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- Ahlström, Gerd, et al.
(författare)
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Encounters in close care relations from the perspective of personal assistants working with persons with severe disablility.
- 2010
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Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 18:2, s. 180-188
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Tidskriftsartikel (refereegranskat)abstract
- In Sweden adults with major and sustainable disabilities can be granted publicly financed support in the form of personal assistance after assessment and decision-making in accordance with government rules. The purpose of the present study was to explore more deeply the encounters in close care relations between personal assistants and disabled persons of working age, as well as the prerequisites for and obstacles to the success of such encounters, this from the perspective of the personal assistants. Thirty-two personal assistants (22- to 55-year old) who worked for 32 persons with serious neurological diseases living at home were interviewed. The transcribed unstructured interviews were qualitatively analysed using latent content analysis. The analyses resulted in five main themes: Perceptive awareness, Entering into the other's role, Mutuality, Handling the relationship and Personal difficulties facing the assistant. These themes illustrated that a prerequisite for the encounter's being meaningful is that the assistant should be able to observe and understand the unique needs of the disabled person. The assistant must furthermore be able to put herself/himself into the other person's position. It is also important that the personal chemistry between the assistant and the disabled person should be good. Being able to share feelings and interests with the functionally impaired person provides the assistant with positive emotional confirmation of a good relationship. A distressing dilemma the assistant faces is that of distinguishing between the working relationship and the personal friendship. In this borderline area are found experiences, feelings and events that the assistant may view as negative or even unacceptable. This study contributes to the understanding of the complexity underlying the daily community care of disabled persons with an extensive need for care and assistance.
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- Ahlström, Gerd, et al.
(författare)
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Enjoying work or Burdened by it? : How personal Assistants Experience and Handle Stress at Work
- 2012
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Ingår i: Journal of Social Work in Disability & Rehabilitation. - : Routledge. - 1536-710X .- 1536-7118. ; 11:2, s. 112-127
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Tidskriftsartikel (refereegranskat)abstract
- A personal assistant has to promote equality in living conditions for persons with severe disabilities. The aim of this study was to explore how personal assistants experience their work and what strategies they employ to alleviate work-related stress. Thirty personal assistants were interviewed and latent content analysis was performed. The findings regarding the experiences of work-related stress could be brought together under the theme of “difficulties of being in a subordinate position,” and those regarding management strategies could be brought together under the theme of “coming to terms with the work situation.” There is a need to empower personal assistants through training programs including tailored education, working communities, and coaching.
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- Ahlström, Gerd, et al.
(författare)
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Family members' experiences of personal assistance given to a relative with disabilities
- 2011
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Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 19:6, s. 645-652
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Tidskriftsartikel (refereegranskat)abstract
- Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and their perception of the quality of the caring relationship between the personal assistant and the person with disability. The main finding was an appreciation of the personal assistance on the part of the family members. However, in situations where the encounter between the assistant and the relative with disability was perceived negatively, the family members experienced great anxiety. The shortcomings were the inability to maintain a private life with assistance and the limitation of choice because of the shortage of personal assistants. Beyond these general findings, this study found that personal assistance was experienced by the family members in terms of dignity and empowering care. This theme was generated from seven subthemes: Insight into private life, Security through the close relation, Social life through freedom of movement, Influence over the organisation of assistance, Self-determination and understanding, Friendship and mutual respect and Adaption to the dependency on assistance. The findings indicate that responsible officials, work leaders and assistants need constantly to improve the implementation of the law. In such efforts, the experiences of family members described in this study are a source of knowledge.
