Exploring Barriers to Self-Care in Patients With Uncontrolled Type 2 Diabetes Mellitus: A Qualitative Study

Abstract

Introduction

Patients with uncontrolled type 2 diabetes mellitus (T2DM) experience a multitude of physical and psychological complications, which impose significant burdens on healthcare systems and society at large. Identifying self-care barriers in this patient population is essential for implementing targeted interventions.

Objective

This study aimed to explore the barriers to self-care among patients with uncontrolled T2DM in Iran.

Methods

This qualitative research employed a conventional content analysis approach. Thirteen semi-structured interviews were conducted with patients diagnosed with uncontrolled diabetes. Data management and analysis were performed using MAXQDA 2020 software. To extract core themes, Graneheim and Lundman’s conventional content analysis method was utilized. The trustworthiness of the data were ensured through Guba and Lincoln’s criteria.

Results

The participants’ mean age was 54.61 ± 8.67 years. Four main themes emerged: (1) internal barriers to effective self-care, including limited knowledge, emotional distress, and difficulty adapting to the illness; (2) ineffective social support, reflecting low family involvement and misinformation; (3) weak institutional support systems, such as limited access to specialists and inconsistent medication availability; and (4) the intrinsic nature of diabetes, characterized by progressive complications and emotional exhaustion.

Conclusion

The findings indicate that barriers to self-care in patients with uncontrolled T2DM are multifaceted and arise from internal challenges, insufficient social support, weak institutional support systems, and the progressive and exhausting nature of the disease. Addressing these barriers requires interventions that improve patients’ understanding and emotional adaptation, strengthen family support, and enhance access to consistent healthcare services.

Keywords

self-care type 2 diabetes mellitus qualitative research content analysis Iran

Introduction

Diabetes mellitus (DM) is recognized as a major global public health issue, characterized by disturbances in carbohydrate, protein, and fat metabolism due to insufficient insulin secretion, insulin resistance, or both (Mirzaei et al., 2020). Diabetes affected 6.1% of the global population, based on age-standardised estimates (Collaborators, 2023). Among its various forms, type 2 diabetes mellitus (T2DM) accounts for the vast majority of cases, comprising approximately 95% of diagnoses, primarily in adults over the age of 30 who are overweight or obese (Saeedi et al., 2019). The management of T2DM poses a significant challenge to healthcare systems worldwide, especially in resource-constrained settings such as Iran (Butt et al., 2024).

In Iran, the prevalence has been estimated at 10.8% (Hazar et al., 2024). Alarmingly, only 14.3% of all patients with diabetes achieve adequate glycemic control, while 85.7% fail to reach target hemoglobin A1c (HbA1c) levels, leaving them exposed to the risks associated with uncontrolled diabetes (Association, 2014).

Uncontrolled diabetes refers to a condition in which blood glucose levels remain persistently elevated, are not maintained within target ranges, or are inadequately managed. In studies, uncontrolled diabetes is commonly defined by HbA1c levels exceeding 8% or 9% (Lertwanichwattana et al., 2024; Liu et al., 2020). The global prevalence of uncontrolled diabetes ranges from 38.9% to 76.9%, with an estimated prevalence of 53.6% in Iran (Lorestanifar et al., 2023; Mohseni et al., 2022). Hospital admission rates for patients with poorly controlled diabetes are 2.4 times higher compared to those with other chronic illnesses (Mohamadi et al., 2019). Lifestyle changes, including increased consumption of fast foods rich in saturated fats and decreased physical activity, have contributed to the rise in diabetes prevalence and play a central role in poor glycemic control (Liberty et al., 2024).

Patients with uncontrolled diabetes are likely to use more healthcare resources, resulting in increased costs to the healthcare system. Additionally, this condition leads to reduced productivity due to work absenteeism, functional limitations, lower income, and premature mortality (Gil et al., 2018). Thus, uncontrolled diabetes imposes significant burdens across multiple domains, particularly in terms of economic costs.

Effective blood glucose control requires consistent self-care behaviors. Proper self-care can delay serious complications and improve quality of life for diabetic patients (da Rocha et al., 2020). Diabetes self-care involves behaviors such as maintaining a healthy diet, engaging in physical activity, monitoring blood glucose levels, adhering to medication regimens, and utilizing problem-solving skills (Ahmad & Joshi, 2023). The concept of self-care has been widely discussed in nursing science, most notably in Dorothea Orem’s Self-Care Deficit Theory, which conceptualizes self-care as purposeful activities individuals perform to maintain health and manage illness (Hartweg, 1991).

