Neurodevelopmental screening accessibility : translating the ‘Autism – Tics, ADHD & Other Comorbidities’ [A-TAC] inventory into isiXhosa and Afrikaans.

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dc.contributor.advisorKafaar, Zuhayren_ZA
dc.contributor.authorNel, Jacquesen_ZA
dc.contributor.otherStellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology.en_ZA
dc.date.accessioned2022-03-10T17:51:42Zen_ZA
dc.date.accessioned2022-04-29T09:24:45Zen_ZA
dc.date.available2022-03-10T17:51:42Zen_ZA
dc.date.available2022-04-29T09:24:45Zen_ZA
dc.date.issued2022-04en_ZA
dc.descriptionThesis (MA)--Stellenbosch University, 2022.en_ZA
dc.description.abstractENGLISH SUMMARY: Background. Much of the current knowledge surrounding developmental disabilities stems from well-resourced, higher income countries. In addition, historic disparities in resource allocation have translated into a medical treatment gap for many communities in South Africa. In this context, where low mental health literacy has been indicated in the public healthcare sector, it is important to understand the factors that hamper effective child health and wellness detection. It is furthermore important to develop screening tools that enable such early detection of disorder. Study Aims. I sought to translate and adapt the “Autism - Tics, ADHD & Other Comorbidities” (A-TAC) multi-domain neurodevelopmental screener into isiXhosa and Afrikaans, to overcome the lack of such South African comprehensive screens. I further sought to understand the perspectives and experiences of isiXhosa-speaking parents with regards to health screening and neurodevelopmental awareness. Methods. The A-TAC underwent isiXhosa and Afrikaans forward- and back-translation, and source language comparison, before adaptations commenced with first-language speakers. Additionally, a purposively sampled group of 6 isiXhosa-speaking parents were recruited. Parents assisted both in the adaptation of the translated isiXhosa A-TAC, as well as participated in a focus group interview regarding perceptions of and receptivity to healthcare forms, mental health detection and child neurodevelopmental themes. Focus group input underwent thematic analysis. Results. The A-TAC was translated into isiXhosa and Afrikaans and full, novel drafts of each screen have been produced. On the side of screening tool adaptation, 38% of Afrikaans items and 72% of isiXhosa items required significant revision to the original translations received. The current research produced a carefully deliberated set of adapted screen items in each language, with the isiXhosa version having additionally undergone focus group deliberation. From thematic analysis, four themes of note arose. 1) Language barriers: a lack of isiXhosa in clinics impedes discussion and can result in shame for parents. 2) Healthcare disillusionment: a lack of capacity and privacy in clinics may dampen engagement with the healthcare system. 3) Conceptions of disabilities: developmental concerns may not be spotted, may be understood as arising from emotional turmoil in the child, may be synonymised with poor learning or intellectual impairment, or may be understood as the result of bewitchment. 4) Management routes opted for: parents may choose inaction, or proactively pursue discipline, self-training, school support and healthcare support strategies. Conclusion. Draft translations of the isiXhosa and Afrikaans A-TAC have been successfully produced, with recommendations for further contextual adaptation and testing proposed. My research achieved its goal of unpacking parent perceptions surrounding healthcare detection and conceptions of Neurodevelopmental Disorders. Although discussion emerged within more of a biomedical framework, it highlighted barriers to healthcare service and the need for additional support avenues, including within the school environment. A novel element to emerge was the experience of language shame in the public healthcare setting.en_ZA
dc.description.abstractAFRIKAANS OPSOMMING: Agtergrond. Baie van die huidige kennis rondom ontwikkelingsgestremdhede kom uit lande met hoër inkomste en meer hulpbronne. Boonop het historiese ongelykhede in die toewysing van hulpbronne in baie gemeenskappe in Suid-Afrika gelei tot 'n leemte in mediese behandeling. In hierdie konteks, waar lae geestesgesondheidsgeletterdheid in die openbare gesondheidsektor aangedui is, is dit belangrik om die faktore te verstaan wat effektiewe opsporing van kinders se gesondheid en welsyn belemmer. Dit is verder belangrik om siftingsinstrumente te ontwikkel wat so 'n vroeë opsporing van ontwikkelingsversteuring moontlik kan maak. Studiedoelwitte. Ek het ten doel gehad om die “Autism - Tics, ADHD & Other Comorbidities” (A-TAC) multi-domein neuro-ontwikkeling siftingsinstrument in isiXhosa en Afrikaans te vertaal en aan te pas, om die gebrek aan sulke Suid-Afrikaanse omvattende siftingsinstrumente te verminder. Ek het verder gepoog om die perspektiewe en ervarings van isiXhosa-sprekende ouers te verstaan met betrekking tot gesondheidsifting en neuro-ontwikkelingsbewustheid. Metodes. Die A-TAC het isiXhosa en Afrikaans vorentoe- en terugvertaling ondergaan, en brontaalvergelyking, voordat aanpassings met eerstetaalsprekers begin is. Daarbenewens, was 'n doelgerigte steekproefgroep van 6 isiXhosa-sprekende ouers gewerf. Ouers het gehelp met die verwerking van die vertaalde isiXhosa A-TAC, asook aan 'n fokusgroeponderhoud deelgeneem rakende persepsies van en ontvanklikheid vir vorms van gesondheidsorg, opsporing van geestesgesondheid en temas vir kinderneurontwikkeling. Insette van die fokusgroep het 'n tematiese analise ondergaan. Resultate. Die A-TAC is in isiXhosa en Afrikaans vertaal en volledige, nuwe konsepte van elke siftingsinstrument is vervaardig. Aan die kant van die aanpassing van siftingsinstrumente, het 38% van Afrikaanse items en 72% van isiXhosa-items aansienlike hersiening vereis van die oorspronklike vertalings wat ontvang is. Die huidige navorsing het 'n noukeurig oorlegte stel aangepaste siftingsinstrument-items in elke taal opgelewer, met die isiXhosa-weergawe wat addisioneel fokusgroepberaadslaging ondergaan het. Uit tematiese ontleding het vier noemenswaardige temas ontstaan. 1) Taalhindernisse: 'n gebrek aan isiXhosa in klinieke belemmer bespreking en kan skaamte vir ouers tot gevolg hê. 2) Ontnugtering in gesondheidsorg: 'n gebrek aan kapasiteit en privaatheid in klinieke kan betrokkenheid by die gesondheidsorgstelsel belemmer. 3) Begrippe oor kindergestremdhede: ontwikkelingsbekommernisse word dalk nie raakgesien nie, kan verstaan word dat dit uit spruit uit emosionele onrus by die kind, kan gelykgestel word aan swak leer of intellektuele gestremdheid, of kan verstaan word as die gevolg van betowering. 4) Bestuursroetes waarvoor gekies is: ouers kan onaktiwiteit kies, of proaktief dissipline, selfopleiding, skoolondersteuning en gesondheidsorgondersteuningstrategieë nastreef. Afsluiting. Konsepvertalings van die isiXhosa en Afrikaans A-TAC is suksesvol vervaardig, met aanbevelings vir verdere kontekstuele aanpassing en toetsing voorgestel. My navorsing het sy doel bereik om ouers se persepsies van die opsporing van gesondheidsorg en die opvattings van NDD's uit te pak. Alhoewel bespreking meer binne 'n biomediese raamwerk na vore gekom het, het dit belemmerings vir gesondheidsorg en die behoefte aan addisionele ondersteuningspaaie, ook binne die skoolomgewing, beklemtoon. 'n Nuwe element wat na vore gekom het, was die ervaring van taalskaamte in die openbare gesondheidsorg opset. Trefwoorde. Neuro-ontwikkelingsversteurings, ESSENCE. Siftingsondersoek. Opsporing. Voorsiening vir gesondheidsorg. Ouerpersepsies. Vertaling. A-TAC.af_ZA
dc.description.versionMastersen_ZA
dc.format.extentxiii, 204 pagesen_ZA
dc.identifier.urihttp://hdl.handle.net/10019.1/124655en_ZA
dc.language.isoen_ZAen_ZA
dc.publisherStellenbosch : Stellenbosch Universityen_ZA
dc.rights.holderStellenbosch : Stellenbosch Universityen_ZA
dc.subjectNeurodevelopmental disordersen_ZA
dc.subjectDevelopmental disabilitiesen_ZA
dc.subjectHealth risk assessmenten_ZA
dc.subjectAutism spectrum disordersen_ZA
dc.subjectHealthcare Provisionen_ZA
dc.subjectParental perceptionsen_ZA
dc.subjectHealth education -- Parent participationen_ZA
dc.subjectA-TACen_ZA
dc.titleNeurodevelopmental screening accessibility : translating the ‘Autism – Tics, ADHD & Other Comorbidities’ [A-TAC] inventory into isiXhosa and Afrikaans.en_ZA
dc.typeThesisen_ZA
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