A total of 21 stakeholders participated in the study. More than half of the participants (62%) were females. Among 14 healthcare providers (HCPs), 11 were community health workers (included ANM and ASHA). Five patients and two district-level officials also participated (Table 1).
Table 1: Characteristics of participants
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Gender
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Category of stakeholder
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N (%)
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Male
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Female
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Healthcare provider n (%)
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14 (66%)
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1
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13
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Community health workers
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11
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0
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11
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Physicians (2 Primary care physicians & 1 nephrologist)
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3
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1
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2
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|
|
|
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CKD Patients n (%)
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5 (24%)
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3
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2
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District level official n (%)
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2 (10%)
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2
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0
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Total n (%)
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21 (100%)
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8 (38%)
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13 (62%)
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The key themes as per Levesque et al. access to care framework dimensions are presented in Figure 1.
Approachability and ability to perceive: Stakeholders’ awareness & knowledge
Approachability and ability to perceive refers to the healthcare providers’ and patients’ opportunities to identify CKD services that exist and can be reached. (32) Tied to this approachability concept is awareness, which relates to the ability to perceive the need for care. The important themes identified as barriers and facilitators to approachability and ability to perceive were:
Barriers
Poor knowledge & awareness of CKD among HCPs and patients
A common theme across participants’ accounts was poor knowledge and awareness of CKD. As one healthcare provider reported, there was a general “lack of awareness among patients and even doctors.” Primary care physicians reported having limited knowledge and confidence in managing early CKD. Although the primary care physicians were familiar with the terminologies such as “urea” and “creatinine,” they did not proactively screen for CKD, nor did they manage patients diagnosed with CKD, rather the latter were referred to specialist centres.
Likewise, the CHWs had low awareness of CKD in terms of the risk factors, and detection and complications of CKD. They had the misconceptions that CKD screening required multiple tests that were not available in the primary care setting. Since the CHWs’ existing job scope centred on mother and child health and communicable diseases, it further constrained them from providing CKD-related services.
Low-risk perceptions among patients resulting in delayed diagnosis
Overall, most of the stakeholders perceived that the burden of CKD had increased over the years, and “many people around them are suffering from ESKD.” Many healthcare providers reported a rising prevalence of diabetes “in the villages.” Nonetheless, the perceived increase in the prevalence of diabetes did not translate into the uptake of screening for CKD, and most patients were not aware that diabetes was a major cause of CKD. The above-mentioned poor perceived risk of CKD appeared to contribute to delayed diagnosis of CKD, with participants recounting experiences from family or friends who were “diagnosed late” when the kidney was completely damaged.
Inadequate patient-provider communication regarding CKD
Some patients expressed that they received insufficient information on CKD from healthcare providers, which undermined seeking and acquisition of knowledge. Conversely, healthcare providers frequently identified patients’ low health literacy and acceptance of CKD screening and treatment as major challenges for effective communication.
Potential Facilitators
Increasing awareness of CKD
Most participants strongly expressed the need to increase CKD awareness amongst both healthcare providers and patients. A “right place” and “right people” strategy was suggested to improve awareness. Most stakeholders recommended partnering with Anganwadi centers (rural centers for maternal and child programs) and schools to conduct screening and dovetailing diabetes and NCD awareness initiatives with established educational programs such as the information, education, and communication (IEC) of the World Health Organization, which presents an opportunity to improve awareness. Furthermore, outreach camps at “convenient” locations like the Anganwadi centres, mass media campaigns, and dissemination of printed pamphlets were also suggested by some as viable options for CKD health education.
Although participants opined that ASHAs could provide CKD education during their home visits, some felt this could be time-consuming, and could take valuable attention away from regular patient care activities.
