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Rulla Alsaedi , Kimberly McKeirnan; Literature Review of Type 2 Diabetes Management and Health Literacy. Diabetes Spectr 1 November 2021; 34 (4): 399–406. https://doi.org/10.2337/ds21-0014

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The purpose of this literature review was to identify educational approaches addressing low health literacy for people with type 2 diabetes. Low health literacy can lead to poor management of diabetes, low engagement with health care providers, increased hospitalization rates, and higher health care costs. These challenges can be even more profound among minority populations and non-English speakers in the United States.

A literature search and standard data extraction were performed using PubMed, Medline, and EMBASE databases. A total of 1,914 articles were identified, of which 1,858 were excluded based on the inclusion criteria, and 46 were excluded because of a lack of relevance to both diabetes management and health literacy. The remaining 10 articles were reviewed in detail.

Patients, including ethnic minorities and non-English speakers, who are engaged in diabetes education and health literacy improvement initiatives and ongoing follow-up showed significant improvement in A1C, medication adherence, medication knowledge, and treatment satisfaction. Clinicians considering implementing new interventions to address diabetes care for patients with low health literacy can use culturally tailored approaches, consider ways to create materials for different learning styles and in different languages, engage community health workers and pharmacists to help with patient education, use patient-centered medication labels, and engage instructors who share cultural and linguistic similarities with patients to provide educational sessions.

This literature review identified a variety of interventions that had a positive impact on provider-patient communication, medication adherence, and glycemic control by promoting diabetes self-management through educational efforts to address low health literacy.

Diabetes is the seventh leading cause of death in the United States, and 30.3 million Americans, or 9.4% of the U.S. population, are living with diabetes ( 1 , 2 ). For successful management of a complicated condition such as diabetes, health literacy may play an important role. Low health literacy is a well-documented barrier to diabetes management and can lead to poor management of medical conditions, low engagement with health care providers (HCPs), increased hospitalizations, and, consequently, higher health care costs ( 3 – 5 ).

The Healthy People 2010 report ( 6 ) defined health literacy as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Diabetes health literacy also encompasses a wide range of skills, including basic knowledge of the disease state, self-efficacy, glycemic control, and self-care behaviors, which are all important components of diabetes management ( 3 – 5 , 7 ). According to the Institute of Medicine’s Committee on Health Literacy, patients with poor health literacy are twice as likely to have poor glycemic control and were found to be twice as likely to be hospitalized as those with adequate health literacy ( 8 ). Associations between health literacy and health outcomes have been reported in many studies, the first of which was conducted in 1995 in two public hospitals and found that many patients had inadequate health literacy and could not perform the basic reading tasks necessary to understand their treatments and diagnoses ( 9 ).

Evaluation of health literacy is vital to the management and understanding of diabetes. Several tools for assessing health literacy have been evaluated, and the choice of which to use depends on the length of the patient encounter and the desired depth of the assessment. One widely used literacy assessment tool, the Test of Functional Health Literacy in Adults (TOFHLA), consists of 36 comprehension questions and four numeric calculations ( 10 ). Additional tools that assess patients’ reading ability include the Rapid Estimate of Adult Literacy in Medicine (REALM) and the Literacy Assessment for Diabetes. Tests that assess diabetes numeracy skills include the Diabetes Numeracy Test, the Newest Vital Sign (NVS), and the Single-Item Literacy Screener (SILS) ( 11 ).

Rates of both diabetes and low health literacy are higher in populations from low socioeconomic backgrounds ( 5 , 7 , 12 ). People living in disadvantaged communities face many barriers when seeking health care, including inconsistent housing, lack of transportation, financial difficulties, differing cultural beliefs about health care, and mistrust of the medical professions ( 13 , 14 ). People with high rates of medical mistrust tend to be less engaged in their care and to have poor communication with HCPs, which is another factor HCPs need to address when working with their patients with diabetes ( 15 ).

The cost of medical care for people with diabetes was $327 billion in 2017, a 26% increase since 2012 ( 1 , 16 ). Many of these medical expenditures are related to hospitalization and inpatient care, which accounts for 30% of total medical costs for people with diabetes ( 16 ).

People with diabetes also may neglect self-management tasks for various reasons, including low health literacy, lack of diabetes knowledge, and mistrust between patients and HCPs ( 7 , 15 ).

These challenges can be even more pronounced in vulnerable populations because of language barriers and patient-provider mistrust ( 17 – 19 ). Rates of diabetes are higher among racial and ethnic minority groups; 15.1% of American Indians and Alaskan Natives, 12.7% of Non-Hispanic Blacks, 12.1% of Hispanics, and 8% of Asian Americans have diagnosed diabetes, compared with 7.4% of non-Hispanic Whites ( 1 ). Additionally, patient-provider relationship deficits can be attributed to challenges with communication, including HCPs’ lack of attention to speaking slowly and clearly and checking for patients’ understanding when providing education or gathering information from people who speak English as a second language ( 15 ). White et al. ( 15 ) demonstrated that patients with higher provider mistrust felt that their provider’s communication style was less interpersonal and did not feel welcome as part of the decision-making process.

To the authors’ knowledge, there is no current literature review evaluating interventions focused on health literacy and diabetes management. There is a pressing need for such a comprehensive review to provide a framework for future intervention design. The objective of this literature review was to gather and summarize studies of health literacy–based diabetes management interventions and their effects on overall diabetes management. Medication adherence and glycemic control were considered secondary outcomes.

Search Strategy

A literature review was conducted using the PubMed, Medline, and EMBASE databases. Search criteria included articles published between 2015 and 2020 to identify the most recent studies on this topic. The search included the phrases “diabetes” and “health literacy” to specifically focus on health literacy and diabetes management interventions and was limited to original research conducted in humans and published in English within the defined 5-year period. Search results were exported to Microsoft Excel for evaluation.

Study Selection

Initial screening of the articles’ abstracts was conducted using the selection criteria to determine which articles to include or exclude ( Figure 1 ). The initial search results were reviewed for the following inclusion criteria: original research (clinical trials, cohort studies, and cross-sectional studies) conducted in human subjects with type 2 diabetes in the United States, and published in English between 2015 and 2020. Articles were considered to be relevant if diabetes was included as a medical condition in the study and an intervention was made to assess or improve health literacy. Studies involving type 1 diabetes or gestational diabetes and articles that were viewpoints, population surveys, commentaries, case reports, reviews, or reports of interventions conducted outside of the United States were excluded from further review. The criteria requiring articles to be from the past 5 years and from the United States were used because of the unique and quickly evolving nature of the U.S. health care system. Articles published more than 5 years ago or from other health care systems may have contributed information that was not applicable to or no longer relevant for HCPs in the United States. Articles were screened and reviewed independently by both authors. Disagreements were resolved through discussion to create the final list of articles for inclusion.

PRISMA diagram of the article selection process.

Data Extraction

A standard data extraction was performed for each included article to obtain information including author names, year of publication, journal, study design, type of intervention, primary outcome, tools used to assess health literacy or type 2 diabetes knowledge, and effects of intervention on overall diabetes management, glycemic control, and medication adherence.

