key: cord-0845051-qzvnn323 authors: Carrier, Molly A.; Beverly, Elizabeth A. title: Focus on the Positive: A Qualitative Study of Positive Experiences Living With Type 1 or Type 2 Diabetes date: 2021-04-03 journal: Clin Diabetes DOI: 10.2337/cd20-0082 sha: 67cf7e33ffbb62aed876a375de6f98e3026c8052 doc_id: 845051 cord_uid: qzvnn323 The purpose of this study was to identify positive experiences associated with diabetes from the perspective of adults diagnosed with type 1 or type 2 diabetes. We conducted in-depth face-to-face and telephone interviews with adults with diabetes. 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 about diabetes may help clinicians and educators reframe the negative messages commonly shared with people with diabetes. 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 fieldtested 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 k 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 VOLUME 39, NUMBER 2, SPRING 2021 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 6 19.3 years, A1C 7.3 6 1.7%, diabetes duration 12.9 6 10.3 years, BMI 29.2 6 8.6 kg/m 2 , 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 5 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. "I find the whole diabetes community like a family. Everyone is willing to help each other out . . . . Something a little small, but whenever I like have something or even if it's not diabetes-related, half of my [online] comments are people from the diabetes community saying, 'Oh, this is great!' 'Yeah, we love you.' 'Miss you,' or something like that. So, it's a very tight-knit group." (ID 100, T1D, 9-year duration) "I've also really found some positive reinforcement and some great support from social media groups, both Instagram and on Facebook. So, that's been really good for me . . . . There's someone in our group on Facebook that checks in with everybody's blood sugar every day, and you kind of see where everyone's at." (ID 117, T2D, 1-year duration) Several of the student and faculty participants referred to the support they received from the university's diabetes . 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. "Mental well-being is tied to a lot of things, and a good diet is part of it. Most participants credited their personal growth and a positive outlook to living with diabetes. All but one participant (n 5 19) felt that their diabetes helped them grow as a person. For some, living with diabetes increased their empathy and compassion toward others. "Growing up with this disease, I found out that I really, really, really care for people. I like to make sure that people are always in the best physical state of health and mind and psyche." (ID 103, T1D, 12-year duration) "Having empathy for others, too. I know that it's not just other people who have diabetes, but other people who may have other chronic illnesses or something going on in their life." (ID 106, T1D, 13-year duration) 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. "Yeah, the positive one was just growing up. It taught you self-discipline. I was diagnosed going into sixth grade. Throughout middle school and high school, I just found myself way more mature than all my friends. They were still goofing off and stuff, which is fine because you're young. I felt like I had a huge responsibility with my health, and that made me grown up way, way quicker than others." (ID 103, T1D, 12-year duration) "I was older when I was diagnosed. I was 13. I feel like that made me grow up in a sense. I had to be more responsible than other teenagers. I felt like it was the end of the world when it happened, but I feel like I have a more positive outlook on things now. Everyone can have it worse. It's not a competition. In that way, it made me grow up, too." (ID 104, T1D, 9-year duration) Still others believed that diabetes gave them the confidence to take care of themselves now and in the future. "So, I think I just feel better or have more confidence that I'm doing something that's going to benefit [me] when I'm 70 and 80 . . . . It's just a kind of a relaxed confidence that, oh, I'm doing the right thing, and it's the best thing I can do for myself, and that will pay dividends down the road." (ID 115, T2D, 8-year duration) "I think I will move forward with the good work that I'm doing, and I'll be able to be off insulin and take oral medication, which is exciting to me. So, I feel like there's hope. I feel hopeful. I don't feel really discouraged by diabetes. I feel like it's been more positive for me than negative." (ID 117, T2D, 1-year duration) The majority of participants (n 5 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. 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. "This is such a little thing, but it goes such a long way, and it's one of the fundamentals of when you're going low. Others emphasized the habitual nature of diabetes selfmanagement. They explained that diabetes could be managed by forming positive diet, physical activity, and blood glucose monitoring behaviors. "I would tell them to not be afraid. I would tell them that this is an opportunity, especially with type 2 diabetes. I think that the changes that we make in our life directly contribute to our success in type 2 diabetes. Making some of those changes that we didn't make before . . . just controls it. Take your life [in] your hands." (ID 117, T2D, 1-year duration) "I think with diabetes, it's a habitual disease. It's about getting into good habits." (ID 108, T1D, 16-year duration) 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. "There's more to come, and there's a great community out there willing to support you." (ID 100, T1D, 9-year duration) "I feel like you have all the control in the world . . . . The good news is that you've got pretty much total control in managing this thing, and it's not that hard." (ID 115, T2D, 8-year duration) 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) (35) (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), VOLUME 39, NUMBER 2, SPRING 2021 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 wellbeing (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 causeeffect 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 