Although the concept of self-care has been extensively discussed in nursing literature, notably in Orem’s Self-Care Deficit Theory, the ways in which patients with uncontrolled T2DM experience and interpret barriers to self-care remain insufficiently explored, particularly within specific sociocultural and health-system contexts (Jandaghian Bidgoli et al., 2024; Numsang et al., 2023; Pamungkas et al., 2019). Rather than imposing predefined theoretical categories, an in-depth qualitative inquiry is therefore required to capture participants’ experiences and context-specific obstacles to self-care (Laari, 2025). Among qualitative approaches, content analysis is widely used to systematize and interpret textual data; three main variants are commonly described, conventional (inductive), directed (deductive), and summative, each serving different epistemological aims (Hsieh & Shannon, 2005). Because our objective was to allow categories and themes to emerge from participants’ narratives (rather than to test or extend a specified theory), we selected a conventional content-analysis approach to identify context-bound barriers to self-care that may inform subsequent quantitative research.

Despite its importance, diabetes self-care is often complex and challenging, requiring significant lifestyle modifications (Robat Sarpooshi et al., 2020). Patients are expected to sustain specific self-care behaviors throughout their lives (Martínez et al., 2021). Numerous factors influence an individual’s ability to engage in self-care, including the type and duration of diabetes, presence of comorbidities, and cultural, psychological, social, and economic conditions (Nejat et al., 2021). Therefore, it is essential to explore the specific barriers that patients with uncontrolled diabetes encounter in practicing self-care.

Review of the Literature

Previous studies have explored various barriers to self-care among patients with T2DM; however, few have specifically examined those with uncontrolled diabetes, particularly within the Iranian context (Letta et al., 2021; Li et al., 2025; Mogre et al., 2019). Some research has included both controlled and uncontrolled groups, revealing that barriers are often more persistent and complex among those with poor glycemic control (D'Souza et al., 2017). A qualitative study in Iran explored the self-care experiences of patients with T2DM and identified barriers such as low self-efficacy, external beliefs about diabetes treatment, lack of support, perceived identity threats, autonomous glucose control, and perceived helplessness (Heidari et al., 2021). Also, a phenomenological study was conducted to identify the barriers to self-care among patients with T2DM. The findings revealed that poverty, low awareness, insufficient family support, hopelessness, and unhealthy lifestyle habits were the main challenges hindering effective diabetes management (Abdi et al., 2025). Furthermore, a qualitative study in Nepal explored barriers to accessing diabetes care among patients with type 1 and type 2 diabetes in urban and rural areas. The main barriers included stigma related to diabetes and insulin use, poor adherence due to high costs and limited resources, shortage of specialists and healthcare facilities in rural regions, as well as dissatisfaction with healthcare services, preference for alternative treatments, and inadequate insurance coverage (Shrestha et al., 2024). Research on type 1 diabetes indicated the dual role of technology and social environment as both barriers and facilitators, alongside the significant challenge of transitioning from pediatric to adult care (Montali et al., 2022). Importantly, a review of the qualitative diabetes literature indicates that most qualitative studies exploring self-care barriers have employed inductive approaches, such as conventional content analysis or phenomenological methods, allowing themes to emerge from patients’ narratives rather than being structured around predefined theoretical frameworks (Abdi et al., 2025; Heidari et al., 2021).

Although studies have examined self-care behaviors among patients with T2DM, most have focused on the general diabetic population rather than those with uncontrolled glycemic levels. Consequently, the specific barriers that prevent patients with persistently high HbA1c levels from adhering to self-care practices remain insufficiently explored. This gap is particularly relevant in Iran, where the prevalence of uncontrolled diabetes is high and self-care behaviors are strongly influenced by cultural and socioeconomic factors. A deep understanding of these barriers requires qualitative research, which can uncover complex, context-specific insights and generate hypotheses for future quantitative investigations (Busetto et al., 2020). Understanding such context-driven barriers is essential for developing targeted interventions and educational strategies that enhance diabetes self-management, improve glycemic outcomes, and reduce healthcare system costs. Therefore, this qualitative study was designed to explore and explain the barriers to self-care among Iranian patients with uncontrolled T2DM.

Methods

Design

This study employed a qualitative inductive (conventional) content analysis approach to describe participants’ experiences without applying predefined theories or categories (Lim, 2025). This inductive method was suitable for identifying context-specific and practical barriers to self-care among patients with uncontrolled T2DM in Iran. The approach was implemented through face-to-face and in-depth interviews conducted by a trained interviewer (MF) using a semi-structured interview guide. The interviews were carried out in various healthcare settings in Gorgan, Iran. The primary objective was to explore and understand the self-care barriers experienced by patients with uncontrolled T2DM. The study proposal was approved by Golestan University of Medical Sciences with registration code: 113698, and ethical approval was granted by the Ethics Committee of Golestan University of Medical Sciences (Approval Code: IR. GOUMS.REC.1402.297). The COREQ checklist for qualitative research is provided in Appendix 1.

