Social participation experiences as shared by people living with aphasia

With stroke incidence on the rise in Canada, research that can enhance the wellbeing of people living with aphasia (PLWA) is critical. To provide insights into the day-to-day social experiences of PLWA and how these experiences relate to communicative access, this study sought to: 1) describe PLWA's experiences with social participation, 2) identify challenges and supports to their social participation, and 3) gain their insights into improving communicative accessibility.

Five PLWA enrolled in a community aphasia group in Southern Ontario, Canada were included in this study. A series of individual, semi-structured interviews were conducted using supportive communication strategies for aphasia. Data collected from these interviews was analyzed using an iterative, collaborative qualitative analysis process.

Three themes emerged during analysis: 1) coping with change, describing participants' personal experiences adapting to life with a communication disability, 2) barriers to social participation, identifying factors that negatively impacted their opportunities for interacting with others, and 3) facilitating social participation, pertaining to ways that participants felt PLWA's social participation could be improved.

Improving public knowledge and awareness of aphasia was identified as a key facilitator for increasing social participation for participants in this study. Participants with perceived social support expressed having more opportunities for social participation than those without perceived social support. Present findings suggest that creating and maintaining both in-person and virtual opportunities for social participation that are communicatively accessible can help address the diverse needs of people living with aphasia.