Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

Abstract

Objectives

To understand patients’ experiences with diabetes care during the COVID-19 pandemic, with an emphasis on rural, medically underserved, and/or minoritised racial and ethnic groups in the Midwestern USA.

Design

Community-engaged, semi-structured interviews were conducted by medical student researchers trained in qualitative interviewing. Transcripts were prepared and coded in the language in which the interview was conducted (English or Spanish). Thematic analysis was conducted, and data saturation was achieved.

Setting

The study was conducted in communities in Eastern and Western Iowa.

Participants

Adults with diabetes (n=20) who were fluent in conversational English or Spanish were interviewed. One-third of participants were residents of areas designated as federal primary healthcare professional shortage areas and/or medically underserved areas, and more than half were recruited from medical clinics that offer care at no cost.

Results

Themes across both English and Spanish transcripts included: (1) perspectives of diabetes, care providers and care management; (2) challenges and barriers affecting diabetes care; and (3) participant feedback and recommendations. Participants reported major constraints related to provider availability, costs of care, access to nutrition counselling and mental health concerns associated with diabetes care during the pandemic. Participants also reported a lack of shared decision-making regarding some aspects of care, including amputation. Finally, participants recognised systems-level challenges that affected both patients and providers and expressed a preference for proactive collaboration with healthcare teams.

Conclusions

These findings support enhanced engagement of rural, medically underserved and minoritised groups as stakeholders in diabetes care, diabetes research and diabetes provider education.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Community-based recruitment in rural and underserved areas provides perspectives from patients who are frequently under-represented in research, including patients with limited English proficiency.

• Qualitative analytic approaches offer an in-depth evaluation of patient experiences, perspectives and recommendations.

• Involvement of medical student researchers enhances community engagement in medical education.

• Qualitative interviews cannot capture the broad population experience but may identify themes that are transferrable to other settings.

Introduction

The global impact of diabetes has been accelerated by the COVID-19 pandemic, owing to widespread disruptions in healthcare, public health and other social factors that influence health (eg, food security, healthcare access). Research has demonstrated increases in both new-onset diabetes and complications of diabetes during the pandemic, with some research suggesting a marked rise in diabetes-related complications, such as amputation.^1–3 Meanwhile, research has consistently shown that both diabetes and COVID-19 exert disparate impacts among rural communities; minoritised racial, ethnic and linguistic groups; uninsured and underinsured persons; and persons with limited socioeconomic resources,^4–12 suggesting that the dual impacts of diabetes and COVID-19 may be particularly pronounced for these groups.

The convergence of diabetes and COVID-19 has thus formed a ‘syndemic’, leaving health systems and communities with the task of adapting already-strained infrastructures to meet growing needs for diabetes care while attending to other critical tasks—for instance, ensuring safe and equitable care for patients, responding to extensive burnout among health workers, and supporting under-resourced health systems. Such challenges may be particularly pronounced in rural and underserved healthcare systems affected by limited local resources and geographic barriers to care.^{4 10} To equitably address the complex and evolving needs of diabetes care in the pandemic and post-pandemic eras, research must adequately capture the context of care among patients and health systems in communities that are disparately affected by these challenges and yet often under-represented in research.¹³

Prior research has found that social determinants of health, such as financial factors, access to healthcare and psychosocial support have substantial impacts on patients’ experience with and outcomes of diabetes care^14–29 and that these experiences can differ across other, intersecting factors,¹⁹ such as race, ethnicity, language and rurality. However, few of these prior studies were conducted during or after the pandemic’s onset, with most recent studies examining the experiences of patients living outside the USA during that time. There is a scarcity of information about the experiences of patients with diabetes in the Midwestern USA, especially in diverse rural areas and small communities, and no known studies about these experiences during the pandemic or post-pandemic eras. This study aimed to develop important, in-depth context about diabetes care among rural, underserved and minoritised patients living in the Midwestern USA after the pandemic’s onset.

Methods

Study design

A community-engaged, semi-structured interview study was conducted. Participants were at least 18 years old with a self-reported diagnosis of diabetes (any type) and fluent in English or Spanish. Self-reported diagnosis was the standard for inclusion, because the interview focused on participants’ personal experiences with the diagnosis and because requiring clinical documentation might constitute a barrier to participation. Interviews were conducted between July 2022 and January 2023. This allowed participants to share their experiences with diabetes care during the COVID-19 pandemic, and participants with longer-term histories of diabetes could also describe their experiences prior to the pandemic. Interviews were offered in English or Spanish and in-person in a private meeting area at a community site or remotely by Zoom; participants could choose the language and setting in which the interview was conducted. Interviews lasted approximately 1 hour, and all interviews (both in-person and remote) were audio/video-recorded by Zoom. Participants could elect to have another person (eg, family member) present for the interview, and participants were compensated for their time. Participants needed to be able to personally consent to and participate in the interview; no other exclusion criteria were applied.

