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Palliative care delivery in India during COVID-19 pandemic: role of faith-based hospitals – a qualitative study
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  1. Jenifer Jeba Sundararaj1,
  2. Ashita Singh2,3,
  3. Ruby Angeline Priscilla4,
  4. Priya John5,
  5. Savita Duomai6,
  6. Daniel Munday7,
  7. Ruth Powys8,
  8. Kirsty J Boyd7,
  9. Liz Grant9 and
  10. Scott A Murray7
  1. 1Palliative Medicine, Christian Medical College and Hospital Vellore, Vellore, Tamil Nadu, India
  2. 2Chinchpada Christian Hospital, Navapur, Nandurbar Maharashtra, India, Chinchpada Christian Hospital, Chinchpada, Maharashtra, India
  3. 3Emmanuel Hospital Association Palliative Care Service, Chinchpada, India
  4. 4Community Medicine, Christian Medical College and Hospital Vellore, Vellore, Tamil Nadu, India
  5. 5Christian Medical Association Of India, Janakpuri, Delhi, India
  6. 6Community Medicine, Khyouchi Health Care Centre, Manipur, India
  7. 7Usher Institute of Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK
  8. 8Palliative Care, Green Pastures Hospital, Pokhara, Nepal
  9. 9Global Health Academy, The University of Edinburgh, Edinburgh, UK
  1. Correspondence to Dr Jenifer Jeba Sundararaj, Palliative Medicine, Christian Medical College and Hospital Vellore, Vellore, Tamil Nadu, India; jenifermugesh{at}yahoo.com

Abstract

Objectives The COVID-19 pandemic challenged palliative care (PC) services globally. We studied the ways healthcare professionals (HCPs) working in faith-based hospitals (FBHs) experienced and adapted care through the pandemic, and how this impacted patients with PC needs.

Methods In-depth interviews were conducted with HCPs from FBHs serving rural and urban population across India. Thematic analysis was conducted.

Results A total of 10 in-depth interviews were conducted during the COVID-19 pandemic, first wave (4), second wave (4) and between them (2). HCPs described fear and stigma in the community early in the pandemic. Migrant workers struggled, many local health services closed and cancer care was severely affected. Access and availability of healthcare services was better during the second wave. During both waves, FBHs provided care for non-COVID patients, earning community appreciation. For HCPs, the first wave entailed preparation and training; the second wave was frightening with scarcity of hospital beds, oxygen and many deaths. Eight of the 10 FBHs provided COVID-19 care. PC teams adapted services providing teleconsultations, triaging home visits, delivering medications, food at home, doing online teaching for adolescents, raising funds. Strengths of FBHs were dedicated teamwork, staff care, quick response and adaptations to community needs, building on established community relationship.

Conclusion FBHs remained open and continued providing consistent, good quality, person-centred care during the pandemic. Challenges were overcome innovatively using novel approaches, often achieving good outcomes despite limited resources. By defining and redefining quality using a PC lens, FBHs strengthened patient care services.

  • COVID-19
  • Home Care
  • Hospital care
  • Psychological care
  • Chronic conditions

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WHAT IS ALREADY KNOWN ON THIS TOPIC

  • Faith-based hospitals are significant contributors to healthcare and have demonstrated collaborative work with other organisations during pandemics.

  • Faith-based hospitals in India with palliative care teams have shown active community involvement to offer whole person care.

WHAT THIS STUDY ADDS

  • Faith-based hospitals with palliative care teams in India adapted rapidly to the healthcare and community needs during the pandemic to continue to provide whole person care, amidst the unexpected challenges.

  • Service adaptations went beyond just medical care, even responding to community needs through active engagement with community, government and non-governmental organisations.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

  • The strengths of faith-based hospitals that enabled them to bridge healthcare gap during the pandemic including established community trust and rapport, flexibility, quick adaptability and teamwork, appropriate training and staff support should be further advocated and studied to strengthen healthcare system·

  • The barriers that limited care during the pandemic should be further studied and efforts to build a strong healthcare system that can handle pandemics or other crisis should be considered.