Participants and Setting

The qualitative phase of the study was conducted from June 2024 to June 2025 in Gorgan, Iran. Participants were recruited from several healthcare settings to ensure variation in experiences. These included the endocrinology ward (18 beds) and the nephrology ward (22 beds) of 5 Azar Hospital, the outpatient diabetes clinic of Dezyani Hospital, where patients routinely visit endocrinologists for glucose control, laboratory follow-ups, and medication adjustments, and the infectious diseases ward (15 beds) of Shahid Sayad Shirazi Hospital, which provided access to patients with diabetic foot ulcers.

Inclusion criteria for participation included: a confirmed diagnosis of T2DM, an HbA1c level above 8%, age over 18, willingness to participate in and be audio recorded during the interview, and the ability to communicate fluently in Persian with the researcher. The exclusion criterion was unwillingness to continue participation during the interview process.

Data Collection

Eligible patients were identified by diabetes nurses and physicians in each setting and were approached directly by the researcher to explain the study objectives and obtain informed consent. Participants were selected purposefully, and sampling continued until data saturation was achieved. The selection of participants was carried out by the researcher MF. In addition to the inclusion criteria, factors such as age, gender, HbA1c level, duration, and diabetes complication, were also considered to ensure maximum variation among participants, as a key principle in qualitative research (Ahmed, 2025). Data were collected through semi-structured face-to-face interviews, which were conducted in private rooms within the research settings at times arranged in advance, according to participants’ preferences. Each interview lasted between 30 and 90 minutes. With participants’ consent, all interviews were audio-recorded using a digital recorder. Immediately following each session, audio recordings were transcribed verbatim using Microsoft Word. The interviewer used an interview guide to ask questions such as: “Please describe your experience with self-care,” “Walk me through a typical day in your life,” “What obstacles have you encountered in managing your self-care?” and “How have you addressed or managed those difficulties?” Probing questions were also used to gain deeper insights, including: “Can you explain that more?”, “Can you give me an example?” or “What exactly do you mean by that?” Each interview concluded with an open-ended question such as: “Is there anything else related to this topic that you would like to share?”

To minimize interviewer bias, a pilot interview was conducted to refine the clarity, neutrality, and sequencing of questions in the semi-structured guide. The interviewer maintained a reflexive journal after each session to record personal assumptions, emotional reactions, and possible influences on participants’ responses. Peer debriefing meetings were held regularly to review interview techniques, ensure neutrality in tone and probing, and enhance consistency across interviews.

Data Analysis

Interview recordings were transcribed verbatim and coded using MAXQDA 2020 software by the researcher (MF, Kh Y). The primary researcher (MF) was a PhD candidate in nursing with formal training in qualitative research. The co-researchers (Kh Y, Gh M) were faculty members in nursing with expertise in chronic disease management and qualitative data analysis. Team members participated in methodological workshops on content analysis and engaged in regular peer discussions to ensure analytic rigor, reflexivity, and interpretive accuracy.

The content analysis was conducted based on the method proposed by Graneheim & Lundman (2004). Rsearchers (MF, Kh Y) read the transcripts repeatedly to gain immersion. A preliminary codebook was developed from the first three interviews. Two researchers (MF, Kh Y) independently coded a subset of transcripts and met regularly to compare codes, refine definitions, and update the codebook. For each interview, meaning units were identified and condensed. These condensed meaning units were labeled with codes, which were then grouped into subcategories based on similarities and differences through constant comparison. Subcategories were further grouped into main categories according to conceptual relationships, and eventually, themes emerged from the categories. To ensure analytical rigor, the transcripts were reviewed multiple times by two researchers (MF, Kh Y) independently and jointly. Each transcript was read at least three times, first for familiarization, then for identifying meaning units, and finally for verifying consistency of codes and interpretations. Coding discrepancies or differences in interpretation were discussed during regular team meetings. Disagreements were resolved through discussion and, when needed, adjudicated by a third researcher (Gh M). To assess intercoder reliability, Cohen’s Kappa coefficient was calculated, yielding a value of 0.88, which indicates a near-perfect agreement, as values above 0.80 are generally considered excellent (Cole, 2024). A sample of the abstraction process is presented in Table 1. Data collection and analysis continued until saturation was reached. Saturation was determined according to the principles of qualitative content analysis, where data collection and analysis occurred concurrently. Saturation was reached when no new codes or themes emerged and the researchers had gained a comprehensive understanding of the phenomenon (Rahimi & khatooni, 2024). After the thirteenth interview, the team confirmed that additional data produced only repetition. The sample size was considered sufficient to capture diverse experiences and meet the study’s exploratory aim. Authenticity was ensured by preserving participants’ voices, tones, and emotions as they were expressed during interviews. All interviews were audio-recorded and transcribed verbatim to retain verbal nuances and emotional intensity. The researchers used field notes to record non-verbal cues, environmental details, and contextual impressions that enriched interpretation.

