Focus on the Positive: A Qualitative Study of Positive Experiences Living With Type 1 or Type 2 Diabetes

Focused ethnographic methods were used in this study to describe the positive experiences of living with type 1 or type 2 diabetes. Focused ethnography is a means of accessing experiences, perspectives, and behaviors in the context in which they occur, thereby improving our understanding of factors surrounding health and disease (24). As in other forms of qualitative research, the data collected are rich in their descriptions of what people know, believe, and do. In focused ethnography, informants or participants may not be connected by the same culture in the broadest sense; however, they typically share behavioral norms, local knowledge, and a common language from living through a common experience (e.g., living with type 1 or type 2 diabetes). For the purposes of this study, the diagnosis of type 1 or type 2 diabetes was the sociocultural context of the participants. Participants shared their diagnosis, diabetes education practices (e.g., checking feet daily), diabetes beliefs (e.g., hyperglycemia is serious), diabetes language (e.g., diabetes terminology such as insulin pumps, diabetic ketoacidosis, and neuropathy), and recommended self-care behaviors (e.g., blood glucose monitoring and taking medications). We chose to include participants with either type 1 or type 2 diabetes given the shared experiences, diabetes education practices, diabetes beliefs, diabetes language, and recommended self-care of the two groups.

The University Office of Research Compliance approved the protocol and all recruitment procedures and materials (18-X-346). All participants provided informed written or verbal consent before participation.

We used maximum variation sampling (25), a form of purposive sampling, to recruit adults ≥18 years of age who were able to read and speak English and were diagnosed with either type 1 or type 2 diabetes. Exclusion criteria included individuals whose diabetes diagnosis could not be clearly identified as one of these forms, those with maturity-onset diabetes in the young, those <18 years of age.

Participants were recruited via flyers, e-mail messages, University-owned and maintained listservs, and word of mouth. Individuals interested in participating contacted a study investigator (M.A.C. or E.A.B.) via e-mail or phone and left their information to be contacted. Individuals who met all inclusion and exclusion criteria were included in the study. Participants were explicitly informed that there were no right or wrong responses to the interview questions and that they could decline to participate at any time without explanation. Participants received a $10 gift card or cash as compensation.

We designed a semistructured interview guide and field-tested it with two participants (Table 1). Two trained interviewers (M.A.C. and E.A.B.) conducted all interviews, asking participants broad, open-ended questions about diabetes self-care, health care experiences, social networks, career aspirations, community involvement, and messages for newly diagnosed individuals with diabetes.

Sixteen interviews were conducted in person in conference rooms and university offices. Four interviews were conducted via telephone because of the coronavirus 2019 pandemic. Interviews lasted 20–60 minutes. We collected data until saturation was reached, that is, until no new information was generated from the interviews (25).

Interviews were digitally audio-recorded and transcribed verbatim. We performed quality checks of the transcribed files while listening to the recordings to validate the transcriptions. Names and identifiers were removed to protect participant confidentiality.

The multidisciplinary research team, consisting of a health behaviorist/qualitative methodologist (E.A.B.) and an exercise physiologist (M.A.C.), analyzed data using content and thematic analyses (26). Specifically, we performed content analysis by independently marking and categorizing key words, phrases, and texts to identify themes (27). We met to code the data and reviewed, discussed, and resolved all discrepancies via consensus to establish intercoder reliability (27). The Cohen's κ coefficient between the two coders was 0.918, indicating very good agreement (28). No negative or deviant cases were excluded from the analysis (29).

After the transcripts were coded and reviewed, one member of the research team (M.A.C.) entered the coded transcripts in NVivo 12 software (QSR International, Victoria, Australia) to organize the coded data. We selected themes that characterized participants’ positive experiences that occurred multiple times, both within and across transcripts.

To support credibility (validity), we triangulated the investigators with expertise from different disciplines, including health behavior, qualitative methodology, and exercise physiology. Analyst triangulation provided a check on selective perceptions, as well as a means of identifying blind spots in the analysis (30). Further, three participants reviewed the findings to achieve participant corroboration (31). We supported transferability (external validity) via rich descriptions and verbatim quotations from the transcripts. To support dependability (reliability), a researcher not involved with the study conducted an external audit to examine the research process and confirm that the findings were supported by the data (29). Finally, we supported confirmability (objectivity) through tracking the decision-making process with an audit trail, which is a detailed description of the research steps conducted from the development of the project to the presentation of findings (30).

