点对点支持:失语症中的数字网络以提高生活质量(PeerPAL)

IF 1.5 Q2 COMMUNICATION
Christina Kurfess, S. Corsten, Maren Tabea Nickel, Marie Knieriemen, Daniël Kreiter, Norina Lauer
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引用次数: 0

摘要

失语症(PWA)患者通常会减少参与和生活质量。然而,目前只有少数具体的干预措施对这个问题作出反应。通过与有类似经历的同龄人互动,可以提高参与度和生活质量。数字社交网络可以刺激自主互动。然而,数字社交网络需要适应PWA的特定需求。因此,应该选择一个涉及目标群体的参与式敏捷过程来开发这样的解决方案,即应用程序。该研究项目共分为三个阶段。在应用程序开发的第一阶段,应用程序的开发和编程包括目标群体。在第二阶段的应用程序测试中,应用程序的可用性和用户友好性通过四个PWA进行评估。在第三阶段,可行性和初步有效性-将在文章中描述,将评估应用程序对PWA的影响。我们研究的首要目的是提供干预的初步效果。与其他PWA的数字社交互动可以促进社会融合。除了数字互动外,还应鼓励PWA之间的个人接触。因此,我们期望改善PWA的生活质量。此外,我们专注于识别最合适的测量方法,以发现与干预相关的变化。本文所描述的评估是在测试前-测试后设计中进行的,总共为n = 48 PWA。将在区域分组中征聘与会者,以促进面对面会议。一半的参与者将被分配到延迟干预组,另一半被分配到立即干预组。延迟干预组的参与者需要3个月的等待期才能使用app,而立即干预组的参与者则需要3个月的时间才能开始使用app。纳入标准是存在慢性失语症(至少6个月)和拥有可上网的智能手机。在入组时(t0)、应用程序使用3个月后(t1)和随访3个月后(t2)分别进行生活质量(SAQOL-39、GHQ-12)、抑郁(GDS、disc)、交际参与(CPIB)和社会支持(F-SozU)问卷调查。延迟干预组在干预前、3个月等待期前(t0a)和等待期后(t0b)分别进行两次评估。除了定量测量之外,在应用程序使用3个月后,将对6至8名选定的参与者进行访谈。回应将使用主题分析进行分析。该应用程序将是第一个与PWA系统开发的社交网络工具。第一阶段的初步迹象是PWA可以使用该应用程序,因此该应用程序版本的评估可以在第三阶段进行。本研究的结果可以为社会网络支持是否是一种合适的干预提供初步的指示。研究结果将有助于提供关于PWA数字连接可行性的信息。可以提供关于其对参与和生活质量的影响的初步调查结果。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Peer-to-peer support: digital networking in aphasia to improve quality of life (PeerPAL)
People with aphasia (PWA) often suffer from reduced participation and quality of life. Nevertheless, there are currently only a few specific interventions that respond to this problem. Participation and quality of life could be increased by interacting with peers who have similar experiences. Digital social networks could stimulate an autonomous interaction. However, digital social networks need to be adapted to the specific needs of PWA. Therefore, a participatory, agile process involving the target group should be chosen to develop such a solution, i.e., an app. The research project consists of a total of three phases. In the first phase—app development—the app was developed and programmed including the target group. In the second phase—app testing—the usability and user-friendliness of the app were evaluated with four PWA. In the third phase—feasibility and preliminary efficacy—that will be described in the article, the impact of the app on PWA will be evaluated.The overarching aim of our study is to provide preliminary efficacy of the intervention. Digital social interaction with other PWA can lead to increased social integration. In addition to digital interaction, personal encounters between PWA should be encouraged. As a result, we expect an improvement in quality of life of PWA. Additionally, we focus on identification of the most appropriate measurements to discover changes associated with the intervention.The evaluation, which is described in this paper, takes place in a pre-test - post-test design with a total of n = 48 PWA. Participants will be recruited in regional clusters to facilitate face-to-face meetings. Half of the participants will be assigned to the delayed intervention group and the other half to the immediate intervention group. Participants in the delayed intervention group will go through a 3-month waiting period before using the app, while the participants of the immediate intervention group will start using the app for 3 months right away. Inclusion criteria are the presence of chronic aphasia (at least 6 months) and possession of a smartphone with internet access. Questionnaires on quality of life (SAQOL-39, GHQ-12), depression (GDS, DISCs), communicative participation (CPIB), and social support (F-SozU) will be conducted at inclusion (t0), after 3 months of app use (t1), and after another 3 months for follow-up (t2). Participants in the delayed intervention group will be assessed twice before the intervention, before the 3-month waiting period (t0a) and after the waiting period (t0b). In addition to the quantitative measures, interviews will take place with 6 to 8 selected participants after 3 months of app use. Responses will be analysed using Thematic Analysis.The app will be the first social network tool that is systematically developed with PWA. Initial indications from the first phases are that the app can be used by PWA, so that the evaluation of this app version can take place in the third phase. Results of this study can provide an initial indication of whether social network support is a suitable intervention. Findings will help provide information on the feasibility of digital connectivity for PWA. Preliminary findings on its impact on the participation and quality of life of PWA could be made available.
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来源期刊
CiteScore
3.30
自引率
8.30%
发文量
284
审稿时长
14 weeks
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