Study setting and design

This study was conducted in Karnataka, India, and examined challenges and responses to T1DM through multi-stakeholder engagement. This study employed a qualitative research design, utilizing in-depth interviews (IDIs) and focus group discussions (FGDs) over six months to explore the experiences, challenges, and perspectives of key stakeholders involved in T1DM management. FGDs were conducted at clinical facilities when feasible, which encouraged dynamic exchanges revealing shared perspectives. However, due to the sensitive nature of personal challenges and emotional burdens are often less shared in groups, IDIs provided a private setting for deeper, personal sharing. While both explored similar themes, FGDs focused on shared experiences, and IDIs on individual views. No participants overlapped between the two methods.

Using purposive sampling, we aimed to include participants with diverse backgrounds and experiences. For PwT1DM and caregivers, we considered variations in age, gender, place of residence (rural or urban), and duration since diagnosis. For healthcare providers and policymakers, we included a mix of professional roles, facility types (primary, secondary, tertiary), and administrative levels (district and state). This diverse representation of participants enabled us to capture the complexity of challenges and responses related to T1DM across different settings and roles. Data collection continued until thematic saturation was achieved, which was assessed iteratively. Saturation was considered reached when no new themes emerged in at least two consecutive interviews within each participant group, and responses began to repeat. The research team jointly reviewed this process to ensure consistency and depth across stakeholder groups. Participants were recruited between November 15, 2023, and April 15, 2024, based on their availability and the convenience of scheduling.

An interview and FGD guide (S1 Appendix), developed in alignment with the study objectives, included open-ended questions to explore T1DM management strategies, personal challenges, systemic barriers, and policy gaps. FGDs were conducted only with PwT1DM and caregivers, as it was feasible to mobilize them in group settings and capture commonly shared experiences. In-depth interviews were used alongside FGDs to explore more personal or sensitive issues. For healthcare providers, policymakers, and senior officials, only in-depth interviews were conducted, as group discussions were not practical due to logistical constraints and the individualized nature of their roles.

Pilot testing was done to clarify and assess the relevance. Interviews and focus group discussions (FGDs) were conducted in Kannada, the local language, and subsequently translated into English for analysis and interpretation. Bilingual team members reviewed translations to ensure accuracy and contextual relevance. The interviews and FGDs were facilitated by trained qualitative researchers from the study team, who had no prior relationship with the participants. This helped maintain professional neutrality and reduce bias in the data collection process.

All sessions were held in private and quiet locations, such as hospital consultation rooms, health facilities, office meeting halls, or community centers, depending on participant convenience and to ensure confidentiality. Written informed consent was obtained from all participants, and sessions were audio-recorded, supplemented with field notes that captured non-verbal cues and contextual nuances. For participants who were unable to read and write, the researchers explained the research work in detail in their local language, and after clarifying their doubts, written informed consent was obtained.

The research team brought together diverse professional perspectives, including those of a public health researcher, a clinician, and an adolescent student researcher—this multidisciplinary composition enriched data interpretation by incorporating varied lenses. In many cases, shared professional or lived experiences with certain participant groups helped establish trust and rapport, facilitating more open and in-depth discussions. To complement this strength and ensure balanced perspectives, interviews and FGDs were conducted by an independent trained qualitative researcher with no prior professional relationships with participants, enabling both respectful engagement and methodological rigor. In this study, we used two types of triangulations to improve the credibility and richness of our results. First, data source triangulation involved the collection of perspectives from different stakeholder groups, including individuals with type 1 diabetes (PwT1DM), caregivers, healthcare providers, and policymakers. This approach helped us compare and verify insights from various experiences. Second, investigator triangulation was applied by team members from different disciplinary backgrounds who independently coded the data and developed themes, thereby increasing the rigor of our interpretation. (S2 Appendix)

Data analysis

All collected data, including audio recordings and field notes, were systematically organized, stored, and managed in a secure database using NVivo (version 11) qualitative data analysis software. Audio recordings, conducted in Kannada, were transcribed verbatim in the same language and later translated into English by an independent trained qualitative researcher. Transcripts were cross-checked with field notes to ensure accuracy and capture contextual nuances. Anonymization protocols were followed to remove identifying information before analysis.

We employed thematic analysis following Braun and Clarke’s (2006) framework, using a hybrid approach that combined both inductive and deductive coding [18]. Deductive codes were based on key domains, including access to care, insulin supply and affordability, health system responsiveness, and policy engagement, while inductive codes captured emerging, context-specific patterns grounded in participant narratives. The process involved data familiarization, initial coding, theme identification, and iterative refinement through team discussions. We followed the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines to enhance transparency and ensure methodological rigor.

We employed triangulation among stakeholder groups, including PwT1DM, caregivers, healthcare providers, and policymakers, to compare and validate the emerging themes from various perspectives.

Limited policy integration and financial protection

Participants, particularly policymakers and health providers, reported that T1DM remains a low-priority issue within both national and state health policy frameworks. They pointed out that, while the National Programme for Prevention and Control of Non-Communicable Diseases (NPNCD) seeks to strengthen NCD care, its emphasis is largely on Type 2 Diabetes Mellitus (T2DM), leaving the distinct needs of PwT1DM unaddressed. According to participants, unlike other NCDs, there is no strong policy framework to ensure uninterrupted access to insulin and monitoring tools, partly due to the lack of structured funding for T1DM. They attributed this low prioritization to the limited visibility of T1DM cases in routine health system data and a widespread perception that it affects relatively fewer people, especially children, making it less urgent for national-level attention.

Moreover, participants noted that state-led subsidy programs for insulin and glucose monitoring supplies are available in certain regions. However, they reported inconsistent implementation across districts, citing factors such as lack of awareness among healthcare staff, irregular supply chains, and delays in fund disbursement. Some participants also expressed concern that, despite the existence of such schemes, frontline providers and patients were often unaware of them, limiting their reach and effectiveness.

Cost barriers and regional disparities

The cost of insulin and glucose monitoring devices has emerged as one of the most pressing barriers, with families reporting that they spend 30–50% of their income on diabetes care. Frequent insulin stock-outs in public hospitals force patients to buy expensive, unregulated medicines from private pharmacies.

A caregiver from a lower-income household shared that “the Government hospitals provide insulin only in limited stock, and there is no guarantee it will be available when we need it. We have to buy it from private pharmacies, which cost almost half of my monthly income.”

Un-affordability leads to insulin rationing, especially in lower-income households. A participant acknowledged, “We sometimes reduce the insulin dose to make it last longer because we can’t always afford to buy more.” Participants also noted that such practices disrupted glycemic control and sometimes led to health complications that required emergency care.

These financial burdens are compounded by geographical disparities in healthcare access, where rural and semi-urban areas often lack specialized diabetes clinics and endocrinologists. Participants reported that PwT1DM often travel 80–100 km or more to reach tertiary hospitals, often on a monthly basis. For children, caregivers shared that this requires missing school and parents losing daily wages or taking leave from work, which adds further economic strain.

Insufficient insulin supply and diagnostic services

The irregular supply of insulin in government hospitals, particularly in rural and semi-urban areas, remains a persistent challenge, forcing PwT1DM to turn to private pharmacies, which are often expensive. This financial burden results in irregular insulin use and poor glycaemia control, increasing the risk of diabetes-related emergencies such as DKA.

A district hospital physician noted that “We receive insulin in unpredictable batches. When supplies run out, PwT1DM has to buy them from outside, which many cannot afford. We need a better system to ensure a continuous and predictable stock of insulin.”

Many PwT1DM receive HbA1c tests and continuous glucose monitoring devices, glucose testing only during emergency visits, rather than as part of routine diabetes management, increasing the likelihood of hospitalizations. The use of regular HbA1c tests and continuous monitoring devices is often a rare phenomenon due to financial constraints and a lack of awareness. These are often tested on patients only during emergency situations and are not part of regular monitoring activity.

A government health official highlighted that “We focus on immediate treatment rather than long-term management. Without regular monitoring tools like HbA1c tests, we are treating diabetes blindly, which leads to complications.”

rural-urban disparities and health infrastructure gaps

The geographical disparity in diabetes care is another major health system constraint, particularly for rural populations, where specialized diabetes clinics and endocrinologists’ care are extremely limited. Associated transportation costs, wage loss, and logistical challenges lead to missed appointments and inconsistent treatment.

A mother from a remote village shared her frustration that “For fever or infections, we visit the local clinic, but for my child’s diabetes, we must travel to the city. The cost of transport is almost as much as the medicine itself. Sometimes we skip appointments because we just can’t afford to go.” Another caregiver echoed this concern: “My husband has to miss work to accompany us to the hospital. That means two days without wages. We try to combine visits, but that’s not always possible with diabetes.” These constraints often result in delays in insulin administration, missed follow-ups, and irregular glucose monitoring. A young girl with T1DM added: “We wait until it’s really bad before going to the city. Otherwise, it’s just too expensive and tiring.”

A Doctor working in a rural PHC acknowledged that “We see very few TIDM cases, and most of us are more familiar with type 2 diabetes mellitus (T2DM). Without endocrinologists, we do our best, but sometimes, by the time a child reaches a specialised centre, their condition has worsened.”

Economic and psychological strain on families

Families often must prioritize medical expenses over other household needs, affecting the education and well-being of non-diabetic siblings. Many caregivers, particularly mothers, are forced to quit their jobs or reduce their working hours to provide full-time care.

A mother of a T1DM adolescent shared that “I had to leave my job because my son needs constant care. Now, we are struggling financially, and sometimes I worry about whether we will have enough money to buy his next insulin dose.”

A parent shared that “The diagnosis was shocking. It took us a while to accept that our daughter would need daily insulin for the rest of her life. We had to quickly learn how to administer insulin and plan meals around her condition.”

The psychological burden of T1DM extends to children and adolescents, who frequently experience anxiety, self-blame, and social isolation due to their dietary restrictions and dependence on insulin. A 14-year-old boy with T1DM stated, “I feel guilty every time my parents struggle to buy my medicines. Sometimes, I think it would be easier if I weren’t sick.”

The financial and emotional burden on families emphasizes the critical need for systematic interventions, such as incorporating social protection schemes, to ensure accessible and affordable T1DM care.

Gendered barriers and social stigma

A girl shared that “My family told me not to talk about my condition outside because they were afraid that I wouldn’t find a husband.” Even when she needed medical care, her family hesitated to take her to the hospital. This reflected a broader pattern among families, particularly in rural and traditional settings, where concern around marital prospects led to silence or secrecy about girls’ health conditions.

These gendered restrictive norms limit the educational and career opportunities, either discouraging them from pursuing higher studies or a job.

Another PwT1DM expressed that “I wanted to study further, but my parents said managing diabetes would be too difficult if I moved to another city for college.”

Families often prioritize the medical needs of male members over girls, leading to inadequate or delayed care. A caregiver admitted that “We try to manage her condition at home because taking her to the doctor frequently is difficult. We have to think about our son’s future, too.”

These gendered barriers have severe implications for girls’ reproductive health, mental well-being, and long-term independence, especially in traditional and rural communities. These social stigma leads to isolation, bullying, and discrimination for PwT1DM in school and workplaces.

A 19-year-old college student with T1DM noted that “During exams, I needed to take breaks to check my sugar levels, but my teachers thought I was making excuses. I stopped asking for help because I didn’t want to be treated differently.” The impact of mental health on discrimination and social stigma is profound, with studies showing that adolescents with T1DM exhibit a twofold elevated probability of developing anxiety and depressive disorders compared to their non-diabetic peers.

Limited training and misdiagnosis risks

One of the issues in medical education curricula is the inadequate emphasis on T1DM. While T2DM is extensively covered in medical curricula due to its high prevalence in India, T1DM is under considered, which leaves the General practitioners (GPs) and primary-care physicians in the country under trained and ill-equipped to diagnose and treat T1DM cases accurately.

A Physician from a government district hospital admitted that “In medical school, we learned a lot about T2DM, but T1DM was barely covered. Many of us rely on general knowledge, which may not always be enough. This may lead to misdiagnoses, especially in young children.”

Consequently, this knowledge gap may lead to inappropriate use of oral medication in place of insulin, which may result in late initiation of correct treatment. In addition, a lack of standard treatment guidelines may result in poor glycaemia control and trigger complications such as DKA, which may add to the financial burden on families. Also, early symptoms of T1DM, like increased thirst, frequent urination, and weight loss, often mimic Tuberculosis and urinary tract infections in regions where these are of high prevalence.

Gaps in PwT1DM counselling and long-term care

Even if an accurate diagnosis is made, the provision of comprehensive, patient-centric T1DM care is hindered by gaps within the healthcare system. High outpatient loads, a workforce shortage, and time constraints hinder doctors in providing comprehensive care. Poor diabetes counselling services impact treatment compliance and long-term outcomes.

A physician at a government hospital highlighted that “Most of the time, we prescribe insulin and move on to the next patient. We won’t have time to provide detailed counselling on diet and lifestyle. Many patients find out for themselves on their own.”

Lack of adequate counselling often leads to poor compliance, with many failing to take insulin consistently due to misconceptions, fear of injections, and cost issues.

Provider noted that “Many patients believe insulin injections are the last option and hence hesitate to start therapy.”

This hesitation is compounded by the family’s limited understanding of the dietary modifications necessary for maintaining stable of blood sugar levels. A mother expressed: “We don’t know which food is safe for our child.” This is underscored by the importance of diabetes education and counselling to enhance patient outcomes.

Shortage of diabetes educators and lack of infrastructure for PwT1DM support

In India, most Government hospitals lack a dedicated diabetes educator, even at tertiary hospitals. A practising endocrinologist from a private tertiary hospital stated that “In urban centres, patients have access to dieticians, diabetes educators, and multidisciplinary teams. However, in rural areas, primary care doctors and nurses are often expected to perform a wide range of tasks without additional training.”

Nurses and health workers often lack formal training in diabetes counselling, leaving them ill-equipped to provide guidance for PwT1DM. Hence, PwT1DM are left with a choice to rely on informal sources of information, which may lead to misinformation or an approach to alternative treatment

A HCP confirmed that “Many patients receive advice from unverified sources, which leads to confusion and improper management of their condition.”

With this unreliable information, often PwT1DM end up in hospitals during emergencies rather than engaging in regular monitoring and guidance. A medical officer noted that “We often see diabetes patients coming with complications, as they don’t attend regular health checkups.” These issues underline the need for structured diabetes education and periodic follow-up at the primary healthcare level to improve patient outcomes.

Emotional and psychological burden on healthcare providers

Apart from structural limitations, HCPs also experience significant emotional stress in managing T1DM cases. Physicians working at government hospitals and in rural areas often feel frustrated and helpless while treating young PwTIDM who struggle with insulin affordability, family support, and emotional issues.

A paediatric endocrinologist from a private medical college shared that “We often see children come with severe complications because they can’t afford insulin or didn’t understand the importance of daily injections. It’s heartbreaking to see such situations.”

Many physicians express their helplessness to help financially disadvantaged families who can’t afford insulin. A Government doctor shared, “We see families struggling to afford insulin, but there is little we can do beyond prescribing it. There are no subsidies or support programs in place.”

Additionally, HCPs have a dual burden to address both medical and psychological issues of PwT1DM, as mental health services are lacking. A physician noted that “T1DM individuals come to us not only for diabetes management but also for anxiety and depression issues. We are not trained mental health professionals, but we have no choice but to counsel them.”

With high patient loads at government hospitals, a single doctor seeing up to 100 patients per day may lead to severe burnout.

A HCP expressed that, “We are overwhelmed. We hardly have time to explain insulin use properly, let alone the emotional stress these families face.” These issues underscore the need for a financial support program, integrated mental health services, and workforce expansion to mitigate HCP burnout and enhance patient care.

Perspectives on state-subsidized insulin programs

One of the most impactful and immediate solutions is the implementation of state-subsidized insulin programs to reduce the financial burden on families. According to a few respondents, some Indian states have piloted such initiatives by ensuring the availability of free or subsidised insulin in public hospitals. While these efforts reflect an attempt toward universal access, participants noted that they remain limited in both scope and consistency of implementation across the states.

A policymaker emphasised the importance of scaling such initiatives at the national level, stating, “We have seen successful state-level programs making insulin affordable, but we need a national-level strategy to ensure uniform access.”

Participants suggested that a nationally coordinated insulin subsidy could be integrated into Ayushman Bharat, a public health insurance scheme, ensuring PwT1DM consistent access to insulin, especially from lower-income backgrounds. They also recommended regulating private sector insulin pricing to prevent excessive mark-ups that make insulin unaffordable for many.

Stakeholder perspectives on gaps in primary healthcare capacity for T1DM

This study highlights the urgent need to expand the capacity of PHCs and district hospitals to provide comprehensive care for T1DM. According to respondents, most PHCs lack trained endocrinologists or medical officers who are adequately trained in T1DM, making diabetes care primarily inaccessible to rural populations. One policy stakeholder noted, “We cannot expect rural patients to travel long distances to tertiary hospitals for routine diabetes care. Strengthening PHCs is the only way to ensure continuity of treatment”. A healthcare administrator highlighted that “We have seen how CHWs have been instrumental in TB and HIV programs. A similar approach in diabetes care could reduce the burden on specialists and improve patient follow-up.”

These views reflect a shared belief among respondents that the current health infrastructure is inadequate and that decentralising diabetes care through PHC-level capacity building may help address service gaps.

Stakeholder perspectives on digital health tools for enhancing T1DM care

Participants across stakeholder groups shared mixed views on the role of digital health tools in addressing care gaps for T1DM, especially in rural and underserved communities. Some healthcare providers have noted that mobile health (mHealth) applications and telemedicine platforms can support routine monitoring and improve access to specialists. One healthcare professional stated, “Telemedicine can help bridge the gap for patients in remote areas who struggle to access specialised care.”

Other suggestions included the use of automated reminders for insulin doses and digital health education modules to enhance adherence and self-monitoring, especially among adolescents. However, these ideas were accompanied by concern around feasibility.

A policy stakeholder highlighted that “While digital tools have great potential, we need better training and support systems for both patients and HCPs to ensure effective implementation”. Participants also identified challenges, including inadequate digital infrastructure in rural areas, low smartphone ownership, and the additional cost burden that may arise from mobile data usage or accessing telehealth platforms. These findings suggest a balance of optimism and caution in adopting digital interventions, with stakeholders emphasizing the need for low-cost, user-friendly platforms that are tailored to the realities of low-resource settings.

Stakeholder views on policy integration: embedding T1DM in national health programs

This study highlights a critical policy gap in India’s healthcare framework, as T1DM remains largely unaddressed in the NPNCD, unlike T2DM.

A policy stakeholder noted that “T1DM is often overlooked in national programs, leaving patients without essential support for insulin access and regular monitoring.”

HCPs emphasized the need for the expansion of NPNCD to explicitly include T1DM-specific care, with a dedicated budgetary allocation for insulin and glucose monitoring services in public health facilities.

One caregiver, expressing frustration over the financial burden, said, “We have to pay out of pocket for every test and insulin refill. If these were covered under public health schemes, it would alleviate many of our struggles”.

Additionally, the study revealed the gendered impact of T1DM, with adolescent girls facing unique social barriers related to marriage, education, and stigma.

An HCP emphasized the importance of policy interventions that address these disparities, stating that “Girls with T1DM are often discouraged from higher education or marriage.” Policy changes must consider the specific needs of individuals to ensure equitable access to care. These findings highlight the urgent need for comprehensive policy reforms that integrate T1DM into NPNCD, addressing both medical and socio-economic challenges faced.

Perspectives on community-based and peer-support diabetes management

This study highlights the potential of community-based interventions in improving self-care practices, reducing stigma, and providing psychosocial support for PwT1DM. Participants emphasised the importance of peer support groups, where PwT1DM and their caregivers share experiences and strategies for disease management.

A young participant shared that “Talking to others who have T1DM helped me realise I’m not alone.” I learned how to manage my insulin more effectively and cope with stress. Caregivers also found these groups beneficial, as one parent noted, “Before joining, we were overwhelmed and confused, but now we feel more confident in managing our child’s condition.”

The study revealed that peer-led interventions improved emotional well-being and treatment adherence by fostering a sense of belonging and shared understanding. A healthcare professional (HCP) highlighted the significance of such initiatives, stating, “When PwT1DM see others successfully managing T1DM, it motivates them to adhere to treatment and take control of their health.” These findings underscore the need to expand peer-led support models across India to mitigate the psychological burden of T1DM and foster community resilience.

Stakeholder-specific solutions framework for T1DM management in karnataka

Findings from this study underscore the need for a multi-tiered approach to address the challenges in T1DM management effectively. In response, a stakeholder-specific framework has been developed, providing a clear delineation of roles across the health system, providers, and community stakeholders. This framework emphasises policy integration, strengthening the healthcare workforce, and community engagement, ensuring a sustainable and patient-centred response to T1DM. (Table 3) This structured framework bridges systemic gaps by linking challenges with actionable interventions tailored to each stakeholder. By ensuring coordinated efforts across policy, healthcare delivery, and community-level engagement, this approach enhances the accessibility, affordability, and quality of T1DM care in Karnataka.

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Table 3. Suggested stakeholder-specific solutions framework for T1DM in Karnataka.

https://doi.org/10.1371/journal.pgph.0005129.t003