'N Ondersoekende kwalitatiewe studie na die siektenarratiewe van individue met VIGS-demensiekompleks

by Bam, Isabel M.

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 goaldirected 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 metanarratives, 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. University of Pretoria etd – Bam, I (2004)