Patient and public involvement

Participants were recruited from three community organisations or community-based clinics in Eastern and Western Iowa. The study employed a combination of in-person recruitment methods, in which a study team member was present at a community site and available to discuss the study with interested participants, and dissemination of study materials by community partners, who posted or shared recruitment materials at community sites or events. Participating community organisations included: (1) a non-profit, multicultural health coalition that collaborates extensively with local and regional organisations to advance health equity and well-being in rural northwestern Iowa [approximately 240 miles from the University of Iowa (UI) campus]; (2) a mobile clinical organisation that provides health services to underserved populations within a small metropolitan area in Eastern Iowa near the UI campus, as well as in several surrounding rural communities; and (3) a community-based health clinic that provides care to uninsured/underinsured communities in a larger metropolitan area (approximately 25 miles north of the UI campus). All centres serve racially, ethnically and linguistically diverse populations. Participating organisations were consulted in the development of the research plan, including recruitment methods, to ensure these aligned with their organisational needs and workflows. A community advisory board focused on health equity in Iowa also advised the study team about the research plan and the interpretation and application of study findings. Board members were compensated for their time.

Conceptual framework and domains

The interview guide was developed using a conceptual framework that encompassed four domains (left panel of figure 1) and was designed to learn more about participants’ perspectives and experiences intersecting across those domains:

Figure 1.

Conceptual domains covered during interviews, with emergent themes and subthemes pertinent to healthcare delivery and diabetes care equity during and after the COVID-19 pandemic era.

• Diabetes experience: participants were asked about their diabetes experience, including its impacts on daily activities.

• Diabetes care team: participants were asked to describe the members of their care team, including those affiliated with the healthcare system and those from other potential support systems (eg, families, communities).

• Healthcare delivery: participants were invited to describe their diabetes care. Because of substantial prior evidence about disparities in foot care,5 7 8 30 31 participants were given specific prompts to comment on this topic.

• Healthcare communication: participants were asked to elaborate on care communication, including recommendations for improving care communication.

Interviewer characteristics

The interviews were conducted by four medical students from the UI Carver College of Medicine. All interviewers identified as women, and all had completed training in qualitative interviewing. Participants were aware that their interviewers were medical students affiliated with the UI. Participants were interviewed by the same student who conducted the initial recruitment and consent procedures.

Qualitative analysis

Audio-recordings (with video portions removed) were transcribed in the language in which the interviews were conducted using professional transcription services with existing research confidentiality agreements with the university, and transcripts were quality-checked against the original recording by a research team member fluent in the language in which the interview was conducted. All recordings and transcripts were stored on secure university drives accessible only to members of the study team and retained for further review throughout the analysis.

MAXQDA (V.22.1.1) was used to conduct thematic analysis across transcripts as follows: a qualitative codebook with a priori deductive codes was developed using the interview guide and preliminary themes based on literature review,^14–29 and inductive codes were developed during transcript review and analyst discussion. Each transcript was independently coded in its original language by three coders who were fluent in the language in which the interview was conducted. The same codebook was used for both languages, but codes and quotes were included in vivo in the original language. Themes and subthemes were obtained from coded transcripts and compared between Spanish-speaking and English-speaking participants. Themes, subthemes and excerpts presented below represent de-identified content from these interviews.

Results

Participant characteristics

A total of 20 participants were interviewed before saturation was achieved. More than half of the participants identified as women (n=12, 60%, table 1), and nearly one-third completed the interview in Spanish (n=6, 30%). Self-reported racial and ethnic identities included Hispanic/Latino(a), black and/or white. The duration of diabetes ranged from 3 months prior to the interview to several decades. Participant occupations included maintenance/repair workers, transportation workers, artists, educators and office staff. Many participants described extended periods of standing for work, although some also described prolonged periods of sitting during the day. Some participants described walking for work, exercise or leisure.

Table 1.

Demographic and clinical characteristics for semi-structured interview participants (N=20)

	N (%)
Gender
Woman	12 (60%)
Man	8 (40%)
Race/ethnicity
White/non-Hispanic	11 (55%)
Hispanic/Latino/a	7 (35%)
Black/African American/non-Hispanic	2 (10%)
Interview language
English	14 (70%)
Spanish	6 (30%)
Resident of healthcare professional shortage area or medically underserved area	7 (35%)
Patient at one or more no-cost medical clinic(s) in local community	11 (55%)
Diabetes onset
More than 5 years ago	15 (75%)
In the past few years	4 (20%)
In the past few months	1 (5%)
One or more diabetes complications	15 (75%)

Gender, race, ethnicity, diabetes onset and diabetes complications were self-identified by patients. The most common complications affected the feet or eyes; other complications included neuropsychiatric symptoms and diabetic ketoacidosis. All participants were adults at least 18 years of age or older; exact age data was not reported by all patients.