Table 1.

An Example of the Data Analysis

Condensed meaning unit	Codes	Subcategories	Main categories	Theme
Diabetes is similar to cancer, with the potential to damage a part of the body at any moment. When blood sugar levels are elevated, it affects the eyes, kidneys, heart, and mental health. It is a severe disease with no definitive cure.	Diabetes is like cancer, destructive to body tissues, affecting all organs, causing psychological complications, and being incurable.	Multiple physical problems, uncertainty about treatment outcomes, negative impact of the disease on mood	Physically disabling complications, exhausting and complex disease course	Intrinsic nature of diabetes

Interviews and transcriptions were in Persian. Selected illustrative quotes were translated into English using a forward–back translation procedure: two bilingual individuals independently translated the quotes into English; a third bilingual researcher back-translated them into Persian to verify conceptual equivalence.

Trustworthiness

To ensure methodological rigor and enhance the trustworthiness of the qualitative findings, this study adhered to the four established criteria proposed by Lincoln and Guba including credibility, transferability, dependability, and confirmability (Ahmed, 2024). Credibility was achieved through prolonged engagement with participants over approximately one year, allowing for an in-depth understanding of their lived experiences. Additionally, member checking was conducted, whereby participants reviewed transcripts and codes to verify accuracy and provide feedback. Dependability was addressed by maintaining a detailed audit trail documenting all methodological decisions, coding revisions, and analytical steps throughout the study. The coding process was continuously reviewed and updated by researchers (MF, Kh Y, Gh M). Confirmability was supported through peer debriefing and reflexive journaling. The research team members regularly discussed interpretations and coding to minimize personal biases. External qualitative research experts unaffiliated with the project reviewed the coding framework and emerging categories. Transferability was enhanced through thick description of the study context, participant characteristics, and data collection process, enabling readers to assess the applicability of findings to other settings.

Results

A total of thirteen patients with T2DM participated in the study, of whom six (46.15%) were female and seven (53.85%) were male. The mean age of the participants was 54.61 ± 8.67 years, the average duration of diabetes was 12.61 ± 5.85 years, and the mean HbA1c level was 9.19 ± 0.81%. The average interview duration was 41.00 ± 10.33 minutes. Additional demographic information is presented in Table 2.

Table 2.

Demographic Characteristics of Patients With Uncontrolled Diabetes

Participant no.	Gender	Age	Duration of disease (years)	Education	BMI	Interview duration (minutes)	HbA1c (%)
1	Male	65	10	Bachelor	27.55	27	8.2
2	Male	60	7	Diploma	26.12	42	9.4
3	Female	56	7	Primary	23.44	45	8.3
4	Male	48	5	Secondary	23.71	41	8.9
5	Female	55	7	Primary	35.16	47	11.3
6	Male	64	15	Diploma	20.28	38	9.7
7	Female	52	13	Primary	25.24	53	10.4
8	Female	44	13	Diploma	31.60	17	8.4
9	Female	50	10	Diploma	25.71	43	8.8
10	Male	61	22	Illiterate	24.98	42	8.3
11	Male	61	14	Guidance	29.71	41	9.5
12	Male	58	10	Bachelor	30.16	48	8.8
13	Female	37	10	Diploma	30.07	58	9.2

From a total of 845 initial codes, 35 subcategories, 13 main categories, and four themes were extracted (Table 3).

Table 3.