6 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) (55) (56) (57) (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) (60) (61) (62) (63) (64) (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 wellbeing, 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. Centers for Disease Control and Prevention. National Diabetes Statistics Report-2020: Estimates of Diabetes and Its Burden in the United States The path to understanding diabetes starts here The effect of controlling the ABC's of diabetes on cardiovascular disease in a community-based endocrinology practice ABC goal achievement predicts microvascular but not macrovascular complications over 6-years in adults with type 1 diabetes: the Coronary Artery Calcification in Type 1 Diabetes study Comparison of primary versus secondary prevention of cardiovascular disease in patients with type 2 diabetes: focus on achievement of ABC goals Bringing smoking cessation to diabetes clinics in Indonesia Multicenter randomized trial of a comprehensive prepared meal program in type 2 diabetes Association between glycosylated hemoglobin and intentional weight loss in overweight and obese patients with type 2 diabetes mellitus: a retrospective cohort study Combined aerobic and resistance exercise improves glycemic control and fitness in type 2 diabetes The association of self-monitoring of blood glucose use with medication Education for secondary prevention of foot ulcers in people with diabetes: a randomised controlled trial Clinic attendance and glycemic control: study of contrasting groups of patients with IDDM Factors associated with clinic non-attendance in adults with type 1 diabetes mellitus Reducing the risks of diabetes complications through diabetes selfmanagement education and support Facilitating behavior change and well-being to improve health outcomes: Standards of Medical Care in Diabetes-2020 The use of language in diabetes care and education Building therapeutic relationships: choosing words that put people first The effectiveness of theory-and model-based lifestyle interventions on HbA1c among patients with type 2 diabetes: a systematic review and meta-analysis Psycho-educational interventions for children and young people with type 1 diabetes in the UK: how effective are they? A systematic review and meta-analysis New models of self-management education for minority ethnic groups: pilot randomized trial of a story-sharing intervention Group-based storytelling in disease selfmanagement among people with diabetes Storytelling to support disease self-management by adults with type 2 diabetes The Application of Qualitative Approaches Qualitative Research Methods for Health Professionals Weighted kappa: nominal scale agreement with provision for scaled disagreement or partial credit Naturalistic Inquiry Qualitative Data Analysis: An Expanded Sourcebook Burns RJ, Deschênes SS, Schmitz N. Associations between depressive symptoms and social support in adults with diabetes: comparing directionality hypotheses with a longitudinal cohort Social network characteristics are associated with type 2 diabetes complications: the Maastricht Study Diabetes burden and diabetes distress: the buffering effect of social support Diabetes distress and glycemic control: the buffering effect of autonomy support from important family members and friends The buffering effect of social support on diabetes distress and depressive symptoms in adults with type 1 and type 2 diabetes Peer support within a health care context: a concept analysis Peer coaching: an intervention for individuals struggling with diabetes A randomized trial of an intervention to improve self-care behaviors of African-American women with type 2 diabetes: impact on physical activity The effects of peer counseling on smoking cessation and reduction Miscarried helping" in families of children and adolescents with chronic diseases Good intentions gone awry: assessing parental "miscarried helping" in diabetes Family involvement is helpful and harmful to patients' self-care and glycemic control The glass is not half empty: optimism, pessimism, and health among older adults Association between diabetes-related self-care activities and positive health: a cross-sectional study A randomized controlled trial of cognitive behavioral therapy for adherence and depression (CBT-AD) in patients with uncontrolled type 2 diabetes Healthy coping: issues and implications in diabetes education and care American Association of Diabetes Educators. An effective model of diabetes care and education: revising the AADE7 Self-Care Behaviors National standards for diabetes self-management education and support Association of Diabetes Care & Education Specialists. Healthy coping Living with diabetes: the role of diabetes education Association between socioeconomic status and mortality, cardiovascular disease, and cancer in patients with type 2 diabetes Glycemic control and type 1 diabetes: the differential impact of model of care and income Insurance coverage and diabetes quality indicators among patients with diabetes in the US general population Socioeconomic status and glycemic control in type 2 diabetes: race by gender differences Socioeconomic status and mortality: contribution of health care access and psychological distress among U.S. adults with diagnosed diabetes New approaches to reduce barriers to care for Latinos with poorly controlled type 2 diabetes Acculturation, access to care, and use of preventive services by Hispanics: findings from HHANES 1982-84 Association between language proficiency and the quality of primary care among a national sample of insured Latinos Racial and ethnic differences in diabetes care and health care use and costs Diabetic foot syndrome: evaluating the prevalence and incidence of foot pathology in Mexican Americans and non-Hispanic Whites from a diabetes disease management cohort Risks for end-stage renal disease, cardiovascular events, and death in Hispanic versus non-Hispanic White adults with chronic kidney disease Clinical depressive symptoms and diabetes in a binational border population How to Use Qualitative Methods in Evaluation 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.