More than 34 million people in the United States have diabetes, and over 88 million adult Americans (1 in 3) have prediabetes – a risk factor for type 2 diabetes.1 Further, nearly 1 in 4 Veterans who receive VA healthcare has diabetes. In 2020, VA launched a year-long diabetes campaign to help Veterans and VA healthcare teams better manage diabetes care.
Common communication challenges between patients and physicians, such as not knowing what questions to ask or fears that the physician might react defensively, may limit the effectiveness of communication during medical visits. Patients' beliefs about their role in communicating with their physicians during medical visits are especially important for patients with chronic conditions such as type 2 diabetes. Research has shown that patients with chronic disease who take an active role in communication are more satisfied, receive more information, and exhibit better health outcomes. However, adopting an active patient role (i.e., asking questions, expressing concerns) and overcoming communication barriers during medical visits may be even more challenging for vulnerable populations with chronic disease and low health literacy.
This issue of Veterans’ Perspectives highlights an HSR&D-funded study, led by Dr. Howard Gordon, which used focus group interviews to examine beliefs that influence patients’ active participation among Veterans with type 2 diabetes. Published in BMC Health Services Research, the study found that Veterans' use of participatory communication was influenced by their beliefs about their diabetes and their views of physicians' expectations. Participatory communication emphasizes two-way dialogue and encourages the sharing of opinions, information, and perceptions between speakers.
Veterans (n=20) were recruited from one inner-city VA hospital and had poorly controlled type 2 diabetes, for whom most providers would recommend intensification or increased adherence to medication, diet, and exercise regimens. With a mean age of 61, the majority of study participants self-identified as black or African American.
Veterans participated in focus groups in which the main guiding questions targeted physician-patient communication about diabetes, and included:
- How do you feel about talking to your doctor?
- How do you decide whether you ask your doctor to explain things?
- What do you think would make it easier for you to talk to your doctor?
- We want to help patients and doctors talk to each other, what do you think about that?
Questions were followed with prompts for clarification and additional explication. Groups were conducted in a private conference room, lasted one to two hours, and were recorded.
Overall, many Veterans said they had difficulty understanding their physicians when they used complex language. They also indicated that they felt intimidated, or at a disadvantage. Eight recurring themes were grouped into three categories pertaining to patients’:
- Beliefs about their condition;
- Perceptions or expectancies about physicians’ communication behaviors; and
- Perceptions about external factors that influence patient-physician communication.
Participants who minimized the severity of their condition justified their communication behaviors by creating a positive reframing of the bad news that their diabetes was not controlled.
“[My sugar] is a little bit high. Never went over 400, so I consider that good.” –Veteran study participant
Participants’ feelings and beliefs also included self-blame about meeting the challenges of self-management or minimization of the severity of their diabetes.
“Sometimes I’m ashamed about how I’ve been carrying on. I know I eat the wrong things. I know I don’t exercise, and I know my sugar’s way too high.” –Veteran study participant
Feelings of shame left some participants unable to talk freely with their physician about difficulties they were having controlling their behaviors.
“The thing is, I don’t feel comfortable [asking questions] because, really it’s my fault.” –Veteran study participant
“I know that part of the reason is because, I eat, and I eat something with sugar before I go to bed. And that’s why it’s so high. I’m not going to talk to my doctor about trouble with my insulin because I know it’s my own fault.” –Veteran study participant
Participants described how physicians’ use of medical jargon or too much information was a barrier to active participation in the encounter.
“I’m battling an encyclopedia… They are talking from the Encyclopedia Britannica brain.” –Veteran study participant
Veterans also indicated that they evaluated their doctor’s communication style to determine their continued use of active participation. When they thought the doctor was using language they did not understand, particularly in response to a question, they tended to withdraw.
“If I don’t think or understand the response they gave me [to my question], then I don’t go any further with it. If I understand, then it goes to a different color.” –Veteran study participant
“Well, I didn’t understand what they were saying, and I didn’t want any more bad news so I left it at that.” –Veteran study participant
Pressure was a common theme exemplified by participants’ reports that physicians used warnings or threats to discuss a medical condition. The perceived conflict or tension in the medical encounter interfered with communication and was a reason for not speaking up for many participants.
“They use scare tactics and try to intimidate you and, like, I keep thinking we were all boot camp mentalitied [sic] into not being afraid of death.” –Veteran study participant
In addition, many Veterans perceived a power struggle in the physician-patient relationship in which the physician holds the information and determines how the visit unfolds. Participants appeared to exert their own form of control by deciding not to engage, avoiding perceived power struggles.
“[Doctor] shoots at me and I just, bulletproof, I just take it. There’s no negotiating with [Dr.]” –Veteran study participant
Similarly, others described a strategy of asserting their own power to withhold information or provider misinformation, thereby creating more distance.
“I say what I think they want to hear… I’ll tell them a lie. I just say, ‘Yeah, everything’s fine.’” –Veteran study participant
Barriers to communication included three themes: lack of continuity of care, use of the electronic health record, and patients’ perception that there was not enough time available for the medical encounter. Participants’ statements about lack of continuity of care were marked by frustration about difficulty establishing a personal relationship with their physician.
“You get comfortable with a certain doctor, and then they change you and they give you a new doctor. And then you have to start all over again.” –Veteran study participant
Time was another theme that was commonly raised. Time constraints were seen by patients as a pre-determining factor that negatively impacted their experience with the physician.
“The other thing is, you get the sense of being taken care of but at the same time being rushed because they have to see the next guy because when you came to see them, you saw 25 other guys in chairs waiting. It’s an unspoken situation, but I’m going to take care of you but it’s only going to take 32 seconds because I have the next 32 seconds to take care of the next guy.” –Veteran study participant
“It’s that unmentioned sensation that you get. I need to ask questions, but I don’t want to ask questions because it may be too complicated and too long.” –Veteran study participant
Time-related barriers also included a sense of fatalism; for example, the following participant believed that his physician might use his time better with another patient and that it was futile to speak up.
“Just accepting that no matter if I ask or not, it’s going to be what it’s going to be. So why worry [the doctor], [Dr.] can see someone else.” –Veteran study participant
These results provide insight into how VA can help both patients and healthcare providers generate good communication. Results also provide data that could help train providers to minimize jargon and bridge power differentials and encourage patients to actively participate.
These results may be especially important when considering that active patient participation can be more challenging for racial/ethnic minorities. For example, African American patients may be less likely to speak up than White patients and, in turn, get less information from their physicians. This may be related to a physician-patient power differential. Moreover, African American patients (and other minorities) often have an added communication challenge related to lower sociocultural power because they are more likely to be seen in racially discordant medical interactions.
Previously developed interventions to encourage patients’ active communication have shown improved processes and outcomes of care, including active communication, treatment adherence, functional status, and biomedical outcomes; however, the most effective interventions used trained personnel and as a result were expensive. Alternative methods are needed for the delivery of interventions that encourage an active patient role in medical visits. Video-based interventions provide a potential alternative method. Video-based education is acceptable to patients from a broad range of cultural backgrounds and can be particularly useful for patients with limited literacy.
For more information about this study, please contact Howard Gordon, MD (Howard.Gordon@va.gov ), part of the Jesse Brown VA Medical Center in Chicago, IL.
- Diabetes and Prediabetes. Centers for Disease Control and Prevention (CDC).