Acceptability and ability to seek: Cultural norms
‘Acceptability and ability to seek’ refers to the cultural factors and norms that influence how populations accept the aspects of services provided (32). An important sub-theme identified in this domain was:
Barriers
Self-medication and use of informal medicines
Many healthcare providers reported that patients’ cultural beliefs and norms were often at odds with their clinical recommendations, thereby creating challenges with the management of CKD. The providers cited the use of alternative medicines by the patients to treat diabetes and CKD as one of the major barriers to the provision of quality CKD care. Indeed, patients reflected on self-medication or seeking non-traditional treatments from complementary medicine practitioners to treat their chronic health conditions.
Availability and ability to reach: Resources for CKD care at primary care level
‘Availability and ability to reach’ refers to the existence of health services for CKD (32) and is shaped by the availability of facilities and health resources. The sub-themes identified in this dimension were:
Barriers
Inadequate human resources
Many providers and government officials reported that primary care was largely directed towards maternal and child health, and thus “very little” resources were available for NCD. Although the basic management of diabetes was generally perceived to be sufficient, however comprehensive care including screening for microvascular complications was perceived to be inadequate primarily due to the lack of resources, including shortage of skilled and trained providers. Consequently, CKD patients were most often referred to the district hospitals. PHCs were unable to cope with the patient load. Most patients indicated being burdened from the general frustration of “staff shortage all the time”, and recounted experiences of crowding and long waiting times at the PHCs.
Shortage of medicines and diagnostic supplies
Many healthcare providers and patients reported issues related to the availability of medicines and diagnostic supplies related to CKD at PHC. The healthcare providers attributed the shortage of resources to increased patient load, while government officials expressed that there was occasional “disarray” in medicine supply. The scarcity of medications often resulted in patients having to purchase medicines out of pocket.
Potential Facilitators
Provision of CKD related supplies and HCP training
Most HCPs and patients expressed a strong need for improving CKD services and ensuring the availability of medicines, tests, and doctors including nephrologists at the PHC. Primary care physicians voiced the need for supplies and resources for CKD screening tests to be made available at PHC. In addition, some physicians also suggested dedicated clinic days for screening and evaluation of family members or friends referred by the CKD patients. Additionally, the need for training of primary care providers in CKD management was mentioned by a nephrologist.
Home visits by trained community health workers for CKD care
A theme running through the data was task shifting to ASHA to facilitate CKD care in rural communities. Patients recognized that home visits by ASHAs for CKD will be advantageous and minimize the inconvenience of traveling long distances for regular blood checks.
Many ASHAs were amenable to performing CKD related tasks during home visits and desired greater degree of involvement in the care of patients with chronic conditions. However, some expressed “a bit of fear” since they had no prior experience with CKD, and were apprehensive about “increase in workload” and “lack of time” HCP and government officials suggested the need for “skills training” for ASHAs. ASHAs were largely acceptable to the idea of vocational training, which, they felt, would empower them to provide relevant advice to patients.
Affordability and ability to pay: Cost of medicines and treatment
Ability to pay refers to the economic capacity of people to spend resources and time (32). With respect to CKD, the sub-theme emerged were:
Barriers
Financial burden due to CKD
Some healthcare providers believed that due to the patients’ fear of high cost, timely preparation for RRT was not feasible. It was commonly perceived that the poor are “unable to afford” treatment, and that “financial problems [associated with treatment] would break down poor man”. One patient undergoing dialysis voiced the need that “patients should get financial support”.
Appropriateness and ability to engage: Continuity of care
‘Appropriateness and ability to engage’ refers to the fit between services available and patient needs. (32) Tied to this domain are adequacy, quality, and system integration, which ensure continuity of services, and influence the ability to engage. The key findings in this dimension were:
Barriers
Inadequate mechanisms for CKD referral and follow up
Primary care physicians reported “referring” all patients with CKD to the specialists because the rural PHCs could not offer services for CKD. Although referral registers are maintained, there was lack of a mechanism for follow up of patients in primary care, which depended entirely on the patients if they visited the PHC “by themselves”. As reported by most patients, “there is no mechanism for follow up”.
