A total of 21 stakeholders participated in the study. More than half of 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
Characteristics
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N=21 (100%)
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Category
|
|
Health care providers
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14 (66%)
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Community health workers
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11
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Primary care physicians
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3
|
Patients
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5 (24%)
|
District level officials
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2 (10%)
|
Gender
|
|
Male
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8 (38%)
|
Female
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13 (62%)
|
The key themes as per Levesque et al. access to care framework dimensions are presented in Figure 1.
Five themes and 13 subthemes identified inductively, and construed as barriers and facilitators are detailed in Table 2.
Table 2: Themes, subthemes with key barriers and facilitators to CKD care
Domain:
Key themes
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Subthemes
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Barriers
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Facilitators
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Approachability: Stakeholders’ awareness & knowledge of CKD
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· Poor knowledge & awareness of CKD among HCP and patients
· Low risk perceptions among patients resulting in delayed diagnosis
· Inadequate patient-provider communication regarding CKD
|
· Increasing awareness of CKD
|
Acceptability:
Cultural norms & beliefs
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· Self-medication & use of informal medicines
|
|
Availability:
Resources & manpower for CKD care at primary care level
|
· Inadequate human resources
· Shortage of medicines & diagnostic supplies
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· Provision of CKD related supplies and HCP training
· Home visits by trained community workers for CKD care
|
Affordability:
Cost of medicines & treatment
|
· Financial burden due to CKD
|
|
Appropriateness:
Co-ordination and continuity of care
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· Inadequate mechanisms for CKD referral and follow up
|
· A system approach to care coordination
· M-health technology to improve CKD care
|
Approachability and ability to perceive: Stakeholders’ awareness & knowledge
‘Approachability and ability to perceive’ refers to the healthcare providers’ and patient opportunities to identify some form of CKD services that exists and can be reached (30). Tied to this approachability concept is awareness, which relates to knowledge and influences the ability to perceive the need for care. The important barriers identified in this domain were poor knowledge and awareness of CKD among healthcare providers and patients, low risk perception among patients with delayed diagnosis and inadequate patient-provider communication. Increasing awareness of CKD among healthcare providers and patients was deemed to be a key facilitator for improving access to CKD care.
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 nephrologist reported, there was a general “lack of awareness among patients and even doctors.”
The main issues are lack of awareness among the people and even doctors- they [doctors] are not screening for kidney disease among those with diabetes, hypertension. Physician 3, male
Primary care physicians reported that they had limited knowledge and confidence in managing early CKD. For example, although primary care physicians were familiar with terminologies such as urea and creatinine, they did not screen for CKD or were involved in managing CKD patients, and tended to refer cases to specialist centres.
Likewise, CKD awareness among CHWs was low in terms of not only general understanding of CKD, but also diagnosis, risk factors, associated complications and knowledge of patient management to prevent CKD progression. Since the CHWs’ existing job scope centred on mother and child health and communicable diseases, it further constrained the CHWs from providing CKD-related services. Many CHWs had misconceptions that CKD diagnosis required multiple tests that would not be available in primary care setting.
We do not have any such thing to check kidney disease like we can detect sugar level, fever is detected, BP is measured but there is no such system that immediately diagnoses kidney disease or tell kidney has stopped working. It [CKD] is being diagnosed in late stages after performing a number of tests. Community health worker (FGD participant), female
Low risk perceptions among patients resulting in delayed diagnosis
Overall, most stakeholders perceived a progressive increase in CKD burden in the community. Patients expressed that CKD had increased over the years and “many people around them are suffering from the disease.” Many healthcare providers reported an increasing prevalence of diabetes “even in the villages.” Nonetheless, perceived increase in the prevalence of diabetes did not translate into the uptake of the screening as patients were not aware that diabetes was a major cause of CKD. The lack of motivation for screening and management could be explained by the absence of symptoms and hence low risk perceptions of CKD.
They [patients] do not know that they have sugar, even if they get to know it, they don’t feel like to visit doctor for treatment they are not aware that if they get it checked they can get it treated. Community health worker 2, female
However, perceived low levels of individual risk or susceptibility to CKD often resulted in many recounted experiences from family or friends who were “diagnosed late” when the kidney was completely damaged. CHWs expressed that patients tended to be vigilant and more aware of acute infections than chronic conditions including CKD.
