Patient Decision-Making About Self-Disclosure of a Type 2 Diabetes Diagnosis: A Qualitative Study

After Institutional Review Board approval, participants were recruited from a larger federally funded mixed-methods study designed to develop a physician curriculum on diabetes care (27). Our goal was to examine a diverse range of cases that were relevant to the type 2 diabetes diagnosis process. Purposive sampling was used with maximum variation, and data collection continued until saturation was achieved. Using a respondent pool from a patient survey that was part of the larger study, researchers invited all survey respondents (N = 773) (28) through a mailed invitation. Research coordinators recruited 22 interview participants. As participants volunteered, they were scheduled for interviews.

Participants received care from one of two medical centers in distinct regions of the United States. One medical center was in Augusta, GA, in the southeast, a geographic region with a high prevalence of diabetes (29). The other medical center was in Las Vegas, NV, in the western region, which has a comparatively lower prevalence of diabetes.

Participants ranged in age from 32 to 64 years, and all had a diagnosis code for type 2 diabetes in their electronic medical record. Interviewees’ demographic data are summarized in Table 1.

The first author (C.J.W.L.) created the interview guide for the larger study in collaboration with another qualitative research expert. Table 2 provides example questions from the interview guide. C.J.W.L. instructed two research assistants on the use of the interview guide before data collection. Research coordinators obtained consent and demographic data. The two research assistants and C.J.W.L. collected data from October 2016 to April 2017. Semi-structured interviews lasted approximately 1 hour each and were audio-recorded and professionally transcribed, resulting in more than 1,239 pages of data. To decrease participant burden and maintain privacy, interviews were conducted at participants’ primary care centers.

Because this was a secondary analysis, the analytic process was not done concurrently with data collection; rather it was completed once all data had been collected (30,31). In phase 1 of the analysis, a qualitative expert (L.A.C.) instructed a medical student (C.V.) on the iterative process of qualitative analysis. They were not involved in the data collection. The two researchers (L.A.C. and C.V.) met multiple times over a period of 6 months to become immersed in the data and discuss participant descriptions of disclosure. Researchers then identified and segmented data that reflected these constructs by analyzing half of the interview transcripts to conduct a preliminary thematic analysis and identify potential themes derived from the data. Data analysis was managed and coded through the use of Microsoft Excel software and handwritten field notes. In phase 2, C.J.W.L. joined the analysis process. The three researchers (L.A.C., C.V., and C.J.W.L.) sought to validate emerging themes by reviewing the analysis conducted on the segmented text while also conducting axial coding to define each theme’s characteristics and confirm data saturation. In phase 3 of analysis, a fourth researcher (E.W.W.) used the finalized codebook to reanalyze all interviews to ensure all four of Guba and Lincoln’s criteria (32) were met. Verification strategies such as memo-keeping and maintaining methodological coherence/congruence were used throughout analysis to promote rigor (33).

In participants’ descriptions of the decision-making processes that informed their decisions regarding whether to disclose their diagnosis, six themes emerged. Three motivations prompted open disclosure: 1) to seek information, 2) to seek social support, and 3) to end the succession of diabetes. The other three motivations prompted guarded disclosure: 4) to prepare for an emergency, 5) to maintain an image of health, and 6) to protect employment.

The first three motivations prompted open disclosure, whereas motivations 4, 5, and 6 prompted guarded disclosure. These themes are described below using quotes from participants’ narratives.

Participants openly disclosed their diabetes diagnosis when they wanted to hear information from other people who were living with type 2 diabetes. As one patient said, “It’s kind of like, if you’re a smoker, you know all the people that smoke. You’re a diabetic, you hear other people that have it, so then you kind of talk to them a little bit . . . . I talk to people because, in talking to them, sometimes I might find out things that I don’t know about” (Patient 14, male). Another patient described a similar tactic in the workplace:

Within this group, participants generally disclosed to others with whom they experience everyday living. As one patient described it, “My best friend, he has the same thing I got. Exact. He takes the same exact medicine I take, and we have two different doctors . . . . [A]t least three or four times a month, he’s at my house, or I’m at his house, but, yeah, we talk about that. We were both kind of diagnosed at the same time” (Patient 11, male).