A total of 1,914 articles were collected from a search of the PubMed, MEDLINE, and EMBASE databases, of which 1,858 were excluded based on the inclusion and exclusion criteria. Of the 56 articles that met criteria for abstract review, 46 were excluded because of a lack of relevance to both diabetes management and health literacy. The remaining 10 studies identified various diabetes management interventions, including diabetes education tools such as electronic medication instructions and text message–based interventions, technology-based education videos, enhanced prescription labels, learner-based education materials, and culturally tailored interventions ( 15 , 20 – 28 ). Figure 1 shows the PRISMA diagram of the article selection process, and Table 1 summarizes the findings of the article reviews ( 15 , 20 – 28 ).

Findings of the Article Reviews (15,20–28)

SAHLSA, Short Assessment of Health Literacy for Spanish Adults.

Medical mistrust and poor communication are challenging variables in diabetes education. White et al. ( 15 ) examined the association between communication quality and medical mistrust in patients with type 2 diabetes. HCPs at five health department clinics received training in effective health communication and use of the PRIDE (Partnership to Improve Diabetes Education) toolkit in both English and Spanish, whereas control sites were only exposed to National Diabetes Education Program materials without training in effective communication. The study evaluated participant communication using several tools, including the Communication Assessment Tool (CAT), Interpersonal Processes of Care (IPC-18), and the Short Test of Functional Health Literacy in Adults (s-TOFHLA). The authors found that higher levels of mistrust were associated with lower CAT and IPC-18 scores.

Patients with type 2 diabetes are also likely to benefit from personalized education delivery tools such as patient-centered labeling (PCL) of prescription drugs, learning style–based education materials, and tailored text messages ( 24 , 25 , 27 ). Wolf et al. ( 27 ) investigated the use of PCL in patients with type 2 diabetes and found that patients with low health literacy who take medication two or more times per day have higher rates of proper medication use when using PCL (85.9 vs. 77.4%, P = 0.03). The objective of the PCL intervention was to make medication instructions and other information on the labels easier to read to improve medication use and adherence rates. The labels incorporated best-practice strategies introduced by the Institute of Medicine for the Universal Medication Schedule. These strategies prioritize medication information, use of larger font sizes, and increased white space. Of note, the benefits of PCL were largely seen with English speakers. Spanish speakers did not have substantial improvement in medication use or adherence, which could be attributed to language barriers ( 27 ).

Nelson et al. ( 25 ) analyzed patients’ engagement with an automated text message approach to supporting diabetes self-care activities in a 12-month randomized controlled trial (RCT) called REACH (Rapid Education/Encouragement and Communications for Health) ( 25 ). Messages were tailored based on patients’ medication adherence, the Information-Motivation-Behavioral Skills model of health behavior change, and self-care behaviors such as diet, exercise, and self-monitoring of blood glucose. Patients in this trial were native English speakers, so further research to evaluate the impact of the text message intervention in patients with limited English language skills is still needed. However, participants in the intervention group reported higher engagement with the text messages over the 12-month period ( 25 ).

Patients who receive educational materials based on their learning style also show significant improvement in their diabetes knowledge and health literacy. Koonce et al. ( 24 ) developed and evaluated educational materials based on patients’ learning style to improve health literacy in both English and Spanish languages. The materials were made available in multiple formats to target four different learning styles, including materials for visual learners, read/write learners, auditory learners, and kinesthetic learners. Spanish-language versions were also available. Researchers were primarily interested in measuring patients’ health literacy and knowledge of diabetes. The intervention group received materials in their preferred learning style and language, whereas the control group received standard of care education materials. The intervention group showed significant improvement in diabetes knowledge and health literacy, as indicated by Diabetes Knowledge Test (DKT) scores. More participants in the intervention group reported looking up information about their condition during week 2 of the intervention and showed an overall improvement in understanding symptoms of nerve damage and types of food used to treat hypoglycemic events. However, the study had limited enrollment of Spanish speakers, making the applicability of the results to Spanish-speaking patients highly variable.

Additionally, findings by Hofer et al. ( 22 ) suggest that patients with high A1C levels may benefit from interventions led by community health workers (CHWs) to bridge gaps in health literacy and equip patients with the tools to make health decisions. In this study, Hispanic and African American patients with low health literacy and diabetes not controlled by oral therapy benefited from education sessions led by CHWs. The CHWs led culturally tailored support groups to compare the effects of educational materials provided in an electronic format (via iDecide) and printed format on medication adherence and self-efficacy. The study found increased adherence with both formats, and women, specifically, had a significant increase in medication adherence and self-efficacy. One of the important aspects of this study was that the CHWs shared cultural and linguistic characteristics with the patients and HCPs, leading to increased trust and satisfaction with the information presented ( 22 ).

Kim et al. ( 23 ) found that Korean-American participants benefited greatly from group education sessions that provided integrated counseling led by a team of nurses and CHW educators. The intervention also had a health literacy component that focused on enhancing skills such as reading food package labels, understanding medical terminology, and accessing health care services. This intervention led to a significant reduction of 1–1.3% in A1C levels in the intervention group. The intervention established the value of collaboration between CHW educators and nurses to improve health information delivery and disease management.

A collaboration between CHW educators and pharmacists was also shown to reinforce diabetes knowledge and improve health literacy. Sharp et al. ( 26 ) conducted a cross-over study in four primary care ambulatory clinics that provided care for low-income patients. The study found that patients with low health literacy had more visits with pharmacists and CHWs than those with high health literacy. The CHWs provided individualized support to reinforce diabetes self-management education and referrals to resources such as food, shelter, and translation services. The translation services in this study were especially important for building trust with non-English speakers and helping patients understand their therapy. Similar to other studies, the CHWs shared cultural and linguistic characteristics with their populations, which helped to overcome communication-related and cultural barriers ( 23 , 26 ).

The use of electronic tools or educational videos yielded inconclusive results with regard to medication adherence. Graumlich et al. ( 20 ) implemented a new medication planning tool called Medtable within an electronic medical record system in several outpatient clinics serving patients with type 2 diabetes. The tool was designed to organize medication review and patient education. Providers can use this tool to search for medication instructions and actionable language that are appropriate for each patient’s health literacy level. The authors found no changes in medication knowledge or adherence, but the intervention group reported higher satisfaction. On the other hand, Yeung et al. ( 28 ) showed that pharmacist-led online education videos accessed using QR codes affixed to the patients’ medication bottles and health literacy flashcards increased patients’ medication adherence in an academic medical hospital.

Goessl et al. ( 21 ) found that patients with low health literacy had significantly higher retention of information when receiving evidence-based diabetes education through a DVD recording than through an in-person group class. This 18-month RCT randomized participants to either the DVD or in-person group education and assessed their information retention through a teach-back strategy. The curriculum consisted of diabetes prevention topics such as physical exercise, food portions, and food choices. Participants in the DVD group had significantly higher retention of information than those in the control (in-person) group. The authors suggested this may have been because participants in the DVD group have multiple opportunities to review the education material.

Management of type 2 diabetes remains a challenge for HCPs and patients, in part because of the challenges discussed in this review, including communication barriers between patients and HCPs and knowledge deficits about medications and disease states ( 29 ). HCPs can have a positive impact on the health outcomes of their patients with diabetes by improving patients’ disease state and medication knowledge.

