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Striving to be able and included: Expressions of sense of self in people with Alzheimer's disease
Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.ORCID iD: 0000-0003-0103-8994
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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).

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, Department of Neurobiology, Care Sciences and Society , 2014. , 91 p.
Keyword [en]
Agency, Alzheimer's disease, Communion, Early onset, Harré's social constructionist theory, Positioning, Research participation, Self, Support group
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-3543ISBN: 978-91-7549-516-3 (print)OAI: oai:DiVA.org:esh-3543DiVA: diva2:711809
Public defence
2014-04-25, Aulan, Ersta Sköndal Högskola, Stigbergsgatan 30, Stockholm, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2014-04-14 Created: 2014-04-11 Last updated: 2017-02-09Bibliographically approved
List of papers
1. How people with Alzheimer's disease express their sense of self: Analysis using Rom Harré's theory of selfhood
Open this publication in new window or tab >>How people with Alzheimer's disease express their sense of self: Analysis using Rom Harré's theory of selfhood
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2013 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 6, 713-733 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to use Harré’s social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer’s disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.

Keyword
Alzheimer's disease, dementia, Rom Harré's social constructionist theory, identity, selfhood
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-1710 (URN)10.1177/1471301212444053 (DOI)
Projects
Uttryck för upplevelse av identitet hos personer med Alzheimers sjukdom
Available from: 2012-09-17 Created: 2012-09-17 Last updated: 2017-12-07Bibliographically approved
2. Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion
Open this publication in new window or tab >>Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion
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2016 (English)In: Journal of Applied Gerontology, ISSN 0733-4648, Vol. 35, no 4, 421-443 p.Article in journal (Refereed) Published
Abstract [en]

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

Keyword
Self, Alzheimer’s disease, Agency, Communion, Support group
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4805 (URN)10.1177/0733464814530804 (DOI)24776791 (PubMedID)
Note

Publication status in dissertation: In press

Title in dissertation: Sense of self expressed in terms of agency and communion by people with Alzheimer’s disease in a support group

Available from: 2015-08-24 Created: 2015-08-21 Last updated: 2017-02-09Bibliographically approved
3. Social positioning by people with Alzheimer's disease in a support group
Open this publication in new window or tab >>Social positioning by people with Alzheimer's disease in a support group
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2014 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 28, 11-21 p.Article in journal (Refereed) Published
Keyword
Alzheimer's disease, Interaction, Personhood, Positioning, Self, Support group
National Category
Medical and Health Sciences Nursing
Identifiers
urn:nbn:se:esh:diva-2559 (URN)10.1016/j.jaging.2013.11.003 (DOI)24384363 (PubMedID)
Available from: 2013-12-18 Created: 2013-12-18 Last updated: 2017-12-06Bibliographically approved
4. Being a research participant with Alzheimer’s disease: Expressions of sense of self
Open this publication in new window or tab >>Being a research participant with Alzheimer’s disease: Expressions of sense of self
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(English)Article in journal (Refereed) Submitted
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-3553 (URN)
Available from: 2014-04-14 Created: 2014-04-14 Last updated: 2016-12-05Bibliographically approved

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