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- Hedman, Ragnhild, 1962-
(author)
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Striving to be able and included : Expressions of sense of self in people with Alzheimer's disease
- 2014
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Doctoral thesis (other academic/artistic)abstract
- According to research applying a social constructionist perspective, the sense of self is not lost in people with Alzheimer’s disease (AD). It is, however, greatly influenced by the symptoms and by how they are treated by other people. Without support, it is difficult to preserve a positive sense of self, when living with progressing cognitive impairments. The stigma associated with cognitive impairment also threatens their sense of self. Harré’s social constructionist theories of self and positioning have been used to study how people with AD express their sense of self. As there is a need to expand the previous research by involving additional participants and research contexts, the aim of the present thesis was to describe, in accordance with Harré’s theories of self and positioning, how people with AD expressed their sense of self in personal interviews and in support groups with other people with AD. The research consists of four substudies (I–IV), and has a qualitative, descriptive, and theory-testing approach. Thirteen people with mild and moderate AD were included, 11 of whom had the early onset form of the disease. Two support groups were formed, led by facilitators who supported the communication and the participants’ expressions of self. Each group met 10 times during an eight-month period. Topics were not predetermined, and introduced by both facilitators and participants. Semistructured interviews were conducted before the groups started and after they ended. The interviews and support group conversations were audio-recoded and analysed with qualitative content analysis, guided by Harré’s theories. In substudy I, the initial interviews were deductively analysed. The findings showed that Self 1 (the sense of being a singular, embodied person) was expressed by the participants without difficulties. Self 2 (the perception of one’s personal attributes and life history) was expressed as feeling mainly the same person. While some abilities had been lost, other had been developed. Self 3 (the socially constructed self) was described as mostly supported, but sometimes threatened in interactions with other people (I). In substudy II, support group conversations were analysed abductively with respect to expressions of Self 2. It was found that participants expressed Self 2 in terms of agency and communion, and a lack of agency and communion (II).In substudy III, a secondary analysis of the data from substudy II was performed inductively with the aim of describing how Self 3 was constructed in the interaction of the support group. Five first-order positions, generating lively interaction, were described: the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person (III). In substudy IV, all the collected data were reanalysed inductively, focusing on how participants expressed the experience of being research participants. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks (IV). In conclusion, it was found that participants constructed positive social selves through the support from each other, the facilitator, and researchers in the support group (III), and as research participants (IV). Agency and communion were central to Self 2, and decreased with the progression of AD (II). In spite of change, participants perceived themselves as basically the same people, with a potential to learn and develop as persons (I).
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| 2. |
- Helgesen, Ann Karin, 1962-
(author)
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Patient participation in everyday life in special care units for persons with dementia
- 2013
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Doctoral thesis (other academic/artistic)abstract
- The aim of this thesis was to acquire knowledge about patient participation in everyday life of persons with dementia living in SCUs in nursing homes. Data collection and analysis in studies I-III was carried out according to Grounded Theory. Data was collected by open non- participant observations during 51 hours, and conversations with 8 residents and 17 health care personnel (I), interviews carried out twice with 12 relatives (II) and 11 nursing personnel (III), and by a study specific questionnaire based on the findings from study I-II to 233 relatives (IV). Descriptive and non-parametric statistics were used (IV).Presence of nursing personnel in body, mind and morality was found to be the prerequisite for patient participation (I). This required personnel with high competence in dementia care, commitment to and interest in the resident, and continuity in their work (I, III). Wellbeing and dignity in the resident’s everyday life was found to be the most important goal, not necessarily a high level of patient participation (II-III). The level of participation had to be adjusted to the resident’s ability and wish to take part in decisions in the very moment. However, the level was often primarily adjusted to suit the personnel’s ideas about how to carry out daily care (I, III). Relatives had an important role in the participation process by interacting, and exchanging information, with the personnel. By forming a basis for individualised care in this way, relatives made a difference to the resident’s everyday life and contributed to their wellbeing and dignity (II-IV). The SCU’s context also affected patient participation (I-IV).Patient participation must be given attention by leaders and be prioritised in dementia care. Nursing personnel can enhance patient participation by promoting relatives’ partaking in the participation process, as this has potential for further contributing to quality of care.
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| 3. |
- Söderlund, Mona, 1957-
(author)
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Förhållningssätt och kommunikation i mötet med personer med demenssjukdom : utvärdering av ett träningsprogram med validationsmetoden
- 2013
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Doctoral thesis (other academic/artistic)abstract
- Communication difficulties among residents with dementia disease living in nursing homes may complicate care situations. These residents can have difficulties describing how they experience their everyday lives, which can lead to withdrawal, social isolation, or feelings of homelessness. Research indicates that nurses involved in dementia care experience communication as difficult and challenging. The validation method developed by Feil is held to facilitate communication through emphatic and confirmatory approaches. Scientific reviews show insufficient evidence for recommending the use of the method, in spite of this the method is used in dementia care. Evaluations of the validation method have primarily focused on the residents’ perspective, and reports on nurses’ experiences of the validation method are sparse. The overall aim for this thesis was to evaluate Feils’ validation method by describing nurses’ experiences and skills in communication observed during implementation of a training programme. Twelve nurses participated in the validation method training programme that included 10 days of theoretical training with supervision about once a month, and practical training integrated in everyday work. During practical training nurses had conversation with 3 residents each 2-3 times a week, and videotaped one conversation per month. Methods: The design is based on naturalistic scientific approach. Data were collected with interviews (I, II) and a questionnaire (II) before and after the programme, and videotaped conversations during the programme (III, IV). An interview was conducted as a comparison with nurses from another nursing home, who had long experiences of using the validation method (I). The result showed that nurses improved their communication and had closer relationships with residents with dementia disease after validation method training, in accordance with nurses with long experiences (I). The training strengthened the nurses, but also posed an extra strain on them. Even though the nurses described an extra strain on the entire nursing staff, this was not reflected in the results from the questionnaire about the work climate (II). Videotaped one-to-one conversations between nurses and residents showed that the nurses developed their approaches and communication skills, although to different degrees. An overall pattern revealed nurses’ movements within and between various paths when improving their communication skills (III). The findings were in congruence with the nurses described experiences (I). In videotaped conversations from the end of the programme, the residents had the possibilities to use their remaining communication abilities and to communicate what was currently on their mind (IV). This may be related to the development of the nurses’ communication skills during the programme. Conclusions of this thesis were that the nurses developed their skills in caring approach and communication when communicating with residents with dementia disease, which gave these residents possibilities to communicate according to their abilities. In order to integrate new knowledge about communication the results showed that it was necessary to combine theoretical and practical training with supervision and reflection. To provide nursing staff with this type of training could be seen as an investment for nursing homes, an opportunity to increase job satisfaction for nurses and to increase social community for residents.
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