One of the common themes identified in this literature review was the prevalence of culturally tailored diabetes education interventions. This is an important strategy that could improve diabetes outcomes and provide an alternative approach to diabetes self-management education when working with patients from culturally diverse backgrounds. HCPs might benefit from using culturally tailored educational approaches to improve communication with patients and overcome the medical mistrust many patients feel. Although such mistrust was not directly correlated with diabetes management, it was noted that patients who feel mistrustful tend to have poor communication with HCPs ( 20 ). Additionally, Latino/Hispanic patients who have language barriers tend to have poor glycemic control ( 19 ). Having CHWs work with HCPs might mitigate some patient-provider communication barriers. As noted earlier, CHWs who share cultural and linguistic characteristics with their patient populations have ongoing interactions and more frequent one-on-one encounters ( 12 ).

Medication adherence and glycemic control are important components of diabetes self-management, and we noted that the integration of CHWs into the diabetes health care team and the use of simplified medication label interventions were both successful in improving medication adherence ( 23 , 24 ). The use of culturally tailored education sessions and the integration of pharmacists and CHWs into the management of diabetes appear to be successful in reducing A1C levels ( 12 , 26 ). Electronic education tools and educational videos alone did not have an impact on medication knowledge or information retention in patients with low health literacy, but a combination of education tools and individualized sessions has the potential to improve diabetes medication knowledge and overall self-management ( 20 , 22 , 30 ).

There were several limitations to our literature review. We restricted our search criteria to articles published in English and studies conducted within the United States to ensure that the results would be relevant to U.S. HCPs. However, these limitations may have excluded important work on this topic. Additional research expanding this search beyond the United States and including articles published in other languages may demonstrate different outcomes. Additionally, this literature review did not focus on A1C as the primary outcome, although A1C is an important indicator of diabetes self-management. A1C was chosen as the method of evaluating the impact of health literacy interventions in patients with diabetes, but other considerations such as medication adherence, impact on comorbid conditions, and quality of life are also important factors.

The results of this work show that implementing health literacy interventions to help patients manage type 2 diabetes can have beneficial results. However, such interventions can have significant time and monetary costs. The potential financial and time costs of diabetes education interventions were not evaluated in this review and should be taken into account when designing interventions. The American Diabetes Association estimated the cost of medical care for people with diabetes to be $327 billion in 2017, with the majority of the expenditure related to hospitalizations and nursing home facilities ( 16 ). Another substantial cost of diabetes that can be difficult to measure is treatment for comorbid conditions and complications such as cardiovascular and renal diseases.

Interventions designed to address low health literacy and provide education about type 2 diabetes could be a valuable asset in preventing complications and reducing medical expenditures. Results of this work show that clinicians who are considering implementing new interventions may benefit from the following strategies: using culturally tailored approaches, creating materials for different learning styles and in patients’ languages, engaging CHWs and pharmacists to help with patient education, using PCLs for medications, and engaging education session instructors who share patients’ cultural and linguistic characteristics.

Diabetes self-management is crucial to improving health outcomes and reducing medical costs. This literature review identified interventions that had a positive impact on provider-patient communication, medication adherence, and glycemic control by promoting diabetes self-management through educational efforts to address low health literacy. Clinicians seeking to implement diabetes care and education interventions for patients with low health literacy may want to consider drawing on the strategies described in this article. Providing culturally sensitive education that is tailored to patients’ individual learning styles, spoken language, and individual needs can improve patient outcomes and build patients’ trust.

Duality of Interest

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

Author Contributions

Both authors conceptualized the literature review, developed the methodology, analyzed the data, and wrote, reviewed, and edited the manuscript. R.A. collected the data. K.M. supervised the review. K.M. is the guarantor of this work and, as such, has full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Prior Presentation

Portions of this research were presented at the Washington State University College of Pharmacy and Pharmaceutical Sciences Honors Research Day in April 2019.

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45 of the Best Diabetes Dissertation Topics

Published by Owen Ingram at January 2nd, 2023 , Revised On August 16, 2023

The prevalence of diabetes among the world’s population has been increasing steadily over the last few decades, thanks to the growing consumption of fast food and an increasingly comfortable lifestyle. With the field of diabetes evolving rapidly, it is essential to base your dissertation on a trending diabetes dissertation topic that fills a gap in research. 

Finding a perfect research topic is one of the most challenging aspects of dissertation writing in any discipline . Several resources are available to students on the internet to help them conduct research and brainstorm to develop their topic selection, but this can take a significant amount of time. So, we decided to provide a list of well-researched, unique and intriguing diabetes research topics and ideas to help you get started. 

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List of Diabetes Dissertation Topics

• Why do people recently diagnosed with diabetes have such difficulty accepting reality and controlling their health?
• What are the reactions of children who have recently been diagnosed with diabetes? What can be done to improve their grasp of how to treat the disease?
• In long-term research, people getting intensive therapy for the condition had a worse quality of life. What role should health professionals have in mitigating this effect?
• Why do so many individuals experience severe depression the months after their diagnosis despite displaying no other signs of deteriorating health?
• Discuss some of the advantages of a low-carbohydrate, high-fat diet for people with diabetes
• Discuss the notion of diabetes in paediatrics and why it is necessary to do this research regularly.
• Explain the current threat and difficulty of childhood obesity and diabetes, stressing some areas where parents are failing in their position as guardians to avoid the situation
• Explain some of the difficulties that persons with diabetes have, particularly when obtaining the necessary information and medical treatment
• Explain some of the most frequent problems that people with diabetes face, as well as how they affect the prevalence of the disease. Put out steps that can be implemented to help the problem.
• Discuss the diabetes problem among Asian American teens
• Even though it is a worldwide disease, particular ethnic groups are more likely to be diagnosed as a function of nutrition and culture. What can be done to improve their health literacy?
• Explain how self-management may be beneficial in coping with diabetes, particularly for people unable to get prompt treatment for their illness
• Discuss the possibility of better management for those with diabetes who are hospitalized
• What current therapies have had the most influence on reducing the number of short-term problems in patients’ bodies?
• How have various types of steroids altered the way the body responds in people with hypoglycemia more frequently than usual?
• What effects do type 1, and type 2 diabetes have on the kidneys? How do the most widely used monitoring approaches influence this?
• Is it true that people from specific ethnic groups are more likely to acquire heart disease or eye illness due to their diabetes diagnosis?
• How has the new a1c test helped to reduce the detrimental consequences of diabetes on the body by detecting the condition early?
• Explain the difficulty of uncontrolled diabetes and how it can eventually harm the kidneys and the heart
• Discuss how the diabetic genetic strain may be handed down from generation to generation
• What difficulties do diabetic people have while attempting to check their glucose levels and keep a balanced food plan?
• How have some individuals with type 1 or type 2 diabetes managed to live better lives than others with the disease?
• Is it true that eating too much sugar causes diabetes, cavities, acne, hyperactivity, and weight gain?
• What effect does insulin treatment have on type 2 diabetes?
• How does diabetes contribute to depression?
• What impact does snap participation have on diabetes rates?
• Why has the number of persons who perform blood glucose self-tests decreased? Could other variables, such as social or environmental, have contributed to this decrease?
• Why do patients in the United States struggle to obtain the treatment they require to monitor and maintain appropriate glucose levels? Is this due to increased healthcare costs?
• Nutrition is critical to a healthy lifestyle, yet many diabetic patients are unaware of what they should consume. Discuss
• Why have injuries and diabetes been designated as national health priorities?
• What factors contribute to the growing prevalence of type ii diabetes in adolescents?
• Does socioeconomic status influence the prevalence of diabetes?
• Alzheimer’s disease and type 2 diabetes: a critical assessment of the shared pathological traits
• What are the effects and consequences of diabetes on peripheral blood vessels?
• What is the link between genetic predisposition, obesity, and type 2 diabetes development?
• Diabetes modifies the activation and repression of pro- and anti-inflammatory signalling pathways in the vascular system.
• Understanding autoimmune diabetes through the tri-molecular complex prism
• Does economic status influence the regional variation of diabetes caused by malnutrition?
• What evidence is there for using traditional Chinese medicine and natural products to treat depression in people who also have diabetes?
• Why was the qualitative method used to evaluate diabetes programs?
• Investigate the most common symptoms of undiagnosed diabetes
• How can artificial intelligence help diabetes patients?
• What effect does the palaeolithic diet have on type 2 diabetes?
• What are the most common diabetes causes and treatments?
• What causes diabetes mellitus, and how does it affect the United Kingdom?

