Factors influencing participation in stroke recovery research with a focus on diversity considerations: A randomized...

To examine how sex and race/ethnicity relate to agreeing to researcher contact (RC) and subsequent consent to a hypothetical stroke trial.

Adults post-stroke completed a survey describing a hypothetical-randomized trial (drug+exercise vs placebo+exercise). The survey assessed motivations, concerns, and decision-making related to RC (Phase I) and consent (Phase II), alongside demographic, clinical, and psychosocial factors.

Among 251 respondents (42.2% female, 31.4% racialized), most agreed to RC, with racialized individuals slightly less likely than White individuals to agree (89.2% vs 96.9%; p=0.02), with no sex difference. Consent rates did not differ by sex or race/ethnicity. Altruism (contributing to science so future patients may benefit) was the most common motivation for agreeing to RC (76.7%), whereas anticipated health benefits most strongly influenced consent decisions (62%), followed by altruism (32.1%). Primary concerns included potential harm (93.9%) and perceived lack of health benefit (78.8%). Predictors of refusing consent included greater risk-aversion, researcher distrust, higher self-perceived post-stroke recovery, lower pain, speaking a language other than English at home, and absence of pre-stroke fatigue. Several predictors, motivators, and barriers differed by sex and race/ethnicity. Consent was substantially lower for the drug vs placebo scenario (44.1%) compared with other study intervention types (>73%), p<.001.

Agreement across both stages of the consent process was high, though racialized individuals were less likely to agree to initial RC. While some subgroup differences emerged, our findings support universally inclusive, trust-building, and culturally responsive recruitment approaches, particularly at first contact, while remaining attentive to subgroup differences in perceived risks and benefits.