Participants represented five counties in Eastern and Western Iowa. More than one-third of participants were residents of areas designated as federal primary healthcare professional shortage areas and/or medically underserved areas, and more than half were recruited from medical clinics that offer care at no cost (table 1). Most participants (n=15, 75%) had been diagnosed with diabetes more than 5 years prior to the interview. Several participants reported receiving their first diagnosis during the pandemic period, while one participant specifically reported a new onset of diabetes after a COVID-19 episode. Most participants (n=15, 75%) also reported at least one diabetes-related complication. The most frequently reported complications were foot conditions (which the interview guide specifically addressed) and vision changes. Several participants who initially indicated they had no known complications indicated they had experienced foot complications after specific prompts about foot care were offered.

During the initial 2 months of recruitment, four eligible people expressed interest in the study but were unable to participate due to an inability to maintain contact for scheduling an interview (n=3) or inability to use Zoom (n=1). Exact total response rates for study recruitment efforts cannot be calculated, because study materials were shared or posted publicly (see the Patient and public involvement section).

Major themes

Major themes identified across the four conceptual domains included: (1) perspectives of diabetes, care providers and care management; (2) challenges and barriers affecting diabetes care; and (3) participant feedback and recommendations (figure 1, tables 2–4). We define each of these prominent themes in corresponding sections below. All three themes were identified in all 20 transcripts. While other themes were also present (eg, external influences on diabetes care related to family, friends, or other information sources; differential influences of media across generations), we elected to focus on the combined lens of these three themes, since they were most informative for addressing inequities affecting participants with diabetes and, therefore, most congruent with the aim of the study.

Table 2.

Theme 1: perspectives of diabetes, care providers and care management, showing subthemes and excerpts transcribed verbatim from participant interviews in Iowa, USA

Subthemes	Excerpts
Living with a diabetes diagnosis	It’s a constant reminder of what I cannot and should eat. It’s good and bad, and I’ve also been told I shouldn’t look at it as good and bad, but I do. I would be a second generation. My mom and her sister both have it, type 2, and my sisters, and now me, have type two as well, so I’m a second generation. I try and hide the fact that I’m diabetic.
Interactions with care providers	He will take the time to talk to you. You can have the dumbest question ever and he will answer it, no problem. He is always willing to just sit there and talk to you as long as you need. Tengo muchos años de conocerlo, tengo más de 20 años con él. Él conoce bien mis enfermedades, conoce bien cómo soy yo, yo también lo conozco ya muy bien, conozco su familia. Sí, con él yo me siento muy cómodo para eso. [I have many years of knowing him, I have more than 20 years with him. He knows my conditions well, he knows how I am, and I also know him very well, I know his family. Yes, I feel very comfortable with him for that.] Déjeme decirle que yo no estoy muy convencido de eso. Yo siento de que acá como que no se esfuerzan en ver qué es lo que realmente uno tiene, sino que ellos cortan como por lo más fácil para ellos. No sé. Eso es lo que yo pienso. [Let me tell you that I am not convinced of that. I feel that over here they do not make an effort to see exactly what one has, instead they cut (amputate) because it is easier for them. I don’t know. That is what I think.]
Care management	He says, ‘Well, you’re going to have to get on this insulin’. Like I say, I didn’t want to do the insulin. I didn’t want to stick needles in me all of the time and do that. I did not want it. That wasn’t my thing. Still, it’s not, but I have to do it and inject a little bit of that medicine in there. It’s supposed to help keep me alive. I don’t know what difference it makes really, but it does somehow. I’ve thought about doing and taking some natural stuff, but then my doctor said, ‘no’. He don’t want to change to do no vitamins or herbs because they don’t work. Cause I wanted to try that, but he said, ‘no’. He said, ‘You just do what you’re doing’.

Table 3.

