Understanding Barriers and Facilitators to Participation in People With Aphasia: A Qualitative Approach

Aphasia is an acquired communication disorder that currently affects about one million people in the United States. Although people with aphasia receive rehabilitation services, they often return to the community with barriers that impact participation in activities that are meaningful to them. Few research studies have investigated factors influencing participation in aphasia and people with aphasia are often excluded from research due to their language impairment. The purpose of this exploratory qualitative study was to identify the most common barriers and facilitators to community participation, as perceived by people with chronic aphasia following stroke.

Method: Five participants with mild to moderate aphasia due to stroke participated in individual semi-structured videotaped interviews. The interviews were conducted using an aphasia-friendly adapted format, and supportive communication was provided as appropriate for each participant. Living with Aphasia: Framework for Outcome Measurement (A-FROM) was used to formulate questions that explore and measure domains such as personal identity, environment, and participation to fully understand the lived experience with aphasia. All interviews were videotaped and subsequently transcribed and analyzed. Grounded theory was employed in analysis of interview transcripts and emergent themes were identified.

Results: Three main themes emerged: The importance of the communication environment, changing social roles, and attitudes about aphasia as a disability. Several components of environment affect participation levels including: face-to-face interactions and personal factors that influenced ability to communicate. In addition, aphasia led to changes in employment status and shifted relationship dynamics to a more dependent role. Changing roles contributed to adjustments in support networks that influenced whether current relationships flourished or ended and how new relationships developed. People with aphasia felt that the general public’s knowledge of aphasia was lacking and that employers and the general public did not understand that aphasia is a disability.

Conclusion: This study provides preliminary data to understanding the key factors that influence participation.

Project: Livable Lives Initiative