Inadequate patient-provider communication regarding CKD
Some patients felt that they received insufficient information on CKD from healthcare providers, which undermined seeking and acquition of knowledge. Conversely, healthcare providers frequently identified patients’ low health literacy and acceptance of CKD screening and treatment as a challenge for effective communication. The following quote illustrates the communication issues related to delayed diagnosis of CKD.
For kidney disease, I don’t know but for sugar they can do [tests]. Neither any kidney patient has come for test in my knowledge, nor do I know that kidney test happens here or not. Because no known [person) has come for test and I have also not ever got it done. Patient 2, male
Facilitator
Increasing awareness of CKD
Most participants strongly expressed the need to increase awareness of CKD amongst both healthcare providers and patients. A “right place” and “right people” strategy was suggested to improve awareness. For example, education sessions, outreach camps, mass media campaigns and dissemination of printed pamphlets were generally considered as viable options for education on CKD. Other suggestions included partnering with Anganwadi centers (rural centers for mother and child programs) and schools to conduct screening and combining diabetes and NCD awareness with other IEC (Information, Education, and communication) programs. Many healthcare providers suggested that meetings or camps for awareness related activities should be organized at a convenient place such as Anganwadi centers.
We can give more information from time to time, when such camps are organized and people will benefit [from the camps]. They [villagers] can gather in Anganwadi, and our outreach camps can be organized in the village, two times in a month. Many patients would come in the camp. Community health worker 3, female
Some participants suggested the provision of CKD education during the ASHA home visit, but others felt that such an undertaking would be time-consuming, taking valuable attention away from other patient care activities. A few government official saw the current national screening programs in villages as an opportunity to improve CKD awareness.
One of the things NPCDSS program is doing is lots of screening in the villages. In these six districts, what we do is we tie up with panchayat schools, Anganwadi centers and wherever possible we do and go [to do screening]. We have a regime for screening, and we do lots of screening so that itself is awareness. Government official 1, male
Acceptability and ability to seek: Cultural norms
‘Acceptability and ability to seek’ refers to the cultural factors that influence how populations accept the aspects of services provided (30), and are usually shaped by cultural norms. An important cultural barrier to the ability to seek care was self-medication and use of informal medicines.
Barrier
Self-medication and use of informal medicines
Healthcare providers reported challenges when patients’ cultural beliefs and norms were at odds with clinical recommendations. They noted the use of alternative medicines by patients to treat diabetes and CKD as a barrier to care. Indeed, patient participants reflected on self-medication or seeking non-traditional treatments from complementary medicine practitioners to treat their chronic health conditions. The following is a quote from a patient who reported taking indigenous medicines as well as allopathic medications for chronic conditions.
Yes, I took four injections [insulin] once, but now I take home remedies as well as allopathy medicines for sugar [diabetes] and as well as blood pressure. Patient 1, male
I do like this. If I eat sweet today then I will take both times English [allopathic] medicine on that day [today] after taking it [sweet], I will not use home remedy. The next morning I will stop English medicine and start home remedies. Patient 2, male
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 (30) and is shaped by the availability of facilities and health resources in rural communities. Key barriers identified in this domain are inadequate human resources, and shortage of medicines and supplies. Provision of CKD related services at primary care, training of HCPs and home visits by trained community health workers were perceived as facilitators.
Barriers
Inadequate human resources
Many healthcare providers and government officials reported that primary care in rural communities was largely directed towards maternal and child health, and consequently “very little” resources were available for NCDs. Diabetes management services were generally perceived to be sufficient while screening services for complications appeared to be lacking. Referring CKD patients to general hospitals was a common practice for primary care physicians due to the perceived lack of available resources. Further, shortage of skilled health professionals at different cadres in primary care were reported by both HCPs and patients. There were accounts to indicate that PHCs, some manned by a single doctor, were unable to cope with patient loads. At the same time, CHWs were felt to be burdened due to shortage of trained health workers. Accounts from participants also indicated general frustration of “staff shortage all the time.” Few patients reported crowding and long waiting times at the primary health facilities.