Theme 2: challenges and barriers affecting diabetes care, showing subthemes and excerpts transcribed verbatim from participant interviews in Iowa, USA

Subthemes	Excerpts
Insurance and medical costs	Do I have more treatments, or do I sell my house? That’s where I have trouble with diabetes. People need insulin to live. Sí me espanta cuando miro el precio de la insulina, Dios Santo. No me alcanza lo que me da el Seguro Social. [I get scared when I look at the cost of insulin, good god. What I get from Social Security is not enough.]
Provider access	Well, I wish that he would have more time, only because we are a small community, and we are limited with doctors and they’re busy. Distance. Like I said my closest clinic is 85 miles. I’m not criticizing them by any means, but I wish for them they had more ability to serve the patients with more time. The only way you can do that is when you have more doctors. Here we have a hard time getting the doctors to come and stay so we’re just so thankful that we have the ones we have
Daily care activities	Well, currently it’s poking my fingers and pricking my belly. That’s probably the toughest part. And not being able to get it under control, I don’t know what to do about that. I would say finding out what foods are and aren’t okay. Because there’s some that you can—one person can eat and they’ll be like, ‘Oh, yeah, nothing happens with me. Okay.’ It’s kind of like a guessing game on what you can and cannot have. A mí, poquita comida, y yo quedo con hambre, sí. Uno a veces no se llena con lo que uno come, pero como dicen, no es a llenarlo, sino que a sostenerse. [For me, a little bit of food, and I would stay hungry, yes. Sometimes one does not get full with what they eat, but as they say, you don’t want to get full, just enough to be satisfied.]
Complications	I’ve had a lot of problems with foot ulcers, so I limit my walking, which is my main exercise. I don’t complain about it, but it does limit a little bit. De repente uno se puede caer y se va a lastimar. Eso es lo que es más complicado. [Suddenly one can fall and have an injury. That is the most complicated part.]
Mental health	No, al principio sí me costó, como dice mi esposa, me costó aceptar que tenía diabetes y me puse bien—No lo podía creer. Me afectó mucho. [No, at the beginning it was hard, like my wife said, it was hard to accept that I had diabetes and I got better—I could not believe it. It affected me a lot.] It depresses me. I glance at it and think, it’s not 500. I don’t have—[laughs] It is depressing to look at that number. [regarding blood sugar checks] There is no remedy for diabetes. There is no cure. This is what saddens me about it. There’s no cure for it. It’s one of them things. You don’t never lose it. You just got to get out and deal with it. I’m trying to do the best I can with it, but it’s not what I wanted to do. Yo dije, ‘Ya me voy a morir’, porque me dijeron que era diabética. [I told him, ‘I am going to die’ because they told me I was diabetic.]
Language	Esa vez es cuando yo recuerdo que sí yo les pedí intérprete porque eran muchos estudios los que me hicieron. […] No me quería perder absolutamente nada. Era nuevo para mí. [There was that time where I do remember asking them for an interpreter because they performed a lot of tests […] I absolutely did not want to miss anything. It was new for me.] A mí me parece que de repente teniendo un traductor, uno dice las cosas, él se las traduce para la otra persona, pero él se las traduce a su forma de entender. […] Ya haber alguien de por medio se pierde cierta -no sé si es la palabra correcta- pero calidad o entendimiento. [It seems to me that all of a sudden having a translator, one says something, and then he translates them to the other person, but he translates them in their own way. […] By having someone in the middle you are losing—I don’t know if this is the correct word—but quality or understanding.] En cambio, alguien que no hable inglés tienen que llamar a alguien para que vaya a traducir. Yo pienso que ellos lo ven así. En vez de que esta persona esté acá con nosotros podría estar en otro lado haciendo otro trabajo. Yo siento que es un poco así como de-- No encuentro la palabra. Discriminación. [On the other hand, having someone who does not speak English requires that you get someone to translate. I think they look at it that way. Instead of that person having to be with us they could be somewhere else doing some other job. I feel like it’s a little bit like—I can’t find the word. Discrimination.]

Table 4.

Theme 3: participant feedback and recommendations, showing subthemes and excerpts transcribed verbatim from participant interviews in Iowa, USA

