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严重失语症患者及其配偶参与跨学科社区失语症小组的体验。

Experiences of people with severe aphasia and spouses attending an Interdisciplinary Community Aphasia Group.

机构信息

School of Allied Health, La Trobe University, Melbourne, Australia.

Department of Social Work, St. Vincent's Hospital, Sydney, Australia.

出版信息

Disabil Rehabil. 2020 May;42(10):1382-1396. doi: 10.1080/09638288.2018.1526336. Epub 2019 Jan 17.

DOI:10.1080/09638288.2018.1526336
PMID:30652928
Abstract

Community aphasia groups are recognized as an area of need and value for people with chronic aphasia and their significant others. However, our understanding of attendees' experiences is limited by the small amount of qualitative research available. The present study aimed to describe participant experiences of an Interdisciplinary Community Aphasia Group, as part of a better understanding of its underlying processes and value. Four people with chronic, severe aphasia and their spouses attended an Interdisciplinary Community Aphasia Group held at a university speech clinic for 2 h once weekly over 12 weeks. The group was co-facilitated by a speech-language pathologist and a social worker, with the support of two aides (one a person with aphasia, and the other a member of the general community). The group addressed the following areas: communication therapy, conversation, participation in meaningful and accessible activities, psychological and social support, and aphasia information and education. Following the program, the people with aphasia (via multimodal communication) and spouses participated in separate semi-structured interviews with an independent interviewer. The interviews addressed members' perceptions of the program (both in relation to themselves and their spouse) along with recommendations for improvement. The interviews were analyzed using Framework Analysis. Members shared preferences for program activities and group format, with some experiences leading to suggestions for improvement. The group dynamics and environment were considered positive overall, and members highlighted a range of positive impacts for both themselves and their spouse. Together, these elements informed members' evaluation that the model contained something for everyone, but may not be a "one-stop shop" given ongoing needs for therapy. An overarching theme for spouses addresses therapy and recovery in relation to the impact of peers, views and beliefs, and adjustment. The Interdisciplinary Community Aphasia Group model has overall acceptability for people with chronic, severe aphasia and their spouses, and can be adapted to ensure feasibility in clinical practice. Ongoing research is required to best tailor community groups for people with aphasia and significant others, and to reinforce the need for their proliferation.Implications for rehabilitationPeople with aphasia and their spouses can benefit from a wide range of programming, including participation in meaningful and accessible non-verbal activitiesAn interdisciplinary staff team can contribute positively to member experience and impacts, with peer staff offering valuable mentoring roles. Various aspects of member identity and life narrative impact on community aphasia group participation; understanding members' needs in the context of previous experiences can improve tailoring of program content.

摘要

社区失语症小组被认为是慢性失语症患者及其重要他人的一个有需求和价值的领域。然而,由于可获得的定性研究数量有限,我们对参与者体验的理解受到限制。本研究旨在描述参与者对跨学科社区失语症小组的体验,以便更好地了解其潜在过程和价值。四名患有慢性严重失语症的患者及其配偶参加了在大学言语诊所每周一次、每次 2 小时的跨学科社区失语症小组,为期 12 周。该小组由言语语言病理学家和社会工作者共同主持,由两名助手(一名是失语症患者,另一名是社区成员)提供支持。小组讨论了以下领域:沟通治疗、对话、参与有意义和可及的活动、心理和社会支持以及失语症信息和教育。在项目结束后,失语症患者(通过多模态沟通)及其配偶与独立访谈者一起参加了单独的半结构化访谈。访谈内容涉及成员对项目的看法(包括自己和配偶)以及改进建议。访谈采用框架分析进行分析。成员们分享了对项目活动和小组形式的偏好,一些体验导致了改进建议。总体而言,小组动态和环境被认为是积极的,成员们强调了对自己和配偶的一系列积极影响。这些因素共同构成了成员们的评价,即该模式对每个人都有好处,但由于持续的治疗需求,可能不是一个“一站式”的选择。配偶的一个总体主题涉及与同伴的影响、观点和信念以及调整相关的治疗和康复。跨学科社区失语症小组模式总体上被慢性严重失语症患者及其配偶接受,可以进行调整以确保在临床实践中的可行性。需要进一步研究,以便为失语症患者及其重要他人量身定制社区小组,并加强对其普及的需求。

康复的意义失语症患者及其配偶可以从广泛的计划中受益,包括参与有意义和可及的非言语活动。跨学科工作人员团队可以对成员体验和影响产生积极影响,同伴工作人员可以发挥有价值的指导作用。成员的各种身份和生活经历会影响社区失语症小组的参与;了解成员在以前经验背景下的需求可以改善项目内容的定制。

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