Background: Study participants express a desire to receive the results of studies in which they have participated even when the results are not what researchers expected. Sharing results with participants is a core principle of community-based participatory research (CBPR), however, many researchers using a community-based participatory approach report that they encounter barriers to sharing results with study participants. Researchers at the University of Arkansas for Medical Sciences established a CBPR partnership with Marshallese community stakeholders in an effort to reduce the health disparities of this vulnerable population. Marshallese are a Pacific Islander population that faces significant health disparities and have a high prevalence of diabetes, obesity, obesity-related cancers, and other chronic diseases compared to the general US population.
Methods: A qualitative descriptive design was used to evaluate Marshallese participants' perceptions related to receiving results of a culturally adapted Diabetes Self-Management Education randomized control trial in which they participated. Participants were provided with a summary of their individual results as well as preliminary, overall aggregate study results. Interviews were conducted with half of (N = 111) of the 221 enrolled participants that provided them with the opportunity to share in-depth responses related to their perceptions of the study results they received.
Results: There was no statistically significant differences between study arms in participant desire to receive overall study results, desire to receive personal study results, or willingness to participate in future research. Participants described their desire for results and the effect of these results on their future behavior. Within the a priori theme of participants' desire for results, three subthemes emerged: 1) results showed current health status, 2) results showed improvement, and 3) demonstrated the overall results of the study. Within the a priori theme of effects of results on future behavior, two sub-themes emerged: 1) encourage future healthy behavior, and 2) encourage future research participation.
Conclusions: Participants overwhelmingly stated they wanted to receive personal and aggregate study results. This finding is consistent with previous qualitative studies that documented that participants want results. Marshallese participants also reported that receiving study results would affect their future health behavior. This study documents specifically how participants anticipate using the results of studies in which they participated.
Clinical trials registration information: The study is registered in clinicaltrials.gov (#NCT02407132).
Keywords: Diabetes; Health disparities; Pacific islanders; Randomized control trial; Returning results.
© 2020 The Authors.