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Shared decision-making (SDM) between patients and their physicians is associated with improved diabetes health outcomes. African-Americans have less SDM than Whites, which may contribute to diabetes racial disparities. To date, there has been little research on SDM among African-Americans.
We explored the barriers and facilitators to SDM among African-Americans with diabetes.
Qualitative research design with a phenomenological methodology using in-depth interviews (n=24) and five focus groups (n=27). Each interview/focus group was audio-taped and transcribed verbatim, and coding was conducted using an iterative process. Participants: We utilized a purposeful sample of African-American adult patients with diabetes. All patients had insurance and received their care at an academic medical center.
Patients identified multiple SDM barriers/facilitators, including the patient/provider power imbalance that was perceived to be exacerbated by race. Patient-related factors included health literacy, fear/denial, family experiences and self-efficacy. Reported physician-related barriers/facilitators include patient education, validating patient experiences, medical knowledge, accessibility and availability, and interpersonal skills.
Barriers/facilitators of SDM exist among African-Americans with diabetes, which can be effectively addressed in the outpatient setting. Primary care physicians, particularly academic internists, may be uniquely situated to address these barriers/facilitators and train future physicians to do so as well.
Shared decision-making (SDM) has been defined as a process where both patients and physicians share information, express treatment preferences and agree on a treatment plan1. SDM has been promoted in a wide variety of settings, including primary care2–3, and is associated with important primary care outcomes such as improved control of diabetes and hypertension, and enhanced preventive care utilization4–5.
Although SDM is understudied in African-Americans, disparities exist in several related concepts, suggesting that there may be less SDM in this population. For example, African-Americans experience less physician responsiveness and listening than White patients and describe their physicians as less participatory during clinic visits6–7. Communication disparities may be an important contributor to racial health disparities8, particularly concerning chronic diseases (e.g., diabetes) where effective communication is important to optimal disease management. Addressing such disparities will involve understanding the barriers and facilitators to SDM among African-Americans. To date, however, there has been little research in this area9–11.
The methods have been described in detail elsewhere11. This study utilized a qualitative research design, specifically, a phenomenological research method, that consisted of individual semi-structured interviews (n=24) and five focus groups (n=27). Each focus group consisted of five to six people and lasted approximately 90 min; individual interviews lasted approximately 60 min. Enrollment continued until theme saturation was met12. Themes were similar in focus groups and individual interviews.
Eligible patients included African-Americans with diabetes who were ≥21 years old and had an established attending primary care physician (PCP) at an urban academic medical center. Participants were identified by searching administrative databases for diabetes ICD-9-CM codes and patient visit information. Three attempts were made to contact participants. Participants received a $15 grocery store gift card as an incentive.
Topic guides were created using constructs of the Charles SDM model1,13, the theory of planned behavior (TPB)14 and the ecological model (EM)15. These guides consisted of a list of open-ended questions and follow-up probes, and were pilot-tested and modified.
Interviews and focus groups were audio-taped, transcribed verbatim and imported into Atlas.ti 4.2 software. A codebook was developed using an iterative process16. Five coders created uniform coding guidelines, and, subsequently, each transcript was independently coded by two randomly assigned reviewers. Outstanding issues were resolved by the group. Concepts and themes were discussed by the research team, and a conceptual framework was created based on predominant themes that emerged from the data.
The majority of participants were female (82%), and half were 40–65 years old. Sixty percent of study participants had completed at least “some college,” and approximately half had private insurance. The average duration of diabetes was 14 years.
A dominant theme in this study was the perceived imbalance of power between patients and physicians, which participants described as being exacerbated by race. Some participants described feeling disempowered where they did not have “the right” to be involved in health-care decisions. Participants often reported that African-American patients may be more likely to defer to a physician’s authority, refrain from asking clarifying questions and avoid challenging treatment recommendations (vs. White patients).
Participants reported that physicians may reinforce these power dynamics by limiting the health information given to African-American patients, not engaging such patients in discussions about treatment options and being “overbearing” in their communication (vs. White patients).
Health literacy includes access to health information and the ability to process such information in a meaningful way. Some participants felt unprepared to make informed decisions about their health because of inadequate medical knowledge. Others reported being unable to comprehend medical jargon and feeling too disempowered to ask clarifying questions. Conversely, when participants felt informed about their diabetes, they reported having more self-efficacy in talking with their physician, asking questions and participating in decision-making.
Participants noted that patient trust in their physician affects the patient/provider relationship, communication and decision-making patterns. Within the trusting relationships, participants reported feeling comfortable speaking up and asking questions.
Participants described fear and denial about having diabetes (and potential complications) as a potentially important barrier that keeps African-American patients from fully engaging in discussions with their physicians about their disease and its management.
