DOI: 10.6084/m9.figshare.16823224
title: People with aphasia share their views on self-management and the role of technology to support self-management of aphasia

description: 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. For 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.