Socio-demography of the respondents
A total of 126 participants participated in the study. Twelve diabetes patients’ groups (96 in total) were select for FGDs. Among them more than 50% were male. The average ages of the respondents were 52.08 years (SD ± 13.02). 44% of the respondents were in the age group 41–50 years. However, 48% of the respondent were highly educated (post-Graduate), 52% were private service holder. Furthermore, 47% of the respondents were in “Middle Income” group in the socio-economies context; in the view of the religious belief 80% were Muslim, and majority of them were married (83%). Interestingly, 65% of the respondent were took oral drugs and 16% of the respondent were took both insulin and oral drugs. From the service provider and the stakeholder (N = 30), the mean age of them were 55.33 (SD ± 9.31). Around 50% of the respondents were in the age group 56–65 years. However, 62% of them were male and majority of them were physician (40%)
Socio-Demographic Status of the Beneficiaries (N = 96)
|
Characteristic
|
N
|
%
|
Age (mean ± SD) = 52.08 ± 13.02 years
|
Range
|
|
|
18–30
|
5
|
5
|
31–40
|
7
|
7
|
41–50
|
20
|
21
|
51–60
|
42
|
44
|
≥ 61
|
22
|
23
|
Gender
|
|
|
Male
|
50
|
52
|
Female
|
46
|
48
|
Educational Status
|
|
|
Secondary
|
10
|
10
|
Higher Secondary
|
12
|
13
|
Graduation
|
28
|
29
|
Post-Graduation
|
46
|
48
|
Profession
|
|
|
Government Service
|
16
|
17
|
Private Service
|
50
|
52
|
Housewife
|
30
|
31
|
Socio-Economic Status
|
|
|
Lower Middle Income (Below 20,000)
|
6
|
6
|
Middle Income (21,000–40,000)
|
45
|
47
|
Upper Middle Income (41,000–60,000)
|
32
|
33
|
Upper Income (Above 60,000)
|
13
|
14
|
Marital Status
|
|
|
Single
|
3
|
3
|
Married
|
80
|
83
|
Divorced
|
2
|
2
|
Widowed
|
11
|
11
|
Religious Status
|
|
|
Muslim
|
77
|
80
|
Non-Muslim
|
19
|
20
|
Treatment Mode
|
|
|
Oral Drugs
|
62
|
65
|
Insulin
|
19
|
20
|
Both
|
15
|
16
|
Socio-Demographic Status of the Service Provider and Stakeholder (N = 30)
|
Age (mean ± SD) = 55.33 ± 9.31 years
|
Range
|
|
|
35–45
|
3
|
10
|
46–55
|
10
|
33
|
56–65
|
15
|
50
|
Above 65
|
2
|
7
|
Gender
|
|
|
Male
|
19
|
62
|
Female
|
11
|
38
|
Profession
|
|
|
General Physicians
|
12
|
40
|
Consultant Physicians
|
10
|
33
|
Policymakers
|
3
|
10
|
Health Managers
|
5
|
17
|
Themes of participants
Themes
|
Probe
|
Demographics
|
Frequent Responses
|
Healthcare Service
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Do hospitals arrange special healthcare service for diabetes patients during COVOD-19?
|
|
Hospitals (those provide diabetes services) were being used to treat COVID-19 infected patients; hence it was difficult to get access for general patients. (Patients) heard of no special service for diabetes patients even in emergency case although (high-income) few received critical care on requirement-basis. Low-income (patients) service seekers have totally been ignored, despite their deteriorating health condition.
|
Do the patients provided with any household Care Instruction of physician in result of any initiative taken either by the government or private sectors?
|
|
(Patients) did not received any structured instruction of health experts regarding household diabetes care, yet few social media platforms shared primary healthcare advice, aiming diabetes and other NCDs. (In case of low-income people) some who (reported to) are be the most vulnerable and exposed to COVID-19 get no health advice or support leaning on any initiative taken by the government and private sectors.
|
Does telemedicine care provide diabetes patients with required treatment?