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‘Learning to shape life’ – a qualitative study on the challenges posed by a diagnosis of diabetes mellitus type 2

Astrid fink.

Martin-Luther-University Halle-Wittenberg, Medical Faculty, Institute of Medical Sociology, Magdeburger Str. 8, 06112 Halle (Saale), Germany

Eva-Maria Fach

Sara lena schröder, associated data.

The datasets generated and/or analysed during the current study are not publicly available because we have ruled out data transfer to the participants.

Diabetes mellitus type 2 is a central challenge for health policy and healthcare in all advanced countries. For the affected persons, living with a diagnosis of type 2 diabetes is difficult because the disease and its treatment have a considerable effect on daily life. The aim of this study was to investigate the challenges associated with a diagnosis of type 2 diabetes for those affected and the range, depth and complexities of the subjective perspectives of the patients under the conditions of the German healthcare system.

A cross-sectional qualitative study was conducted using a sample of 19 adult patients with type 2 diabetes mellitus. Patients were recruited successively from two specialized diabetological practices, three general practitioner’s offices, and two hospitals. The patients were interviewed once in person using semi-structured interviews. All interviews were recorded, transcribed, and analysed based on grounded theory.

Persons affected by diabetes mellitus type 2 seem to feel responsible for managing their disease. Two strategies of action could be identified: 1) patients strictly followed the recommendations of the physicians, or 2) they showed that they are knowledgably managing their diabetes mellitus type 2. The action strategy to address the disease seemed to be influenced by patients’ confidence in themselves, the effectiveness of the interventions, or the patients’ locus of control. Minor differences in educational status could be discovered, and patients who were less educated tended to follow the recommendations of the physicians very strictly and seemed to place more emphasis on being compliant, which goes hand in hand with a life with prohibitions and restrictions. In contrast, being perceived as competent patients who make their own rules to manage the disease in daily life appeared to be more important for people with higher education levels.

Patient education and self-management programmes for diabetes mellitus type 2 should take different types of learners into account. Giving less-educated patients specific recommendations for successful diabetes self-management is particularly important.

Trial registration

German clinical trial register (DRKS-ID: DRKS00007847 ).

Electronic supplementary material

The online version of this article (10.1186/s12939-019-0924-3) contains supplementary material, which is available to authorized users.

Diabetes mellitus type 2 (T2DM) is a central challenge for health policy and healthcare in Germany and other advanced countries [ 1 , 2 ]. This fact is first attributable to the frequency of the disease: the Diabetes Atlas of the International Diabetes Federation (IDF) estimated that the global prevalence of diabetes mellitus among adults aged 20–79 years was approximately 8.8% (CI 95 7.2–11.3%) in 2017 with a rate of 6.8% in European countries and 11.0% in North American and Caribbean regions. Of these diabetes cases, 90% were classified as type 2 diabetes [ 3 ]. In Germany, the prevalence of T2DM could be estimated at 7 to 8.6% of adults on the basis of population-related surveys and billing data from individual health insurance funds. The results varied depending on the age group studied and the database used [ 2 , 4 ]. Second, the special significance of the disease is also due to the increased mortality from the disease. The proportion of people who died from diabetes in 2017 before the age of 60 was 32.9% in European countries and 45% in Northern America or Caribbean regions. The age and sex standardized mortality rate ratio among persons aged 45 years or older was 1.82 (CI 95% 1.45 to 2.28) for T2DM in Germany [ 5 ]. In addition to the challenges posed to the healthcare system, living with a diagnosis of T2DM is difficult. T2DM is a chronic condition that has a considerable effect on daily life. On the one hand, affected persons should implement the lifestyle modifications and if necessary, drug treatment, that the physician has recommended to them. On the other hand, people who have been diagnosed with T2DM have to take personal responsibility for managing the illness, and they have to find a responsible way to live with it [ 6 , 7 ]. To live with the disease and avoid complications, which can be life threatening, people with T2DM need to learn self-management techniques and complex care activities [ 6 – 9 ]. In addition to these challenges, it is sometimes aggravating that patients receive misinformation from friends, relatives, and the media/internet on how to best manage diabetes [ 10 ].

Cross-disease self-management can be understood as a patient’s ability to address the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes associated with a chronic disease [ 11 , 12 ]. Self-management is considered to be of central importance in the treatment of T2DM [ 13 , 14 ]. Diabetes self-management encompasses all activities where patients are involved in caring for their disease, promoting health, expanding their physical, social and emotional resources and preventing the long- and short-term effects of diabetes [ 14 ]. Specifically, this management includes healthy eating and physical activity, sustainable weight loss, foot care, and knowledge of glycaemic control. Some of these techniques depend on the form of individual therapy and the body mass index of the affected person [ 6 , 7 , 15 ]. These tasks show that a diagnosis of T2DM suddenly confronts a patient’s life with additional challenges of routines and everyday actions. Patients’ perspectives on the self-management of T2DM were presented in a meta-syntheses by Gomersall et al. 2011 [ 13 ]. The authors concluded that the development of diabetes-related experiences are dependent on social and political conditions and that diabetes care should pay attention to the internal world of persons with T2DM.

Structured patient education and self-management programmes are available for learning self-management. National and international expert associations recommend making structured diabetes education accessible to all persons with T2DM [ 16 – 18 ]. The training courses are aiming at patient empowerment, i.e., those affected learn to actively influence the course of diabetes by acquiring knowledge about health-promoting behaviours such as healthy nutrition, exercise and cardiovascular risk factors. This knowledge should lead to the successful implementation of diabetes-specific therapy requirements in everyday life [ 6 , 17 , 19 , 20 ]. In addition, people with T2DM gain knowledge about secondary illnesses as well as the ability to recognize signs of complications (e.g., self-examination of the feet for early detection of diabetic foot syndrome). Structured and quality-assured patient education training is an internationally recognized measure with proven positive effects on parameters relevant to therapy such as blood sugar, glycated haemoglobin A1c (HbA1c) [ 21 – 24 ], blood pressure and body weight [ 6 , 9 , 25 ], as well as indicators of good quality of care, e.g., the frequency of screening for diabetic retinopathy [ 22 , 25 ]. Several systematic reviews examining the effectiveness of self-management programmes found robust data demonstrating the effectiveness of these programmes evidenced by a statistically significant decrease in HbA1c levels [ 26 ]; HbA1c, fasting blood glucose, body weight, waist circumference, triglyceride levels and diabetes knowledge [ 27 ]; and HbA1c, diabetes knowledge, and self-care practices with short-term to long-term follow-ups [ 28 ].

