Everyone has the right to participate : exploring the lived experiences of adolescents with cerebral palsy and their involvement in physical activity

Conchar, Lauren (2014-04)

Thesis (MA)--Stellenbosch University, 2014.

Thesis

ENGLISH ABSTRACT: Engagement in physical activity is a basic human right and has numerous benefits for mental well-being. Persons with disabilities are often denied this right due to a number of barriers existing on physiological, psychological and structural levels. Adolescents with motor impairments may be even further marginalised due to the physical nature of their impairment as well as being at a developmental stage where their opinions may not be taken into account based on their age. Research that has been conducted in this area has mostly focused on the accounts of parents and teachers with little voice being given to adolescents. This research aimed to explore the lived experiences of a group of adolescents with cerebral palsy (CP) and their involvement in physical activity. The sample group consisted of 15 adolescents with CP between the ages of 12 and 18 in the Western Cape. Semi-structured interviews were conducted with the participants. In addition, three staff members were interviewed in order to add a secondary layer of data to the study. The interviews were analysed using interpretative phenomenological analysis which aims to give voice to participants and to make meaning of these accounts through interpretation by the researcher. Five major themes emerged from the data, namely: (1) “When they call me cripple” – what it means to have a motor impairment, (2) My experience of physical activity – perceived benefits, facilitators and barriers to participation, (3) Protective factors and coping strategies employed by participants to overcome barriers to participation, (4) What I would like and what I recommend, and (5) Perceptions of staff members at the school. These themes were discussed through a theoretical framework focused on the psychological and social factors which influence an individual’s participation in (or avoidance of) physical activity. While this theoretical framework is based on able-bodied persons, it was interesting to compare the experiences of adolescents with CP. The findings were further discussed in comparison to the relevant literature, although the purpose of qualitative research is not to necessarily generalise findings. This discussion yielded similarities and differences in terms of experiences relating to barriers and facilitators to participation. In addition, the findings supported the notion that adolescents with disabilities know what they want and have valuable input to offer in terms of their own experiences. Recommendations include further studies being conducted with groups of adolescents with disabilities other than CP as well as in other areas of South Africa. This could give a more rounded understanding of the experiences of adolescents with disabilities and could better inform projects that could be developed.

AFRIKAANSE OPSOMMING: Betrokkenheid in fisiese aktiwiteit is ‘n basiese mensereg en het verskeie voordele vir verstandelike gesondheid. Mense wat gestremdhede het word dikwels ontken van hierdie reg, as gevolg van getalle struikelblokke wat bestaan op fisiologiese, sielkundige en strukturele vlakke. Adolessente met motoriese gestremdhede mag dalk nog meer gemarginaliseerde word as gevolg van die fisiese aard van hul gestremdheid, asook die feit dat hulle in ‘n ontwikkelings stadium is waar hulle opinie dalk nie in ag geneem word nie weens hulle ouderdom. Navorsing wat uitgevoer is in hierdie gebied het meestal gefokus op die mededeling van die ouers en onderwysers en het min stem gegee aan die adolessente self. Hierdie navorsing het daarop gemik om die beleefde ervaringe van ‘n groep adolessente met serebrale verlamming en hulle betrokkenheid in fisiese aktiwiteit te ondersoek. Die monster groep het bestaan uit 15 adolessente met serebrale verlamming tussen die ouderdomme van 12 en 18 in die Wes-Kaap. Semi- gestruktureerde onderhoude was gedoen met die deelnemers. Bykomend is daar ook onderhoude gedoen met drie personeellede om ‘n sekondêre vlak van data aan die studie te verleen. Die onderhoude was geanaliseer deur gebruik te maak van interpreterende fenomenologiese analise, wat daarop gemik is om ‘n stem te gee aan die deelnemers en om sin te maak van hulle beskrywinge deur interpretasie van die navorser. Vyf groot temas het na vore gekom uit die data, naamliks: (1) Wanneer hulle my verlam noem – wat dit beteken om ‘n motorise gestremdheid te hê, (2) My ondervinding van fisiese aktiwiteit – waargenome voordele, fasiliteerders en struikelblokke tot deelname, (3) Beskermende faktore en hanteringsvaardighede wat gebruik word deur die deelnemers om struikelblokke tot deelname te oorkom, (4) Waarvan ek sal hou en wat ek voorstel, en (5) Persepsies van personeellede by die skool. Hierdie temas was bespreek deur ‘n teoreties raamwerk wat gefokus is op die sielkundige en sosiale faktore wat ‘n individu se deelname aan (of vermyding van) fisiese aktiwiteit beïnvloed. Alhoewel hierdie teoretiese raamwerk gebaseer is op ongestremde persone, was dit interessant om die ondervindinge te vergelyk met adolessente met serebrale verlamming. Die bevindinge is verder bespreek in vergelyking met relevante literatuur, al is die doel van kwalitatiewe navorsing nie noodwendig om bevindinge te veralgemeen nie. Die bespreking het ooreenkomste, so wel as verskille ten opsigte van ondervindinge met betrekking tot hindernisse en fasiliteerders tot deelname opgelewer. Daarbenewens verleen die bevindinge ook ondersteuning aan die idee dat adolessente met gestremdhede weet wat hulle wil hê en dat hulle waardevolle insette het om te lewer in terme van hulle eie ervarings. Aanbevelings sluit in dat daar verdere studies gedoen moet word met ‘n groep adolessente wat ‘n gestremdheid anders as serebrale verlamming het, asook om verdere studies te doen in ander areas van Suid-Afrika. Dit sal ‘n meer afgeronde begrip van die ondervindinge van adolessente met gestremdhede lewer en sal ook beter instaat wees om projekte in te lig wat dalk ontwikkel mag word.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/86388
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