Reasons for Open and Closed Attitudes Regarding Type 1 Diabetes

Thirty-one participants were recruited through purposive and snowball sampling. Flyers were distributed by a diabetes clinic, and participants were also recruited by word of mouth. Participants were asked to nominate other individuals they knew who were ≥18 years of age and had type 1 diabetes to participate. Most participants were diagnosed as children or adolescents (before the age of 20 years); however, we recruited some individuals (n = 7) who had been diagnosed as adults to achieve maximum variation in age at diagnosis (20). Participants ranged in age from 20 to 70 years (mean 38.48, SD 16.73). Age at diagnosis ranged from 2 to 48 years (mean 16.39, SD 9.66), and individuals had lived with diabetes on average for 21.94 years (SD 13.55). Nineteen participants (61.3%) were female. At the time of the interviews, 25 participants (80.6%) used insulin pumps. Participants were white, middle class, and residents of a western state.

The majority of participants (96.8%) completed two interviews, each lasting 1 hour on average. Participants were interviewed by trained research assistants in locations convenient to them or by telephone, if preferred. In the first interview, participants responded to the general prompt, “Tell me about growing up and living with type 1 diabetes.” Participants guided this interview, except when asked to explain further or go into greater detail. Participants were interviewed again ∼1 week later to obtain any needed clarification on statements from the first interview and to answer more specific prompts (e.g., “Tell us about when you were diagnosed with type 1 diabetes” and “Tell us about how you self-manage your diabetes”).

All interviews were recorded with digital audio recorders, transcribed verbatim, and uploaded into NVivo qualitative data analysis software version 10 (QSR International, Doncaster, Australia) for data organization and management. Researchers used an inductive approach to data coding. Initially, two researchers independently read each interview and used a process of open coding to identify major patterns that emerged in the data (20,21). If differences in coding occurred, they were resolved through discussion with a third researcher. In the axial coding phase of the analysis, two additional researchers collapsed some categories and also identified subcategories, focusing on the open and closed attitude categories for the purpose of this study (20,21). Throughout the analysis, researchers revised category and subcategory descriptions and produced an audit trail to document the emerging themes.

After the final categories and subcategories were confirmed, researchers identified participant quotations that best illustrated the subcategories. The two initial researchers and the third researcher then discussed and finalized the categories, subcategories, and most representative quotations.

A core category emerging in the data analysis of the interview transcripts was participants’ attitudes toward type 1 diabetes. Two major themes emerged from the data: open attitudes and closed attitudes. Individuals discussed their open and closed attitudes toward caregivers (i.e., parents or spouse), family members, peers, romantic partners, and nonmedical professionals (e.g., teachers, coaches, principals, or bosses).

An open attitude referred to a participant’s willingness to share or talk about type 1 diabetes. Participants showed an open attitude as a result of 1) supportive behaviors demonstrated by others, 2) feeling confident and comfortable about diabetes, 3) desiring to feel normal despite diabetes, 4) seeking to inform others about type 1 diabetes and its management, or 5) a casual attitude. Analysis of transcripts also showed that participants demonstrated open attitudes both at initial diagnosis (defined as typically occurring up to 1 year after diagnosis) and after diagnosis (defined as typically occurring >1 year after diagnosis) (Table 1).

Support was the most commonly reported reason why participants expressed openness toward others about type 1 diabetes. When others were nonjudgmental, understanding, and willing to help, participants were more open. A 25-year-old man diagnosed at the age of 19 years stated, “I don’t mind talking about [diabetes] . . .to my wife or to my family, people who honestly care . . . .” The number of participants who described support as a reason for an open attitude was lower at diagnosis (n = 6) than after diagnosis (n = 10).

Some participants demonstrated openness towards peers and romantic partners because they were not embarrassed and did not care about others’ judgments. We labeled this category “confident and comfortable.” A 59-year-old woman diagnosed at the age of 19 years stated that she had “never been embarrassed by the diabetes . . . [and that it] has [n]ever affected any relationships . . . .” For some, type 1 diabetes was a positive, distinguishing feature of themselves. A 60-year-old woman diagnosed at the age of 16 years expressed how she was “not embarrassed anymore,” but that her diabetes made her feel unique and that she stood out from others. A greater number of these participants expressed being open after diagnosis (n = 9) than at their initial diagnosis (n = 4), perhaps as a benefit of adjustment over time.

Participants who did not feel defined by their diabetes, but rather viewed themselves as normal despite their diagnosis, were more open toward their peers. A 20-year-old woman diagnosed at the age of 5 years realized that diabetes “was a part of [her], but . . . didn’t define [her]” and said that visibly wearing her pump endorsed her ownership of her diagnosis. Slightly more participants in this category expressed openness after diagnosis (n = 5) than at initial diagnosis (n = 2).

Some participants were open with peers to educate them and help them more accurately understand diabetes management (e.g., diet, exercise, and stress-induced blood glucose levels), as well as the differences between type 1 and type 2 diabetes. Perhaps participants felt that people were generally ignorant of type 1 diabetes and “that more awareness [needed] to be brought to [it],” as one 30-year-old woman diagnosed at 9 years of age said. There was a slightly higher number of participants who reported openness because they wanted to educate others after diagnosis (n = 4) than at initial diagnosis (n = 1).

