Queensland Aphasia Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
NHMRC Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Melbourne, Australia.
Disabil Rehabil. 2022 Dec;44(24):7399-7412. doi: 10.1080/09638288.2021.1989501. Epub 2021 Oct 17.
Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management.
In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data.
Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities.
From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management.IMPLICATIONS FOR REHABILITATIONFor people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs.Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists).People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use.People with aphasia should be heavily involved in the development of structured aphasia self-management approaches.
自我管理可以提高慢性病患者的自我效能感和生活质量；然而，对于慢性交流障碍（如失语症），很少有研究探索如何使用自我管理方法。需要对自我管理方法进行修改以适应失语症；因此，应该征求失语症患者（PwA）的意见。本研究的目的是：（1）调查和记录 PwA 对自我管理的经验和看法；（2）探讨如何使用技术来支持失语症自我管理。
对 26 名居住在澳大利亚的 PwA 进行了深入的半结构化访谈。采用定性内容分析方法对访谈数据进行分析。
分析产生了六个主题：（1）在自我管理中，PwA 控制着失语症的生活，并承担起参与改善整体沟通的机会的责任；（2）社区失语症小组是自我管理的重要推动者，因为它们促进了同伴支持；（3）沟通伙伴（CP）在失语症自我管理中提供多方面的支持；（4）言语治疗师在失语症自我管理中提供综合支持和协调；（5）技术支持 PwA 在日常生活中自我管理言语治疗和沟通；（6）心理和身体健康问题以及社会因素可能会影响失语症自我管理能力。
从 PwA 的角度来看，失语症自我管理涉及增强沟通和生活参与的技能。PwA 是失语症自我管理的核心，得到 CP、同伴和言语治疗师的支持。技术在失语症自我管理中有多种应用。PwA 确定了可能影响自我管理的个人和背景障碍。
对于失语症患者来说，进行对话和社交互动是管理/改善交流生活参与的主要手段；因此，这应该是失语症自我管理计划的重点。
失语症自我管理方法应最大限度地利用现有支持，并为关键利益相关者（失语症患者、沟通伙伴和言语治疗师）提供自我管理领域的定制信息、教育和培训。
应支持失语症患者使用技术进行失语症自我管理，包括沟通特定用途和日常生活用途。
失语症患者应广泛参与制定结构化的失语症自我管理方法。
