'n Ondersoekende kwalitatiewe studie na die siektenarratiewe van individue met VIGS-demensiekompleks (Afrikaans)

Abstract

MIV/VIGS is 'n mediese toestand wat verreikende gevolge vir die individu en sy omgewing inhou. Dit het 'n direkte fisiologiese impak, asook diverse psigososiale en neurologiese gevolge op die persoon (Lowenthal, 1997). Die mees algemene enkele neurologiese komplikasie van VIGS staan bekend as VIGS-demensiekompleks (VDK) (Cournos&Bakalar, 1999). VDK word gekenmerk deur kognitiewe en motoriese disfunksie sowel as gedragsveranderinge en gemoedsversteurings of affekversteurings in verskillende grade (Price, 1996). Ten spyte van die waardevolle literatuur reeds beskikbaar oor die neurologiese, kognitiewe, motoriese en psigologiese impak van VDK, is daar steeds beperkte data oor die gevolglike invloed daarvan op kommunikasievaardighede en die individu se ervaring daarvan (Zuniga, 1999). Om hierdie rede blyk daar 'n gaping te wees in die effektiewe doelgerigte behandeling van hierdie afwyking (Druck, 2002). Die doel van hierdie studie is om ondersoek in te stel na die individu met VDK se subjektiewe siekte-ervaring met betrekking tot moontlike kommunikasiepatologie, sowel as om die rol van die spraak-taalterapeut met betrekking tot individue met VDK te definieer. Daar is van 'n enkelgevallestudie, nie-eksperimentele, beskrywende opnameontwerp gebruik gemaak. Die navorsingsdeelnemer se narratiewe is ontlok deur middel van natuurlike gesprekvoering en 'n oudiobandopname is daarvan gemaak. Die narratief is getranskribeer en die volgende drie metodes is gebruik om dit volledig en omvattend te analiseer: 1.)Plotanalise, 2.) Strukturele storie-analise volgens Labov (1982) se strukturele benadering, en 3.) Holistiese inhoudsanalise. Uit die plotanalise het dit duidelik geword dat die betrokke narratief regessief van aard is. Tydens die bespreking van die meta-narratiewe het verskeie aspekte van hierdie individu met VDK se persoonlike siekte-ervaring na vore gekom wat betref die invloed daarvan op haar vermoë om steeds haar lewenskwaliteit te handhaaf deur aan haar alledaagse lewensaktiwiteite te kan deelneem. Die ICFkomponente is as raamwerk gebruik om die verkreë inligting op 'n sinvolle wyse voor te stel. Dit wil verder voorkom of die siekte-ervaring nie tot spesifieke aspekte van menslike funksionering, onder andere kommunikasiefunksies, beperk kan word nie. Die ervaring van haar kommunikasieprobleme maak deel uit van haar algehele siekte-ervaring wat binne die konteks van haar alledaagse lewensaktiwiteite en deelname daarin plaasvind. Die identifikasie en analise van die temas het dit verder duidelik gemaak dat narratiewe 'n effektiewe metode is om insig te verkry in die individu met VDK se konteks en ervaring daarvan. 'n Geheelbeeld van die individu se funksionele vaardighede, konteks en emosionele ervarings en behoeftes is verkry, sonder om haar bloot te stel aan formele toeste en evalueringsinstrumente wat haar onbevoeg en minderwaardig kan laat voel. Die verkreë resultate impliseer ook dat die individu met VDK se siekte-ervaring sentraal is tot sy of haar mate van deelname aan alledaagse lewensaktiwiteite asook ervaring van kwaliteit van lewe. Die waarde van narratiewe in die terapeutiese behandelingsproses het ook in hierdie studie duidelik geword. Narratiewe kan suksesvol aangewend word om 'n verbeterde insig in die individu met VDK se lewe en behoeftes te verkry. ENGLISH : HIV/AIDS is a medical condition that has far-reaching consequences for the individual and his or her environment. It has a direct physiological impact, as well as diverse psychological and neurological effects on the individual (Lowenthal, 1997). The most common single neurological complication of AIDS is known as AIDS Dementia Complex (ADC) (Cournos&Bakalar, 1999). ADC is associated with cognitive and motor dysfunction as well as behavioural changes and mood disorders of different degrees (Price, 1996). Despite all the valuable literature already available on the neurological, cognitive, motor and psychological impact of ADC, there is still limited data on the consequential influence thereof on the communication skills and the individual's experience and treatment of this (Zuniga, 1999). Therefore there seems to be a gap in the effective goal-directed treatment of this disorder. (Druck, 2002). The aim of this study is to investigate the subjective illness experience of the individual with ADC in terms of possible communication difficulties, and to define the role of the speech-language therapist in this regard. A single case study, non-experimental, descriptive research design was used. The research participant’s narrative was elicited by means of natural conversation and recorded on audio tape. The narrative was transcribed and analysed, using the following three methods: 1.) Plot analysis, 2.) Structural story analysis according to Labov’s (1982) structural approach, and 3.) Holistic content analysis. According to the plot analysis this was a regressive narrative. During the discussion of the meta-narratives, different aspects of the research participant's personal illness experience were identified as regards the influence thereof on her ability to maintain her quality of life through participating in everyday living activities. The ICF components were used as framework to present the results obtained in a meaningful manner. It also became apparent that the illness experience cannot be isolated to specific human functions, such as communication. The experience of her communication problems is part of her complete illness experience, which takes place in the context of her everyday living activities and participation therein. The identification and analysis of themes also indicated that the narrative is an effective method to gain insight into the individual’s context and experience thereof. A holistic view could be obtained of the individual’s functional skills, context and emotional experience and needs, without subjecting her to formal tests and evaluation instruments which might leave her feeling incompetent and inferior. The results obtained imply that the individual with ADC’s illness experience is central to the extent to which he or she participates in everyday life activities as well as to the quality of life experienced. The value of narratives in the therapeutic treatment process also became apparent. Narratives can successfully be applied to gain better insight into the life and needs of the individual living with ADC.