Understanding Latinas’ Decisions to Participate in a Unique Breast Cancer Clinical Trial: A Qualitative Constructivist Grounded Theory Study

Abstract

Breast cancer is the most common cause of cancer death in Hispanic or Latino (H/L) women in the United States. However, researchers often fail to use recruitment messaging targeted toward increasing Latina participation in medical research. Although the barriers preventing Latinas' participation in research are well-established, there are few studies focused on comprehending the motivations of Latinas who previously volunteered for clinical trial participation. The current study aims to identify constructs for creating a theoretical framework exploring H/L women's motivations to provide healthy breast tissue for a breast cancer clinical trial. Guided by constructivist grounded theory, 19 women (n = 19) who self-identified as Hispanic or Latina and had previously donated healthy breast tissue to a biobank were interviewed regarding their medical research participation decision. The findings center on two primary themes: a) participants demonstrate confidence and self-efficacy in deciding to participate; possible negative feedback from family members was not a part of their decision-making process; and b) the importance of H/L women's awareness of low representation in medical research and the presence and influence of the legacy norm as a decision driver. The implications centered on a) understanding that H/L women have a strong sense of self-efficacy and should be viewed as important family healthcare decision-makers when creating clinical trial recruitment materials and b) a need for researchers to communicate to potentially unaware H/L women that they are being sought out because of their historical underrepresentation in research, and c) targeting constructs of the legacy norm and applying H/L cultural values (such as collectivism) as motivators to participate in medical research when creating recruitment messaging for H/L women.