Objective: This study investigates how shared decision-making (SDM) is defined by African-American patients with diabetes, and compares patients' conceptualization of SDM with the Charles model.
Methods: We utilized race-concordant interviewers/moderators to conduct in-depth interviews and focus groups among a purposeful sample of African-American patients with diabetes. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was done using an iterative process and each transcription was independently coded by two members of the research team.
Results: Although the conceptual domains were similar, patient definitions of what it means to "share" in the decision-making process differed significantly from the Charles model of SDM. Patients stressed the value of being able to "tell their story and be heard" by physicians, emphasized the importance of information sharing rather than decision-making sharing, and included an acceptable role for non-adherence as a mechanism to express control and act on treatment preferences.
Conclusion: Current instruments may not accurately measure decision-making preferences of African-American patients with diabetes.
Practice implications: Future research should develop instruments to effectively measure decision-making preferences within this population. Emphasizing information-sharing that validates patients' experiences may be particularly meaningful to African-Americans with diabetes.