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Striving to be able and included : expressions of sense of self in people with Alzheimer's disease

机译:努力做到并包括在内:阿尔茨海默氏病患者的自我意识表达

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摘要

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).
机译:根据运用社会建构主义观点进行的研究,阿尔茨海默氏病(AD)患者不会丧失自我意识。但是,它受症状以及其他人如何对待的影响很大。如果没有支持,当患有不断发展的认知障碍时,很难保持积极的自我意识。与认知障碍相关的污名也威胁着他们的自我意识。哈雷(Harré)的社会建构主义自我和定位理论已用于研究患有AD的人如何表达自我感。由于有必要通过让更多的参与者和研究背景参与进来来扩展先前的研究,因此本论文的目的是根据哈雷的自我和定位理论,描述AD患者如何在个人访谈中表达自我感以及与其他患有AD的人的支持小组。该研究包括四个子研究(I–IV),并具有定性,描述性和理论检验方法。包括13名轻度和中度AD患者,其中11名患有该病的早期发作形式。成立了两个支持小组,由主持人领导,他们支持交流和参与者的自我表达。每个小组在八个月的时间里开会10次。主题不是预先确定的,而是由主持人和参与者介绍的。在小组开始之前和结束之后进行半结构式访谈。在Harré的理论指导下,对访谈和支持小组的对话进行了音频编码和定性内容分析。在子研究I中,对初次访谈进行了演绎分析。研究结果表明,参与者1表现出了自我1(一种单身,体现的感觉)而没有困难。自我2(对个人属性和生活史的感知)表达为主要感觉同一个人。虽然有些能力已经丧失,但其他能力却得到了发展。自我3(由社会建构的自我)被描述为最受支持,但有时在与他人的互动中受到威胁(I)。在子研究II中,对支持小组的对话对Self 2的表达进行了归纳分析。结果发现,参与者在代理和交流方面表达了Self 2,而在代理和交流方面则缺乏Self(II)。在研究III中,参与者是次要的。归纳地对子研究II的数据进行了分析,目的是描述在支持小组的互动中Self 3的构建方式。描述了五个产生积极互动的一级职位:项目经理,讲故事的人,道德主体,承受AD负担的人和应对者(III)。在子研究IV中,所有归纳的数据都经过归纳分析,着重于参与者如何表达被研究者的经历。构建了三个主题:为重要的事业做出贡献,从参与中受益以及经历风险和弊端(IV)。总之,发现参与者通过彼此,支持者和支持小组中的研究者(III)以及作为研究参与者(IV)的支持而建立了积极的社会自我。代理和交流对自我2至关重要,并且随着AD(II)的发展而降低。尽管有所变化,但参与者仍将自己视为基本相同的人,具有作为人学习和发展的潜力(I)。

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    Hedman Ragnhild;

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  • 年度 2014
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