What does it mean to be aphasia aware? An international survey of stakeholder perspectives and experiences of aphasia awareness

Abstract

ABSTRACT 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. Barriers to campaign success included insufficient resources (e.g., funding, time) and lack of experience and specialised skills (e.g., health promotion). Key facilitators included people living with aphasia (including celebrities) sharing their stories and being key members or leaders of the campaign. Conclusions “Aphasia awareness” was considered essential by all participants. To enhance aphasia awareness misconceptions and stereotypes about communication disability must be challenged and practical education on how to communicate with a person with aphasia provided. These results lay the foundation for developing an international aphasia awareness campaign. Future research is needed to identify campaign priorities and to co-design the campaign.