The experiences of mothers caring for their school-going children with physical or mental disabilities in low-income communities : an ecological perspective

Chikusie Chirwa, Leah Ndija (2012-03-08)

Thesis (M Social work)--Stellenbosch University, 2012.

Thesis

ENGLISH ABSTRACT: The aim of this study was to develop an understanding of the experiences of mothers caring for their school-going children with mental or physical disabilities in low-income communities using the ecological perspective. The rationale for this research was a gap in the existing literature re-garding the experiences of mothers caring for their school-going children with mental or physical disabilities in low-income communities in South Africa, which was identified in the preliminary and main literature review. The literature review further indicated that these mothers have to struggle with several challenges, particularly in low-income communities. In order to achieve the aim of this study, four research objectives were formulated for this study. To reach the objectives of the study the researcher employed both qualitative and quantitative research methods to col-lect the data for the research. The research methodology comprised two main parts: firstly, a lit-erature study of all relevant literature on the subject matter, in order to gain the necessary in-depth understanding of the field; and secondly, qualitative and quantitative data-collection, using a semi-structured questionnaire. The first part of this study, the extensive literature review, helped firstly to provide the necessary background information on the mental and physical disabilities of school-going children, sec-ondly, it helped to establish a number of challenges that mothers caring for their disabled chil-dren face and the needs that result from them, from an ecological perspective. These were cate-gorized into four groups of needs: (1) access needs; (2) economic needs; (3) social and cultural needs; and (4) mental/psychological needs. Consequently, ways of meeting these needs were discussed, from formal support, such as government grants, to informal support, for example, the support of family and friends. Assessing the South African environment it was found that while the country has provided a very positive policy environment, through its constitution, policies and grant system, the practical implementation of this is, in many instances, inadequate. Using the findings of the first part of this thesis to create a questionnaire, its second part, the em-pirical study, presented and analysed the answers of nineteen mothers caring for their disabled children who attend the special school selected for the research study in Cloetesville, Stellenbosch; a low-income community. The questionnaire explored, among other aspects, the physical, social, emotional, psychological and economic needs of the mothers; the role of the school, fami-ly, friends, non-governmental organisations and other coping options in meeting them, as well as the mothers´ awareness of available resources. The findings in the South African low-income community corresponded to a large extent with what was indicated in the literature study. The mothers were found to live under precarious economic and employment situations, having to rely on child support and disability dependence grants. Furthermore, the mothers reported that they experienced stress, emotional and physical, as a result of having to care for disabled children. It was shown that while receiving grants and sending their children to the special school did alle-viate some of the challenges, this aid was not perceived as sufficient. On the other hand, the study confirmed and emphasized the importance of understanding and support by family and friends in helping mothers meet their needs. Moreover, it was found that most of the mothers interviewed for this thesis had a positive perception of their role as caregiver for their disabled child: for example, seeing themselves as good mothers, being proud to be self-sufficient, as well as a positive influence on the mothers‟ relationship with their family. As a consequence of the results this study, several recommendations were made for government (social development) and service providers (social workers, teachers, doctors): firstly, govern-ment should aim to achieve a better congruence between the positive policy environment in South Africa and the implementation of these policies; secondly, among other recommendations for service providers, awareness needs to be raised in communities to decrease the stigma of dis-ability and increase understanding and support. Finally, while this study was a success, it was only a first step in filling the gap in the literature on the experiences of mothers caring for their mentally and physically disabled children in South African low-income communities, and therefore needs to be complemented and tested by further research on the subject.

