Race and shared decision-making: Perspectives of African-American patients with diabetes

Introduction: Shared decision-making (SDM) is an important component of patient-centered health care and is positively associated with health outcomes such as improved diabetes control, preventive health services use, lowered blood pressure, and fewer hospitalizations. In shared decision-making, patients and physicians engage in bidirectional dialogue about patients' symptoms and treatment options, and select treatment plans that address patient preferences. African-Americans experience SDM less often than whites, a fact which may contribute to racial disparities in diabetes outcomes. Little is known about reasons for racial disparities in shared decision-making. We explored patient perceptions of how race influences SDM between African-American patients and their physicians. Methods: We conducted in-depth interviews (n=24) and five focus groups (n= 26) among a purposeful sample of African-American diabetes patients at an urban academic medical center. Consistent qualitative methodology, data collection and analysis were conducted simultaneously, and enrollment continued until theoretical saturation was met. We used race-concordant interviewers with experience discussing health and communication issues. Topic guides were created based on constructs of the Charles SDM model, the Theory of Planned Behavior and the Ecological Model, pilot-tested, and modified in an iterative way. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted iteratively; each transcription was independently coded by two research team members. Themes from the in-depth interviews were used in the development of the focus group topic guide, thus allowing a triangulation of the data. Results: There was heterogeneity in patients' perceptions about the importance of race in the SDM process. While some reported that race played no role in communication between African-Americans and their doctors, others described adverse communication experiences which were attributed to race. Patients identified physician bias/discrimination and/or cultural discordance as issues that may influence physician-related SDM behaviors (e.g. less likely to share information [test results] and more likely to be domineering with African-American patients). They identified mistrust of white physicians, prejudice and internalized racism as patient-related issues that may influence African-American patients' SDM behaviors (e.g. less forthcoming with physicians about health information, more deference to physicians, less likely to adhere to treatment regimens). Conclusion: Perceived bias, discrimination, and mistrust may negatively influence how both patients and physicians engage in shared decision-making, and exacerbate existing racial disparities in the quality of patient/provider communication.