Participants said that sharing the diagnosis was often connected to social eating situations. They described situations in which they told others about their diagnosis, hoping that others would support their healthy eating behavior. As one patient said, “You have to let them know that’s got too many calories, it’s too sweet, I can’t eat it . . . I’m working on this diabetic thing, trying to get my A1C level down” (Patient 8, female). This was also true in working environments in which coworkers saw each other’s lunches. One participant said, “We talk every day, and we talk about food” (Patient 15, female).

Disclosure was common among couples, which prompted spousal support. One patient noted that she and her husband both had diabetes, which enabled them to encourage each other in healthy choices. “Every once in a while, we try to encourage one another,” she said. “We’ll see each other making a poor choice, and we’ll say something like, you know, ‘Maybe we should do something else.’ Or, ‘After this, you know, this is it. We’re not gonna do this anymore’” (Patient 13, female). Another patient received her diagnosis while she was dating her current husband. She said, “He knew about it right away, just because, like, we were always together, you know, so it’s important to have somebody to confide in” (Patient 22, female).

Participants reported telling their biological children about their diabetes diagnosis in an effort to end the succession of diabetes in the family. These participants recognized the genetic nature of type 2 diabetes. As one participant explained, “I tell my son every day, ‘You better do something now’” (Patient 13, female). Parents emphasized that they were using their own diagnosis as a warning to their children. One father said, “My son, he knows. I tell him . . . ‘[W]atch what you eat. What you eat now as a young person will bite you later on as an old person. So, watch what you’re eating now, you know? I mean it’s okay to have a hamburger now and then from outside, but not too much, you know?’” (Patient 5, male).

Another participant talked about how the visual nature of her daily treatment reminds her children about her diagnosis. She said, “He sees that sometimes Mommy pokes herself in the morning. And, you know, this little thing . . . he loves my little machine, and he’s always after it. He knows that Mommy takes a lot of pills, and he knows that when I’m on the insulin, he sees me with the needles and injection” (Patient 22, female). She emphasized the need to talk to her son about it in more detail when he’s older because of his genetic risk. “At some point, for his own safety, that’s gonna be discussed, but also for him to understand, you know, that it is a possibility. God willing, it won’t be until like, you know, he’s 60 or 70 or 100” (Patient 22, female).

Some participants described a need, rather than a desire, to tell others about their diabetes diagnosis, in preparation for an emergency. As one patient shared:

Some participants expressed being guarded with the disclosure of their diabetes because they wanted to maintain an outward image of health. Some even avoided talking about the disease at all. Underlying this motivation were both cultural and societal factors. One patient described his own culture’s norms regarding talking about health, saying, “Black folks don’t do that . . . . We don’t communicate like that. We are more secretive about our health” (Patient 6, male). Another patient described a reticence to talk about health at all, saying, “We don’t talk. I’m very uncomfortable to talk with them, and it’s not good. I don’t want to talk to them” (Patient 17, female).

Participants also described the social stigma that surrounds diabetes in America. As one participant put it, “For a long time, I didn’t tell anybody because I was embarrassed because I did something wrong to be a diabetic. So, I didn’t really tell people” (Patient 22, female). When she did share her diagnosis, she said she regretted it:

One participant said that, although she and her husband talk about her diagnosis, she does not talk to her children about the details of her diabetes. “They know I’m diabetic,” she said. “I guess I’m a little embarrassed about it, a little bit ashamed of it. Definitely. Because, like I said, I know I did it to myself. We don’t talk about it . . . . I don’t talk about my diet or my medicine or, you know, my exercise or anything like that” (Patient 12, female).

The final motivation involved participants being guarded about disclosing their diagnosis to protect their employment. One patient described seeing how disclosed diagnoses have affected other employees, saying, “Everybody I know that’s had diabetes in the [workplace] that I’ve been able to open up to, every single one of them has [left the workplace]. No one’s been able to retire, so it’s scary. It’s seen as a negative” (Patient 22, female).