Twenty adults (age 41.5 ± 19.3 years, A1C 7.3 ± 1.7%, diabetes duration 12.9 ± 10.3 years, BMI 29.2 ± 8.6 kg/m², 65.5% prescribed insulin injections, 50.0% female, 100% White [Table 2]) participated in the study. Transcript identifiers are used with quotations indicating participant number, type of diabetes (T1D or T2D for type 1 or type 2 diabetes, respectively), and duration. The following themes emerged from the data analysis.

All participants described positive experiences with their support system and community (100%, n = 20). Many expressed gratitude for people who checked in on them during episodes of hyperglycemia and hypoglycemia. They valued the support and sense of community they received from different sources, including their families, friends, roommates, classmates or coworkers, and the online diabetes community. As one participant described, “The other thing that has been a really positive experience for me is just the way that my family has rallied behind me and really taken ownership of my health. I think that that means a lot, and I’m grateful for that every day.” (ID 117, T2D, 1-year duration) Another participant shared appreciation for roommates’ involvement in care and willingness to learn about diabetes: “Also, I’ve made my friends and my roommates more aware because I genuinely don’t think [they] would know really what diabetes was if I didn’t have it . . . . Educating my friends about it has definitely been a positive outcome.” (ID 101, T1D, 10-year duration) Additionally, some participants spoke about the formation of new friendships because of diabetes: “I’ve had some kind of friendly interactions with other people with diabetes, especially people who wear pumps . . . . I would say that diabetes is a means of connection that allowed us to introduce each other.” (ID 108, T1D, 42-year duration)

Participants also talked about the unique support they received from the online diabetes community. The online diabetes community consists of thousands of people with diabetes sharing information, advice, and encouragement to each other across many different platforms, including social media.

Several of the student and faculty participants referred to the support they received from the university’s diabetes community. Specifically, they mentioned the College Diabetes Network, in addition to the university’s student organization dedicated to supporting students with diabetes on campus. The following quotations exemplified the positive and supportive community at the university.

Finally, multiple participants discussed the importance of mentorship, as well as mentoring others with diabetes. They described the role mentors played in encouraging positive self-care behaviors and everyday life advice.

Some participants, inspired by the positive role models in their life, felt it was necessary to give back to the diabetes community. They described volunteering to speak at local schools, serving as diabetes camp counselors, running local chapters of diabetes organizations, helping as diabetes peer educators, or traveling to other countries to provide diabetes education. For example, one participant spent time in local elementary and high schools mentoring children with diabetes.

Other participants described their experiences educating people about type 1 or type 2 diabetes. For example, this participant spoke at a national coaching conference to educate coaches on how to help athletes with diabetes.

Nearly all of the participants (n = 18) reported positive changes in their health behaviors as a result of living with diabetes. Participants cited improvements in their eating habits and awareness of the carbohydrate content in foods. In their opinion, diabetes made them more aware of how certain foods affect their blood glucose values and overall well-being. As these participants explained:

Some participants shared examples of how small swaps in the foods they ate helped them improve their blood glucose values while still enjoying some of their favorite foods.

Participants attributed engaging in regular physical activity to lowering and maintaining blood glucose values within their target range. Many participants used a combination of healthy diet and exercise, whereas others used exercise alone to manage their diabetes.

For many of the participants, healthier eating and exercise helped them lose weight: “I guess finding the diagnosis gave me what I needed to do something about it. So, for the last year, I’ve dropped 80 lb, and [my] energy level has skyrocketed.” (ID 107, T2D, 2-year duration). These behavioral changes improved their emotional well-being, energy levels, and overall health status: “That is something that I factor in when I try to eat healthy and exercise regularly, I know that it also helps me to have better control, and so I feel better when I have better control.” (ID 108, T1D, 16-year duration). One participant also shared the benefit of healthy diet and exercise on mental health and how it helped to improve depression.

Most participants credited their personal growth and a positive outlook to living with diabetes. All but one participant (n = 19) felt that their diabetes helped them grow as a person. For some, living with diabetes increased their empathy and compassion toward others.

For others, especially participants with type 1 diabetes, diabetes forced them to mature at an earlier age. They had more responsibilities (e.g., monitoring blood glucose levels, taking medications, and treating hypoglycemia) compared with their same-age peers.

Still others believed that diabetes gave them the confidence to take care of themselves now and in the future.

The majority of participants (n = 15) held a positive outlook about their diabetes. Diabetes was not viewed as a hindrance, but rather as an advantage. Diabetes improved their health, self-care behaviors, relationships, work or school, and personal disposition. Participants explained that they could do everything a person without diabetes could do and, in some instances, more.