Subthemes	Excerpts
Feedback and recommendations to providers	Don’t make it seem like it’s a life sentence. I think sometimes it’s if you talk about it, communicate about it, go through it instead of just handing to me a pamphlet or something, I think that not everybody’s going to get as much value out of that. Que se enfocara más en el paciente, en sus preocupaciones. Porque recuérdese de que el paciente no tiene los conocimientos que tiene el doctor. Las dudas son mucho más grandes. A veces las dudas que uno como paciente tiene tal vez no tienen nada que ver con su problema, pero uno no sabe. [That they focus more on their patient, on their worries. Because remember that the patients do not have the knowledge that doctors have. Their doubts are much bigger. Sometimes the doubts that a patient has have nothing to do with their problem, but you never know.]
Feedback and recommendations to other patients	The healthcare community cannot read your mind. All they can do is read your blood supplies that you give, your urine output. If you don’t tell them that, ‘Hey, I got neuropathy’ or, ‘Hey, can I eat this?’ It’s a two-way street. I think that a support system even if you’re not receiving actual healthcare from someone is really beneficial. It just makes managing the condition so much less overwhelming. Yo creo que debería ser importante saber cómo afecta tener una persona con diabetes en la familia, porque debido al dolor diabético, no se pueden hacer muchas actividades. [I think it would be important to highlight how having a family member with diabetes affects the family, because of the pain, they cannot do many activities.]
Wishlist	I go see the dentist every year, twice a year. Why can’t a nutritionist be part of that regimen to help avoid illnesses? How can we educate ourselves at a younger age, especially if we know it’s going to be that the diabetes that comes on and later in your life? How do we educate ourselves at a young age to start making those habits, healthy habits? That would have been helpful for me, and I think that would be helpful for others to have that knowledge ahead. Pero creo que debe haber más patient advocates, que le explique,‘Va a haber esta feria de salud y va a hacer esto’, pero luego ponen muchos panfletos y nadie dice nada. [But I think we should have more patient advocates that explain, ‘There will be this health fair and this will be done’, but then they just have pamphlets and no one says anything [or explains further].]

Importantly, because participants were invited to comment broadly on their experiences with diabetes, themes and subthemes were not limited to a single, current care provider or clinical environment. Thus, the results reflect both the contemporary context of participants’ experiences and the historical context of these experiences, including previous diagnoses or treatment regimens, prior providers or clinical environments, and pre-pandemic care.

Perspectives of diabetes, care providers and care management

This theme included any opinions, attitudes and perspectives that a participant expressed about their diabetes care experience. Subthemes included living with a diabetes diagnosis, interacting with care providers and managing diabetes care (table 2).

Living with a diabetes diagnosis

Many participants attributed their diabetes to unhealthy eating habits and a strong family history of diabetes. Participants reported feeling deprived of food options; feeling as if they had to hide their diabetes diagnosis; and feeling as if diabetes was often portrayed as a life-changing condition without emphasising that it could be managed or reversed. Among participants interviewed in Spanish, patients often described having had a diabetes complication (eg, delayed wound healing, foot neuropathy) present at the time of diagnosis.

Interactions with care providers

Participants expressed appreciation for their primary care providers (PCPs), pharmacists and dieticians—often specifically attributing their success with diabetes management to dieticians. Participants noted an appreciation for their PCPs when they worked with patients to create goals, spent time educating patients about complications and communicated with other team members to help manage their diabetes. In return, patients noted a willingness to be honest with their PCPs regarding medication and lifestyle adherence because they did not feel that their provider was judging them. Keywords and phrases that were used to positively describe providers included: ‘compassionate’, ‘encouraging’, ‘supportive’, ‘honest’, ‘good rapport’ and ‘good bedside manner’.

In interviews conducted in English, some participants noted a distrust of providers, indicating that they felt providers were more concerned with prescribing medications than addressing underlying causes of diabetes and that the medications prescribed were not necessary for diabetes management. Participants specifically expressed concerns that their providers lacked training and knowledge about nutrition. Participants also expressed concerns that providers did not have enough time for patients in clinic, were unable to provide continuity of care to patients, and were leaving their community. Some participants reported feeling as if they were not included in decision-making about their diabetes care or that their PCP simply expected them to become diabetic and did not otherwise provide preventive counselling to avert this. Overall, keywords and phrases that were used to negatively describe diabetes care providers included: ‘rude’, ‘discouraging’, ‘has given up’ and ‘unsupportive’. Remarkably, some participants observed that negative experiences with providers were sometimes associated with external pressures applied to providers (eg, severe time constraints, loss of other providers in the area) and even expressed appreciation for providers working under these constraints.

Across the interviews conducted in Spanish, interactions with diabetes care providers were generally described as more negative experiences. Participants noted feeling distrust of the medical community, particularly of physicians who performed amputations. Multiple participants described seeking a second opinion from another physician due to distrust. Participants described not feeling that their complications were taken seriously at the time of a clinic visit and feeling disrespected when they expressed concerns about foot care. For patients who had undergone amputations, participants reported feeling disrespected and specifically reported that alternative treatments were not explained and/or provided. Participants generally noted feeling limited in the amount of time they had with their PCP, feeling rushed and interrupted during clinic visits, and feeling as if their care providers were distracted with computers or from completing other important tasks such as placing orders for care of other comorbidities. Keywords and descriptions used to negatively describe interactions with providers included ‘falta de respeto’ or ‘lack of respect’, ‘limitado el tiempo’ or ‘limited time’ and ‘no me presta la atención como un medico debería’ or ‘does not pay attention in the way that a physician should’.

