriptionThesis (PhD)--Stellenbosch University, 2024.en_ZA
dc.description.abstractENGLISH ABSTRACT:Oesophageal atresia (OA) is a rare congenital disease presenting with neonatal peri-operative complications and long-term consequences. We did a retrospective study investigating the 30- day outcome of neonates born with OA in our unit and found our results comparable with international studies. In a prospective study, we strived to identify different factors that should be included in the long-term clinical follow-up for OA patients. Most of our patients reported gastro-intestinal symptoms, such as dysphagia and gastro-oesophageal reflux (GER), respiratory symptoms (specifically recurrent respiratory tract infections), and feeding difficulties. We found abnormal anthropology in most of our patients. Our endoscopy results showed that all patients with symptoms such as dysphagia, food bolus impaction or GER had abnormal findings. We strongly recommend the inclusion of endoscopy in the long-term follow-up of OA patients. An CA-specific quality of life (QoL) analysis, utilizing the EA-QoL questionnaire for children aged 2-7 years (parent-report) and children aged 8-17 years (child and parent-report) was performed during follow-up visits. In the younger patient group, the eating domain was the domain most affecting the QoL of these children. In comparison, the eating and health domains were perceived as impacting QoL by both parents and children in the older age group. The older children themselves reported a high perceived impact in the body perception domain, making this an essential topic to address in the long-term follow-up of older OA children. In a self-administered psycho-social follow-up of parents of OA children, we identified that these parents were at risk for developing post-traumatic stress disorder (PTSD) symptoms as well as anxiety. Parents with OA children older than 6 months at the time of the visit, at ending routine out-patient department visits, and those with major post-operative complications during the neonatal period were at higher risk for the development of PTSD symptoms, when compared to their counterparts. Prematurity was a significant risk factor for the presence of anxiety in this group of parents. A prospective international collaboration revealed the importance of OA-specific support groups as part of the multidisciplinary team (MDT). Support groups have several benefits for their members, which include sharing of similar experiences. We highlighted the need to include siblings in the family-centred approach to difficult cases, especially if these neonates are admit ed to the neonatal intensive care unit. We concluded that a complete bio-psycho-social long-term follow-up programme is essential for children born with OA, forming part of an MDT approach. These teams should be consulted in the neonatal phase and care should be continued through the paediatric years into adulthood. A comprehensive bio-psycho-social follow-up programme should include investigations of CA-specific symptoms with appropriate treatment, QoL assessments of patients, and regular psycho-social follow-up of parents, in an at empty to improve the overall outcome of children born with OA and their families.en_ZA
dc.description.abstractAFRIKAANSE OPSOMMING: Esofageale atresie (EA) is 'n seldsame aangebore siekte wat neonatale peri-operatiewe komplikasies, sowel as langtermyn gevolge kan hé. Ons het 'n retrospektiewe studie gedoen wat die 30-dae-uitkoms van neonate gebore met EA in ons eenheid ondersoek het en gevind dat ons resultate vergelykbaar is met internasionale studies. In 'n prospektiewe studie het ons daarna gestreef om die verskillende faktore te identifiseer wat ingesluit moet word in 'n langtermyn kliniese opvolg van EA pasiénte. Die meeste van ons pasiénte het gastro-intestinale simptome soos disfagie en gastro-esofageale refluks (GER), asook respiratoriese simptome (spesifiek herhalende lugweginfeksies) en voedingprobleme, gerapporteer. Abnormale antropologie is by die meeste van ons pasiénte gevind. Ons endoskopie resultate het getoon dat alle pasiénte met 'n kliniese indikasie (insluitend observasie endoskopie en simptome soos disfagie, voedsel obstruksie of GER) abnormale endoskopiese prosedures en/of histologie gehad het. Ons beveel die insluiting van endoskopie as deel van die langtermyn opvolg van EA-pasiénte ten strengste aan. 'n EA-spesifieke lewensgehalte analise is uitgevoer vir kinders 2-7 jaar oud (ouer-verslag) asook vir kinders 8-17 jaar oud (kind-en-ouer verslag) tydens opvolg besoeke. In die jonger pasiént groep is gevind dat die afdeling oor eet hulle lewensgehalte die meeste beinvloed het. In vergelyking, is beide die eet sowel as die gesondheid afdelings deur ouers en kinders in die ouer ouderdomsgroep beskou as items wat hulle lewensgehalte affekteer het. Die ouer kinders het self 'n waargenome impak in die liggaampersepsie afdeling gerapporteer, wat dit 'n noodsaaklike onderwerp maak om aan te spreek in die langtermyn opvolg spesifiek van die kinders. In 'n self-toegediende psigososiale opvolg van ouers van EA-kinders, het ons eidentifiseer dat hierdie ouers 'n risiko het vir die ontwikkeling van post-traumatiese stresversteuring (PTSV) simptome sowel as angsversteuring. Ouers met EA-kinders wat ouer as 6 maande oud was tydens die besoek, die wat roetine-besoeke aan die buite pasiént afdeling bygewoon het en diegene wie se kinders ernstige post-chirurgie komplikasies gedurende die neonatale tydperk beleef het, het 'n groter risiko gehad vir die ontwikkeling van PTSV simptome. Prematuriteit was 'n beduidende risiko faktor vir die teenwoordigheid van angs in hierdie groep ouers. 'n Prospektiewe internasionale samewerking het die belangrikheid van EA-spesifieke ondersteunings groepe, as deel van die multidissiplinére span (MDS) geidentifiseer. Ondersteunings groepe hou verskeie voordele vir hul lede in, wat die deel van soortgelyke ervarings insluit. Ons het die behoefte beklemtoon om broers en susters in die gesinsgeoriénteerde benadering tot moeilike gevalle in te sluit. Ons gevolgtrekking is dat 'n volledige biopsigososiale langtermyn opvolg program noodsaaklik is vir kinders wat met EA gebore is. Die program behoort deel te wees van 'n MDS benadering wat alreeds begin kort na geboorte en voortgesit word deur die pediatriese jare tot in volwassenheid. 'n Omvat ende biopsigososiale opvolg program moet EA-spesifieke simptome met toepaslike behandeling insluit asook lewensgehalte assesserings van pasiénte en gereelde psigososiale opvolg van hul ouers, in 'n poging om die algehele uitkoms van kinders gebore met EA en hul gesinne te verbeter.af_ZA
dc.description.versionDoctoralen_ZA
dc.embargo.terms2024-07-15en_ZA
dc.format.extent174 pages : illllustrationsen_ZA
dc.format.extentix, 165 pages : illustrationsen_ZA
dc.identifier.urihttps://scholar.sun.ac.za/handle/10019.1/130869en_ZA
dc.language.isoen_ZAen_ZA
dc.publisherStellenbosch : Stellenbosch Universityen_ZA
dc.rights.holderStellenbosch Universityen_ZA
dc.subject.lcshEsophagus -- Atresiaen_ZA
dc.subject.lcshGenetic disordersen_ZA
dc.subject.lcshNeonatologyen_ZA
dc.subject.lcshGastrointestinal systemen_ZA
dc.subject.lcshUCTDen_ZA
dc.titleA bio-psycho-social follow-up model for children born with oesophageal atresiaen_ZA
dc.typeThesisen_ZA
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Doctoral Degrees (Paediatric Surgery)