Evidence indicates that persons with low socioeconomic status (a composite measure of an individual’s economic and sociological standing in relation to others) and T2DM have more barriers to diabetes self-management that are less pronounced [ 29 , 30 ] and that they participate less frequently in diabetes education programmes [ 31 , 32 ]. Furthermore, low individual socioeconomic status or residential area deprivation is often associated with worse process indicators and worse intermediate outcomes [ 33 , 34 ]. The prevalence of T2DM in population groups with low socioeconomic status is also higher [ 35 – 37 ], and thus, these groups are often doubly disadvantaged (higher prevalence of T2DM and worse course of disease). These socioeconomic differences in treatment and the demand for considering diabetes care within the context of every patient [ 13 ] lead to the conclusion that diabetes-related experiences should be considered to be dependent on social conditions as well as on the specific features of the healthcare system [ 13 ]. Diabetes care should, as already noted, pay attention to the “inner” world of persons affected by T2DM.

To the best of our knowledge, no qualitative study in Germany has yet investigated the challenges associated with the diagnosis of T2DM for those affected and the range, depth and complexities of the subjective perspectives. To address these issues, a qualitative health care study was conducted from the patients’ point of view. Through analysing the patients’ experiences with their chronic disease and with treatment, this study aimed first, to explore and understand the challenges associated with a diagnosis of T2DM and how people adjust to the diagnosis and incorporate it into their lives under the conditions of the German healthcare system and second, to assess whether there were differences in patient experiences according to the different educational backgrounds of the participants, as the state of research suggests.

Material and methods

Study design.

This exploratory qualitative study was based on the elements of grounded theory [ 38 ]. This research was considered suitable for capturing the subjective experiences of persons with T2DM within their social and cultural contexts and reviewing these experiences to arrive at an understanding of individuals’ perceptions of the disease and their adjustment to the diagnosis. The study was conducted as a single-centre, cross-sectional qualitative study in Halle/Saale, Saxony-Anhalt, Germany, a high-risk area for T2DM morbidity [ 39 ].

Research team

Interviews were conducted by three female members of the team (AB, AF, EMF), who were researchers at the Institute of Medical Sociology. AB is a young medical anthropologist, and AF and EMF are experienced medical sociologists (AF: PhD in rehabilitation medicine and EMF: MA in sociology). All of them had undergone training in qualitative methods. Prior to her scientific career, the principal investigator (AF) worked as a dietician in healthcare, and in this capacity, she was responsible for educating patients with T2DM about nutrition. MW, a male student assistant, supported the project throughout its course.

Participant recruiting

Participants were recruited from ambulatory medical practices (three general practitioners, one of them in rural area and two urban specialists in diabetology) and two hospitals (one urban and one rural). The inclusion criteria for participating in the study were 1) being 18 years and over; 2) having a diagnosis of T2DM; and 3) being able to speak and understand German. Two sampling methods were combined to use the strengths of the respective methods [ 40 ]. In keeping with the principles of theoretical sampling, the participants were recruited successively during alternating phases of data collection, development of theoretical categories and additional data collection [ 38 ]. Depending on the state of category and theory development, a decision was made by the team about which person should be interviewed next. Socioeconomic inequalities in prevalence, secondary diseases and mortality of T2DM are known to negatively affect socially disadvantaged individuals [ 35 , 41 – 45 ], and persons with low socioeconomic status participate less frequently in studies [ 46 ]. Therefore, a qualitative sampling plan was additionally used to ensure that men and women from different socioeconomic groups would be represented. We decided to use education as a proxy for socioeconomic status. Participants were assigned to a group with high or low education based on their years of formal education and occupational training qualification. The classification was based on German epidemiological standards for the measurement and quantification of sociodemographic characteristics in epidemiological studies [ 47 ]. During the study, health care professionals identified eligible participants and gave brief information about the study. The patients who agreed to be contacted by the study team received a telephone call from a researcher who answered their questions and scheduled the interviews. Nineteen adult patients with T2DM participated in the study between July 2015 and June 2016, at which point theoretical saturation was reached. Because the first screening was held in doctors’ offices or hospitals, no statements can be made about patients refusing to participate.

Participants

Nineteen patients were interviewed: 7 women and 12 men. They ranged in age from 47 to 87 years, and all were of German nationality. Their characteristics are summarized in Table  1 .

Patients’ characteristics ( n  = 19)

Data collection

The interviews were conducted face-to-face in a private, quiet room in the hospital, an office at the university or the participant’s home. They lasted 25–80 min and were audiotaped with the interviewees’ permission. No repeat interviews were conducted. Prior to the interview, participants were given an information sheet and a verbal explanation of the study and were encouraged to ask any questions. Then, the participants provided written informed consent. Interviews were semi-structured around a topic guide and included narrative-generating questions on the history and treatment of diabetes and its impact on daily life.

The topic guide was tested with four persons with T2DM. The purpose of the pre-test was to examine whether narratives were created and to elicit the participants’ reactions to the questions. The topic guide was revised after the pre-test and throughout the study, following the iterative process of data collection and analysis of grounded theory. To gather the participants’ sociodemographic data, questions about age, sex, nationality, marital status, education, professional qualifications, and occupation were raised subsequent to the interview. A situation report was prepared for each interview, and first memos were recorded after the conversation.

Data analysis

A transcription agency transcribed the recordings verbatim. Pseudonyms were used to protect personal data. We used MAXQDA software for data management and analyses. We followed grounded theory analysis [ 48 ]. Open coding of the data began with the first two authors. The data were broken down into discrete parts, examined and compared for similarities and differences, and then clarified in discussions of prominent themes that had emerged. The transcripts were analysed by being coded into categories, which were then reduced by pattern coding (grouping categories into conceptual sets). The axial coding procedure was structured by Strauss and Corbin’s coding paradigm. Aspects of this paradigm are the causal conditions that lead to the phenomenon, the attributes of the context of the phenomenon, additional intervening conditions, action strategies to handle the phenomenon and the consequences of actions. This procedure led to carefully elaborated categories from which the theory is formulated in the course of selective coding. All authors (AF, MW, and AMF) iteratively conducted open and axial coding, and the principal investigator (AF) conducted selective coding by using abductive reasoning. The development and final application were discussed by the research team and in additional interpretation workshops. The phenomena were derived from the data and not determined in advance. Internal quality and credibility were attained by having three researchers independently code the data and by obtaining consensus through analysis and in discussions at additional interpretation workshops. A professional translation agency translated the passages from the interviews cited in this paper.

Ethics and patients’ consent

Full ethical approval for the study was granted by the Ethical Review Committee of the Medical Faculty at Martin-Luther-University, Halle-Wittenberg. Participation was voluntary, and participants were informed that they could withdraw from the study at any point without giving reasons. They were also informed that the data would be pseudonymized and that the results might be published in a scientific journal. All participants gave written informed consent prior to the interview.