Notably, across the Spanish interviews, positive views towards care providers were expressed in instances when a participant’s PCP was the same PCP that had empathically treated their family members, that they had known for a long time, or that had effectively communicated with them, either directly or via an interpreter. Participants also noted feeling as if they could trust their physicians if they were well-versed in medical advancements or offered alternative medication options. Keywords to positively describe physicians included ‘amable’ or ‘kind’, ‘atenta/o’ or ‘attentive’ and ‘cariñosa’ or ‘affectionate’.

Care management

Across the English interviews, participants reported feeling as if diabetes treatments did not advance much over time, often referencing taking medications that their parents had previously taken. Participants also noted feeling they had no choice but to take medications indefinitely, telling their providers that they were unconvinced the medications were working, having a desire for natural remedies (such as vitamins, supplements and herbs), or having negative feelings towards the pharmaceutical industry. Some participants felt that it was hard to check their blood sugar multiple times a day, due to complications (such as callouses) and challenges getting blood, while others who had advanced technology (such as continuous glucose monitors) reported no difficulties. Keywords participants used to describe their diabetes experience included: ‘roller coaster’, ‘a lot of work’, ‘a full-time job’ and ‘overwhelming’, although other participants reported that managing their diabetes was ‘easy’ and ‘manageable’.

Across the Spanish interviews, participants reported feeling that their diabetes could never be appropriately managed and that their daily lives felt more challenging because of diabetes (eg, fearing injury or needing to use special considerations with food). Participants felt scared about taking medications due to fear of harming their organs and expressed a desire for natural remedies. Some participants felt that the most effective way of managing diabetes was through diet and portion control, and some expressed that they felt they were doing a good job at managing their diabetes. Key phrases participants used to describe their diabetes experience included: ‘no es fácil’ or ‘it is not easy’; ‘fácil, cuando uno hace consciencia’ or ‘easy when one becomes aware’; and ‘cuesta mucho’ or ‘costs a lot’.

Challenges and barriers affecting diabetes care

This theme included any challenges or barriers to diabetes care. Subthemes included insurance and medical costs, provider access, daily care activities, diabetes complications, mental health, and language (table 3).

Insurance and medical costs

Across English-speaking participants, limited insurance coverage and the high cost of care were identified as major challenges. Some participants made employment decisions based on insurance, and others reported losing or changing their insurance. Some participants relied on secondary insurance or adhered to a strict budget to afford out-of-pocket medication costs that were not covered by insurance. For those who had experienced losing their insurance, the out-of-pocket costs of insulin exceeded their monthly income or were equivalent to their rent. To cope with these financial challenges, participants described rationing their insulin, using expired insulin, and relying on free medical clinics for their insulin.

Among Spanish-speaking participants, high copays with insurance, reliance on free medical clinics to afford insulin and a need for financial assistance to visit a PCP were noted. Participants also reported that eating healthy meals and cooking meals from scratch were expensive. Some participants delayed retirement due to fear of losing their insurance coverage, while some participants reported that social security income or Medicare coverage were not enough to cover the cost of insulin. One participant reported working two jobs after retirement to help cover the insulin costs for their partner.

Provider access

Participants noted long wait times, difficulty scheduling an initial appointment, long commutes to the nearest provider, busy clinic schedules and limited time with providers. For those in rural communities, finding a PCP in their community and a pharmacy to rely on for supplies was a challenge. Participants also described disruptions of their care due to either a provider leaving their community or having to switch providers.

Daily care activities (blood sugar testing, medications and nutrition)

Across both English and Spanish interviews, blood sugar control and finger pricking were identified as major challenges to managing diabetes. Challenges with finger pricking included callouses, numbness, soreness, fear of needles, fear of infections, accidents with blood and difficulty obtaining blood. Some participants reported having to take time off work due to prohibitive symptoms during hyperglycaemic or hypoglycaemic episodes. For many participants, taking care of their diabetes was particularly difficult during the night when hypoglycaemic events were more common.

Concerns about nutrition were also common across English and Spanish interviews. Among newly diagnosed participants, knowing which foods impacted their blood sugar levels was challenging. Participants also noted difficulties with portion control, understanding food labels and learning new ways to cook to accommodate their diabetes needs. For many participants, their occupations made it difficult to manage their diabetes, due to difficulty monitoring blood sugar levels during the workday and a lack of healthy food alternatives at their workplace.

