Collaboration in aphasia rehabilitation The perspective of speech-language pathologists and persons with stroke-induced aphasia
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Stroke is a major cause of death worldwide, and a seriously disabling health condition often resulting in a persistent need for rehabilitation. New estimates show that there are between 11,000 and 12,000 people suffering a first ever stroke annually in Norway. Out of these it is expected that between 30% and 35% will experience language impairments such as aphasia, in addition to other impairments that may affect cognition and physical functions. The main aim of this thesis is to contribute to increase the knowledge of how client participation for people with aphasia is experienced in aphasia rehabilitation in Norway;how is it performed in practice and what are the barriers and what facilitates it? This thesis is built upon data from three studies. In the first study data was gathered through five focus group interviews with a total of 20 speech-language pathologists. The aim of this study was to investigate how speech-language pathologists experienced client participation during the process of goal setting and clinical decision-making for people with aphasia. In the second study 15 persons with aphasia where interviewed seeking in-depth information about their experiences with client participation in aphasia rehabilitation. In the third study 11 of the speech-language pathologists from the first study were re-interviewed in focus groups with the intention of illuminate what they perceive as important to achieve client-oriented participation during aphasia rehabilitation. Systematic Text Condensation was used as method for analysis in all three studies. Results showed that both the persons with aphasia and the speech-language pathologists emphasise the importance of succeeding with client participation in goal setting and clinical decision-making in aphasia rehabilitation. At the same time both groups have experienced how barriers prevent client participation, with aphasia as the most prominent barrier. The speech-language pathologists showed that they were aware of what client participation in aphasia rehabilitation ought to be, at the same time they struggled to implement it into their daily practice. Despite being pleased with the services delivered by their speech-language pathologists the persons with aphasia described aphasia rehabilitation as diffuse with reference to goal setting, content and timeframe. This thesis provides new knowledge about how client participation is experienced by speech-language pathologists and people with aphasia in a Norwegian aphasia rehabilitation setting and as it is performed currently, the practice of client participation in aphasia rehabilitation cannot be described as truly person-centred. This thesis pinpoints the need for change in clinical practice in aphasia rehabilitation to make it truly person-centred. The speech-language pathologists struggle to implement client participation in goal setting and clinical decision-making and the persons with aphasia do not demand to participate, two elements that can be mutually reinforcing. There is a need for more knowledge on how to better incorporate the positive results from existing research into clinical practice and both clients and clinicians need education to achieve this when goals and plans for rehabilitation are to be made.