Through exploring the patients’ experiences with their chronic disease, T2DM, and with treatment, we found that the focus was on how to cope with the disease in everyday life and how to adapt the life. In this result section, we first describe the path of “learning to shape life” (our developed model, Fig.  1 ) and then show small differences in adaptations in people with different education levels.

Categories and their connections of “learning to shape life”

Diabetes mellitus type 2 affected both professional and private life. A central challenge for persons who received a diagnosis of T2DM seemed to be the management of the disease in daily living. In addition to adjustments in professional and private life, people needed to learn a great deal about self-care activities related to disease management. These included adapting one’s lifestyle in terms of physical activity and nutrition as well as the use of medication. The patient managed the adaptation well if he or she had sufficient knowledge about the disease, secondary diseases and measures to influence the disease. The professional health care system remained on the theoretical level in dealing with the disease, whereas the affected person was responsible for the implementation. This process of learning to shape life was the central phenomenon drawn from the narratives of the participants interviewed.

The main reason for “learning to shape life” seemed to be “accepting the challenge of the disease”. People with T2DM seemed to feel responsible for managing their disease. This feeling may have been influenced by the contextual aspects “conditions and types of shaping” . The action strategy of patients with T2DM could be influenced by the core phenomenon and by their own “confidence in the action” (intervening condition). This confidence seemed to be determined by the patients’ confidence in themselves, the effectiveness of interventions, or the patients’ locus of control. The two action strategies can be described as follows: 1) patients very strictly followed the recommendations of the physicians, or 2) they showed that they were knowledgably managing their T2DM. The consequence of the action strategies and learning to shape life could result in “acceptance and life with the disease” . As a chronic disease that is not always stable, T2DM requires adjustments. For this reason, the model of the path from the consequence “acceptance and life with the disease” is drawn back to the “accepting the challenge of the disease”. The categories and their connections are shown in Fig. ​ Fig.1, 1 , the derivation of the categories in Additional file 1 .

“Learning to shape life”

During the analysis, “learning to shape life” emerged from the interviews as the core phenomenon (story line). Learning how to shape one’s life is an ongoing process. With changes in illness or life situations, new situations arise to which one must react, so that the process may never be completed.

Because it’s not just diabetes, it’s also going into the professional and private spheres, because such diabetes doesn’t, as they say so nicely, allow life to be so pronounced, but changes the body and everything. Yes, that’s not from eating habits, it goes all the way to, let’s say, even sexual. That’s all connected with it. (Participant 6, male, 50 years old).

So and then I had a job with a security company, also a *security company, there I had to supervise alone night shifts 12 h things. And where they found out about diabetes and so on, they said, the doctor said it already, so: “For God’s sake, you’re not in a position, to do that”. […] I also have, as I said, great difficulties with the job centre there a suitable job again, because you want to get back into work, but there are great problems, because there are so great restrictions from the doctor. (Participant 15, male, 60 years old).

Well, but that’s just one of those areas where I say, yes, on the one hand I know physical activities, food and so on. And the/The ball, I always have the feeling, the ball is with me, I would have to do something there, but really then just to play the ball again, there are a bit of difficulties. But I don’t think that’s necessarily a question for the practice or the doctors now, but that’s also the case, maybe also a little bit, I see it a little bit as a personal matter, where I say I’m on the radar. (Participant 3, male, 50 years old).

Accepting the challenge of the disease, conditions and types of shaping

The causal condition of learning to shape one’s life seemed to be accepting the challenge that the disease brings to the person who has received the diagnosis.

“Yes, Dr. Martin put it simply then: ‘First we try with tablets, and if they don’t work and it gets worse, you’ll have to inject.’ That was a clear warning which made me pay attention.” (Participant 13, male, 72 years old)

“I take note of that and say: Well, then you have to stick to it. I felt that way then, your mother had it now, you have it now too. Well, that/yes, I have this/I did not panic or something and thought: You have to! I just took note of that.” (Participant 9, female, 80 years old)

We found that there was a learning process to shaping one’s life to adjust to T2DM. This contextual factor raised questions about the conditions and types of such shaping. What motivations were there for learning? What encouraged learning? What hindered it? In the narratives of our participants, we found two different motivations for accepting the challenges of the disease. One of the motivations was linked to the negative emotion of fear, namely, “learning out of fear”. The other motivation was associated with an optimistic point of view, namely, “learning to keep going”. Fear seemed to be a motivator for learning and adaptation. Many of our participants had a family history of diabetes mellitus, and they reported that when they were diagnosed, they immediately thought something such as diabetes put my mother in a wheelchair (participant 6, 50 years old) and I do not want that, so I have to do something (participant 16, male, 47 years old). Fear affected several aspects in our model. First, it affected the causal condition “accepting the challenge of the disease” . Second, fear could be considered an intervening or maintaining condition. Finally, fear could be considered as a context because the patient’s knowledge of the disease affected his or her actions. Our participants expressed fears of an increase in therapy, secondary diseases, loss of independence, or loss of social ties.

“And that is the problem that I get such problems with the legs by the sugar because the experience I had to make through my mother, who was also diabetic, for almost over 30 years and ended up in a wheelchair. I don’t want to go there.” (Participant 6, male, 50 years old)

“So, thank God, I do not need to inject. I also hope that I will not have to.” (Participant 1, female, 76 years old)

The issue we describe as “learning to keep going” focused on having as few restrictions as possible through good disease management. To manage their disease, persons affected by T2DM needed knowledge from their doctors or specialists or from self-education.

“As I just said, you get yourself some material. And get some reading material from the doctors, which they provided me. And I read everything myself, and then tried to do as it said.” (Participant 4, male, 73 years old)

“So, my general practitioner has explained to me, what influence for example my diet or physical activity has on the diabetes and the interactions, what happens in the body with the blood glucose and how can it be regulated with the medicines.” (Participant 16, male, 47 years old)

Our participants described very different barriers to learning. A great deal of individual initiative seemed to be required, and patients did not necessarily perceive their health insurance companies as supportive. Another barrier to learning seemed to be scheduling times and dates for patient education and training. Working people, in particular, described problems arranging regular training sessions, which were frequently held in the afternoon. Training seemed to be time consuming and related to the amount of time required for care, such as regular check-ups with T2DM and other specialists, meal preparation and physical activity.

“Not at all, that's all personal interest and commitment.” (Participant 18, female, 60 years old)

“The course with the specialist doctor wasn't bad, either, but because of work I could only go every 14 days. So I missed half of it.” (Participant 16, male, 47 years old)

Participants seemed to perceive an insufficient number of blood glucose measuring strips as a significant barrier to learning. Most of our participants possessed a glucometer supplied by their doctor. Regular self-monitoring for insulin treatment was standard practice, but some participants reported monitoring more often than doctors recommended or considered necessary. This additional measurement was often not compatible with the number of measuring strips supplied by doctors for self-monitoring, and the cost of measuring strips could influence these patients’ approaches to treatment. The problem seemed to be even more serious for patients who had received a glucometer but whose oral antidiabetic therapy did not provide self-monitoring of blood glucose. The effects of physical activity or certain foods seemed to be difficult to interpret for these patients, and they reported feeling not well informed about their condition; indeed, some seemed to suffer from this loss of control. These persons felt hindered in learning because they could not determine and interpret their blood glucose levels as fully as they wished.

