Increasing Representation of Black Stroke Survivors in Aphasia Research: A Community Outreach Pilot

Although Black Americans are more likely to have strokes and more severe poststroke disability than White Americans, Black stroke survivors with aphasia are substantially underrepresented in aphasia clinical trials, which means that research findings may not generalize to the entire U.S. population. To help address this issue, we completed a 12-month community outreach pilot seeking to increase representation and engagement of Black stroke survivors with aphasia in research and to identify barriers to aphasia research participation and the unmet community needs of this population.

Targeted community outreach in predominantly Black neighborhoods was led by a Community Outreach Ambassador and consisted of site visits, tabling at community events, and providing a free monthly aphasia support group. Understanding barriers and unmet needs relied on qualitative analysis of semistructured interviews completed with Black stroke survivors with aphasia.

We completed over 20 unique points of contact with organizations in the Pittsburgh community and had conversations with over 100 Black stroke survivors or their family members, but these efforts resulted in limited new referrals. Semistructured interviews of four Black stroke survivors with aphasia identified participation barriers in the areas of knowledge and transportation, and unmet community needs related to communication deficits, social isolation, and poor mental health.

While our pilot did not substantially increase referrals for Black stroke survivors with aphasia during the study period, it helped identify key barriers to research participation. We have also experienced positive signs of continued community growth and relationship building since completing the study. Overall, this community outreach pilot provides preliminary guidance and "lessons learned" for those seeking to increase participation and community collaboration with Black stroke survivors with aphasia.

https://doi.org/10.23641/asha.29904884.