Across English interviews, forgetting to take medications as indicated, keeping track of medication schedules and managing medications with the demands of work duties were also identified as challenges. Likewise, across Spanish interviews, participants noted challenges in remembering to take medications, feeling limited in the amount of insulin prescribed by their provider, and often running out of insulin before their next clinic visit (particularly among participants that would travel outside of the USA to visit their families).

Diabetes complications

Across the English interviews, participants noted how complications such as neuropathy, excessive fatigue, foot ulcers and hypoglycaemic events made it harder for them to care for their diabetes and engage in activities such as walking or running. Across the Spanish interviews, hypoglycaemic events were also cited as a challenge to diabetes management. Participants also reported being less active and more fearful of injury due to diabetes complications.

Mental health

Across the English interviews, participants reported that the COVID-19 pandemic led to isolation and fear about managing diabetes on their own. Some participants reported more stress during the pandemic, which led to hyperglycaemic episodes and other challenges with blood sugar control. Anxiety about insurance coverage and medication costs (see above) was common. Across the Spanish interviews, participants reported that the COVID-19 pandemic also led to delays and/or interruptions in their diabetes care.

Across Spanish and English interviewees, the most challenging part of diabetes was accepting their diabetes diagnosis, with participants often reporting an initial period of denial. Many participants reported feeling hopeless, fearing death and becoming depressed after being diagnosed with diabetes. These participants reported needing counselling after their diabetes diagnosis. Several interviewees also disclosed a history of other mental health conditions, such as alcohol use disorder.

Language

Communication and language barriers were identified as significant challenges in diabetes management. This was most notable among the Spanish interviews. Many participants reported relying on family members to provide interpretation during clinic visits or to translate medication labels. Participants noted that, if they spoke English, they would have preferred going on their own to their visits.

For those who were offered medical interpreters in the clinic, participants felt that interpreters lacked training and were too informal. Participants indicated that the quality of the visit was usually worse with an interpreter since interpreters did not appropriately communicate their wants and needs. Other participants felt their provider and clinic staff were bothered by the fact that an interpreter was needed during the clinic visit and felt discriminated against because they did not speak English.

Participants indicated that they would only request interpreters when they felt that the visit was more complex. Otherwise, participants felt they could ‘get by’ with their current understanding of English. Challenges related to this language barrier often caused participants to drive long distances to find a provider that spoke fluent Spanish and shared the same ethnicity as them.

Participant feedback and recommendations

The final major theme included feedback and recommendations provided by participants to providers or other patients, as well as a list of things participants wished were different regarding their diabetes care (table 4).

Feedback and recommendations to providers

Participants affirmed that trust and comfort with a provider were key to successful diabetes management. Participants did not want to feel that information was being withheld from them or that they were judged for having diabetes. Across all responses, participants wanted reassurance from their providers that diabetes was a chronic, manageable condition and wanted to participate in proactive, shared decision-making about diabetes management. Participants expressed a desire for more education about blood sugar levels, medications, complications (eg, foot care), nutrition, exercise, and the role of genetics and family history in diabetes. Participants were interested in getting information directly from their provider rather than from a pamphlet or an online resource. This was consistent across English and Spanish interviewees. Participants also preferred care models in which their PCPs worked with other diabetes care team members (most notably dieticians).

Feedback and recommendations to other patients

Across the English interviews, participants encouraged others with diabetes not to be afraid to ask questions of their providers and to make providers aware of their current diabetes complications. Participants commented on the importance of patients serving as their own advocates, learning about diabetes and its complications using outside resources (eg, online resources, classes, videos) when possible, and creating a routine to help manage their diabetes (eg, keeping a journal to record medications and food). Across the Spanish interviews, participants also recommended listening to providers’ expertise, embracing mental health counselling as part of the diabetes care plan, and managing their diet as part of their diabetes care plan (eg, keeping a journal with recipes and resources).

Wishlist

Across English interviews, participants wished they would have intervened earlier to prevent a diabetes diagnosis (eg, developing healthy eating habits as a child, incorporating exercise into their daily routine). Similarly, participants wished that someone would have spoken to them about how to make changes prior to their diabetes diagnosis, including being given more information by providers about diabetes prevention when they had pre-diabetes.

Many participants wished they were part of a diabetes support group (eg, Facebook groups or in-person groups) to share resources, stories, ideas, experiences, and recipes. Participants wished insulin was cheaper, that their insurance had better coverage for medications, that their diabetes management would require fewer medications, and that there was a cure for diabetes.

Across the Spanish interviews, participants wished there was more information on how diabetes affects the family (eg, financial impacts, limitations on various family activities). Participants wished that their providers would have discussed other potential diabetes complications with them, as well. Participants wished for a patient advocate and for financial help to cover the cost of medications.