Emergent Categories in Content Analysis

Subcategories	Main categories	Themes
Low level of formal education	Limited knowledge	Internal barriers to effective self-care
Inability to use educational tools
Age-related cognitive decline
Hopelessness about treatment	Emotional dysregulation
Difficulty managing stress	Emotional dysregulation
Lack of regular medical check-ups	Poor adaptation to disease
Exaggerated perception of illness severity	Poor adaptation to disease
Prioritizing life responsibilities over self-care	Imbalance between self-care and daily life
Neglecting the disease	Imbalance between self-care and daily life
Misguided cultural beliefs	Cultural and religious beliefs
Religious and spiritual beliefs	Cultural and religious beliefs
Reliance on herbal medicine	Self-medication
Intentional alteration of treatment regimen	Self-medication
Low empathy among family members	Low family support	Ineffective social support in the care journey
Lack of a consistent caregiver	Low family support
Family’s limited knowledge of diabetes	Inadequate knowledge among family and friends
Unscientific advice from friends	Inadequate knowledge among family and friends
Limited access to diabetes specialists	Shortcomings in diabetes clinics	Weak institutional support systems
Lack of individualized patient education
Absence of educational aids in clinical settings
Inadequate needs assessment	Inadequate hospital care
Insufficient patient education
Lack of post-discharge follow-up
Insulin shortage	Financial and pharmaceutical insecurity
Insurance-related issues
Lack of governmental and charitable support
Diabetic foot ulcer	Physically disabling complications	The intrinsic nature of diabetes
Gastrointestinal complications
Neuropathy
Urinary complications
Ocular complications
Cardiac complications
Fatigue from ongoing disease monitoring	Exhausting and complex disease course
Uncertainty about treatment outcomes
Negative impact of the disease on mood

Theme 1: Internal Barriers to Effective Self-Care

This theme reflects participants’ experiences of personal, emotional, behavioral, and cultural factors that hinder effective diabetes self-care. Six subcategories emerged: limited knowledge about diabetes, emotional difficulties, poor adaptation to illness, competing daily responsibilities, cultural and religious practices, and use of alternative/herbal remedies.

Limited Knowledge

Several participants reported that low formal education, unfamiliarity with digital educational tools, and age-related cognitive limitations made it difficult to learn and follow self-care advice. For example, one participant said,

“Learning many things is hard for me. I’m older and not very educated. My children usually attend the educational sessions.” (Part 12). Another stated, “These smartphones have lots of useful information, but I don’t know how to use them properly.” (Part 2).

Emotional Dysregulation

Participants described feelings of stress and hopelessness that they believed affected their eating or medication adherence. One participant explained,

“When I get stressed, I completely lose control over my eating and my blood sugar spikes.” (Part 6).

Another commented:

“Sometimes I feel hopeless, and I stop caring about my disease or controlling my blood sugar.” (Part 8).

Poor Adaptation to Disease

Several participants were unable to accept or adapt to the realities of living with diabetes. They described avoiding medical follow-ups or expressing heightened concern about disease consequences. One said,

“Honestly, I rarely go to the doctor for follow-ups. Since my diagnosis, I’ve only seen a specialist twice. I haven’t checked my blood sugar in two years because the test results make me feel awful.” (Part 1).

Another commented,

“Diabetes is worse than cancer in my opinion; you could lose your eyesight or even a limb.” (Part 8).

Imbalance Between Self-Care and Daily Life

Some patients deprioritize self-care due to work or family obligations. One said,

“I leave early for work and come home late. I’m too tired and have no time for exercise.” (Part 10).

Cultural and Religious Beliefs

This category reflects participants’ descriptions of how cultural and religious beliefs shape their personal approaches to diabetes management and daily self-care practices. Some participants described prioritizing religious practices despite medical advice. For example, one participant stated,

“Even though doctors recommend against fasting for diabetics, I fast every day during Ramadan. I believe God will help me recover through fasting.” (Part 13).

Self-Medication

This category captures participants’ accounts of modifying or substituting prescribed treatments based on personal beliefs and experiences. Some participants described choosing dietary control or herbal remedies instead of prescribed medications. One participant explained,

“My doctor insists I take my medications, but I don’t believe in them. They have side effects. I control my blood sugar with diet and exercise.” (Part 6).

Another participant stated,

“Instead of these chemical drugs, I use herbal teas like olive leaf, walnut leaf, and raspberry leaf to lower my blood sugar.” (Part 5).

Theme 2: Ineffective Social Support in the Care Journey

This theme reflects participants’ descriptions of how interactions with family members and close social contacts relate to their experiences of diabetes self-care. It comprises two main categories: low family support and inadequate knowledge of diabetes among close contacts.

Low Family Support

This category captures participants’ accounts of limited emotional understanding or support within the family context. Some participants described interpersonal tension or lack of empathy affecting their daily management of diabetes. One said,

“My husband argues with me over every little thing and doesn’t understand that I have diabetes. When I get stressed, my condition gets worse, and I stop taking care of myself.” (Part 3).

Inadequate Knowledge Among Family and Friends

This category reflects participants’ experiences of receiving advice or influence from family members and friends regarding diabetes management. Some participants described following recommendations based on non-medical beliefs. One said,

“My husband says that traditional and experiential healers are better than doctors. I followed his advice, and my blood sugar went up.” (Part 7).

