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- Wallengren Gustafsson, Catarina, 1968-
(författare)
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De kan, de vill och de orkar, men... : Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall purpose of this thesis was to increase the understanding of relatives’ changing life situation during the first six months of a person’s onset of stroke, with focus on learning. Furthermore, the purpose was to evaluate theprinted education materials (PEM) targeted at relatives at Swedish stroke units. Method: In paper I, 16 relatives were interviewed about the meaning of becoming a relative of a person affected by stroke. In paper II, 9 relatives were reinterviewed about what it meant to be a relative of a person affected by stroke. The interviews took place six months after the stroke survivors’ onset of stroke. Data from the two studies were analyzed by Lindseth and Norberg’s hermeneutic phenomenological method of analysis, inspired by Ricoeur. In paper III, 16 and 9 relatives were interviewed about what they wanted to know and understand during the first six months after the onset of the survivors’ strokes. Krippendorff’s method of qualitative content analysis was used to analyse data. In paper IV, 42 PEM:s from 21 Swedish stroke units were examined. Data were analysed by use of descriptive statistics and Krippendorff’s method of qualitative content analysis. Results: Becoming the relative of a person affected by stroke means to experience chaos but also to reach a turning point. The turning point is the start of a febrile activity that shows the relatives’ willingness to seek order in the chaotic situation (I). Being the relative of a person affected by stroke also means to be in a struggle for freedom. Relatives do not want to adapt to the stroke or its consequences. Instead, they prefer to choose their own way of life and to write their own history. Therefore, they strive to integrate the stroke and its consequences to their everyday lives (II). The information that the relatives wished to have was about the stroke survivor, the professionals and themselves. Moreover, the results showed that the relatives’ information quest was related to personal involvement, contextual factors, different knowledge needs and different ways to obtain information (III). The PEM:s, offered at Swedish stroke units, were adequate in terms of quality of suitability and readability. The content of the printed education materials offered to relatives varies with the stroke units. Conclusion: To become a relative of a person affected by stroke means to end up in chaos, but also to reach a turning point (I). At this turning point the person is prepared to adjust arrange his/her life to the new conditions. Therefore, nurses need to learn to identify these turning points and include support for relatives in their changing life situation. Being a relative during the first six months of a survivor’s onset of stroke means to fight for freedom (II) without abandoning the stroke survivor. In this process, it is important that the relatives learn to balance freedom with responsibility and life and care for the survivor with relations to other relatives. Relatives are capable as they are active, committed and social persons (I, II, III). This is why alternative pedagogic methods and approached need to be developed and tested. Nurses need training in using such alternative methods. The content of the printed education materials offered to relatives at Swedish stroke units varies with the unit. As a result, it would be useful to establish a national electronic centre.
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