Moreover, participants recognized that diabetes was a part of their lives, but it did not define who they were or what they could accomplish in life.

Lastly, several participants expressed optimism for their future. They recognized that successful diabetes management helped them feel better and cope with uncertainty.

The majority (n = 14) of the participants shared stories of advocacy about themselves and others with diabetes. For example, one participant discussed policy issues on Capitol Hill in Washington, DC.

Participants took on the role of advocating for key policy issues such as lowering the cost of insulin and providing insurance coverage for preexisting conditions. In addition, participants recognized that education and increasing awareness about diabetes was something within their power: “We talk about different events we could set up for getting diabetes awareness out and doing fun things together [in a student organization].” (ID 106, T1D, 13-year duration).

Beyond advocacy, all 20 participants offered advice for people newly diagnosed with diabetes. One common sentiment was reassurance that a person’s life was not over because of this diagnosis.

If people newly diagnosed felt overwhelmed, participants stressed the basics of diabetes self-management. For example, one person remembered the 15/15 rule when experiencing hypoglycemia.

Others emphasized the habitual nature of diabetes self-management. They explained that diabetes could be managed by forming positive diet, physical activity, and blood glucose monitoring behaviors.

Finally, participants emphasized that diabetes was a manageable condition. With the support of the diabetes community and a positive outlook, they said, people with diabetes had a promising future.

In this qualitative study, we explored positive experiences of people living with type 1 or type 2 diabetes. Our findings highlight the importance of having a positive, supportive network of family, friends, and community. Participants recounted story after story of positive experiences with people exemplifying support, encouragement, advice, and mentorship. In addition, participants believed diabetes improved their health, self-care behaviors, and outlook on life. Furthermore, many participants recognized that diabetes contributed to their personal growth. They attributed increases in empathy, compassion, confidence, and maturity to living with diabetes. Finally, many participants assumed the role of advocate, educating people about diabetes and recommending policy changes for diabetes insurance coverage.

All participants commented on the value of community and peer support from many sources in their lives, including family, friends, classmates, coworkers, and the online diabetes community. Participants’ support systems helped them manage hypoglycemia and hyperglycemia, as well as cope with the many challenges of diabetes. Social support is well documented in the diabetes literature as being associated with better physical and mental health (32,33), and it may have a buffering effect on diabetes distress, self-care, and A1C (34–36).

Additionally, several participants referred to the supportive diabetes community at the university as well as the online community. Both the university and online communities offered peer support, which is defined as support from an individual who has experiential knowledge in the specific behaviors and/or practices of the target population (37). Peer support has been shown to improve diet, physical activity, blood glucose monitoring, and medication-taking in adults with diabetes (38,39).

The effectiveness of peer support is attributed to the reciprocal relationship formed between people sharing similar life experiences (37,40), such as what occurs in student organizations on campus and within the online diabetes community. This community provides advice, tips, and encouragement about all aspects of diabetes management. Thus, communicating the importance of community and peer support to people with diabetes should be emphasized during clinical appointments and DSMES. Similarly, for individuals who experience sabotaging behaviors or miscarried helping from family members (41,42), clinicians and educators should engage family members in discussions about the negative influence of nonsupportive behaviors on diabetes self-care and A1C (43).

The majority of participants held a positive outlook about their diabetes, viewing it as a benefit rather than a detriment. These participants felt optimistic about their future. Optimism has been linked to higher levels of engagement coping, or taking an active role in one’s health, and lower levels of avoidance coping (44). Research in nondiabetes populations has shown that optimism is associated with better mental and physical well-being (44,45). A cross-sectional study by Zhao et al. (46) found that diabetes self-care behaviors, specifically following a healthy diet, getting physical activity, taking medication, self‐monitoring blood glucose, and performing foot care, were associated with optimism. Although more research is needed to determine the cause-effect relationship between diabetes self-care and optimism, these initial findings may motivate people with diabetes to improve their diabetes self-care behaviors to improve their subjective well-being (46).

With these findings in mind, clinicians could encourage cognitive restructuring techniques that challenge negative thoughts and reframe them so they are more positive (47). For example, for people with moderate levels of diabetes-related regimen distress, clinicians could reframe their frustrations with managing self-care by asking them to view their diabetes as a built-in reminder to take care of their health and mental well-being.