Another commented,

“My wife believed insulin was addictive. She was so against it that I stopped using it.” (Part 2).

Theme 3: Weak Institutional Support Systems

This theme describes participants’ accounts of their interactions with healthcare services and support structures. It includes three main categories: shortcomings in specialized diabetes clinics, inadequate hospital care, and issues with financial and pharmaceutical support.

Shortcomings in Diabetes Clinics

Participants described challenges related to scheduling appointments and accessing specialized care and education. One said,

“Endocrinologists and diabetic nurses are only available at specific times. It’s not easy to get appointments.” (Part 13).

Inadequate Hospital Care

This category reflects participants’ descriptions of their inpatient care and follow-up experiences. Some participants reported limited interaction or education during hospitalization and after discharge. One said,

“When I was hospitalized, the nurses and doctors didn’t have time to identify my problems or provide proper education. After discharge, no one followed up.” (Part 4).

Financial and Pharmaceutical Insecurity

Participants described experiences related to medication availability, insurance approval, and treatment costs. One said,

“For a while, Novomix insulin wasn’t available. The doctor had to switch my insulin type. And unless insurance companies approve it, pharmacies won’t give it to us. Even then, only select pharmacies carry it.” (Part 12).

Another commented,

“I’m a farmer, and the cost of medication is too high. I used it for three months but couldn’t afford it anymore.” (Part 3).

Theme 4: The Intrinsic Nature of Diabetes

This theme captures the chronic, degenerative, and complex nature of diabetes, which participants described as involving progressive physical complications and increasing burden over time. Two main categories were identified: physically disabling complications and the disease’s exhausting, long-term course.

Physically Disabling Complications

Participants described various diabetes-related complications that affected their physical functioning and daily activities. One said,

“I had a foot ulcer that I didn’t notice. It didn’t heal, and my toes turned black. The surgeon had to amputate them. Now I can’t move or exercise like before.” (Part 10).

Another commented,

“Diabetes damaged my kidneys, caused fluid around my heart, and I ended up on dialysis. No matter how much I try to manage it, the damage keeps spreading.” (Part 9).

Exhausting and Complex Disease Course

This category reflects participants’ accounts of ongoing fatigue and burden associated with continuous treatment and monitoring. One said,

“I’m tired of visiting doctors all the time. My feet keep bleeding and getting worse day by day.” (Part 2).

Discussion

The present study aimed to identify self-care barriers among patients with uncontrolled T2DM in Iran. Thirteen patients with uncontrolled diabetes were selected through purposive sampling and participated in face-to-face, semi-structured interviews. Data were analyzed using Graneheim and Lundman’s conventional content analysis method. In total, four overarching themes, thirteen main categories, and thirty-five subcategories were identified. The themes included: internal barriers to effective self-care, ineffective social support in the care journey, weak institutional support systems, and the intrinsic nature of diabetes.

Several recent qualitative studies from diverse settings have reported barriers to self-care among patients with T2DM that align conceptually with the findings of the present study. For example, a qualitative exploratory study in Ghana found that patients experienced multiple obstacles in performing dietary, physical activity, medication, and glucose monitoring behaviors, often influenced by personal, social, and healthcare provider factors (similar to our themes of internal and institutional barriers) (Mogre et al., 2019). In a study from Pakistan, barriers such as financial constraints, physical limitations, social obligations, and life circumstances were described by patients as hindering adherence to recommended self-care practices, highlighting the influence of daily life demands and resource constraints (Bukhsh et al., 2020).

The theme of internal barriers to effective self-care encompassed six main categories. One key barrier was limited knowledge. In this study, limited knowledge was linked to low educational attainment, advanced age, and an inability to utilize educational technologies. This finding aligns with previous qualitative research on patients with T2DM, which identified inadequate knowledge as a significant barrier to self-care (Letta et al., 2021). Other studies have similarly shown that individuals with lower levels of education tend to have limited understanding of diabetes (Velázquez López et al., 2023). Insufficient knowledge can contribute to poor medication adherence, unhealthy dietary choices, and inadequate physical activity.

Emotional dysregulation emerged as another significant barrier to effective self-care. This category refers to patients’ inability to manage stress and feelings of hopelessness related to the disease. Perceived stress can directly impair self-care behaviors (Motaghi et al., 2023). Furthermore, hopelessness can negatively affect patients’ motivation, disrupt engagement in essential tasks such as medication adherence, dietary regulation, and exercise. Thus, psychological empowerment can play a crucial role in improving self-care among diabetic patients (Motaghi et al., 2023).