“No, no, that's because of the not very cheap measuring strips in there, that is. So, I do it at certain times when I think again, how was it today or something, but just not regularly.” (Participant 3, male, 49 years old)

“You get a month, no, in a quarter by 50 pieces. And if you buy strips, then each pack is about 25 euros, yes? This is natural, of course, that is much money, of course. So, I always try to get measuring strips somewhere else.” (Participant 7, male, 56 years old)

Implementation process: “Follow recommendations very strictly” – “Free design as a competent patient”

In the narratives of our participants, we identified two courses of action. One course seemed to be following the daily recommendations to the letter. The patients who did this seemed to have the highest regard for the authority of their physicians. These participants explained in detail how they have changed their lifestyle and how they have implemented the therapeutic requirements even though the result was a “life with prohibitions”, in which they saw more limitations than possibilities.

“And here I eat cucumber, tomato, what I've grown in the garden myself, or lettuce, and actually it agrees with me, I'm managing well.” (Participant 1, female, 76 years old)

“And I have to discipline myself a bit, too, although it's hard, I admit.” (Participant 9, female, 80 years old)

The other course of action seemed to be more flexible. These participants could be described as persons who did not want their T2DM to take over their lives, so they set their own rules and goals and tried to compensate for doing something that was not recommended. Even in training sessions, they thought about the means that they would and would not implement.

“No, no, no, no, no, that makes even less sense, if you can't enjoy life anymore.” (Participant 12, male, 71 years old)

“I eat too, I really enjoy a piece of cake, and I used to [laughs] always have one on hand. And then you could compensate for it, for instance, by eating less in the evening or injecting more. But I did, what I could and I've always had everything under control.” (Participant 11, male, 64 years old)

Both groups reported the same perception of check-ups. This time-consuming commitment seemed to be positive for patients because these check-ups could give them the certainty that nothing was wrong, and this assurance could be reassuring for patients who learn from fear and possibly relieve their anxiety. However, patients who interpret their actions more freely reported benefits from this confirmation as well.

“Confidence in the action”

The action strategies “Follow recommendations very strictly” versus “Free design as a competent patient” seemed to be influenced either by patients’ confidence in themselves or the effectiveness of the interventions. On the one hand, some patients seemed to have a stronger external locus of control and prefer to blame genetics or external circumstances for their T2DM. These participants claimed that they were not always successful at disease management despite their efforts and that the measures that they learned did not necessarily work.

“I inherited it too, the whole thing.” (Participant 17, male, 56 years old)

“And you see how the sugar goes mad sometimes.” (Participant 15, male, 50 years old)

“He [the doctor] also sees that he gets the diabetes or the sugar down now.” (Participant 8, female, 64 years old)

On the other hand, some patients seemed to have a high internal locus of control and a high expectation of self-efficacy. These persons described taking some leeway in managing their T2DM to maintain their quality of life.

“I am, and have, actually been able to deal with the diabetes well so far, without my/ It's not restricted me in any way, right? I've been able to join in all the parties and everything, and also to go abroad, it's all gone well, because everything was under control.” (Participant 11, male, 64 years old)

“I see that you may be able get around it here and there, but how you can manage it properly, that I just don't/ But I define it rather, and I take responsibility for it, so I say: yes, it's a fact.” (Participant 3, male, 49 years old)

“Acceptance and living with the disease”

The effects of the different learning processes and the actions or strategies that the participant developed could be described as “acceptance and living with the disease”. Ideally, persons affected by T2DM acquired sufficient self-management skills or could interpret these skills and were not severely restricted by their illness. These ideal conditions did not apply to all patients; information and knowledge alone did not induce changes in behaviour. In some cases, the learning process seemed to be delayed, especially for people who could not attend training sessions because of work and those whose management of their lifestyle and therapy had to accommodate their schedules. Patients also reported feeling unable to control the disease if they could not monitor it themselves, e.g., their form of treatment did not allow for self-monitoring so they have to buy their own blood glucose strips. Some of our participants could not afford them and seemed to feel guilty about not being able to monitor their blood glucose. The inability to monitor may have been associated with uncertainty and dissatisfaction.

Educational inequalities in the results

In our study, we observed two courses of action: “follow recommendations very strictly” and “free design as a competent patient”. Furthermore, minor differences in educational status could be observed. Patients who were less educated tended to place more emphasis on being compliant, which goes hand in hand with a life with prohibitions and restrictions. In contrast, being perceived as competent patients who imparted more freedom to their lives and disease management appeared to be more important for people with higher education levels. The differences between the two courses concerned the implementation of new daily routines. Patients with less education described their new routines in detail, placing more emphasis on complying with the restrictions and prohibitions, and seemed to value the authority of their physicians. In contrast, well-educated people with T2DM seemed to want to be perceived by the research team as knowledgeable in daily life and in their interaction with the physicians. At the same time, the locus of control showed minute differences. Predominantly well-educated persons with a high internal locus of control and a high expectation of self-efficacy were found to take some leeway in managing their diabetes to maintain their quality of life.

The results presented here were from a study drawing attention to the perspectives of persons with T2DM in different care settings and considered the patient experience in Germany’s healthcare system. We gained insight into the different experiences of the disease, especially the perceived challenges in adapting to a diagnosis of T2DM.

In our study, adaptation of the previous lifestyle to a life with disease seemed to be central to the disease experience of persons with T2DM. Two possible ways of accepting the challenge of the adaptation processes dominated: 1. learning from fear and 2. learning such that life goes on well. These different motivations were associated with different emotions. Learning from fear was based on negative emotions, while learning was based on a positive, optimistic mood. Even though the relationship between learning and emotions does not seem as simple as positive emotions result in learning well and negative emotions result in learning badly [ 49 , 50 ], some evidence indicated that positive affective processes underlie positive health behaviour change [ 51 ] and may beneficial in most cases [ 49 ]. Furthermore, two implementation processes were observed. One group described itself as very faithful to therapy and strictly adhered to the implementation of the expert recommendations in their daily living. These patients seemed to be more strongly tied to the authority of their physicians. The second group tried to deal more autonomously with T2DM and lead a responsible but well-organized life with the disease. Both groups seemed to be linked to different attribution styles; the first group tended to have a more external attribution style, whereas the second group had an internal style. The resulting lifestyles differed in that the group with external attribution styles had a life with rules and prohibitions. However, the persons with an internal attribution style had lives in which they felt less restricted by the disease and reported fewer perceived limitations in quality of life.

In 2008, Funnel and Anderson described the change in diabetes therapy from compliance to the self-management model [ 14 ]. In our study, the patient group with a lower level of education strongly emphasized their compliance, and the narratives from the patients indicated that some did not fully understand the opportunities and challenges of self-management. With patients following recommendations so strictly, living with diabetes meant a greater limitation for them than for patients who managed their disease more freely. Whether patients who value compliance did not accept the self-management model or whether it was not offered to them by the doctor remained unclear. Evidence has shown that people with low health literacy were perceived by healthcare professionals as uninvolved and less motivated, as well as having less understanding of self-management [ 12 ]. On the basis of our study, we could not determine whether self-reported compliance actually led to good disease management behaviour or whether there were discrepancies with self-perception. The literature showed that secondary diseases and poorer process parameters were more frequently found in socially disadvantaged groups with lower socioeconomic status [ 33 , 35 , 52 , 53 ], so that an effective health behaviour could not be assumed in principle.