Participants also reported openness toward others because they were indifferent to sharing (i.e., thought their diabetes was “no big deal”). A 38-year-old man diagnosed at the age of 19 years said that “after a while [he] . . . didn’t really care” that people knew he had diabetes. Believing that diabetes was no big deal was more commonly reported after diagnosis (n = 9) than at diagnosis (n = 1).

In summary, there were fewer reports of being open at initial diagnosis (n = 14) than after diagnosis (n = 38). Participants showed open attitudes primarily because they sought support from others, thought their diabetes was no big deal, and felt confident and comfortable with their diagnosis.

Individuals exhibited a closed attitude when they were reserved or secretive about type 1 diabetes either at or after diagnosis. Participants showed a closed attitude because of 1) fear of discrimination, 2) misunderstanding about type 1 diabetes, 3) embarrassment and shame regarding diabetes, or 4) a feeling that their diabetes was no big deal (Table 2).

The most common reason participants reported being closed toward peers, nonmedical professionals, family members, and romantic partners was fear of discrimination (i.e., fear that others would treat or view them differently). Participants expressed a desire to be viewed as normal. A 64-year-old woman diagnosed at the age of 10 years said, “Nobody will know because I want to be normal.” More participants reported being closed because of discrimination after diagnosis (n = 10) than at initial diagnosis (n = 7).

Participants also showed a closed attitude because they felt embarrassed and ashamed about their diagnosis. Participants reported a fear of “having reactions in public because . . . [of] draw[ing] . . . attention to [themselves] . . . .” Individuals also sometimes felt embarrassed or ashamed because they blamed themselves for having diabetes. A 64-year-old woman diagnosed at the age of 19 years said the reason she was private when she was first diagnosed was because of “shame. . . [and] a little . . . guilt . . .” and questioned “would [she] have not gotten [diagnosed] if [she] had not been secretly on birth control pills?” Fewer numbers of participants had closed attitudes due to embarrassment or shame after diagnosis (n = 2) than at initial diagnosis (n = 6), suggesting that participants may become comfortable with type 1 diabetes over time. Both at and after the time of initial diagnosis, participants’ embarrassment and shame led to closed behaviors predominately toward peers. For example, one 30-year-old woman diagnosed at the age of 10 years recounted that “most of [her] friends . . . [didn’t know] . . . until after high school . . . .”

Feelings of embarrassment about their diagnosis may lead to maladaptive adherence behaviors for some people with type 1 diabetes. A 60-year-old woman diagnosed at the age of 16 years said she felt “so embarrassed” to administer shots in public that “if I forgot [an injection], I wouldn’t say anything . . . . I would just go the day without it.”

Some participants were closed toward others because they felt that others did not understand or were not educated about type 1 diabetes (e.g., differences between type 1 and type 2 or how diabetes is managed). A 30-year-old man diagnosed at the age of 9 years demonstrated closed attitudes because “of the stereotype of being overweight . . . [and having] to explain to people that [type 2 diabetes] is the one that is normally caused by lifestyle habits and choices . . . .” He said he “got . . . tired of . . . being different.” Slightly more participants reported being closed because of misunderstanding after diagnosis (n = 6) than at the initial diagnosis (n = 4).

Participants reported closed attitudes toward peers, romantic partners, and nonmedical professionals because they did not feel the need to discuss their diabetes (i.e., it was “no big deal”). A 22-year-old female diagnosed at the age of 16 years said, “I don’t tell most of my professors in college ’cause I just don’t find it relevant . . . .” The number of participants who reported being closed for this reason were the same both at and after diagnosis (n = 3). Although some participants felt that it was no big deal to be open about their diagnosis, others felt that disclosure was unnecessary.

Overall, there were slightly fewer reports of reasons for being closed at initial diagnosis (n = 23) than after diagnosis (n = 25). However, within some subcategories, more participants reported being closed after compared to at their initial diagnosis. Whereas a greater number of participants reported showing closed attitudes because of discrimination and misunderstanding after diagnosis, slightly fewer participants reported feeling embarrassed and ashamed after diagnosis.

Results also showed that some participants consistently exhibited open or closed attitudes both at diagnosis and after diagnosis, whereas others fluctuated in their attitudes. Eleven participants reported only open attitudes at or after diagnosis or for both. In contrast, four participants reported only closed attitudes at or after diagnosis or for both. Twelve participants reported a combination of open and closed attitudes at or after diagnosis or for both.

In analyzing interviews of adults who had lived with type 1 diabetes, a core category of participants’ attitudes toward diabetes emerged. Participants described open and closed attitudes toward their diabetes both at and after diagnosis. They also described a number of reasons for their open and closed attitudes.