When participants perceived benefits of disclosure such as gaining information, finding social support, or ending the succession of diabetes in their family, they openly disclosed their type 2 diabetes diagnosis to others. However, participants were guarded in their disclosure when they perceived the disease as a threat to their image or job. Participants were also guarded when they perceived that the sole benefit of disclosure was to prepare for an emergency. By understanding patients’ decisions to disclose or not to disclose their disease to others, clinicians can adjust their counseling to encourage disclosure to help build a support network.

Three motivations found here echo previous studies that describe a disclosure dialectic in which the competing value of health being personal is weighed against the need to tell others to get help (16). Participants said they knew they needed help, whether in the form of information, support, or aid in the event of an emergency. Our results also replicate a previous finding that participants worry about the career implications of a diabetes diagnosis (19). This work-related barrier to disclosure has also been connected to other health conditions such as concussion (34,35).

Our findings can be interpreted within the framework of the disclosure decision-making model (DD-MM) (36). The DD-MM explicates the process of a patient’s decision to enact a disclosure event based on three assessments: 1) five qualities of the diagnosis itself: perceived stigma, prognosis, symptoms, expectation of the diagnosis, and relevance of the diagnosis to others; 2) the quality of the relationship with and anticipated reaction of the receiver of the disclosure; and 3) the patient’s perceived skills and confidence to share the information (disclosure efficacy). The emerging themes in our study align with the qualities of the diagnosis.

Participants did not talk about the symptoms of diabetes, such as increased thirst and fatigue, but rather focused on the behavior changes that a diabetes diagnosis requires, such as reducing carbohydrate intake and increasing physical activity. Behavior changes were visual cues that something in the patient’s life had changed or that the patient was different from the group. These visible behavior changes provided opportunities for participants to disclose, rather than directly prompt a disclosure. Perceived stigma emerged as a significant barrier to disclosure.

In our sample, the hereditary nature of diabetes influenced both participants’ expectations of the diagnosis and their beliefs about the relevance of the diagnosis to others, particularly their biological children. Diabetes disclosure motivated by a desire to end the succession of diabetes within the family resonates with previous survey research showing that people who were worried about relatives’ health were more likely to disclose their diagnosis and talk about the link to family risk (37). This disclosure motivation indicates that some people could be receptive to clinicians asking them to inform their relatives about familial susceptibility to type 2 diabetes and preventive options (38), similar to interventions of patient-mediated cascade screening for familial hypercholesterolemia (39). Research shows that adult children of individuals living with type 2 diabetes are open to receiving information from family members about reducing their own risk of developing type 2 diabetes (40,41).

This study builds on previous literature that identified the disclosure decision-making process for young adults living with type 1 diabetes (10–13). With a focus on how patients diagnosed with type 2 diabetes make disclosure decisions, this study extends previous literature that revealed barriers to disclosure for patients living with type 2 diabetes (18–22,24) to identify the decision-making process for disclosing their disease to others. It also confirms patterns of disclosure decisions revealed among specific cultural groups (16,23,25). This study can be used to inform intervention development to promote disclosure with patients receiving a type 2 diabetes diagnosis. Future research should investigate the downstream effects of interventions on patient self-management behavior and glycemic control.

Our qualitative findings do not replicate previous work that demonstrated a sex/gender difference in which women more readily disclosed the diagnosis to friends and family (42). The study here was not designed as a comparative qualitative study, but our data revealed that both men and women choose both open and guarded disclosure. Similarly, we do not reveal differences among participants from different cultural groups. Although culture influenced perceptions of disease, it did not do so uniformly. Rather than make generic recommendations, we suggest that clinicians tailor their communication to individual patients (43).