The inductive approach brought the study result strongly towards self-management. However, not all dimensions that were categorized as self-management were reported by patients, making it difficult to classify these results into the extensive literature on self-management [ 6 , 14 , 26 , 54 ]. When reporting on their experiences with T2DM and its treatment, patients seemed to place great importance on several components of self-management as they built the core phenome of their viewpoints. These components were physical exercise, blood glucose self-monitoring, and diet. However, other aspects of self-management, such as weight monitoring, foot care, and keeping a diabetes diary, were not mentioned. The stronger emphasis on diet, blood glucose monitoring and physical activity can also be found in other studies [ 55 , 56 ]. These themes may simply be more closely linked to diabetes treatment for patients than, for example, foot care, and these issues may also be frequently discussed with doctors, families and the public. These reasons may explain why diet, physical exercise, blood glucose self-monitoring were so much in the focus of our participants. Looking more closely at the other topics (weight monitoring, foot care, and keeping a diabetes diary) and reinforcing their importance in training and consulting may be necessary.

Professional associations recommend that all persons with T2DM participate in structured patient education [ 15 – 18 ]. However, not every person with T2DM actually takes part in patient education training [ 57 – 59 ]. In our study, almost all patients reported earlier participation in training. However, the findings were interpreted and implemented in different ways. The learning processes for managing the disease proceeded very differently [ 8 , 60 ]. The learning needs suggested that diverse social groups cope with T2DM differently and experience diabetes in various ways. Assessing how patient education addresses the different types of learning and whether all patients benefit equally from the training might be interesting.

In addition, the delivery of glucometers to patients who were not treated with insulin should be critically considered. The patient may assume that blood glucose monitoring is an important part of diabetes self-management. Although this practice is not consistent with medical guidelines, patients may think that they are not being treated adequately if they are not given testing strips, which may have tainted their perception of the medical care that they have received. To this end, there have been changes in the German healthcare system since we carried out our study. Glucometers are no longer supplied free of charge, although whether and in what form this action supports patient is currently still open.

Even though the research team performed the study with great care, the study has some limitations. First, we recruited patients only from Central Germany, in particular Halle/Saale and the surrounding area. Patients in other regions might have other experiences if the supply situation is different. Another limitation is that we did not have participants who had migrated from other countries. The proportion of immigrants in our region is not as high as that found elsewhere, especially in what was formerly West Germany, and we did not encounter them in the recruitment phase. However, as cultural factors seem to be a separate theme in immigrants’ health service utilization [ 61 ], we did not specifically look for immigrants in sampling. The third limitation is that due to the first screening in the doctors’ offices or hospitals, no statements can be made about patients refusing to participate. Our project was designed to explore the patient’s perspective, which also included the importance of family behaviour, the wider social environment and caregivers for dealing with the disease from the patient’s perspective. Due to the project planning, these important reference groups could not be specifically asked what constitutes a further limitation and will be addressed in subsequent projects. Lastly, we performed all steps of the grounded theory thoroughly. However, the process led us to results that give insight into different experiences of the disease, especially perceived challenges in adapting to the diagnosis of T2DM, even if we had not addressed the question so concretely. Nonetheless, the results described were obtained in a rigorous manner.

The persons affected by T2DM who participated in our study seemed to have accepted the need for education and utilized the training offered by the T2DM management programmes. Different types of learning were associated with disparities in education. However, working people should have better access to T2DM education, and the needs of patients with lower educational levels should be considered. Different forms of structured diabetes training, which also take into account the conditions of modern life, are urgently needed in Germany. Further studies should analyse and evaluate patient education and apply it to different types of learners. Specific recommendations on T2DM self-management for patients with less education are necessary. The identification of different learning styles could clarify the association between socioeconomic and healthcare disparities. Some patients seemed to feel incapable of controlling their T2DM if they did not have glucose measuring strips. This observation requires general practitioners, specialists for diabetes, clinicians, and policy makers to ask whether those uncertainties are warranted. Should glucometers be available to everyone being treated for T2DM? These topics are important for further discussion.

Additional file

Derivation of categories. (PDF 598 kb)

Acknowledgements

The authors are grateful to all participating patients for being part of the study and for talking frankly to us about their experiences and feelings. Further, the authors thank the healthcare professionals in the doctors’ offices and hospitals for their support in recruiting the patients. Further on, the authors thank the Qualitative Methods Working Group at the Institute of Medical Sociology and the interpretation group “Grounded Theory in Central Germany”. Finally, the authors thank Amelie Baumann and Maximilian Werner for their support in the early stage of the study. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).

This work is supported by the German Research Foundation (Deutsche Forschungsgemeinschaft) as part of their third academy for early-career researchers in health services research for a period of 12 months, starting April 1, 2015, grant number FI 2057/1–1.

Availability of data and materials

Abbreviations, authors’ contributions.

AF, EMF, SLS. AF is the principal investigator and was responsible for the conception of the project, leading the grant application. She conducted interviews, analysed the data and wrote the initial draft of this manuscript. EMF recruited patients, conducted interviews, and analysed the data. SLS supported and advised the project throughout the whole process. All authors have read and approved the final version of the manuscript.

Ethics approval and consent to participate

The Ethical Review Committee of the Medical Faculty of Martin Luther University, Halle-Wittenberg approved the study (No: 2015–13). All participants gave written informed consent to participate in the study prior to the interview.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

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Contributor Information

Astrid Fink, Email: [email protected] .

Eva-Maria Fach, Email: [email protected] .

Sara Lena Schröder, Email: [email protected] .

Parameter estimation for the oral minimal model and parameter distinctions between obese and non-obese type 2 diabetes

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• ORCID record for MANOJA RAJALAKSHMI ARAVINDAKSHAN
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Oral Glucose Tolerance Test (OGTT) is the primary test used to diagnose type 2 diabetes mellitus (T2DM) in a clinical setting. Analysis of OGTT data using the Oral Minimal Model (OMM) along with the rate of appearance of ingested glucose (Ra) is performed to study differences in model parameters for control and T2DM groups. The differentiation of parameters of the model gives insight into the behaviour and physiology of T2DM. The model is also studied to find parameter differences among obese and non-obese T2DM subjects and the sensitive parameters were co-related to the known physiological findings. Sensitivity analysis is performed to understand changes in parameter values with model output and to support the findings, appropriate statistical tests are done. This seems to be the first preliminary application of the OMM with obesity as a distinguishing factor in understanding T2DM from estimated parameters of insulin-glucose model and relating the statistical differences in parameters to diabetes pathophysiology

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This work has been supported by a grant to PC by the Indian Council of Medical Research (5/4/5-6/Diab./2021-NCD-III). MRA received a research fellowship from MHRD (R/F.II/2// 19/CS/92P03). JS received a research fellowship from ICMR (No.3/1/3/JRF-2017/HRD-LS/56429/54).

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

All participants gave informed consent and the study was approved by Institutional Human Ethics Committtee of CSIR-IICB.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Data Availability

All data produced in the present study are available upon reasonable request to the authors

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