Participants reported that prior exposure to diabetes through the experiences of family members may facilitate SDM because of the increased diabetes knowledge obtained, the additional motivation to avoid diabetes complications witnessed first-hand and the presence of additional social support to help during clinical visits.
Self-efficacy was described as an important facilitator (if present) and barrier (if absent). When participants felt more knowledgeable about their disease, and more capable of self-management, they had increased self-efficacy to talk to their physician about their health issues and participate in SDM.
Study participants stressed the importance of having physicians fully disclose and explain test results, address knowledge gaps and discuss medical problems in “layman’s terms.” They believed that African-Americans were less likely to experience such information-sharing than Whites, although some patients identified strategies that encourage physicians to provide more clinical information.
Participants noted that having health concerns “heard” and validated by their physician was important to maintaining open communication and in creating a sense of partnership that facilitates SDM. Participants believed that African-Americans are less likely than Whites to have their health concerns validated.
Several study participants said that a physician’s medical knowledge and technical skills would enhance their ability to participate in SDM. They reported that confidence in their doctor’s skills would increase their comfort in discussing treatment options, because decisions would be based on accurate medical information.
Participants appreciated when their physician was easily accessible (e.g., via phone) and devoted adequate time and attention to them (in and outside of the clinic setting). They noted that such accessibility afforded more opportunities for relationship-building and more time to communicate effectively with their physicians.
One of the most powerful SDM barriers/facilitators in our study was a physician’s interpersonal skills, which were described as facilitators at a ratio of 2:1 over a physician’s medical knowledge and technical skills. Interpersonal skills were described as essential to establishing a meaningful patient/provider relationship and creating an environment where patients feel comfortable expressing their concerns, being honest about adherence and playing a more active role in health-care decisions. Interpersonal skills and relationship-building were felt to be particularly important to African-Americans, who disproportionately mistrust health-care providers17.
We found that African-Americans with diabetes reported a range of patient- and physician-related barriers/facilitators to shared decision-making with their physicians. These barriers/facilitators have the potential to modify the patient/provider power imbalance, which was perceived to be exacerbated by issues of race. Physicians can work to reduce this power imbalance and promote SDM among this population through several mechanisms. Perhaps most importantly, physicians can utilize and enhance their interpersonal skills to create an “emotionally safe” space in which patients feel supported and empowered to engage in SDM. When patients receive verbal and non-verbal cues that their opinions are valued, they are more likely to respond with active participation in health-care decisions18.
In addition, physicians can address specific barriers (e.g., patient education, health literacy and sociocultural issues) within the clinical setting. For example, ensuring that low-literacy health materials are given (not just made available) to patients with diabetes, communicating with patients in “layman’s terms,” directing patients to community resources, using “teach-back” and other evidence-based approaches to patient education19, and proactively enrolling patients in diabetes education classes can help address the health literacy barriers that disproportionately affect African-American diabetes patients. Beginning conversations about familial experiences with diabetes and engaging family members during appointments may enhance SDM as well as diabetes outcomes, as there is evidence that familial support of communication behaviors can enhance diabetes self-efficacy20. Asking patients about potential fears or concerns that arise from having diabetes and sending affirming messages to patients about their diabetes management (to enhance self-efficacy) are additional potential ways for physicians to begin addressing the sociocultural issues that may affect SDM among this population. Because primary care physicians often have long-standing patient relationships, they may have the requisite rapport (and opportunity for ongoing discussions) to begin addressing the barriers/facilitators to SDM identified in our study.
This study has several limitations. The study took place in a single academic medical center and consequently our findings may not be generalizable to all African-Americans with diabetes. Also, this research utilized a purposeful sample of patients. Patients who had particularly strong and/or negative communication experiences with their physicians may have been more likely to join the study.
Nonetheless, our study has several strengths. It focuses on a specific illness and sociocultural context, and allows a deeper understanding of SDM barriers/facilitators within a specific patient population. Also, this study utilized a multi-method approach that allowed analysis of different data types and enhanced our ability to arrive at valid conclusions.
This research was supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Diabetes Research and Training Center (P60 DK20595). Dr. Peek is supported by the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development program and the Mentored Patient-Oriented Career Development Award of the National Institute of Diabetes and Digestive and Kidney Diseases (K23 DK075006). Support for Dr. Chin is provided by a Midcareer Investigator Award in Patient-Oriented Research from the NIDDK (K24 DK071933-01).
The funding sources had no role in the design and conduct of the study; collection, management, analysis, or interpretation of the data; and preparation, review, or approval of the manuscript for publication. Dr. Peek had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Conflict of Interest None disclosed.
An abstract of this work was presented at the Society of General Internal Medicine 31st Annual Meeting, Pittsburgh, PA, April 9–12, 2008.