Based on our findings, we recommend three specific communicative actions for clinicians as they talk to patients about a new or existing diabetes diagnosis. First, clinicians should talk to patients about the benefits of disclosure. Patients may not inherently know or understand the benefits of gathering information, gaining social support, and sharing information of future risk with the family. Clinicians can introduce this idea within the SPIKES framework (44), which provides steps for delivering bad or life-altering news such as a chronic diagnosis. Although the SPIKES framework does not directly address disclosure, it includes two points for introducing disclosure and social support in the conversation. When considering the setting, clinicians should consider who is present in the encounter and ask the patient if there is anyone else whom the patient wants to have join them in the conversation. Then, when summarizing the strategy and next steps, the clinician can ask questions about the patient’s social network, particularly listening for the size and diversity (i.e., blend of family and friends) of the patient’s social network (45). Clinicians should encourage patients to disclose their diagnosis to a mix of friends, family, and colleagues who can provide social support in the different situations and settings that a patient living with diabetes will encounter (46). If a patient is initially hesitant to disclose the diagnosis to others, providers can ask open-ended questions, discuss the person's worries and concerns, listen, and be empathic and sympathetic (47). Providers should not confront patients or push back if they are hesitant, but rather reframe the recommendation to disclose the diagnosis and help patients identify benefits and drawbacks of disclosure.

Second, clinicians can teach patients the skills of disclosure. Overall, this type of skill-building may not fit into the initial diagnosis appointment and may require longitudinal patient education concerning social support. Patients can develop disclosure efficacy through preparation and rehearsal (48). When patients plan and practice disclosure, potentially within the structure of diabetes education classes and groups, they can develop confidence and reduce uncertainty in disclosure conversations (49). As disclosure efficacy increases, patients’ likelihood to disclose increases (36). One immediate tactic that clinicians can enact to increase disclosure efficacy is decreasing the perceived stigma associated with the diagnosis (50).

Third, clinicians should directly address stereotypes in the clinic in an effort to de-stigmatize diabetes. Our results, along with other studies (18,19,26,51), have demonstrated how the perceived stigma of diabetes can inhibit patient self-management. When clinicians candidly discuss existing stereotypes in clinical conversations with patients, they take a first step toward addressing stigmas. Within the SPIKES framework (44), as clinicians assess the patient’s knowledge about diabetes, they can actively listen for potential stereotypes that they should address and potentially correct.

The limitations of this study include a relatively low number of participants, although the main themes reached saturation, which suggests that enough participants were enrolled. Recall and social desirability bias are also inherent in the use of interviews. Finally, in this population, all participants had health insurance and equitable access to care, which is not consistent in many groups.

Individuals living with diabetes vary in how they disclose their diagnosis to family members and others in their social support network. When individuals perceive benefits to disclosure, they openly disclose their diagnosis and open opportunities for others to support them in self-management strategies. Clinicians can positively motivate patients to disclose their diabetes diagnosis by increasing their disclosure efficacy.

The authors thank Heather Rider, Angela Seehusen, and Jasmyne Womack for assistance with recruitment and data collection. They thank Carla Fisher for sharing her expertise in writing the interview guide. They acknowledge Paul Crawford for leadership and contributions to the larger study, within which this study was conducted. This work was conducted within the Military Primary Care Research Network.

This study was funded by the Office of the Assistant Secretary of Defense for Health Affairs through the Defense Medical Research and Development Program under award no. FMBB100383695. The funder was not involved in the study design, writing of the report, or decision to submit the article for publication. The views expressed within this article represent those of the authors and do not reflect the official position of the U.S. Air Force, U.S. Navy, Henry M. Jackson Foundation for the Advancement of Military Medicine, Uniformed Services University of the Health Sciences, or the U.S. Government, Department of Defense, at large.

No potential conflicts of interest relevant to this article were reported.

C.J.W.L. contributed to the study design, data analysis, and manuscript writing. C.V. and E.W.W. assisted with data analysis. L.A.C. contributed to data analysis, logistics, and manuscript writing. J.T.J. contributed to writing and editing the manuscript. D.A.S. contributed to the manuscript and assisted in the study design. C.J.W.L. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.