Poor adaptation to the disease was also identified as a major barrier. Some patients in this study avoided periodic check-ups due to a fear of needles or anxiety about test results. Many reported that the anticipation of negative lab results intensified their stress, leading them to disengage from care. Avoidance, as a maladaptive coping mechanism, has been cited in previous studies as well (Hapunda, 2022). Additionally, some patients reported exaggerated perceptions of the disease’s severity, with beliefs that diabetes was more devastating than even malignant cancer, which led them to abandon self-care behaviors.

The category imbalance between self-care and daily life highlighted the deprioritization of self-care in favor of other responsibilities. Many patients reported prioritizing family obligations or work-related tasks over diabetes management. Some were so consumed by work that they were left with no energy or time for exercise or treatment adherence. This aligns with previous qualitative research indicating that occupational responsibilities can hinder self-care practices in patients with T2DM (Bukhsh et al., 2020).

Cultural and religious beliefs were also identified as influential barriers. This finding is consistent with earlier studies (Molla et al., 2025). For instance, some participants insisted on fasting during Ramadan, despite medical advice to the contrary. These patients were required to take medications and engage in physical activity at specific times, which fasting disrupted. Such beliefs can lead to treatment delays or diminished adherence to prescribed regimens.

The final category under internal barriers was self-medication. In this study, several patients admitted to intentionally altering prescribed treatment regimens or excessively using herbal remedies. These findings are consistent with previous literature, which has documented the tendency of some patients to substitute conventional medication with herbal treatments (Vaezi et al., 2021).

The second theme, ineffective social support in the care journey, consisted of two main categories: low family support and inadequate knowledge among close contacts. These results mirror findings from a previous Iranian qualitative study that emphasized the role of insufficient family support in undermining self-care among diabetic patients (Mogre et al., 2019). Participants expressed a desire for emotional understanding and empathy from family members. Some described feeling neglected or misunderstood, which negatively impacted their motivation and ability to perform self-care tasks. The absence of a consistent caregiver was also cited as a challenge, as caregivers often play a crucial role in reminding patients about medication schedules, dietary restrictions, and other health behaviors (Bukhsh et al., 2020). Additionally, patients reported receiving unscientific or counterproductive advice from family and friends. For example, one participant’s spouse discouraged the use of antidiabetic medication, leading the patient to discontinue its use.

The third theme, weak institutional support systems, consisted of three main categories: shortcomings in diabetes clinics, inadequate hospital care, and financial and pharmaceutical insecurity. Specialized diabetes clinics have the potential to play a critical role in promoting self-care. However, limited access to endocrinologists, a lack of personalized education, and the absence of educational aids were highlighted by participants as key barriers. These findings are in line with a qualitative study from Ethiopia, which identified similar limitations as barriers to self-care (Letta et al., 2021). Furthermore, hospitalization provides a crucial opportunity for needs assessment, education, and planning. However, several patients in this study reported a lack of patient-centered assessment, insufficient education during admission, and an absence of structured post-discharge follow-up. These issues are corroborated by other studies that highlight inadequate discharge planning and educational support as systemic failures (Nikpour et al., 2022). Previous research has shown that patients often perceive hospital care as impersonal and non-individualized, which can further hinder their engagement in self-care (Letta et al., 2021).

Financial strain and lack of support from governmental or non-governmental organizations also emerged as critical issues. Participants reported difficulties obtaining medications such as insulin due to availability issues, insurance approval delays, or high out-of-pocket costs. These challenges have been identified globally as significant barriers to diabetes management (Society, 2021). Ensuring medication availability in pharmacies, streamlining insurance processes, and reducing costs are necessary steps to improve access to essential treatment.

The final theme, the intrinsic nature of diabetes, captured the chronic, progressive, and physically debilitating aspects of the disease. This included complications such as neuropathy, diabetic foot ulcers, cardiovascular, ocular, and renal impairments, which placed patients in a complex cycle of decline (Bukhsh et al., 2020; Chamine et al., 2022). Ongoing disease monitoring and the accumulation of complications contributed to both physical and psychological exhaustion. Uncertainty regarding treatment outcomes further intensified emotional distress and burden, which in turn adversely affected patients’ self-care engagement (Murat Mehmed Ali et al., 2025). Interestingly, a contrasting finding was reported in another qualitative study, in which patients believed that diabetes was curable, leading some to discontinue their medications (Letta et al., 2021).