Conclusions

This community-engaged study offers extensive individual accounts of diabetes care during the pandemic among 20 rural residents; persons from minoritised racial, ethnic, and linguistic groups; and persons with limited healthcare and/or socioeconomic resources. These perspectives provide several key insights into the complex challenge of providing safe and equitable care amid the syndemic of diabetes and COVID-19.

First, participants’ perspectives about diabetes and healthcare resonated with existing clinical evidence. Most participants expressed an evidence-based understanding of diabetes, and many advocated for more access to evidence-based care (eg, nutrition counselling, mental healthcare). Participants also incisively highlighted the state of the science of diabetes, noting that available treatment modalities (eg, insulin) were largely stable over time while the cost of treatment was not and acknowledging that advances towards a cure for diabetes had been slow. Importantly, participants also expressed concerns about disparate care (eg, limited PCPs, lack of interpreters, inequitable recommendations about amputation) that align with other literature.5 7 8 30 31 Here, cultural and linguistic concordance between interviewers and participants may have been important for yielding such context.^{10 13}

Second, participants conveyed insightful impressions of health systems and offered perspectives about how to improve these systems. Participants astutely recognised opportunities for advancing interdisciplinary care, augmenting shared decision-making in diabetes care and in healthcare systems, and recognising the role of patient advocacy. Notably, participants expressed considerable insight into the time constraints and competing demands affecting providers, especially providers working in rural and medically underserved areas, acknowledged the impact of systems-level factors on providers as well as patients, and even expressed empathy for providers. This perspective is infrequently reflected in the literature on either health equity or burnout. Whereas such literature often centres the onus of solving health system challenges on providers as workers, participants in this study tended to frame providers as people in or users of the same system, suggesting a premise of reciprocal empathy, even when they were frustrated with their care.

Finally, although specific interactions between participants and interviewers were outside the scope of the three themes highlighted in tables 2–4, these interactions provide noteworthy context for the results. Participants expressed appreciation that their perspectives were of interest to the academic research team. Some participants specifically identified characteristics they shared with medical student interviewers (eg, gender, ethnicity) and offered encouragement to interviewers about their medical education. This may reflect participants’ interest not only in sharing their perspectives of their own care, but in directly informing medical education. Indeed, this may also have contributed to the shared sense of humanity and empathy noted above. This is itself a relevant finding. While efforts to improve diabetes care have increasingly emphasised the inclusion of diverse groups of patients as stakeholders in clinical care and research,^{10 13} engagement of patients as stakeholders in medical education (ie, not merely as recipients of care by physicians in-training) has lagged. The rapport of participants and interviewers in this study suggests a role for broadening engagement of patient and community stakeholders in medical education.

This study is limited by the relatively small number of participants needed to ensure in-depth interviewing, and it provides only a limited snapshot of diabetes care during the pandemic and post-pandemic eras in the Midwestern USA. As with other rigorous qualitative research, the findings of this study may be transferrable to other patients and communities but are not intended to be statistically generalised to broader populations.^{32 33} Although the study did not include equal numbers of participants across all intersecting demographic variables, such as gender or language, divergent themes were deliberately assessed across language categories (ie, different experiences among English-speaking and Spanish-speaking participants), with both convergent and divergent experiences described in detail in the Results section. These divergent findings re-demonstrate disparities in care for patients with limited English proficiency.

In conclusion, this study affirms broader clinical evidence about the impact of social determinants of health on diabetes care and potential sources of disparities in care (eg, financial constraints, underinsurance, lack of access to qualified medical interpreters). However, the findings also offer a compelling perspective about how to improve health outcomes and advance health equity in the years ahead. Future clinical improvements may include increased referrals for mental healthcare or diabetes support groups for patients grappling with diabetes-related stress, depression or anxiety; expanded opportunities for nutrition counselling that is practical, language-concordant and adaptable to diverse cuisines and to readily available, affordable foods; and involvement of more patients and community members in healthcare and health education as advocates, patient educators and patient care navigators.¹⁰ The growing and urgent needs to ensure equitable care, address health worker burnout and reinforce strained health infrastructures may not be separate challenges so much as shared experiences to be addressed with mutual empathy, collaborative ingenuity, and enhanced engagement of patient stakeholders in diabetes research, practice and education.

Data availability statement

Data are available upon reasonable request. Data are available upon reasonable request to the corresponding author and as permitted by the study’s Institutional Review Board approval and informed consent procedures.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

This study involves human participants and the study protocol and informed consent procedures were approved by the University of Iowa Institutional Review Board (#202105279). Each participant was provided with all required elements of informed consent, and verbal consent was obtained before the interview was started.