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.

Thesis (M Social Work)--Stellenbosch University, 2012. / ENGLISH ABSTRACT: Fetal alcohol spectrum disorders (FASD) is caused by maternal drinking during pregnancy. Pre-natal drinking has a range of deleterious effects including physical, mental and behavioural consequences for the affected child. Although FASD is completely preventable, it is irreversible with consequences that last into adulthood. The range of effects of FASD forms a spectrum with fully developed FAS on the one end and no effects on the other end of the spectrum. The Western Cape has one of the highest recorded rates of FAS in the world. This seriously affects almost all systems in society and strains the already overburdened educational-, health-, social- and judicial systems. For this reason preventing FASD is of the utmost importance and requires a comprehensive approach on multiple levels. This study explores and describes FASD prevention services in the Bonnievale, Robertson, Ashton and Montagu-areas – a wine-producing area in the Western Cape. Available FASD prevention services on all levels of prevention, the focus-areas of the different prevention activities, collaboration and co-ordination between the role-players and obstacles in delivering prevention services, was examined. By adopting an ecological approach, FASD prevention services could be investigated on multiple levels. This study used a combination of quantitative and qualitative research. An exploratory design and a purposive sampling method were used. Participants were interviewed individually and with the help of a semi-structured questionnaire. The findings of the empirical investigation show that, although prevention efforts are applied on the universal, selective and indicated levels of prevention, a lack of formal prevention efforts that are actively pursued - especially on the level of indicated prevention - exists. This is aggravated by the absence of formal co-ordination of services and structured systems of referrals. NGO‟s and government departments are, as a result, not clear about their respective roles and responsibilities and women with the highest risk for having a child with FAS, therefore, fall through the cracks of the system. This happens partly because social workers are often perceived as the only agents for social change in the community. According to the ecological approach all levels (micro, meso and macro) of organizations in the social environment should work together for change by repeating prevention messages on the different levels and thereby reinforcing it. In the study area, however, most FAS prevention services were on the micro-level with few on the meso-level and virtually none on macro-level. Participants identified a lack of co-ordination, unplanned families, a lack of resources, a lack of training and training material and low levels of education as obstacles in service delivery. Recommendations resulting from the study indicate that FAS prevention will benefit from structured, formal programs on all levels of prevention. This will require non-government organizations and government departments to co-ordinate services and to develop a formal system of referral amongst the role-players. Training of personnel in clinics, NGO‟s, government departments and volunteers, as well as the development of training material targeted at people on different levels of education, should receive attention. It is, in conclusion, recommended that community organizations and structures such as churches, places of business, farmer‟s associations and liquor outlets are actively involved in the prevention of FASD. / AFRIKAANSE OPSOMMING: Fetale Alkohol Spektrum Afwykings (FASA) word veroorsaak deur alkoholgebruik tydens swangerskap. Alkoholgebruik tydens swangerskap het „n reeks skadelike effekte, insluitend fisiese, psigiese en gedragsafwykings in die geaffekteerde kind. Alhoewel FASA heeltemal voorkombaar is, is dit onomkeerbaar en duur die gevolge daarvan voort in volwassenheid. Die reeks effekte van FASA vorm „n spektrum met volledig ontwikkelde FAS aan die een kant en geen effekte nie aan die ander kant van die spektrum. Die Wes-Kaap het een van die hoogste aangetekende voorkomssyfers van FAS in die wêreld. Dit affekteer feitlik alle sisteme in die samelewing en plaas nog meer druk op die reeds oorlaaide opvoedkundige-, gesondheids-, maatskaplike- en regssisteme. Om hierdie rede is die voorkoming van FASA van uiterste belang en word „n omvattende benadering op veelvuldige vlakke vereis. Hierdie studie ondersoek en beskryf FASA voorkomingsdienste in die Bonnievale-, Robertson-, Ashton- en Montagu-area – „n wynproduserende streek in die Wes-Kaap. Die beskikbaarheid van FASA voorkomingsdienste op alle vlakke van voorkoming, die fokus-areas van die verskillende voorkomingsaktiwiteite, samewerking en koördinering van dienste tussen die rolspelers, sowel as struikelblokke in voorkomingsdienste, is ondersoek. Deur die ekologiese benadering aan te neem, kon FASA voorkomingsdienste op veelvuldige vlakke ondersoek word. Die studie kombineer kwantitatiewe en kwalitatiewe navorsing. Die ontwerp van die studie is verkennend en daar is „n doelbewuste steekproef gedoen. Indivuduele onderhoude met deelnemers is met behulp van semi-gestruktureeerde vraelyste gevoer. Die bevindinge van die empiriese ondersoek toon dat, alhoewel voorkomingspogings aangewend word op die universele, selektiewe en indikatiewe voorkomingsvlakke, daar 'n gebrek bestaan aan formele voorkomingspogings wat aktief nagestreef word, veral op die indikatiewe vlak. Dit word vererger deur die afwesigheid van formele koördinering van dienste en gestruktureerde verwysingsisteme. Nie-regeringsorganisasies en staatsdepartemente het gevolglik nie duidelikheid oor hul onderskeie rolle en verantwoordelikhede nie. Die gevolg hiervan is dat vroue met die hoogste risiko om geboorte te skenk aan kinders met FAS, deur die krake in die sisteem val. Dit geskied deels omdat maatskaplike werkers dikwels gesien word as die enigste agente vir maatskaplike verandering in die gemeenskap. Volgens die ekologiese benadering behoort alle vlakke (mikro, meso en makro) van organisasie in die sosiale omgewing saam te werk om verandering teweeg te bring deurdat voorkomingsboodskappe op die verskillende vlakke te herhaal en sodoende te versterk word. In die studie-area is die meeste voorkomingsdienste egter op mikro-vlak gelewer met min op meso-vlak en feilik geen op makro-vlak nie. Deelnemers aan die studie het „n gebrek aan koördinasie van dienste, onbeplande gesinne, „n gebrek aan hulpbronne, „n gebrek aan opleiding en opleidingsmateriaal en lae vlakke van geletterdheid geïdentifiseer as struikelblokke in dienslewering. Aanbevelings wat uit die studie voortvloei, dui aan dat FASA voorkomingsdienste sal baat vind by gestruktureerde, formele programme op alle vlakke van voorkoming. Dit sal vereis dat nie-regeringsorganisasies en staatdepartemente hul dienste koördineer en „n formele verwysingstelsel tussen die verskillende rolspelers ontwikkel. Opleiding van personeel in klinieke, NRO‟s, staatsdepartemente en vrywilligers, sowel as die ontwikkeling van opleidingsmateriaal wat persone op verskillende vlakke van opvoeding teiken, behoort aandag te geniet. Dit word laastens ook aanbeveel dat gemeenskapsorganisasies en strukture byvoorbeeld kerke, besighede, boere-verenigings en verkoopspunte vir alkohol, aktief betrek word by die voorkoming van FASA.

This institutional ethnography relies on observations, interviews, and textual analyses to explore the experiences of mothers and children who attend a women-centered agency in Vancouver, Canada where a hot lunch, child care in the emergency daycare, and participation in group activities are vital forms of support. Mothers who come to the centre have many concerns related to their need for safe housing, a sustainable income, adequate food, child care, and support. And like mothers anywhere, they have concerns about their children. While many of the children, the majority of them First Nations, have never had a diagnostic assessment for fetal alcohol syndrome (FAS) or for the relatively new umbrella category, ‘fetal alcohol spectrum disorder’ (FASD), a number of the mothers were concerned or even knew that their children had FAS. This thesis asks – how does it happen that mothers have come to know their children in this way? The study critically examines how FASD knowledge and practices actually work in the setting and what they accomplish. My analysis traces how ruling practices for constructing and managing ‘problem’ mothers and children coordinate work activities for identifying children deemed to be ‘at risk’ for FASD. In their efforts to help their children and improve their opportunities for a better life, mothers become willing participants in group activities where they learn how to attach the relevancies of the FASD discourse to their children’s bodies or behaviours. They also gain instruction which helps them to confess their responsibility for children’s problems. While maternal alcohol use as the cause of FASD is contested in literature and in some work sites it is, in this setting, taken as a fact. This study discovers how institutional work processes involving government, medicine, and education actually shape and re-write women’s and children’s experiences into forms of knowledge that make mothers and children institutionally actionable. It is only by exposing the relations of power organizing mothers’ work that it may be possible to re-direct attention to mothers’ and children’s embodied concerns and relieve mothers of the overwhelming responsibility for which they are held and hold themselves to be accountable. / Graduate