The qualitative findings also suggest that a longer diabetes duration and healthy coping may contribute to participants’ positive experiences. The majority of participants had a diabetes duration ≥10 years (mean 12.9 ± 10.3), which provides adequate time to accept the diagnosis and adapt to the self-care plan. Furthermore, the four themes identified in this study reflect healthy coping or “responding to a psychological and physical challenge by recruiting available resources to increase the probability of favorable outcomes in the future,” as defined by panel members from the American Association of Diabetes Care & Education Specialists (48). Participants performed healthy self-care behaviors, joined support networks, and engaged in problem-solving behaviors (i.e., mentoring and advocacy) (49–51). Importantly, many participants revealed that they developed healthy coping over time, with several stating that they struggled to accept their diabetes in the beginning, but later realized it was an opportunity for them to learn and grow. The interplay between duration and coping is a hypothesis that should be tested via longitudinal research examining self-care behaviors, coping, social support, and optimism at different stages in the life course of diabetes (i.e., at the onset of diabetes, during health maintenance, at the onset of complications, and when complications dominate) (52).

Study limitations include homogeneity with regard to several important sociodemographic variables, including race/ethnicity, education, income, employment, insurance coverage, and access to health care services. Although the all-White study sample is representative of the racial and ethnic distribution of southeastern Ohio (95.0% White [53]), it is not reflective of the prevalence of diagnosed diabetes in the United States, which is highest among American Indians/Alaska Natives, people of Hispanic origin, and non-Hispanic Blacks (1). Furthermore, the majority of participants were either students or retired, well-educated, insured, and living above the U.S. federal poverty level. These sociodemographic characteristics are notable considering their association with improved diabetes outcomes, reduced mortality risk, and increased access to health care services (54–58).

Thus, the qualitative findings in this study may not be transferable or generalizable to people not represented in the sample. For example, a person of Hispanic origin with limited English proficiency who was born outside of the United States is more likely to have limited access to primary care, language discordance, a lack of cultural proficiency with health care providers, diabetes complications, and psychosocial difficulties (59–65). For these reasons, such individuals may not view their diabetes as positively as the participants in this study. Thus, future research with a larger, more diverse sample is necessary to explore both positive and negative experiences with diabetes.

Additional limitations to the study include the small sample size and participant self-selection, both of which limit the transferability of the findings. Individuals who volunteered to participate may have had more positive experiences with diabetes compared with people who did not participate.

The purpose of qualitative research is to understand a phenomenon and generate ideas for hypothesis-testing rather than to test hypotheses (66). Consistent with the philosophical underpinnings of qualitative research, purposive sampling identifies participants who are able to richly describe their positive experiences with diabetes. Purposive sampling techniques are useful in learning more about how a group (i.e., people with diabetes) thinks about and experiences a given phenomenon (25).

Such purposeful sampling is different from statistically driven research, which relies on randomness to generalize findings from a small sample to a larger population. The logic of qualitative sampling rests not on generalizability, but on the notion of saturation, that is, the point at which no new information is obtained. Therefore, sample size is not a criterion for evaluating the rigor of the sampling strategy, but rather, for evaluating the adequacy and the comprehensiveness of the findings. A good sample size for individual interviews is between 15 and 20 participants (25).

For the purposes of this qualitative study, our goal was to find participants who had specific positive experiences with type 1 or type 2 diabetes; therefore, participants without positive diabetes experiences were not captured in the data.

Next, self-reported data are vulnerable to social desirability bias. To minimize bias, the researchers informed participants that their responses were confidential and could not be linked back to their personal identity. Furthermore, the investigators emphasized the voluntary nature of participation and explicitly informed participants that their responses had no bearing on their diabetes care.

Research that recognizes and understands the positive experiences of living with diabetes presents a unique opportunity for clinicians and educators to reframe the negative messages commonly shared with people with diabetes. Our participants focused on positive and supportive experiences with their peers and community, improved health behaviors, personal growth, and engagement in diabetes advocacy. Communicating positive experiences with people with diabetes, especially those who have accepted their diabetes and report few barriers (e.g., financial stress or low social support), may promote optimism and, in turn, improve self-care, mental well-being, and physical health. Additional research is needed to examine the associations among social support, coping, optimism, diabetes self-care, and physical and mental health in adults with type 1 or type 2 diabetes.

The authors thank the individuals who participated in the study and shared their positive experiences about living with type 1 or type 2 diabetes.

This research was supported by the Heritage Faculty Endowed Fellowship in Behavioral Diabetes, Osteopathic Heritage Foundation, Ralph S. Licklider, D.O., Research Endowment.

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

Both authors provided substantial contributions to conception and design, acquisition of data and data analysis, and interpretation of data; drafted and revised the article critically for important intellectual content; and gave final approval of the version to be published. Both authors are guarantors of this work and, as such, had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.