Healthcare providers stated that the referral process for patients with ESKD needing RRT was considerably delayed due to difficulty in obtaining a specialist appointment. They mentioned that these delays in referral were associated with a shortage of beds in the hospitals relative to the high demand. Consequently, the waiting times for patients with ESKD to receive RRT were long. In addition, the problem of “distance” to receive treatment was reported as a barrier to CKD care by some and caused considerable dissatisfaction. There was no formal mechanism of communication between community healthcare workers and nephrologists.
Potential Facilitators
A system approach to care coordination
Healthcare providers recommended that a “system should be there” where patients with CKD are examined and appropriately referred to specialist. The primary care physicians reported that the education of doctors, and providing a systematic “follow-up” of referred patients was important for continuity of care, as these measures could support CKD care and improve medication adherence. Additionally, such a coordinated system could enable better patient satisfaction, if widely available, could improve CKD care.
M-health technology to improve CKD care
Most participants were supportive of m-health approach to CKD care. Participants perceived m-health to be “convenient,” “beneficial’, “feasible, and offers benefits of care at the doorstep saving time and resources.” Other perceived positive attributes of m-health technology were the potential to address gaps and enable sharing of records, patient information, and timely treatment.
However, some participants foresaw the complexity of implementing m-health due to “slow” internet connectivity and ‘illiteracy’ in rural areas. Some stated that m-health support would be futile if patients do not read the messages, and therefore needs to be tailored to the local language. One government official disagreed with the m-health approach voicing that efforts should be prioritised on addressing health systems barriers to ensure the community has access to quality primary care.
Table 2 provides a summary of themes, subthemes, and illustrative quotes.
Table 2: Summary of themes, subthemes with illustrative quotes
Key themes & subthemes
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Evidence
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Approachability: Stakeholders’ awareness & knowledge of CKD
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Barriers
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Poor knowledge & awareness of CKD among HCP and patients
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“Have little bit [of] knowledge in kidney disease because they [primary care physicians] do not know much beyond the urea, creatinine, because the reason behind is that once the kidney disease has been diagnosed, we refer them. We do not manage it at PHC level. If we manage, then our juniors will also learn. ” Physician 1, Male
“Actually we [patient & wife] did not know that this was a kidney problem. I had breathlessness, then we [patient & wife] came here [hospital] and doctor did some test. He found that creatinine is high then KFT was done, it was high, then doctor asked to get it [condition] treated, then he came to the kidneys, gave medicines, and pulled me for 2 years.” Patient 4, Male
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Low risk perceptions among patients resulting in delayed diagnosis
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“This was the problem with my sister in law, she had frequent problem in going to toilet, started bleeding in the toilet. As she went to treatment, they came to know that one of her kidney is completely damaged, and operation date was been fixed for renal transplant. But, she got expired two days before the operation was supposed to be done”- Community health worker (FGD participant), Female
“I had weakness and got hypertension in 2008. In September 2009 I lost weight suddenly. I thought that this would have happened because of some stress, but that was the first sign, which I had ignored. In March-April 2010, I started having lot of problems, like breathlessness, anxiety, I was unable to sleep. By May 2010, when problems increased, I got my test done, and in that creatinine, urea, etc were increased, it [CKD] was confirmed and I came to know like this”. Patient 5, Male
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Inadequate patient-provider communication regarding CKD
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They [doctors] said that your kidneys have a problem, and other than this they [doctors] did not say anything. Patient 1, Male
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Potential Facilitators
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Increasing awareness of CKD
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“Yes they [patients] should be given information! Until the public will not be aware, how will they know?” Community health worker 2, Female
Yes, it should be done, awareness should be spread, like for a patient or someone normal, they will know about their disease that what are the symptoms of disease, and then they [patients] will take more care and will go for continuous routine checkups. They must have awareness” Patient 2, Male
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Acceptability: Cultural norms & beliefs
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Barrier
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Self-medication & use of informal medicines
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“People don’t prefer going to a nephrologist. Rather they would be told by someone to have indigenous medicine, or if it is kidney disease, if somebody else consumed soda, and few days after drinking soda, the results come, in that 25 percent of his kidneys have stopped functioning.” Community health worker (FGD participant), Female