Introduction

The COVID-19 pandemic has hugely impacted healthcare systems, especially affecting systems where there was already a significant burden of chronic diseases. In low-income and middle-income countries (LMICs), these challenges were magnified during COVID-19 especially among those with palliative care (PC) needs.1 Health services in rural India were exposed because of relatively weak health services and lack of flexible resources to mount rapid responses to the pandemic. The effects of COVID-19 were felt particularly by daily wage earners, migrant workers and poorer people.2 Faith-based hospitals (FBHs) and organisations have been key response players in earlier pandemics. Many FBHs in India have been increasingly involved with developing systems and services for chronic disease management including PC and in delivering universal health coverage in low-income areas.3 The position paper by the Indian Association of Palliative Care served as a guide for healthcare professionals (HCPs) in care of individuals with PC needs both for COVID-19 patients and others.4 There is little published on the role of FBHs in PC delivery during the COVID-19 pandemic. Challenges and adaptations specific to these settings could provide an opportune time for good learning.

The first phase of this study was conducted using an online survey of FBHs providing PC in India towards the end of the first wave of COVID-19 in September 2020. Survey results from 44 FBHs revealed that the COVID-19 pandemic had led to reduced clinical work both in the hospital and community, resulting in reduction in hospital income in 41/44 hospitals. Hospital supplies were affected in 21/44, difficulty with access to medicines including morphine in 19/44 and lack of personal protective equipment (PPE) in 14/44 hospitals. There was reduction of PC work in 66% and in 16% it had stopped altogether for a certain period.5 Interview participants for this study were recruited from a sample of the surveyed FBHs, to further explore the impact of the COVID-19 pandemic on patients with PC needs and their families, challenges faced by PC services in FBHs and the solutions adopted by them and how these good practices can strengthen future PC delivery. The results of our study will contribute towards learning on effective provision of care for vulnerable patients during pandemics and other crisis situations especially in LMICs.

Methods

Forty-four FBHs offering PC services from a database held by Emmanuel Hospitals Association (EHA) and the Christian Medical Association of India in September 2020 had completed the initial survey.5 Of them, 32 HCPs had indicated willingness to be interviewed, 10 participants were recruited through purposive sampling to complete a semistructured interview over Zoom. They were approached via email and informed consent was obtained. Sampling was undertaken to ensure representation of different geographical settings across India.

The interviews each lasting about an hour were done across the first two waves of COVID-19 between November 2020 and September 2021 (table 1). A topic guide developed using the results and insights emerging from the survey guided the interviews. Areas of interest that emerged during the interviews were explored as well as the a priori themes. The interviews were conducted by JJS, AS, RAP and PJ. Two interviewers along with the interviewee introduced each other and the purpose of research was stated again. This was recorded (audio and video) with additional notes made by one of them immediately after each interview. The interviews were transcribed to aid analysis ensuring that identifiers were not included in transcripts to maintain confidentiality. Transcripts were checked for accuracy; further participant input was not obtained. Thematic analysis was conducted, and major and minor themes were identified. Analysis was done by the interviewer plus a coinvestigator reading the transcripts independently. Five of the investigators were involved in coding the transcripts. The interviewers felt data saturation was reached. There were no repeat interviews conducted.

Table 1

Demographic details of hospitals and interviewees

Results

Six of the 10 interviewees were from secondary-level and tertiary-level hospitals in North India, and 4 from South India. Seven of the 10 hospitals provided COVID-19 care during first and second waves; 1 more of the hospitals had to provide COVID-19 care during the second wave. Details of the FBHs represented are provided in table 1.

First wave

Impact on community and healthcare

Community

The COVID-19 pandemic was a new experience for people and evoked varying responses ranging from fear and stigma to it being perceived as a ‘foreign-disease’ or a problem just limited to hospitals, resulting in inadequate safe practices in the community. The work of the community PC teams was hampered by the use of PPE and what it represented, and some people did not want to be visited by the PC teams at home.

…the stigma of us going to the neighbourhood,… with plastic aprons and scrubs, the family was fearful, not just fear of getting the infection, but fear of what the neighbours will think. Senior doctor (H4-US)

First wave, people took the pandemic lightly” Senior doctor (H8-RS)

To dispel the fear and stigma in the community, staff in one hospital used the experience of the PC team driver who was admitted with COVID-19.

The PC team along with the village leader facilitated a communication from the driver with a speaker attached in a vehicle and let the village people hear from the driver that he is well, and the hospital services are good. This helped the village people. Senior Nurse (H1-RN)

The immediate lockdown following the pandemic left migrant workers stranded far away from home or kept outside of villages. One FBH helped them stay in temporary tents and provided food.

…migrants were kept out of the village under the tent/ tree in five to six villages. They were well taken care by the village people and the ‘X’ hospital. Senior Nurse (H1-RN)

HCPs and hospitals

The COVID-19 pandemic was a new challenge for the HCPs and hospitals. They prepared themselves actively, through online learning, procurement of PPE and rearrangement of hospital services to include fever clinics and triage facilities. Though most hospitals had sufficient PPE, some had an initial shortage.

first wave, …we did a lot of training for staff by Zoom…. Everybody was taught on everything regarding COVID. Senior doctor (H7-UN)

Some hospitals faced challenge with hospital bed availability even during the first wave.