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- Arvidsson, Patrik, 1969-
(författare)
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Assessment of participation in people with a mild intellectual disability
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this doctoral thesis was to explore an assessment of participation according to the International Classification of Functioning, Disability and Health (ICF) in people with a mild intellectual disability.Study I used secondary data and explored how participation can be assessed. Study II-IV explored participation empirically regarding 68 everyday activities from all nine life domains according to the ICF. Study II explored assessment of self-rated participation by investigating to what extent perceived ability, actual performance and perceived importance correlated. Study III-IV explored the contribution of perceived importance to an assessment of participation; study III by investigating frequencies of everyday activities regarding performance and importance separately as well as regarding combined measures of performance and perceived importance, and study IV by comparing proxy ratings with self-rated measures regarding ability and measures of participation. Study III also correlated measures of participation with a single-item measure of subjective general well-being and study II and IV investigated internal consistency in terms of Cronbach’s alpha. Study II and III included 55 and 69 individuals with intellectual disability respectively. Study IV included 40 individuals with intellectual disability and 40 proxy persons. The informants from the target group were partly the same.Study II and IV supported the suggestions from study I that participation should be assessed by self-ratings and study II found that this is an appropriate method also to people with a mild intellectual disability. Study III showed that participation is related to subjective well-being. Study III-IV found somewhat different results if measuring participation as performance solely or as a combination of performance and perceived importance. Overall, the results of the thesis suggest that performance solely might be sufficient to assess participation at a group level but in a clinical context, when the knowledge of a certain individual is of interest, the perceived aspect of involvement is necessary to include in an assessment of participation.
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- Bökberg, Christina, et al.
(författare)
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Best practice and needs for improvement in the chain of care for persons with dementia in Sweden: a qualitative study based on focus group interviews
- 2014
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Ingår i: BMC Health Services Research. - London : Springer Science and Business Media LLC. - 1472-6963. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- Background: Persons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers' views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. Methods: The study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life). Results: The results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care. Conclusions: The results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages.
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| 7. |
- Bökberg, Christina, et al.
(författare)
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Professional care providers and stakeholders’ views of best practice in the care for persons with dementia in Sweden
- 2013
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Ingår i: The Journal of Nutrition, Health & Aging. - Heidelberg : Springer. - 1279-7707 .- 1760-4788. ; 17:Suppl. 1, s. S369-S370
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Dementia implies progressive loss of mental and physical functions during the trajectory of the disease (Porter & Kaplan, 2012). Persons with dementia need involvement of various and several care providers throughout the stages of dementia, and more knowledge is needed about best practice strategies in this complexity of care (Gurner, 2001). The aim of the study was to explore professional care providers and stakeholders’ views of best practice in concepts of information, collaboration and communication in the care for persons with dementia in Sweden.Method: The study had a qualitative approach based on three focus group interviews with a variation among participants regarding professions and workplaces to represent different types of care for persons with dementia from diagnosis to end of life care. The transcribed verbatim was analyzed with qualitative content analysis.Preliminary results: In early stages primary health care specialized in dementia had close collaboration, training and mentoring, with memory clinic and home care. In the later stages the person with dementia had less frequent contacts with primary health care. Day care played an important role in information delivery of the disease, in collaboration with home and institutional care. In the latest stage the family had an important role as a proxy for the person with dementia about desires in the care.Conclusion: A well-functioning network in professional care seems to have an impact on persons with dementia to remain at home despite loss of mental and physical functions.On the behalf of RightTimePlaceCare consortium. http://www.righttimeplacecare.eu.
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| 9. |
- Bökberg, Christina, et al.
(författare)
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Professional care providers and stakeholders’ views of best practice in the chain of care for persons with dementia in Sweden
- 2013
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Ingår i: Nordic Advances in Health Care Sciences Research. ; , s. 98-98
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Konferensbidrag (refereegranskat)abstract
- Background: To meet the increasing needs for persons with dementia and their relatives a well-functioning health care system in which resources are used optimally is needed. For this to be achieved requires strategy and planning of synergies between the different cares providers. This study will explore professional caregivers’ and stakeholders’ views of best practice in terms of information, collaboration and communication in dementia care.Aim: The aim of the study was to explore professional care providers’ and stakeholders' views of best practice in concepts of information, collaboration and communication throughout the trajectory of care from diagnosis to end of life care for persons with dementia in Sweden.Method: The study had a qualitative approach based on three focus group interviews with a variation among participants regarding professions and workplaces to represent different types of care for persons with dementia from diagnosis to end of life care. The transcribed verbatim was analyzed with qualitative content analysis.Preliminary results: In early stages primary health care specialized in dementia had close collaboration, training and mentoring, with memory clinic and home care. In the later stages the person with dementia had less frequent contacts with primary health care. Day care played an important role in information delivery of the disease, in collaboration with home and institutional care. In the latest stage the family had an important role as a proxy for the person with dementia about desires in the care.Conclusion: A well-functioning network in professional care seems to have an impact on persons with dementia to remain at home despite loss of mental and physical functions.
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