Participation in meaningful occupation : how do young adults living with cerebral palsy experience the quality of their participation?

Pieterse, Gisele Shaline (2013-03)

Thesis (MOccTher)--Stellenbosch University, 2013.

Thesis

ENGLISH ABSTRACT: Participation in meaningful occupations is what defines us as human beings and is an important indicator of health and well-being. It is the way we experience the world around us and is closely linked to quality of life. As an occupational therapist at a school for learners with special educational needs, the researcher was interested in how young adults with a diagnosis of Cerebral Palsy (CP) who attended this school, experience their participation or the lack thereof in occupations and if it contributes to meaning and fulfilment in their lives? She established through informal conversation with some of these young adults or their parents, that they experience unemployment, unhappiness and poor integration within the community. The aim of this study was therefore to describe how young adults living with CP in economically disadvantaged communities within the Western Cape, experience the quality of their participation in meaningful occupations. A qualitative phenomenological study design was used, enabling the researcher to explore the value and meaning participants attach to different occupations, the participants perceptions of their experience and the factors impacting on their participation. The study population was young adults between the ages of 18-28 years with a diagnosis of CP, who attended the previously mentioned school and who exited school over the duration of the past nine years. The researcher used purposive maximum variation sampling, to ensure variation in terms of diagnosis, living arrangements, employment and marital status. Data collection took the form of ten face-to-face semi-structured individual interviews and inductive content analysis was utilized to analyse data. The following four themes emerged from the data: overcoming challenges; having equal opportunities; barriers holding me back and the future is mine to shape. These young adults participated in a variety of meaningful occupations and have learned to utilize various strategies to overcome the difficulties they faced in this process. The following factors influenced their participation positively: having meaningful relationships; accepting their disability and nurturing a positive attitude; being proud of their achievements; positive work experiences and involvement in the community. Factors contributing to these young adults not experiencing meaningful participation were the following: their perception of themselves and also how they perceived being treated by others; non-acceptance of their physical circumstances and disability; incompetence and poor self-confidence; termination of previously meaningful occupations; challenges with interpersonal relationships and unsatisfactory work experiences. The need to be as independent as possible was of utmost importance to all these young adults, as it was an indicator of being in control of their own lives. Given the above information, the researcher recommends a transition preparation program for senior phase learners that will include sessions on work habits, social skills, transportation, self-employment and integration into the community to be implemented at the school. Supported employment options should be explored as well to ensure maximum employment among these learners exiting school. A follow-up system should be established to evaluate the effectiveness of the above-mentioned program.

AFRIKAANSE OPSOMMING: Deelname in betekenisvolle aktiwiteite is uniek aan die mens en is ook ‘n belangrike aanduiding van gesondheid en welstand. Ons ervaar die wêreld rondom ons deur betekenisvolle deelname, was nou verbind word kwaliteit van lewe. Tydens haar werk as ‘n arbeidsterpeut by ‘n skool vir leerders met spesiale onderrig behoeftes, het die navorser begin belangstel in hoe jongmense met ‘n diagnose van serebraalgestremdheid (wat oudleerders is) hulle deelname aan aktiwiteite of die gebrek daaraan ervaar en of dit bydra tot betekenisvolheid en vervulling in hulle lewens. Sy het deur informele gesprekke met van hierdie jongmense of hul ouers vasgestel dat hulle ervaring ongelukkig, werkloos and swak geïntegreed in hulle gemeenskap is. Die doel van hierdie studie was dus om te beskryf hoe jongmense met ‘n diagnose van serebraalgestremdheid wat in ekonomies benadeelde gemeenskappe binne the Weskaapse Provinsie woon, die kwaliteit van hul deelname aan betekenisvolle aktiwiteite ervaar. Die navorser het ‘n kwalitatiewe fenomenologiese studie ontwerp gebruik sodat sy die volgende aspekte kon verken: die waarde en betekenis wat die studie deelnemers aan spesifieke aktiwiteite heg; hulle persepsie van hulle ervaringe, asook die faktore wat deelname beïnvloed. Die studiepopulasie was jongmense tussen die ouderdomme van 18-28 jaar oud met ‘n diagnose van serebraalgestremdheid, wat die bogenoemde skool bygewoon en verlaat het in die afgelope nege jaar. Die navorser het ‘n doelgerigte maksimum variasie steekproef gebruik, om sodoende variasie in terme van diagnose, verblyf, werk en getroude status te verseker. Data was ingesamel deur middel van tien semi-gestruktureerde individuele onderhoude. Induktiewe inhoud-analise was gebruik om die data te ontleed en die volgende vier temas het na vore gekom naamlik: om uitdagings te oorkom; om gelyke geleenthede te hê; hindernisse wat my terughou en die toekoms is myne om te vorm. Hierdie jongmense neem deel aan ’n groot verskeidenheid aktiwiteite en het deur ondervinding verskeie strategieë aangeleer om die probleme wat hulle ervaar het te oorkom. Die volgende faktore het hulle deelname positief beïnvloed: betekenisvolle interpersoonlike verhoudings; aanvaarding van hulle gestremdheid en koestering van ‘n positiewe houding; trots op hulle prestasies; positiewe werkservaringe en betrokkenheid in hulle gemeenskap. Die faktore wat bygedrae het tot swak deelname aan aktiwiteite was die volgende: hul self-persepsie, asook hul persepsie van hoe ander hulle behandel; nie-aanvaarding van hulle gestremdheid en fisiese omstandighede; swak selfvertroue en gevoelens van onbevoegdheid; die staking van vorige betekenisvolle aktiwiteite; uitdagings in hulle verhoudings en onbevredigende werkservaringe. Hul onafhanklikheid is vir hierdie jongmense van uiterste belang, want dit is ‘n aanduiding dat hulle in beheer is van hulle eie lewens. Na aanleiding van bogenoemde informasie, maak die narvorser die volgende aanbeveling: Om ‘n voorbereidings program vir senior fase leerders te begin, wat sessies van werksgewoontes, sosiale vaardighede, transport, self-indiensneming en integrasie in die gemeenskap insluit. Die moontlikheid van ondersteunde indiensneming moet ook verken word, om maksimale indiensneming onder hierdie jongmense te verseker. ‘n Opvolg sisteem moet ook in plek gestel word om die doeltreffendheid van bogenoemde program te bepaal.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/80333
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