Objective: Persons in the later stages of dementia diseases are, to a great extent, dependent on other persons in their environment to manage their daily living. The caregiver burden, related to caring for patients with dementia is well known which, in turn, may affect the patients the patients' state in terms of well/ill-being. Several difficulties in the care provision are reported, for instance, difficulties to interpret and understand the patients communication, unwanted encroachments on the patients' integrity and specific behaviors experienced as difficult to handle. There is, however, a lack of instruments to assess the experience of strain. This study aimed to further explore nurses experience of strain, which in turn will form the base the development of an assessment scale.
Design: The study is a descriptive multicenter study including Sweden, Australia, Norway, England and Wales.
Materials and Methods: Data was collected by focus group discussions with experienced nurses in dementia care in each participating country, in all 7 groups. The groups met twice and consisted of 6-8 members who represented a variation in age, gender and experience. The discussions followed the same structure, focusing on emotional and existential dimensions on caring for patients with dementia. The discussions were tape recorded, transcribed and analyzed using content analysis. The analysis was performed by the authors independently and was thereafter compared and contrasted.
Results: The analysis is ongoing (March 2003) and the results are preliminary. Some of the findings are in line with earlier research i.e. the focus on the difficulties to interpret and understand the patients communication, but also strain caused by the conflict between what the nurses want to do and can do, being unable to protect and help the patients in delicate situations and unable to comfort and explain. The relationship with the patients family was also highlighted during the discussions and also caused strain in their work. The results, with themes and sub-themes, will be further presented at the conference.
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