“My father takes medicine, it is Chandrprabha (Ayurveda medicine) and second one is capsules of defit. There was a program of MI [name] company, medicines came [bought] from there costing 5500-6000[Rupees], we have purchased it. My father takes it but I don’t.” Patient 2, Male
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Availability: Resources and manpower for CKD care at primary care level
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Barriers
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Inadequate human resources
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Like for chronic kidney disorders, at present in some centers, it’s [tests] not started yet, although it is going to be operational, the machine has been seen, there is a problem of AC or something, I exactly don’t know much. But it is not functional as it has to be kept in the AC [air conditioner]. The machine is needed to do test for creatinine, urea, etc. So, accordingly screening of chronic kidney disorders can be done here and also for blood glucose. So it will be done. Just the same problem remains of manpower shortage. Physician 1, Male
“For the test madam the staff is less. The main thing is of staff. If staff is complete, then there will be no problem, if the staff is less, then it [PHC] becomes crowded.” Patient 2, Male
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Shortage of medicines & diagnostic supplies
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“Our calculations are sometimes mismanaged, because we have to indent first. We order the medicines by indenting but if patients are increased then there is shortage of medicines.”- Physician 1, Male
“I go to doctor for check-up once in a month. He monitors weight, blood pressure and gives me the same medicine. Sometimes I buy it from market and sometimes he gives me.” Patient 3, Female
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Potential Facilitators
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Provision of CKD related supplies and HCP training
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“For that, at all PHCs and CHCs, treatment should be available there also. As for injections, tablets should be there, a pharmacist who should be available there 24 hours.” Patient 2, Male
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Home visits by trained community workers for CKD care
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“Our knowledge should be increased, like what sugar is and what happens if it increases. Thee more information [as part of training] is given it is better. I want to get further knowledge so that we can give it anyone else and it will be beneficial. “Community health worker 4, Female
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Affordability: Cost of medicines & treatment
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Barrier
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Financial burden due to CKD
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“They [dialysis patients] are unable to understand that what is happening, one such disease has happened and above that it costs 50,000 per month. From here begins the frustration of human, if someone can work on this then I think 90% of the problems will be solved. Most of the families are unable to come for dialysis three times a week. Patient comes only once a week, they have to take protein diet but they are eating pulse and rice only. I am living here in Delhi just for treatment. I came here for the transplant, but that did not happen and now I am on dialysis. So I am staying here in Delhi, transportation, food, dialysis, all costs a lot.” Patient 5, Male
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Appropriateness: Co-ordination and continuity of care
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Barrier
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Inadequate mechanisms for CKD referral and follow up
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We have a general OPD [out-patient department] register. It has separate part for the referral, like how many referrals had been done, how many are done here only. This way it is managed. Projects are being run by the government and if we have to notify something then we mention them separately and report separately. Everything else is done in the General OPD and for referrals, like we are unable to manage it (CKD), we refer them to General hospital. Physician 1, Male
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Potential Facilitators
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A system approach to care coordination
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“For their satisfaction they can get the facility around their area, because the district level becomes quite crowded. Even if any program runs for this, then we can follow-up them as well, at the primary level and secondary level also. There follow-up will be done in our area only, then they will not have to run here and there or shift anywhere else.” Physician 2, female
“System should be there where a kidney patient referred is being checked by MO [medical officer] sir and referred further accordingly” Community health worker (Participant 4-FGD), Female
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M-health technology to improve CKD care
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So, if you have a mobile app or some software in the computer and if you train them, how to use that it will be really helpful because a PHC doctor has to do a lot many activities apart from the clinical work. They do a lot of managerial work and time is very limited. So one day NCD people will they present them as NCD nodal officer, the next day RNTCP team come they represent as RNTCP person so he plays different roles. So if you assist him with a properly guided come portal in the form of a mobile app or a software, I think (in my personal opinion) they will be happy to have that” Government official 1, Male
If it [m-health technology based care] will be provided then people and anybody naturally will be benefitted.” Patient 4, Male
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