Abstract: “I’m Willing to be that Woman:” Exploring Black Women’s Decisions to Participate in Breast Cancer Clinical Trials
Black women die of breast cancer (BC) at a higher rate than any other racial group. Researchers’ scientific understanding about this racial disparity, as well as the ability to develop targeted BC treatments for this racial group, is hampered by Black women’s well-documented hesitancy to participate in medical research. In this study, we conducted interviews with 14 participants who were Black BC survivors/patients who had participated in a BC clinical trial (CT). In this Integrated Behavioral Model-guided study, we explored participants’ attitudes, perceived norms, and personal agency in relation to their decision to participate in a BC CT. Findings about the women’s attitudes revealed that despite their often-demonstrated reluctance to be involved in medical research, Black women’s strong, altruistic desires to serve others and their communities made them prime candidates for CT participation. In other words, their instrumental attitudes reveal a desire to participate as a way to help themselves and are greatly influenced by the need to leave a “legacy” of better treatment for other Black women. At the same time, while a few participants demonstrated some hesitancy to take unknown or new drugs, most expressed experiential attitudes of feeling safe in their choices. Study results concerning norms showed that despite the Black population’s instilled community values, decisions about BC CT participation do not seem to be motivated by a strong injunctive normative influence from friends or family. Most women reported sharing their decision to participate in a CT after the fact. The two strongest normative influences were oncologists and/or their staff members, and patient support groups. From a descriptive normative perspective, most Black women realized their decision to participate in a CT was an unusual one, but overestimated how many Black women they believed did participate in BC CTs. These women expressed strong personal agency when they made independent, informed decisions to participate. Many were proactive in seeking out CTs; in cases where they were recruited into a trial by a medical professional, they expressed clear details about how they independently thought through their decision before agreeing to participate, also suggesting perceived control. This study concluded that Black women actively involved in BC support groups, who have developed trusting relationships with their doctors, may feel more motivated and have higher perceived personal agency about participation in a BC CT. Through CT participation, Black women not only potentially help themselves but also demonstrate care about their racial group and the legacy of helping others, suggesting that altruistic messaging may be particularly salient for this group. Finally, these participants, despite their higher education levels and involvement with many BC support groups, were quite inaccurate in their reporting of descriptive norms about Black women’s participation in CTs, suggesting that social norms messaging may be one way to alert other Black women about the continuing disparity in CT participation. Future work needs to explore these findings in the context of CT recruitment messaging and continue to involve and include Black women’s voices to improve BC outcomes in research and medicine.