The communicative participation of adults with cerebral palsy

Levin, Karen Susan (2013-12)

Thesis (PhD)--Stellenbosch University, 2013.

Thesis

ENGLISH ABSTRACT: Conducted within a critical disability studies framework, this study explored the experience of communicative participation by adults with cerebral palsy who live with severe communication impairments. The concept of the participation of communicatively disabled people is relatively new, and the theoretical understanding of communicative participation is underdeveloped although participation is increasingly recognised as a central goal in rehabilitation. In addition, there is a paucity of information with reference to the trajectory of lifelong communication disability. Little is known about the communicative participation of adults with cerebral palsy in South Africa. Nine adults with cerebral palsy, who lived with significant communication impairments, participated in the study. They were between 32 and 49 years of age, and had lived South Africa all their lives. They were observed in social interactions in their daily lives on multiple occasions and took part in serial interviews over a six-month period. Using a pragmatist grounded theory approach, the data were analysed from an interpretive basis. Four main categories were constructed. The first category was “being misrecognised as a communicator”, which showed that the participants were not acknowledged as having equal moral participatory status in communicative exchanges. The second category, “contexts for communicating”, indicated that the participants lived with significant communication impairments which resulted in their experiencing limitations in a broad spectrum of life’s activities. The third category, “an embedded communicative self”, illuminated that the participants saw their communicative disabilities as embedded within a broader picture of being disabled, and that their communication impairments had a marked effect on their identity development. Through an analysis of lifetime contributions to communicative participation, the final category, “dynamic participation” revealed how communicative participation is a fluid, ever-changing process. Extending Ikäheimo’s (2010) model of social participation and recognition, a “dynamic recognition-theoretical model of communicative participation” is presented. Communicative participation is defined as a dynamic social process. It is undergirded by the moral recognition of the interactants as communicative partners, and is influenced by time as the dimension through which all communication takes place.

AFRIKAANSE OPSOMMING: Die studie, vanuit `n kritiese benadering, het serebraalgestermde volwassenes (wie se vermoë om te kommunikeer ernstig aangetas is) se ervaringe met betrekking tot hul deelname aan kommunikasie of situasies waarin daar gekommunikeer word, verken. Die konsep wat fokus op die deelname aan kommunikasie deur diegene wie se vermoë om te kommunikeer ernstig aangetas is, is `n relatief nuwe begrip. Die teoretiese grondslag van die konsep is onderontwikkeld, maar die konsep word toenemend gereken as een van die belangrikste doelwitte van die rehabilitasie-proses. Daar is ook`n gebrek aan inligting wat handel oor die verloop van mense se lewenslange ervaringe wie se vermoë om te kommunikeer ernstig aangetas is. Daar bestaan beperkte kennis oor volwassenes met serebraalgestremdheid in Suid-Afrika se deelname aan kommunikasie. Nege volwassenes met serebraalgestremdheid, wie se vermoë om te kommunikeer ernstig aangestas is, het deelgeneem aan die studie. Die deelnemers se ouderdomme (gedurende die tydperk waarin data-insameling plaasgevind het) het gewissel van 32 tot 49 jaar, en die deelnemers het nog altyd in Suid-Afrika gewoon. Die deelnemers se kommunikasie-gedrag gedurende verskeie sosiale situasies is waargeneem. Die deelnemers het ook oor `n periode van ses maande aan `n reeks onderhoude deelgeneem. Pragmatiese, gegronde teoretiese benadering (ook verwys na as ‘grounded theory’) is gebruik om die data te analiseer. Die bevindinge dui op vier hoof temas. Die eerste tema verwys na bevindinge wat handel oor ‘om misken te word as as iemand wat deelneem aan kommunikasie’. Die bevindinge dui daarop dat deelnemers van mening is dat hulle nie as `n gelykke beskou word gedurende situasies waarin daar gekommunikeer word. Die tweede tema verwys na ‘die konteks van kommunikasie’, en dui daarop dat weens die feit dat deelnemers se vermoë om te kommunikeer ernstig aangestas is, word hulle ook op `n verskeidenheid van lewensaktiwiteite ingeperk. Die derde tema verwys na die volgende: ‘die aantasting van die vermoë om te kommunikeer gesetel in die self’. Die tema dui daarop dat deelnemers die aantasting van hulle vermoë om te kommunikeer, sien as deel van die geheelbeeld van gestremdheid en dat die vermoë om te kommunikeer `n betekenisvolle impak op hul identiteitsontwikkel gehad het. Die lewenslange ervaringe van die deelnemers het aanleiding gegee tot die vierde en laaste tema, naamlik ‘dinamiese deelname’. Dit dui daarop dat die deelname aan kommunikasie nie staties is nie, maar voortdurend verander. Die studie bevindinge suggereer dat Ikäheimo’s (2010) se model van sosiale deelname en erkenning, uitgebrei kan word tot `n dinamiese teoretiese model wat die deelname aan kommunikasie erken. Die deelname aan kommunikasie word gedefiniëer as `n dinamiese sosiale proses. Die grondslag van die model behels die erkenning van diegene wat kommunikeer as deelgenote wat beïnvloed word deur tyd as die dimensie waardeur alle kommunikasie plaasvind.

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