Although this study employed an inductive content analysis approach that did not impose Orem’s Self-Care Deficit Nursing Theory a priori, the emerged themes showed meaningful convergence with several core concepts of this theory (Hartweg, 1991). Specifically, the categories of “limited knowledge,” “emotional dysregulation,” “poor adaptation,” and “imbalance between self-care and daily life” directly reflect deficits in self-care agency—i.e., the patient’s capability to perform self-care actions. Furthermore, “physically disabling complications” and the “exhausting” align with increased health-deviation self-care requisites, where illness-related demands exceed available self-care capacity. Importantly, these convergences were not predetermined but emerged inductively from patients’ narratives, providing naturalistic validation of Orem’s theory in the context of uncontrolled T2DM in Iran. Other categories (e.g., cultural beliefs, self-medication, weak institutional support) were not directly mappable to Orem’s constructs and are best understood as contextual determinants rather than theory-driven elements. This post-hoc interpretation does not compromise the inductive integrity of the study but rather enriches the discussion by linking bottom-up findings to established nursing theory.

Limitations and Strengths

This study has several limitations. First, the study focused solely on patients’ perspectives and did not include the viewpoints of family members, healthcare providers, or policymakers, which may have offered a more comprehensive understanding of interpersonal and institutional influences. Second, participants were recruited from specific public healthcare settings, and barriers related to private or rural healthcare services may not be fully represented. Finally, although Orem’s Self-Care Deficit Theory informed the broader conceptual background, the study design was limited to an inductive content-analysis approach, and data were not analyzed through predefined theoretical categories.

This study also has several strengths. It offers an in-depth, patient-centered exploration of self-care barriers among individuals with uncontrolled T2DM, a population that has received limited attention in qualitative research. The inclusion of participants with diverse demographic and clinical characteristics enriched the variation of experiences and strengthened the analytical depth of the findings.

Implications for Practice

The findings highlight several actionable strategies for healthcare professionals caring for patients with uncontrolled T2DM. Clinicians should regularly assess emotional distress, coping styles, and self-care confidence during follow-up visits, as psychological factors such as hopelessness and stress strongly affect glycemic control. Diabetes educators and nurses should tailor self-care education to patients’ literacy levels and digital skills, using simple materials and visual tools. Family-centered education is essential to correct misconceptions about insulin and traditional remedies and to strengthen emotional support at home. Health institutions should also ensure continuity of care through accessible diabetes clinics, post-discharge follow-ups, and consistent medication and insulin supply. Implementing these targeted, culturally sensitive interventions can improve self-care adherence and clinical outcomes among patients with uncontrolled diabetes.

Conclusion

Supplemental Material

Supplemental Material - Exploring Barriers to Self-Care in Patients With Uncontrolled Type 2 Diabetes Mellitus: A Qualitative Study

Supplemental Material for Exploring Barriers to Self-Care in Patients With Uncontrolled Type 2 Diabetes Mellitus: A Qualitative Study by Mahbobeh Firooz, Khadijeh Yazdi, Gholam Reza Mahmoodi-Shan and Maryam Zahedi in Sage Open Nursing.

Footnotes

Acknowledgments

The authors extend their sincere appreciation to all participants who generously shared their time and personal experiences. We also acknowledge the cooperation and logistical support provided by the staff at 5 Azar and Shahid Sayad Shirazi Hospitals, as well as local diabetes clinics and health centers in Gorgan. The support of the Research and Technology Deputy of Golestan University of Medical Sciences is also gratefully recognized. The author used ChatGPT to improve the English language quality of this manuscript.

Ethical Considerations

Ethical approval for this study was obtained from the Ethics Committee of Golestan University of Medical Sciences (Approval Code: IR. GOUMS.REC.1402.297).

Consent to Participate

All participants provided written informed consent prior to the interviews. They were assured of confidentiality, voluntary participation, and their right to withdraw at any stage without any consequence. Also, The authors confirm that ChatGPT was used to improve the clarity and language quality of the manuscript, and all generated text was thoroughly reviewed and approved by the authors before submission.

Author Contributions

Design: MF, and Kh Y; Data collection: MF, and Kh Y, M Z; Data analysis: MF, Kh Y, and Gh M; Preparing the manuscripts for publication: MF, Kh Y, Gh M, M Z.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was conducted without external financial support. It was undertaken as part of an academic research initiative endorsed by Golestan University of Medical Sciences.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Due to the qualitative nature of the study and ethical considerations regarding participant confidentiality, raw interview transcripts and audio files are not publicly available. However, anonymized data excerpts and coding frameworks that support the findings can be shared by the corresponding author upon reasonable request, subject to institutional ethical approval.*

Supplemental Material

Supplemental material for this article is available online.

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