It was very difficult at some point, to get beds for our patients in the hospital. There was a big scramble in the emergency. Senior doctor (H4-US)

Hospital income was reduced during the first wave, and they had to resort to reduction in staff salaries.

We've been given only half a salary till the month of June 2020. Senior doctor (H5-RN)

Healthcare and patients

During the initial lockdown following the pandemic, many health services including private practitioners and nursing homes stopped their services. Due to this some of the hospitals which were not COVID care centres had a surge of patients with chronic illness. Patients were afraid to go to COVID care designated hospitals.

When the lockdown started in …March 2020, the fear arose in the community. Most of the local doctors, private practitioners and nursing homes closed their services. Only the district hospital and our hospital were functioning. Senior doctor (H2-RN)

Cancer care was affected across the disease trajectory; newly diagnosed patients could not commence treatment and those already on treatment had it stopped. Many who had travelled far to tertiary care hospitals returned home without completing treatment due to the uncertainty that prevailed.

Cancer care was adversely affected. Those who were already on treatment, the treatment was abruptly stopped due to lockdown and even if they reached these centers they were discouraged from continuing treatment. They were also asked to do COVID-19 testing; hence many stopped their treatment. Those who were newly diagnosed, did not start treatment at all due to the lockdown Senior doctor (H3-RN)

However, some people went to great lengths to get their treatment completed.

I should appreciate one patient, enduring this lockdown; she went and completed chemotherapy in two months. She went on the bicycle with her husband, somehow through the interior of the villages, and got the treatment done. Senior doctor (H6-RN)

Impact on PC

PC home-based services and end-of-life care

PC services were affected significantly during the early pandemic and first wave. The lockdown limited home-based teams from providing domiciliary care. This resulted in interruption of medications and inadequate symptom relief. HCPs resorted to connecting with patients and families through telephone consultations to provide support and encouragement. This was not without challenges, many did not have mobile phones, network connectivity was not good in rural areas and poor finances to recharge phones. Telephonic consultation was new, and HCPs found it hard to connect with patients without direct face to face contact.

…was hard to connect with the patients over the phone in the absence of the advantage of touch and examination. Senior doctor (H4-US)

There was less patient and HCP contact as patients and families were afraid to come to hospital or let the hospital team visit them at their homes due to fear of contracting the disease and associated stigma of having healthcare visits. The PC teams were distressed to witness the impact of interruption in the continuity of PC services and the increased suffering at end of life.

Those needing end-of-life care would have definitely suffered along with their families. The community accepts the situation very fast and blames it on fate. As a healthcare provider we know that it shouldn’t have happened and they should have received end-of-life care. They shouldn’t have suffered. Senior doctor (H3-RN)

Shortage of morphine

Some hospitals had a shortage of morphine, primarily because of disruption in transport. This meant they used weaker opioids such as tramadol and other groups of analgesics, which resulted in suboptimal pain relief. In other hospitals drug supply was not an issue, but patients were not able to come to clinic. In one hospital interrupted morphine supply had been an ongoing problem and was further compounded by the pandemic. Witnessing inadequate pain control was an added distress for PC teams.

There was a shortage of morphine due to lack of transport facilities. Even the suppliers did not have enough to supply. In the absence of morphine, tramadol was used and other analgesics, but pain management was not as effective as it would have been with morphine. Senior doctor (H3-RN)

Morphine supplies were not a problem, only the patient accessing it was a difficulty. Senior doctor (H10-US)

Second wave

Differences in second wave

During the second wave, communities recognised the importance of preventive measures much better than the first wave. This wave was more frightening, with scarcity of hospital beds and oxygen resulting in many deaths. Many HCPs and their family members had COVID-19 infection and needed admission.

Second wave was very scary because many of our staff got COVID, including extended family…many patients came with COVID. And they had nowhere else to go. I had to take steps to open up as a COVID care center. Senior doctor (H7-UN)

The scarcity of oxygen during the second wave affected the hospitals, needing to refer patients to larger centres or refuse admission when there was no oxygen available. This was particularly painful for the HCPs to disappoint and refer patients who came with much hope and had received care at their hospital for a long time.