AFRIKAANSE OPSOMMING: Die doel van hierdie studie was om „n begrip te ontwikkel van die ervarings van moeders wat sorg vir hul skoolgaande kinders met verstandelike- of fisiese gestremdhede, in lae-inkomste gemeenskappe, deur gebruik te maak van die ekologiese perspektief. Die rasionaal vir die navorsing was, die gaping in bestaande literatuur ten opsigte van die ervarings van moeders wat sorg vir hul skoolgaande kinders met verstandelike- of fisiese gestremdhede in lae-inkomste gemeenskappe in Suid-Afrika, soos geïdentifiseer is in die voorlopige- en hoof literatuur oorsig. Die literatuur oorsig het verder aangedui dat hierdie moeders, veral in lae-inkomste gemeenskappe, verskeie uitdagings in die gesig staar. Ten einde die doel van hierdie studie te bereik, is vier navorsingsdoelwitte vir die studie geformuleer. Die navorser het beide kwalitatiewe- en kwantitatiewe navorsingsmetodes vir data-insameling gebruik, ten einde die doelwitte van die studie te bereik. Die navorsingsmetodologie het uit twee primêre dele bestaan: eerstens, „n literatuurstudie van al die relevante literatuur oor die spesifieke onderwerp, ten einde die nodige in-diepte begrip in verband met die onderwerp te ontwikkel; en tweedens, kwalitatiewe- en kwantitatiewe data-insameling, deur gebruik te maak van „n semi-gestruktureerde vraelys. Die eerste deel van die studie, naamlik die uitgebreide literatuuroorsig, het eerstens gehelp om die nodige agtergrondinligting oor verstandelike- en fisiese gestremdhede van skoolgaande kinders te voorsien en tweedens, het dit gehelp om „n aantal uitdagings te identifiseer wat moeders ervaar wat vir hul kinders met gestremdhede sorg, asook om te identifiseer watter behoeftes hierdie uitdagings tot gevolg het, vanuit „n ekologiese perspektief. Die behoeftes is gekategoriseer in vier kategorieë van behoeftes: (1) behoeftes van toeganklikheid; (2) ekonomiese behoeftes; (3) sosiale- en kulturele behoeftes; en (4) verstandelike/sielkundige behoeftes. Vervolgens, is maniere bespreek waarop hierdie behoeftes bevredig kan word, van formele ondersteuning, soos staatstoelae, tot informele ondersteuning, byvoorbeeld ondersteuning deur familie en vriende. Deur middel van die assessering van die Suid-Afrikaanse konteks, is daar bevind dat, terwyl die land „n baie positiewe beleidsomgewing voorsien, deur sy konstitusie, beleide en toelae-sisteem, is daar in baie gevalle agterstande met betrekking tot die praktiese implementering daarvan. Nadat die bevindinge van die eerste deel van hierdie tesis gebruik is om „n vraelys saam te stel, het die tweede deel van die studie, naamlik die empiriese studie, bestaan uit die voorstelling en die analisering van die antwoorde van 19 moeders wat sorg vir hul kinders met gestremdhede wat ʼn laerskool in Cloetesville, „n lae-inkomste gemeenskap in Stellenbosch, bywoon. Die vraelys het, onder andere, die fisiese-, sosiale-, emosionele-, sielkundige- en ekonomiese behoeftes van die moeders, die rol van die skool, familie, vriende, nie-regeringsorganisasies en ander hanteringsopsies om die voorafgenoemde behoeftes te bereik, asook die moeders se bewustheid van beskikbare hulpbronne, ondersoek. Die bevindinge in die Suid-Afrikaanse lae-inkomste gemeenskap het grootliks ooreengestem met die bevindinge aangedui in die literatuurstudie. Daar is bevind dat die moeders hulself in baie moeilike ekonomiese- en werksituasies bevind het, wat beteken het dat hul moes staatmaak op kinderondersteunings- en ongeskiktheidstoelae. Verder, het die moeders gerapporteer dat hul emosionele- en fisiese stres ervaar het, as „n gevolg van hul verantwoordelikheid om vir hul kinders met gestremdhede te sorg. Daar is ook bevind dat, alhoewel die ontvangs van toelae en die feit dat hul kinders spesiale skole bygewoon het, sommige van hul uitdagings verlig het, was dit nie as voldoende beskou nie. Aan die ander kant, het die studie die belangrikheid van die begrip en ondersteuning van familie en vriende om moeders te help om hul behoeftes te bevredig, bevestig en beklemtoon. Daar is ook bevind dat die meeste van die moeders wat aan die studie deelgeneem het, positiewe persepsies van hul rol as versorgers van hul gestremde kinders gehad het: byvoorbeeld, deur hulself as goeie moeders te sien, deur trots te wees daarop om self-onderhoudend te wees, asook deurdat hul rol as versorgers, „n positiewe invloed op hul verhoudings met hul familie gehad het. As „n gevolg van die resultate van die studie, is verskeie aanbevelings aan die regering (Maatskaplike Ontwikkeling) en diensverskaffers (maatskaplike werkers, onderwysers, dokters) gemaak: eerstens, behoort die regering te poog om „n beter kongruensie tussen die positiewe beleidsomgewing in Suid-Afrika en die implementering van hierdie beleide te bereik; tweedens, onder ander aanbevelings aan diensverskaffers, moet bewustheid in gemeenskappe geskep word, ten einde die stigma gekoppel aan gestremdheid te verminder en om begrip en ondersteuning te verhoog. Laastens, alhoewel die studie „n sukses was, is dit slegs „n eerste stap met betrekking tot die vervulling van die gaping in literatuur in verband met die ervarings van moeders wat sorg vir hul verstandelike- en fisies gestremde kinders in Suid-Afrikaanse lae-inkomste gemeenskappe. Hierdie onderwerp moet egter gekomplimenteer en getoets word deur verdere navorsing.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/20264
This item appears in the following collections: