This study is an exploratory (29) descriptive (30) qualitative research involving data collection through semi-structured interviews and focus-group discussions conducted among persons with diabetes, hypertension, or both in outpatient settings in Malappuram, Kerala.

We conducted this study in purposively selected four FHCs of Malappuram, Kerala, from September 2022 to March 2023. Notably, all these health centers underwent a transformation in the initial phase of the Aardram mission in 2017. Malappuram, a northern district in Kerala, has a population of 4,112,920 (31). Malappuram was among the first districts in Kerala where the National Program for NCDs was implemented, and the community-based palliative care model for NCD was piloted in 1996 (32). A recent study in the district reported an NCD-multimorbidity prevalence of 39.8% among people seeking care from FHCs. Notably, the prevalence was higher in men (42.6%) than in women (38.1%). Hypertension and diabetes were the predominant coexisting chronic conditions (33). Malappuram is divided into 15 health blocks, with 59 fully functional FHCs implementing the national program for preventing and controlling non-communicable diseases (NP-NCD) across these blocks (33).

FHCs provide a range of services--- including health promotion activities, screening, laboratory services, and outpatient management for patients with diabetes and hypertension under the NCD program. The state has recently initiated the population-based screening of NCDs and risk factors (26), facilitated by Accredited Social Health Activists (ASHAs) and (JPHN), and suspected cases are referred to medical officers at FHCs. Patients requiring specialized care are referred to NCD clinics in community health centers or district hospitals. Additionally, the program offers free medicines for diabetes and hypertension at these facilities, with patients receiving their prescribed medications every month following consultation at the FHCs. Electronic health records and information systems at the patient level are being introduced in these centers (34).

The study population included adult individuals living with confirmed diabetes/hypertension or both, regardless of the disease stage or control status, in four FHCs in the Malappuram district. Purposive sampling (35) was used to identify eligible participants, following inclusion criteria: adults (18 years of age and older) seeking healthcare from public facilities or both public and private healthcare facilities for a minimum of six months. The assistance of local community health workers facilitated the identification of participants.

In the first phase, semi-structured interviews were conducted face-to-face (36) with twenty adult participants. RR conducted all interviews in Malayalam using topic guides (Supplementary material S1). Pre-testing of the topic guides was undertaken before data collection. Each selected respondent was interviewed in a calm setting within health facility premises. All interviews were audio-recorded, and their duration ranged from 20 to 60 minutes.

We conducted one focus group discussion (FGD) (37) with six adults in the study area during the second phase. A heterogeneous group was selected for the FGD with different control statuses – achieved, not achieved, and taking insulin/oral hypoglycaemics or both, diagnosed but did not initiate the treatment. An experienced social worker and a junior public health nurse identified and recruited eligible participants for FGD. A topic guide was used to introduce different themes during the discussion. Basic demographic details like age, gender, marital status, education, and occupation were collected from each participant. Topics encompassed patients’ experiences of living with a chronic illness, health care utilization, and challenges in accessing health care. The FGD was audio-recorded and lasted for 60 minutes.

RR translated and transcribed all the interviews. Transcripts were checked multiple times to minimize mistakes made during transcription. Participant recruitment concluded following thematic saturation (meaning the researchers collectively determined that additional interviews were unlikely to yield new insights or information on the subject) (38). In total, 26 people participated in the study.

The analysis of interview transcripts and fieldwork notes employed a thematic analysis approach (39). A coding framework was developed after multiple readings of the transcripts and notes (40). This framework was systematically applied to the dataset with attention to recurring codes and their clustering around specific contexts. The coded data were organized to facilitate thematic interpretation. Ongoing discussions among all authors informed this analytical process, with consensus achieved through iterative reviews of codes and themes. Emphasis was placed on discerning similarities and differences across participants’ data, aiming to construct an explanation of the findings. Notably, any deviant cases were scrutinized to enhance the trustworthiness and rigor of the qualitative analysis (41).

The thematic framework derived from this analytical process closely aligns with the conceptual framework proposed, which focuses on the patient’s ability to access healthcare services (42). However, it is important to note that this framework was not applied as an a priori model for the research; instead, it was introduced in a subsequent stage to inform further analysis of patients’ health-seeking pathways and to explore perceived barriers to care among these healthcare users. The Levesque framework encompasses different stages of healthcare-seeking pathways, providing a valuable lens for examining the narratives of the study participants.

The patient journey for NCDs can be structured into five stages: awareness, screening, diagnosis, treatment, and adherence (Figure 1) incorporating rehabilitation (43). The accessibility of services shapes the patient’s journey. Levesque et al.’s access-to-care model served as our conceptual framework to examine the factors influencing access to care at both the health system and population levels. The model examined healthcare access across five dimensions: approachability, acceptability, availability and accommodation, affordability, and appropriateness. The above-mentioned access dimensions are influenced by the patient’s ability to perceive, seek, reach, pay, and engage. Access results from the interplay between supply and demand dimensions within the continuum of care, spanning from individuals’ recognition of health needs to healthcare outcomes (42).

Approachability refers to the “ability of individuals with healthcare needs to identify, to seek information on the existing forms of services and perceive their potential impact on their health” (42). Some participants said they were provided sufficient information on the services available in health facilities through community health staff like ASHAs and JPHNs. Few participants recalled outreach screening activities for diabetes and hypertension conducted in public spaces like Anganwadi’s in their area. However, many patients also reported several other sources of information available to them besides those provided by community health workers and doctors. For instance, patients gained prior knowledge through personal experience from family members, friends, and media. Patients reported these sources provided information on lifestyle changes, medication adherence, etc.

Participants’ ability to perceive the need for care was determined by factors such as patients’ knowledge about health conditions (perception of risk), age, education, and beliefs related to health and illness. Ensuring timely access to healthcare services and optimal adherence to long-term treatments relied on patients’ understanding of their chronic condition when symptoms arise. Most of the patients reported being aware of hypertension and diabetes before diagnosis. However, participants reported sub-optimal knowledge of preventive measures and treatment needs. Older women interviewed in the study were unaware that hypertension is usually asymptomatic, and there was limited knowledge of potential outcomes. When asked what causes hypertension, one patient interviewed reported that stress causes hypertension. Some of the participants failed to understand their symptoms were indicative of diabetes and hypertension and that addressing their condition might entail more than just making lifestyle changes; instead, it may require long-term treatment as well. Some participants also believed that chronic diseases like diabetes and hypertension only impact older adults.

Instances were reported when patients did not receive sufficient information and support from the healthcare field staff to develop an adequate understanding of their condition, even after being suspected of diabetes or hypertension, in screening camps. Inadequate knowledge about their conditions led these participants to wait until their conditions were no longer manageable, leading to delays in seeking care.

In general, when assessing the patients’ views in our study on diabetes and hypertension, the younger individuals minimized its importance. In contrast, mostly the older group of patients acknowledged the severity of the condition and sought treatment.

This theme addresses “the social and cultural factors that affect patient’s ability to receive and accept healthcare services” (42). Our conversations showed that study participants desired FHCs to function as health facilities catering to minor health concerns. There was a general acknowledgment among people that FHCs were not equipped to handle complex medical conditions. As a result, people did not anticipate that FHC staff would address all health issues. Moreover, patients did not expect to get integrated care for managing multiple chronic conditions from FHCs.

Despite the nature of the visit being routine follow-ups, some patients preferred specialist services if their budget allowed. However, the availability of free medications and services and proximity to the residence enticed them to seek care from the FHCs.

We found that private care with specialists was predominantly reserved for managing immediate medical issues or complications arising from their conditions. The participants also commonly believed that higher-level hospitals would offer superior healthcare due to enhanced diagnostic capabilities and skilled medical professionals. Most of the patients had consulted multiple providers since their initial diagnosis.

The participants’ social background and trust in the healthcare system affected their ability to access healthcare services. The degree of trust was influenced by their personal (or social network’s) prior encounters with services, the reputation of selected health facilities, and the belief that higher-level health facilities offered better service quality. Prescribers’ attitudes influenced trust in treatment. People had preconceived notions about the doctors and other staff. People often complained that doctors in FHCs failed to give them sufficient attention and respect. The perception of the government doctors’ indifferent attitude stemmed from the belief that they were not incentivized or paid extra at government facilities. Patients also believed that in private practice, doctors spent time and prescribed medications that were more effective in improving blood sugar levels and controlling blood pressure, enhancing the perception of better healthcare outcomes under private care. Thus, in addition to expertise in clinical skills, patients valued the doctor’s communication style. On the other hand, we observed a decline in trust in a physician due to an unfavorable experience, leading a participant to abstain from using health services provided by that doctor.

Many participants were accustomed to pursuing alternative therapies, such as traditional medicines, rooted in their cultural practices. Our interviews with some patients revealed that they discontinued the prescribed allopathic medications and adopted traditional medicines without any formal advice after achieving the control status. Some patients considered medicines as chemicals with potential side effects and resorted to alternate systems of medicines. While others developed a fear of becoming dependent on medications lifelong, leading them to explore alternative treatments to reduce reliance on medicines provided by the facility. Previous lack of improvement with allopathic treatment and success stories from people who have experienced positive results with alternate treatment prompted a few to consider these options.

This theme concerns “the extent to which people can avail healthcare services” (42). Few participants highlighted that the remote geographic location of the health center hindered their access to healthcare services. Private transportation to healthcare facilities was expensive and challenging for older patients, restricted by the distance they could travel.

The capability of the older participants to reach the facility was influenced by the presence of a family member or neighbor who could accompany them to the healthcare facilities.

Most respondents emphasized that in the past few years (due to the restructuring of primary care services under the Aardram mission), they have experienced improved healthcare services through upgrades in infrastructure, greater availability of doctors and laboratory facilities, and the introduction of evening out patients’ departments (OPDs). While expanded provision of the services was positively viewed to enhance accessibility, respondents noted the major deficiencies in service adequacy. A prevailing concern among most patients was the irregular availability of free medicines, leading to challenges in adhering to their prescribed treatment. Several patients reported that the shortage of drugs compelled them to personally bear the cost of purchasing them from local pharmacies. Furthermore, few patients expressed dissatisfaction with the facility’s restricted range of treatment options, often limited to just two or three medications for addressing their medical conditions.

Patients who had multiple NCDs described intensified symptoms associated with a lack of access to medicines. One patient talked about the challenges she faced in accessing a reliable supply of insulin.

In some cases, health services were available to patients, but this did not translate to services being accessible to patients. For instance, in health centers, laboratories and pharmacies were available at the same location. Still, these services were often unavailable due to a lack of supplies, medicines, or human resources. Most participants said the public health facility was usually crowded, with substantial waiting times and an inconvenience in managing fasting tests due to the overcrowding and the timing of lab procedures. Consequently, many patients resorted to visiting private clinics or laboratories to monitor their glucose levels, incurring additional time and expenses. Almost all the patients voiced their dissatisfaction with being asked to return to FHC every month to obtain medicines, finding it inconvenient and burdensome.

This theme encompasses the economic capacity of people to afford healthcare expenses. Despite medications being free at public health facilities, the recurring scarcity of medicines and the need for frequent doctor visits were deemed financially challenging for many. This financial barrier had two aspects: the expense of regular medications and the cost of immediate prescriptions during symptom exacerbations, requiring hospitalizations, antibiotics, etc. Participants perceived that private health facilities offer superior service quality, leading many participants to choose out-of-pocket expenses for these hospitals despite the financial strain. Most respondents reported they lacked any form of health insurance.

The burden of out-of-pocket spending was highlighted as a core issue for older adults with chronic illnesses. Out-of-pocket expenses and financial constraints resulted in treatment gaps and often resulted in making choices about which medications to buy following a doctor’s prescription.

Participants emphasized that time spent on all-day travel hindered patients from working, earning an income, or attending to family responsibilities. Young male patients reported discontinuing monthly visits to public facility doctors due to the substantial time investment.

Appropriateness refers to “how well services align with client requirements, including timely delivery, a thorough evaluation of health issues for accurate treatment determination, and the technical and interpersonal excellence of services” (42).

The long-term management of diabetes and hypertension demands consistent adherence to a treatment plan. Various factors affected the participants’ ability to follow their extended management plan. Long-term care involved regular hospital visits for obtaining medications and during worsening of symptoms. However, not all patients in our study could manage regular visits due to affordability issues, which interfered with adherence. The patient-provider relationship was an important factor related to adherence and patient satisfaction. Our interviews with patients revealed trust was is fostered when providers see patients as individuals, not merely cases. Additionally, displaying acceptance and respect contributed to nurturing this sense of confidence. Patients also expressed their frustration while reporting that they often left OPDs without getting the information they wanted, feeling overwhelmed and unable to understand the information provided. It was evident from patients’ accounts that they lacked preparedness to manage their health conditions when experiencing symptoms like pain and fatigue. These factors contributed to feelings of uncertainty about their future health. However, a few patients felt capable and confident in managing their conditions. They acquired skills through diverse experiences—some from their encounters and others from both within and outside the healthcare system. Patients with positive experiences in managing their conditions exhibited greater motivation to remain committed to long-term care.

People with multiple chronic conditions often required multiple healthcare providers, which were rarely coordinated with one another. Most of the interviewed patients with multimorbidity reported visiting different doctors and usually received conflicting advice. A patient in our study felt conflicted because private doctors criticized her for using medications from government healthcare providers. Private doctors claimed these medicines might be outdated or of poor quality. This created confusion and uncertainty for her when deciding whom to trust for her healthcare. Furthermore, some patients during discussions shared their belief that any medicines received for free could be of lower quality.

Most patients believed that their medical conditions were both progressive and permanent, with little influence from either themselves or their doctors on their future prognosis. This perspective made it difficult for them to grasp the concept of preventive care and how it could benefit them. Patients adhered to the advice they perceived as beneficial, pragmatic, and able to sustain them. Some patients mentioned that they were more inclined to follow medication prescriptions at the time of diagnosis. However, as they gained more experience and knowledge, they became discerning about the advice they followed and adjusted it to fit their situations. Interestingly, patients had received dietary advice from various sources outside the health center, with the most common sources being private doctors, community members, and social media.

Patients dealing with multiple health conditions in our study emphasized the influence of pill burden on their adherence to therapy. They found it challenging to cope with a substantial number of daily tablets. Moreover, the quantity of tablets also appeared to affect how patients subjectively viewed their health status.

The study has several limitations. Firstly, in its emphasis on capturing patients’ viewpoints, the study did not incorporate the healthcare workers (supply side), which could have provided valuable insights. Secondly, although efforts were made to include equal representation of male and female participants, most respondents were women, reflecting the predominant population seeking healthcare in the state. Thirdly, the quality of care provided to the patients and the resulting health outcomes were beyond the scope of the study.

A key strength of our study is that we have considered the most prevalent NCDs, like diabetes and hypertension, to explore how patients seek care for chronic conditions in Malappuram. Although variations may exist among different illnesses, experiences are likely similar due to the current state of the healthcare system in Kerala and India. Primary care services are weak, and health systems lack capacity to address chronic illnesses. Secondly, our prolonged engagement within the study sites, as we regularly visited the facilities and stayed in the local community, enabled us to obtain data with rich insights into how people experience care. Thirdly, using Levesque’s access framework in the analysis enhances the potential for replication of this study in other contextually similar settings.

Preventing the rising burden of NCDs is challenging as it necessitates addressing the underlying social determinants of health (70). Moreover, the organization of care for individuals with NCDs is intricate and resource-intensive, and multiple concurrent chronic conditions, known as multimorbidity, further complicate matters (71–74). It is important to recognize that the roots of NCDs are deeply entrenched in society’s social, political, and economic structures.

Unfortunately, it appears that those shaping current policies and resource allocation are either unaware of or choose to overlook the realities on the frontlines of healthcare. Physicians often find themselves bridging the gap between treating individual illnesses and meeting the needs of patients grappling with multimorbid NCDs. Reachable and reliable care and support must be ensured at the initial point of contact. Healthcare professionals must deliver attentive support tailored to individuals’ perceived needs, incorporate self-management support to influence patients’ behavior, and maximize the use and effectiveness of community service. Furthermore, we need a more comprehensive approach to healthcare policy that recognizes the interconnectedness of NCDs and the social determinants that affect their occurrence and management. Such a shift in policy and resource allocation is essential to effectively address our society’s growing burden of NCDs.