It was a very stressful time. Senior doctor (H8-RS)

Last month, two of our PC patients turned positive. That was unfortunate because we couldn’t keep them in our hospital anymore as we didn’t have a separate COVID ward. We didn’t have sufficient staff to take care of them or the PPE. Unfortunately, those patients had to be shifted to another hospital which was sad. I felt bad about that, but there was nothing we could do about it. Senior doctor (H9-RS)

The surging numbers of COVID-19 patients during the second wave necessitated PC teams to be involved in provision of COVID-19 care.

Till then, it was the Medicine and Family Medicine physicians who took care of COVID patients, but in the second wave …all of us had to pitch in to help in COVID care. (H8-RS)

One other difference from the first wave was that there was no lockdown and public transport was available with fewer restrictions, providing better access to healthcare services.

Some hospitals offered admission of PC patients to manage difficult symptoms as home visits were limited during the peak of the COVID-19 wave.

We offered admissions on an increased basis because we were not able to go and see them at home. If they wanted to stay for some respite, we were willing to offer that. Senior doctor (H10-US)

However, other hospitals found providing admission difficult due to the constraints of bed availability and felt non-COVID care was compromised.

At that time, COVID cases were taken care, but non-COVID patients I could not admit, I got a lot of calls from non-COVID patients, who needed admission, I had to turn them down….non-COVID patients struggled. Senior doctor (H7-UN)

PC teams perceived a sense of desperation as there were many requests for food from patients whose families had lost jobs due to the pandemic and many who could not afford treatment for COVID-19 as well as other illnesses. There were also requests for financial support for chemotherapy and other medications.

We got a lot of calls asking for food hampers because many lost jobs, many could not avail the treatment. Some people for the first time asked us if we can cover some finances for chemotherapy, other medications…it is an overall sense of desperation. Senior doctor (H7-UN)

Interestingly, none of the hospitals reported any additional challenge in the procurement or availability of morphine during the second wave in contrast to marked shortage of oxygen.

Applying lessons learnt from the first wave

Communities had learnt about the COVID-19 disease through the first wave and took safe-practice and preventive measures. The training over Zoom on COVID-19 care during the first wave equipped HCPs to deliver COVID care during the second wave.

PC teams had learnt to better connect and support their families through the multiple service adaptations implemented during first wave.

we knew what difficulties the patients would face, that they would run short of medications or food. What they would need, we knew, so we could cater to it …because we went through it once… Like during the first wave …many were not reachable in their numbers, so we knew better this time to collect two-three numbers to make sure they all had a number on which they'll be accessible. Senior doctor (H10-US)

PC team response and adaptations

PC team response and service adaptations

PC teams were unprepared to face the challenges brought on by the pandemic initially. However, they quickly responded to the unprecedented impact of COVID-19 on healthcare, PC and wider community needs for holistic support (table 2). Learning from the first wave helped the staff and services adapt and function more effectively during the second wave. They were able to predict and pre-empt the needs and difficulties of their patients. Many of these hospitals along with private and Government partners helped with dry ration distribution to the poor.

Table 2

Adaptations by the palliative care teams to offer palliative care services and engage in wider activities

PC teams were actively involved in handling the wider issues of the pandemic. They adopted innovative ways to address fears and stigma around COVID-19, improve public awareness, promote safe practices through community health education and distribute masks and sanitisers. One of the PC teams was asked by the local leaders, teachers and community workers to partner with them in this education as they felt the community would receive this message better.

When one Accredited Social Health Activist was beaten up by the village people, they asked whether it is possible for us to give them more information about COVID-19 so that they can make the people educated because when we go and make the people understand it makes a difference. The Asha workers and the teachers, and the village leaders, they were seeking help from the PC team to educate more on COVID-19. Senior Nurse (H1-RN)

Many PC teams were required to participate in care of COVID patients at their respective hospitals along with many other categories of staff who were called in for help as the demands for clinical care of COVID patients exceeded the capacities of the existing personnel. The PC team in one of the hospitals was also called to provide care for COVID-19 patients who were at the end of life, and to assist with planning of symptom management in those for whom a decision for non-escalation of treatment had been taken. They also developed teaching modules on palliation in COVID-19.

Doctors called us for end-of-life care, those who were for non-escalation of care, to relieve their symptoms… We could contribute to modules being made, for palliation of symptoms. Senior doctor (H10-US)

At another hospital, the ICU, medicine and geriatric teams provided good PC, as there had been much effort at integration of PC within the hospital services over the years.

The ICU team is quite well equipped to deliver PC, so PC team was not involved in this in a major way. The Medicine and Geriatric team also deliver good PC. