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A revision of a maternal interview questionnaire used in fetal alcohol spectrum disorder prevention programmes in South Africa

Breytenbach, Elizabeth (2014-04)

Thesis (M Speech Path)--Stellenbosch University, 2014.


ENGLISH ABSTRACT: This study was done in collaboration with the Foundation for Alcohol Related Research (FARR), a non-governmental organization whose primary objective is to develop and maintain Fetal Alcohol Spectrum Disorder (FASD) prevention programmes across South Africa. Research has shown the occurrence of FASD in South Africa to be much higher than in other parts of the world. As part of their prevention programmes, FARR uses a three part diagnostic process, including a maternal interview, a dysmorphological examination, as well as a general developmental assessment. The maternal interview questionnaire that FARR currently uses takes an average of two hours per interviewee to complete. Even though a recent study indicates that FASD prevention programmes administered by FARR can potentially reduce FASD prevalence, shorter maternal interviews could improve the use of FARR resources and the ability of FASD research studies to gather meaningful information and inform future prevention efforts. The main purpose of this study was to adjust the maternal interview questionnaire used by FARR in order to make interviews with mothers shorter while delivering the information needed for successful FASD prevention programmes. Data related to the adequacy of the adjusted maternal interview questionnaire was collected and analysed according to an action research approach in four consecutive phases. The research procedures consisted of two separate focus group interviews with five key role players from FARR. During the first focus group interview the main problems with the questionnaire was identified as being (i) the length of the questionnaire, (ii) the unsuitability of the questionnaire to interview someone other than the biological mother, and (iii) inconsistency between interviewers when using the questionnaire. During the second phase of the study the questionnaire was adjusted and revised as part of a second focus group interview. The interviewers, data capturer and data analyst who used the adjusted questionnaire as part of a larger FASD prevention programme made several suggestions on how the questionnaire could be further adjusted to suit the needs of FARR. These suggestions were addressed during the final phase of the study, after which the adjusted questionnaire was finalized. Findings from the study suggest that identified problems with FARR’s original maternal interview questionnaire were successfully addressed by the adjusted questionnaire, while simultaneously satisfying the objectives of a maternal interview as identified by participants during the first focus group interview. Results confirmed that more maternal interviews could be conducted in the same time period using the adjusted interview questionnaire compared to when the original questionnaire was used, due to the fact that the questionnaire was shorter and took less time to administer. As part of this study an additional questionnaire was developed specifically for caregiver interviews. According to FARR role players, inconsistency between interviewers was for the most past successfully addressed by the development of this additional questionnaire and the development of an interviewer guideline. Recommendations for future research include the further development and evaluation of the caregiver questionnaire and interviewer guideline.

AFRIKAANSE OPSOMMING: Hierdie studie is uitgevoer in samewerking met die “Foundation for Alcohol Related Research” (FARR), ‘n nie-regeringsorganisasie met die primêre objektief om Fetale Alkohol Spektrum Afwyking (FASA) voorkomingsprogramme in Suid-Afrika te ontwikkel en te handhaaf. Volgens navorsing is die voorkoms van FASA in Suid-Afrika beduidend hoër as in ander dele van die wêreld. ‘n Drie-delige diagnostiese proses word as deel van FARR se voorkomingsprogramme gebruik, insluitend ‘n onderhoud gefokus op moeders, ‘n dismorfologiese ondersoek, asook ‘n evaluasie van die kind se algehele ontwikkeling. Die moeder-onderhoudsvraelys wat tans deur FARR gebruik word neem gemiddeld twee ure om te voltooi. Alhoewel ‘n onlangse studie aandui dat die voorkomingsprogramme deur FARR oor die potensiaal beskik om die prevalensie van FASA te verlaag, kan korter moeder-onderhoude potensieël daartoe lei dat bronne beter benut word, asook dat FASA voorkomingstudies betekenisvolle inligting versamel vir die ontwikkeling van toekomstige voorkomingsprogramme. Die hoofdoel van die huidge studie was om die moeder-onderhoudsvraelys wat tans deur FARR gebruik word aan te pas, om sodoende die onderhoude met moeders korter te maak terwyl die nodige inligting vir suksesvolle FASA voorkomingsprogramme steeds verkry word. Gedurende hierdie studie is data rakende die toereikendheid van die aangepaste moederonderhousdvraelys versamel en geanaliseer volgens ‘n aksie-navorsingsbenadering in vier opeenvolgende fases. Die navorsingsprosedures het bestaan uit twee afsonderlike fokusgroeponderhoude met vyf van die sleutelrolspelers van FARR. Gedurende die eerste fokusgroeponderhoud is die hoofprobleme met die vraelys geïdentifiseer as (i) die lengte van die vraelys, (ii) die ongeskiktheid van die vraelys om ‘n onderhoud met iemand anders as die biologiese moeder te voer, en (iii) die inkonsekwentheid tussen onderhoudvoerders met die gebruik van die vraelys. Gedurende die tweede fase van die studie is die vraelys aangepas en hersien as deel van ‘n tweede fokusgroeponderhoud. Die onderhoudvoerders, data verwerker en data analis wat die aangepaste vraelys gebruik het as deel van ‘n groter FASA voorkomingsprogram het verskeie aanbevelings gemaak rakende hoe die vraelys verder aangepas kan word om te voldoen aan FARR se behoeftes. Laasgenoemde aanbevelings is aangespreek gedurende die laaste fase van die studie, waarna die aangepaste vraelys gefinaliseer is. Die bevindinge van die studie dui aan dat die geïdentifiseerde probleme met FARR se oorspronklike moeder-onderhoudsvraelys suksesvol deur die aangepaste vraelys aangespreek is, terwyl die objektiewe van ‘n moeder-onderhoud (soos geïdentifiseer deur die deelnemers aan die eerste fokusgroeponderhoud) steeds vervul is. Resultate het bevestig dat meer moeder-onderhoude in dieselfde tydsperiode met behulp van die aangepaste vraelys gevoer kon word as met die oorspronklike vraelys, as gevolg van die feit dat dit korter was en minder tyd geneem het om te voltooi. As deel van die studie is ‘n bykomstige vraelys spesifiek vir sorggewer-onderhoude ontwikkel. Volgens die FARR rolspelers is inkonsekwentheid tussen die onderhoudvoerders grootliks suksesvol aangespreek deur middel van die ontwikkeling van hierdie bykomstige vraelys asook die ontwikkeling van ‘n riglyn vir onderhoudvoerders. Aanbevelings vir verdere navorsing sluit die verdere ontwikkeling en evaluasie van die sorggewer-vraelys en onderhoudvoerder riglyn in.

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