|
|
Since telemedicine service was not designed to provide any special service, targeting selected diseases like diabetes, (diabetes) patients received the same service so as to other patients. Furthermore, some (patients) reported being treated with less attention due to of being a free-of-cost service.
|
How the patients’ investigations were addressed?
|
|
(Patients) confronted with various obstacles when it came to investigation as most of the diagnostic centers were closed, and the investigation service providers of few (opened) centers expressed less interest to carry out the investigation to avoid the close contact with patients.
|
Drugs Access and Management
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Do the prices of drugs create strain on the economic condition of diabetes patients during COVID-19?
|
|
Due to the shortage of drugs and obstruction in importing (selected) medicines, the prices increased, creating economic-burden in a circumstance when (most of) the people were jobless or experiencing decrement in income.
|
Do the patients get drugs accessibility during COVID-19
|
|
A dire crisis of drugs (almost reported by all) have been experienced nearly by every diabetes patient, be it the high-middle or low-income people. The area-based dispensaries were also closed out of COVID-19 fear, hence no option left for the aged or support-less patients group but to seek for drugs in remote areas or to remain out-of-it. No special initiative has been carried out from government to mitigate such misery of diabetes patients.
|
How do the drugs have been preserved?
|
|
On (patients’) request for insulin, my neighbor opened his dispensary which was closed for days, and was out of electric connection- which indicates the drugs are not being preserved properly which reduce their effectiveness.
|
Health System Response for Diabetes
Leadership and Governance
Most (92%) of the respondents of the study show minimum satisfaction towards the leadership and governance for diabetes care during COVID-19.
Although a guideline for diabetic patients was published in April 2020, larger number (78%) of health service providers and receivers reported to be unaware of its existence. As a result, they experienced a lack of guidance from the responsible authorities during the lockdown in April and May. During lockdown hour, most (90%) of the healthcare professionals were under engaged and there was an acute shortage of personal protective equipment (PPE), resulting little or no opportunity for specialists to treat or attend patients in the diabetic healthcare centers. A number of patients (6%) also reported of having incomplete instruction when consulted with family doctors. During study period, 11 newspaper reports indicate no new deaths caused by COVID-19 until the end of March, however there was also very low (< 1%) COVID-19 diagnosis testing and patients monitoring for COVID-19. These newspaper reports also reveal that many physicians refused to see patients without having a COVID-19 test report. However, the study finds that the shortage of testing kits and restrictive COVID-19 diagnosis policies made it difficult for those diabetes patients who were given investigations that have been needed to be seen by their healthcare providers. Majority (88%) news reports reflect a lack in the regulation from the higher authority on how and who should be treated amongst the pandemic, which not only alarmed healthcare providers, rather hindered the possibilities of providing health care services as well. Nearly all (90%) of the respondents further reasoned that the actual rate of COVID-19 infection among diabetic patients might be higher than the reported data.
When respondents (service provider) were asked whether they received and aware of any diabetes treatment or service guideline aiming COVID-19, most of the general and consultant physicians provided a negative answer.
“A fright was developed inside as COVID-19 was all new then, I seek for guidance first but the sacrifice of patients’ lives made me go without it” …(p6)
Experts determined that the data needed for proper epidemiological analysis was severely lacking due to the lack of comprehensive testing (New Age BD, 2020), as announced on the 28th March 29 follows a similar suit with complaints of many patients dying with COVID-like symptoms, but no way of confirmation (New Age BD, 2020). The government established a national technical committee for COVID-19 to provide technical support for planning and managing health services throughout the country. This committee consisted of 21 members among whom only one member’s expertise includes NCDs. Most (70%) of the respondents of KII shed light on the government’s development of a clinical management guideline for COVID-19, which was updated eight times, but diabetes management was not addressed within its first few versions.
“As a doctor, it shocked me that most of the COVID-19 aimed guidelines allocated a very little ground for NCDs while people living with it are the most vulnerable one” ...(p12)
Moreover, many service provider participants (56%) ( thought the public healthcare system lacked an adequate emphasis on physician and frontline healthcare workers’ safety regarding diabetes management. The Diabetic Association Network (DAN) centers were unable to act upon proper guidance to manage their patients. On an individual level, many groups attempted to share guidelines in social media or television announcements which seem to attain a positive upshot on the public as they often mentioned during focus group discussions as helpful information they could use. Patients highly appreciated some of the individual physician’s leadership, undertaking the job to inform the public regarding COVID-19 disease and safety.
Health Information System for Diabetes
Our study found that, public awareness towards diabetes was limited in the past six months. 78% of the service receiver participants reported not seeing any government-issued public announcements regarding diabetes management on television and newspapers. Though the government created an online telemedicine service platform to reach patients from remote locations 82% of the service provider participants on this telemedicine line responded not to be explicitly prepared regarding the management of diabetic patients, which led to further inadequate services and decreased the trust between diabetic patients and telemedicine healthcare services.
However, almost all (96%) the participants, both patients and service providers, mentioned about a dire communication gap in terms of providing and receiving telemedicine service.
“It was my first-time telemedicine service experience, I found it difficult to make understand my condition and complications neither understood the physicians’ advice properly” … (FDG-ph-p4)
“I prescribed the patient for high blood pressure, cough and fever after a complex explanation of condition, but immediately before cutting the call, she added of having diabetes which turned the table” …(FGD-HCP-p21)
Bangabondhu Sheikh Mujib Medical University (BSMMU) and Bangladesh Diabetic Association (BDA) provided telemedicine that helped diabetes patients on varying levels of severity. Different pharmaceutical companies used social media to provide diabetic care information and share their activities to support diabetic patients whereas the government printed and disseminated posters regarding diabetes management. But it did not effectively reach the public as most were homebound, and did not see them hung up in various hospital locations. Information related to COVID-19 and test results were collected and distributed by the Institute of Epidemiology Disease Control and Research (IEDCR), but they did not release data, specifically targeting diabetes or other co-morbidities associated with it.
Participants who treated COVID-19 patients informed that most complicated COVID-19 cases had some diabetes related complications. Yet no study has been carried out due to the lack of accurate data.
“We (indicates health care professionals) need accurate data regarding COVID-19 tests and the infection rate to measure the severity to increase the service quality but hardly accuracy is being seen in existing data which if not considered would lead to upheaval” …(p29)
Health Financing for Diabetes
While the government invested large amounts of money for COVID-19 treatments, most of it went towards logistical sectors such as ventilator, incubator, masks, and personal protective equipment (PPE) purchases. Although the government invested around BDT 100 billion for COVID-19 treatment and vaccine purpose, there were no specific allocations from these funds targeting diabetes management systems. The World Bank and ADB also provided an additional BDT 15 billion as COVID-19 emergency response finances which did not involve any separate funds for diabetes. Specifically, the Health Population Nutrition Sector Program (HPNSP) received no new public diabetes management finances in its annual budget review.
Together with the frequent mention of need for sufficient budget allocation, majority (89%) of the participants pointed at underlying corruption in heath sector.
“Despite the need of more budget allocation aimed NCDs, corruption surged during COVID-19 which led to mismanagement and results a healthcare system more vulnerable” … (p32)
We know that 70% of the public's total health costs have to be covered from pocket expenditures. Hence, without the government’s regulation of price gouging and inflation, costs increased, causing strain on the people. Transportation systems further failed with increased mandatory social distancing, which caused medicine prices to soar, independent of the general economic setback due to the entire country being under compulsory lockdown. Importantly, the expense rate of insulin and other diabetic drugs increased well above the retail price at this time. Meanwhile, the innovative initiative of telemedicine has added on this financial train, making it much more expensive than in-person visits along with reported difficulties in managing patients’ treatments.
Participants who belong to low-income group expressed their utter concern regarding livelihood than their health condition.
“When it has become really difficult for people like us to earn breads for survival in this COVID-19 situation, buying medicines for fancy disease like diabetes is beyond capacity” … (P40)
Health Resources for Diabetes
Being one of the high prevalent NCDs and of alarming public health concern, Diabetes management has many components and investigations, including blood glucose monitoring that were severely hindered during the imposed lockdown. Beforehand, be it the study perspective for researchers or prescribed investigations from health professionals, the procedures of taking sample were not much inconvenient and the medicines, with store availability, could have been ordered online. However, the increasing fears of infection and governments’ mandate have made all these services shut down, creating an unimaginable crisis for the diabetes patients, especially in the first four months of the outbreak, responded by most (66%) of the participants (service receivers and service providers). However, the study found that the expenses of investigations made it accessible only for the participants (service receivers) who belong to the higher economic level. In contrast, the participants (service receivers) in the lower socio-economic ground were unable to go through such management, as they relied on cheaper in-person systems.
In response to the question regarding the scope and necessity of research on COVID-19 and diabetes, participants mostly highlighted the deficiency of resource and shortage of accurate data.
“I together with some of my colleagues tried hard to carry out a study, investigating the relationship between diabetes and COVID-19, neither had we got financial support nor case related data, we delayed… (p24)
Compared to the requirement, the contribution of both the government and private pharmaceutical companies in resource mobilization for diabetes treatment research was disheartening. Meanwhile, physicians have suggested that by creating an online-based training platform for the frontline workers to enhance their skill and capacity, the diabetes related complications during COVID-19 can be handled.
Essential Medical Products and Technology
Diabetes-related medical products became increasingly limited during lockdown. Endocrinologists had deficient in quality Personal Protective Equipment (PPE), and diabetic complication related patients could not access various biological investigations needed to ensure proper checkups. The country witnessed a 4% coronavirus mortality rate and 2.1% infection rate among physicians and healthcare workers, creating a severe scenario in a developing country like Bangladesh, and as a result, further constrained the treatment availability. The physicians in focus group discussion opined that mobile phones and televisions can be used to spread information regarding diabetes management. Furthermore, due to the dire shortage of PPE, the healthcare service workers hardly carried out echocardiogram, MRI, ECG, and other essential tests as these involve close contact with patients during COVID-19.
“I believe, each one of us experienced a sense of dilemma for we too have feeling for family, at the meantime, it was hard to ignore the frightened eyes of our patients. The quality PPE seemed the only earthly rescuer then” … (p55)
Cardiac diabetic complications can be properly investigated by echocardiograms, but Bangladesh has not developed a mobile testing system test for appropriate diagnosis. Hospitals lacked negative air pressure systems, so it was quite hard to prevent infection in the hospital premises. There was a lot of Hand-sanitizer and hydroxychloroquine tablet were sold for prevention of COVID-19 and Z-packs but DM and HTN treatment remain undersold. However, the poor slum and village people could not access the medical products due to the price. 92% of such participants responded not having the opportunity to buy the medications because of the price which was assumed higher in their critical financial situation. Among the service receiver participants, we found that 16% of them were not taking any antibiotics, insulin and other medications for diabetes control during lockdown.
Health Service Delivery
The severe impact of COVID-19 is mostly endured by various aspects of health service delivery, making health system infrastructure overburdened from high death tolls. Being a poverty-stricken country, Bangladesh has given a tough war-ground to fight against COVID-19 despite its incompetent healthcare system, resulting unimaginable public sufferings during this pandemic hour.
Mr. Rashid (pseudonym), a 60 years old diabetic patient who lives in Dhaka, takes insulin two times a day to keep his diabetic level in control and his daily routine involves morning and evening walk until lockdown has been imposed. He used to have a diet, including different types of fruits recommended by his physician. Mr. Rashid has no complain about life up to the period of lockdown when his neighborhood has suddenly detached from all basic services like other parts of the country.
The imposed lockdown during COVID-19 sharply interrupted the health management of diabetes patients, creating horrendous disruption in social-and-health service delivery.
Mr. Rashid also confronted difficulties in finding his medication for diabetes in the local medical stores for most of those being imported. He further couldn’t continue his daily walk due to governments’ incumbent on people to stop the spread of COVID-19, and regular diet has been hampered for the disruption in food supply. Moreover, these triple triggers of service disruption created deep tension in the household of Mr. Rashid that he might be in danger of Hyperglycemia and Hypoglycemia.
The mental pressure and physical turmoil of diabetic patients during lockdown in Bangladesh is even more horrific than the above portrayed scenario. Most (70%) of the participants (physicians) responded and newspaper articles reported that those with diabetes had worse complications with COVID-19 infection, and maximum cases of COVID-19 related deaths had diabetes-related co-morbidities.
Participants shared some of their sore and sufferings in middle of answering the question that, too, reflects defeat of our health service infrastructure.
“We (participant and his wife) have no son and our only daughter is married; in this age (53) I can’t take the burdens of searching for medicines. She becomes extremely frightened and keeps asking me how we would cope with this kind of unprecedented situation” … (p44)
“My parents diagnosed with COVID-19, and at the end my father (59) alone won the fight. Although my mother (46) was quite young, diabetes gave her a tough situation” … (p48)
Health services for COVID-19 did not include any diabetes-related awareness programs specific to that cohort. Physicians reported that uncontrolled diabetic patients had a low recovery and high death rates. Various diabetic association centers had high physician infection rates, which in turn disturbed their services.
Almost all (98%) of the participants of low-income and of low-educational status genuinely reflects of their knowledge gap.
“I do not clearly understand what diabetes is or its management except that it is not curable. My rickshaw stand is near a hospital where various posters of health issues are hung on but due to being unable to read, do not understand much from them” … (p66)
It is hard to measure the social and economic complex caused by diabetes which lead both to the expensive maintenance and various life-threatening complications, most commonly stroke and neuropathy. However, governments’ public health service infrastructure was closed from March to July 2020, and it was a critical time of inaccessibility to patients. Diabetic association hospitals had many undiagnosed COVID-19 patients, and diabetic patients also did not share signs and symptoms with their physicians due to negative stigmas associated with COVID-19. Furthermore, Diabetes Association Hospitals’ ICU patients tested positive for COVID-19 were hospitalized, causing the spread of COVID-19 among health professionals that results a lockdown of ICU which in turn closed general services.
Ranu Begum (pseudonym), a working woman living in a well-sophisticated area of Dhaka, called her uncle, Mr. Zafor (pseudonym), and requested him to call her mother, Mrs. Roushon (pseudonym), to check on her as she was not picking up any calls from any of her children. She also informed about her mother being diabetes and other NCDs patient along with a high fever nowadays. Upon reaching Mr. Zafors’ call, Mrs. Roushon received and informed about her current situation. When Mr. Zafor asked her about not answering calls from her children, she mentioned a sorrow that has been very common during this pandemic hour.
Social distancing and an underlying concept of fear regarding coronavirus wrack havoc on the mental health of general people in such way that ends up creating distance even in between blood-relationship. The parents living with NCDs under went the extra burden of stress and anxiety due to being ignored by their children.
Her sons live in the same building as her on different floors. Despite being informed that she has had a fever, they did not visit her even for once, rather insisted on taking over the phone, putting all the blame in the neck of the imposed lockdown. Hence, Mrs. Roushon became upset with her children's response and stopped receiving their calls.
Majority (82%) of the older adult participants confronted with both physical and psychological burden during the lockdown period, which indicates a worse and stressed circumstance for patients with non-communicable diseases. Lockdown and social distancing on diabetes care had many harmful side effects that may have been assuaged with proper diabetic patient guidelines. For example, many patients could not travel to health centers for care. Moreover, telemedicine was too expensive, and the CDC trained physicians have been too late regarding diabetes and hypertension management, as responded by most (68%) of the participants (service receivers)