If the staff is less, then it becomes crowded... I can come here in only 2 minutes, but some [patients] come from outside [the village] with empty stomach having to wait for so long till his number arrives and that time the patient becomes hungry. Patient 2, male
Shortage of medicines and diagnostic supplies
Many HCPs and patients reported issues related to the availability of medicines and diagnostic supplies at primary health centers. HCPs attributed the shortage of resources to increasing patient load while government officials noted that occasionally, there was “disarray” in medicine supply. The scarcity of medication often resulted in patients having to purchase medicines out of their own pockets.
I go to the doctor for a check-up once a month. He monitors weight, blood pressure and give me the same medicine. Sometimes I buy it from the market and sometimes he gives me. Patient 3, female
Facilitators
Provision of CKD related supplies and HCP training
Most HCPs and patients expressed a strong need for CKD services including availability of medicines, test machines and doctors including nephrologists at both the PHC and emergency services. Creating a “system” where kidney patients or relatives can be referred on a particular day to the doctors was desired. Primary care physicians indicated the need for screening tests to be available at PHC as an important tool for diagnosis. Additionally, the need for training of primary care providers was mentioned by a nephrologist.
Training should be a key component to improve the screening for kidney disease and providing training at district hospitals to physicians to able to detect, manage [CKD]. Physician 3, male
Home visits by trained community health workers for CKD care
A theme running through the data was task shifting and the potential for AHSA’s role to facilitate CKD care in rural communities. The AHSA is commonly believed to be the “key person” in the rural communities and “backbone” for any program. Because ASHAs were well known in the rural communities, villagers tended to “listen to them.” Patients commonly felt that home visits by ASHAs for CKD care will have “advantages”, such as minimizing the inconvenience of traveling long distances and having regular blood and sugar levels checked in their homes.
Absolutely they [patients] will get help, as patient has to come in the morning from 15-20 kilometers away to medical center. [If ASHA can provide CKD service], then the patient will get the same facility in the village. Patient 2, male
Many ASHAs were amenable to performing tasks related to CKD care during home visits, and desired greater degree of involvement in the care of patients with chronic conditions. However, some expressed “bit of fear” since they had no prior experience with CKD while others were worried about “increase in workload” and “lack of time.” Primary care providers 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.
We hope to learn everything to able to tell people how this disease [CKD] happens, what will happen if patient has this disease, what should be eaten or should not be eaten, what is the symptom associated. One should know which doctor he/she has to see. Community health worker (FGD Participant), female
Affordability and ability to pay: Cost of medicines and treatment
‘Affordability and ability to pay’ refers to the economic capacity of people to spend resources and time (30). With respect to CKD, a major barrier for rural communities was cost.
Barrier
Financial burden due to CKD
Some HCPs 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 for financial support.
Patients should get financial support. The patients should not leave their dialysis, should take a high protein diet, be physically active, and working is very important. By doing work, they will be able to earn money, and their mind will also be diverted alongside. Patient 5, male
Appropriateness and ability to engage: Continuity of care
‘Appropriateness and ability to engage’ refers to the fit between services available and patient needs (30). Tied to this domain are adequacy, quality and system integration which ensure continuity of services, and influence the ability to engage. The key barrier in this domain, was inadequate mechanisms for CKD referral and follow-up care. For improving access and enhancing the quality of services, a system approach to care co-ordination and novel approaches like m-health technology for CKD care were perceived as relevant facilitators.
Barrier
Inadequate mechanisms for CKD referral and follow up
Primary care physicians reported “referring” CKD patients because the rural PHCs could not offer services for CKD. Although referral registers are maintained, mechanisms for follow up are lacking in primary care, which depended entirely on the patients if they visited the PHC “by themselves”. Most patients had no follow up.
No, there is no mechanism to follow up, some patients are left. Physician 2, female
HCPs stated that when they reached the decision on RRT, the referral process was considerably delayed due to difficulty in obtaining a specialist appointment. They mentioned that the delays in referral were associated with huge demand for beds in hospitals. Communication between community healthcare workers and nephrologists was lacking. Long waiting times for patients waiting to go on RRT was common. The need to travel long distances to receive treatment was reported as a barrier to CKD care and caused dissatisfaction.
Yes, mainly it is of distance. The patients who come to me they sometimes say they have to go so far and one other thing is that at the district level it gets too crowded so their number [consultation] comes very late, they come back and tell that after much difficulty their number came and I had not got enough time and proper. They [patients] think that they are not satisfied. Physician 2, female
Facilitators
A system approach to care coordination
HCPs reported that a “system should be there” where patients with CKD are appropriately examined and referred in a timely fashion. It was commonly believed that appropriate referral to a specialist was crucial for CKD care and that education and awareness among doctors was essential to enhancing the continuity of care. Primary care physicians reported that “follow-up” of the referred patients was important for continuity of care through which CKD patients can review their treatment and medications at the PHC, thereby increasing adherence.
[If] the patient is on dialysis or has kidney disease, if there is anything like this, if he brings prescription and shows us that this treatment is ongoing, we [primary care physicians] can ask him how many days later [seeing specialist]… if he happened to miss the treatment, then he can take medicines from us, as long as the medicines are available here. He also can ask us like his follow up was on this day but he could not go. Now he could be called on this [a particular] day. Physician 1, male
Moreover, HCPs felt that for improving patient satisfacion, good facilites for management and follow up needs to be made available in their area.
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
M-health technology to improve CKD care
Most participants were supportive of m-health approach to CKD care. High familiarity with mobile devices, and the availability of the internet and smart phones were reported. Many healthcare providers viewed the m-health approach to the management of chronic diseases including CKD as “convenient,” “beneficial” and “feasible”. Similarly, some of the perceived benefits expressed by patients included care at their doorstep, saving time and resources and provision of additional “moral support.” Other perceived positive attributes of m-health technology were the potential to address gaps and enable sharing of records, patient information, and timely treatment.
It [m-health] is beneficial, as it will have all the biodata of the patient. It will show that when the patient took medicine, which medicine has taken and when the treatment started etc….[If the patient] asks us, we would be able to tell the patient. Patients will be able to know about their disease and get treatment on time. Records of patients can inform the doctor; it will save time also. Community health worker 2, female
However, some participants foresaw the complexity of implementing m-health due to “slow” internet connectivity and ‘illiteracy’ in rural areas. Others 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 maintaining that efforts should be prioritised on addressing health systems barriers to ensure that patients have access to quality primary care.
Mobile health approach means going to the population and catering to the needs of the already existing and newly diagnosed patients, if there is a shortage of medications, tests, etc. but for primary screening and universal access and treatment to diabetes, this mobile healthcare system will not serve the purpose because screening has to be done till the last vulnerable person of the population. If we use the mobile service and send our workers for screening, only a few will be diagnosed and the rest will not come out. I feel the primary health care center will do more in this case rather than accessory appliances. Government official 2, male
Table 3 provides summary of themes, subthemes and illustrative quotes.
Table 3: Summary of themes, subthemes with illustrative quotes
Key themes & subthemes
|
Evidence
|
Approachability: Stakeholders’ awareness & knowledge of CKD
|
Barriers
|
|
Poor knowledge & awareness of CKD among HCP and patients
|
“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
|
Low risk perceptions among patients resulting in delayed diagnosis
|
“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
|
Inadequate patient-provider communication regarding CKD
|
They [doctors] said that your kidneys have a problem, and other than this they [doctors] did not say anything. Patient 1, Male
|
Facilitator
|
|
Increasing awareness of CKD
|
“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
|
Acceptability: Cultural norms & beliefs
|
Barrier
|
|
Self-medication & use of informal medicines
|
“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
|
Availability: Resources and manpower for CKD care at primary care level
|
Barriers
|
|
Inadequate human resources
|
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
|
Shortage of medicines & diagnostic supplies
|
“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
|
Facilitators
|
|
Provision of CKD related supplies and HCP training
|
“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
|
Home visits by trained community workers for CKD care
|
“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
|
Affordability: Cost of medicines & treatment
|
Barrier
|
|
Financial burden due to CKD
|
“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
|
Appropriateness: Co-ordination and continuity of care
|
Barrier
|
|
Inadequate mechanisms for CKD referral and follow up
|
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
|
Facilitator
|
|
A system approach to care coordination
|
“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
|
M-health technology to improve CKD care
|
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
|