Academic Journal
What does it mean to be aphasia aware? An international survey of stakeholder perspectives and experiences of aphasia awareness
| Title: | What does it mean to be aphasia aware? An international survey of stakeholder perspectives and experiences of aphasia awareness |
|---|---|
| Authors: | Bennington, Claire, Shiggins, Ciara, Isaksen, Jytte, Beesley, Emma, Beesley, Kim, Wallace, Sarah J. |
| Source: | Bennington, C, Shiggins, C, Isaksen, J, Beesley, E, Beesley, K & Wallace, S J 2024, 'What does it mean to be aphasia aware? An international survey of stakeholder perspectives and experiences of aphasia awareness', Aphasiology, vol. 38, no. 12, pp. 1916-1939. https://doi.org/10.1080/02687038.2024.2330145 |
| Publication Year: | 2024 |
| Collection: | University of Southern Denmark: Research Output / Syddansk Universitet |
| Subject Terms: | Aphasia, awareness, education, health promotion, stroke |
| Description: | Background: Over the past two decades, “aphasia awareness” has been studied across 19 countries and five continents. Despite international efforts, awareness of aphasia has remained persistently low and little consideration has been given to what it actually means to be “aphasia aware”. In order to raise awareness of aphasia, it is first necessary to understand how key stakeholders perceive the topic, and their experience of raising awareness of aphasia and the factors which may enable or hinder success. Aims: To explore international stakeholder: (1) perspectives on aphasia awareness, (2) experiences of delivering aphasia awareness campaigns; and to identify (3) barriers to, and facilitators of, successful aphasia awareness raising activities. Methods & Procedures: Two cross-sectional, international, online surveys were conducted. Survey 1 was conducted with people living with aphasia (PLWA: people with aphasia, family members, friends, carers). Survey 2 was conducted with people who work with PLWA (workers: clinicians, researchers, volunteers, consumer organisation representatives). The surveys contained 31 and 25 questions respectively across four topic areas: demographics, perspectives on aphasia awareness, experiences of running aphasia awareness campaigns, and barriers to, and facilitators of, raising awareness. Closed and open-ended responses were elicited. Data were analysed using descriptive statistics and qualitative content analysis. Outcomes and Results: A total of 105 PLWA and 306 workers, from 39 countries, completed the surveys. More than 90% of participants considered aphasia awareness to be “very” or “extremely important”, primarily due to the communication and information barriers faced by people with aphasia daily. Participants reported that being “aphasia aware” meant knowing: that aphasia does not affect intelligence (PLWA), and how to communicate with a person with aphasia (workers). In total, 15% of PLWA and 31% of workers reported they had previously run an aphasia awareness campaign. ... |
| Document Type: | article in journal/newspaper |
| File Description: | application/pdf |
| Language: | English |
| DOI: | 10.1080/02687038.2024.2330145 |
| Availability: | https://portal.findresearcher.sdu.dk/da/publications/3a7b8a50-78c6-4343-b58f-fcbc1482c18f https://doi.org/10.1080/02687038.2024.2330145 https://findresearcher.sdu.dk/ws/files/276758534/What_does_it_mean_to_be_aphasia_aware_An_international_survey_of_stakeholder_perspectives_and_experiences_of_aphasia_awareness.pdf |
| Rights: | info:eu-repo/semantics/openAccess |
| Accession Number: | edsbas.44C55CDF |
| Database: | BASE |
| DOI: | 10.1080/02687038.2024.2330145 |
|---|