The most common reason participants exhibited open attitudes was because of support from others. Individuals may be open so that they can have additional support to cope with type 1 diabetes and its management. Research shows that positive support from health care providers, spouses, and family members may help to reduce diabetes-related distress (22), improve blood glucose testing (23), and improve diabetes coping skills (24). Nurse educators, doctors, and therapists should continue to educate caregivers, romantic partners, and nonmedical professionals about how to positively support those with type 1 diabetes. Encouraging support may contribute to individuals feeling more comfortable disclosing information and seeking assistance in their diabetes-related self-care.

Feeling confident and comfortable also allowed participants to be open about their diabetes. Such feelings may be a result of developing resilient traits that help with the challenges of living with a chronic illness. One study found that lower levels of resiliency were associated with higher levels of distress, maladaptive coping strategies, poorer quality of life, and poorer glycemic control in adolescents with type 1 diabetes (25). Little research has investigated feelings of confidence versus shame when living with a chronic illness. Future research might consider what resources may reduce shame and increase confidence in those with type 1 diabetes and also explore sex differences with regard to these feelings.

Findings also suggest that as participants adjusted, they may have accepted that diabetes was a component of themselves but did not limit their capabilities or potential to lead a normal life. Believing this may have led participants to feel less embarrassed and more confident and comfortable and thereby to share more openly with others.

Participants also did not want others to limit or define them by type 1 diabetes. If participants felt limited by others because of their diabetes from the time they were first diagnosed, they may have chosen to remain closed to avoid any further discrimination. Research with emerging adults shows that young women aged 18–24 years share similar fears of being defined by their diagnosis instead of being seen or treated as normal (26).

Although more participants showed open attitudes after diagnosis, many still exhibited closed attitudes because of discrimination. This may be partially the result of people’s lack of understanding about type 1 diabetes. Some evidence suggests that as discrimination and stigmatization increase, a person’s willingness to share or seek help regarding disability decreases (27). Little research has explored this relationship with regard to type 1 diabetes. Future research should investigate people’s beliefs regarding a person’s control over type 1 diabetes, how these beliefs influence the way they treat those with the diagnosis, and how their treatment might influence an individual’s own beliefs about his or her diabetes. Understanding these matters may discourage blaming people with type 1 diabetes for their disease and reduce the fear of people with the disease about carrying out their self-care tasks in public situations.

Research with adults indicates that the emotional burden of living with type 1 diabetes is associated with higher levels of depression and lower quality of life (28). Helping those with type 1 diabetes avoid embarrassment could help to reduce their emotional burden and consequently improve their regimen adherence and health outcomes.

Interestingly, for the themes of discrimination, misunderstanding, and embarrassment and shame, participants overwhelmingly reported peers as the people toward whom they had closed attitudes. In contrast, peers were also the individuals from whom participants felt the most support; participants revealed that they were open because they felt confident and comfortable with peers. These results point to the importance of the peer group for individuals with type 1 diabetes. Innovative approaches are needed for working with the peers of adolescents, emerging adults, and adults with type 1 diabetes. Diabetes educators and medical social workers will need to be creative in developing ways to educate peers about the realities of type 1 diabetes and about how they can support their friends with type 1 diabetes.

Some participants in our study (n = 11) only exhibited open attitudes, some only showed closed attitudes (n = 4), and others expressed both open and closed attitudes (n = 12). For this reason, health care providers and family members should be cognizant of the possibility that diagnosed individuals may be ambivalent in their attitudes, while at the same time working to eliminate factors that might contribute to closed attitudes.

Several limitations of this research should be considered. The sample was homogeneous with regard to race and socioeconomic status. In addition, participants ranged in age from 20 to 70 years, and those who were older or who had a longer duration of diabetes may not have remembered their experiences at diagnosis as well as did younger participants. In addition, because participants were asked to recall past experiences, it is possible that recall bias affected their responses. Time and adjustment may influence how people recall perceiving their initial experience with diagnosis. Future research should continue to investigate open and closed attitudes using more diverse samples. In addition, future research could compare open and closed attitudes in individuals who have been recently diagnosed to those who have lived with type 1 diabetes for a longer period of time.

The majority of type 1 diabetes research has centered on children and adolescents. This study aimed to bridge the gap by interviewing adults with type 1 diabetes to explore reasons behind their open and closed attitudes surrounding diabetes. The most commonly reported reason for openness was that participants sought support from those who were nonjudgmental, understanding, and willing to help. The most commonly reported reason for showing closed attitudes was fear of discrimination. Researchers found fewer participants with closed attitudes and more participants with open attitudes after diagnosis compared to at the initial diagnosis.

Health care professionals should consider effective forms of type 1 diabetes education and ways to expand its scope to reach more people. Such efforts could reduce misconceptions and encourage people to engage in more positive support. This in turn may help individuals with type 1 diabetes feel more open and willing to seek assistance with their diabetes self-care.

The Family Studies Center and the College of Nursing at Brigham Young University provided financial support for this research.

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

J.K.E., H.M.H., and S.O.R. wrote the manuscript. All of the authors researched the data, contributed to the discussion, and reviewed and edited the manuscript. S.O.R. is the guarantor of this work and, as such, 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.