Exploring the value of a Facebook support group for parents of children with autism

Gerber, Karin (2014-04)

Thesis (MEdPsych)--Stellenbosch University, 2014.

Thesis

ENGLISH ABSTRACT: The worldwide increase in the diagnosis of autism, the immense pressure parents experience in raising a child with autism, as well as the accessibility of internet-based support, provided a unique opportunity to research parents’ experiences in such an online community. Knowledge about their experiences, the value and meaning of an online support group in their daily lives, as well as which parents access online support, could shed light on how online communities could possibly be better utilised to provide instant and low-cost information and support to parents who are otherwise excluded from face-to-face support groups due to various constraints. Additionally, research about online support groups for autism in South Africa seems to be non-existent. This research could contribute significantly to the gap in knowledge about South African parents’ experiences. The aim of the study was to engage with South African parents participating in a Facebook support group in finding out what value (positive or negative) it adds to their lives and determining the meaning they ascribe to their participation in this group. This was a qualitative study based on a social constructionist theoretical framework as it is concerned with how every person’s reality is shaped through social interaction with others, as well as through the historical and cultural influences in that person’s life. Participants for this study were purposively selected and data was collected through observations of their exchanges within the Facebook support group, as well as through an electronic interview questionnaire. These interactions and correspondence were analysed using thematic analysis. The research findings indicated the multifaceted role that the Facebook support group plays in the lives of each parent who participated. The amount of support they derived from the group and the value of the group depended on each parent’s unique needs and experiences, as well as their unique interpretations of the interactions within the group. Their interactions within the group showed, however, that the group provided a platform where they were able to construct their own identities as autism parents as the experts of their children’s lives, as well as advocates in the realm of autism. Their experiences were in line with international literature on online support groups.

AFRIKAANSE OPSOMMING: Die wêreldwye toename in die diagnose van outisme, die geweldige druk wat ouers ervaar om ʼn kind met outisme groot te maak, asook die toeganklikheid van internet-gebaseerde ondersteuning, het ʼn unieke geleentheid geskep om navorsing te doen oor ouers se ervarings in sodanige aanlyn gemeenskap. Kennis rakende hulle ervarings, die waarde en betekenis van ʼn aanlyn ondersteuningsgroep in hulle daaglikse lewens, asook watter tipe ouers aanlyn raad soek, sou lig kon werp op die onderwerp van hoe sulke aanlyn gemeenskappe moontlik beter aangewend kan word ten einde onmiddelike en goedkoop inligting en ondersteuning te bied aan ouers wat andersins uitgesluit word van kontak-ondersteuningsgroepe as gevolg van verskeie beperkings. Hierdie navorsing kan ʼn belangrike bydrae lewer tot die verbetering van die gebrekkige kennis oor aanlyn ondersteuningsgroepe vir outisme in Suid-Afrika. Hierdie navorsing kan grootliks bydra tot die gebrekkige kennis oor Suid-Afrikaanse ouers se ervarings. Die doel van hierdie studie was om betrokke te raak by ouers wat deelneem aan ʼn Facebook ondersteuningsgroep ten einde vas te stel watter waarde (positief of negatief) dit toevoeg tot hulle lewens, asook om te bepaal watter betekenis hulle heg aan hul eie deelname aan die groep. Hierdie was ʼn kwalitatiewe studie gebaseer op ʼn sosiaal-konstruksionistiese teoretiese raamwerk, aangesien dit gemoeid was met hoe elke persoon se realiteit beïnvloed word deur sosiale interaksie met ander, asook die historiese en kulturele invloede in daardie persoon se lewe. Deelnemers aan hierdie studie was doelgerig gekies en data is deur waarneming van hul interaksie binne die Facebook ondersteuningsgroep versamel, asook deur ‘n elektroniese onderhoudsvraelys. Hierdie interaksies en korrespondensie is deur tematiese analise ontleed. Die navorsingsbevindings het die veelkantige rol wat die Facebook ondersteunings-groep in die lewens van elke deelnemer gespeel het, aangetoon. Die mate van ondersteuning wat elkeen uit die groep ontvang het, asook die waarde van die groep, was afhanklik van elkeen se unieke behoeftes en ervarings en elkeen se unieke vertolking van die interaksie binne die groep. Die ouers se interaksie binne die groep het egter aangedui dat die ondersteuningsgroep ʼn platform daargestel het waar hulle hulle eie identiteite as outisme ouers, en kundiges oor hul kinders se lewens, kon konstrueer. Benewens dit was hulle ook kampvegters op die terrein van outisme. Hulle ervarings stem ooreen met internasionale literatuur rakende aanlyn ondersteuningsgroepe.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/86270
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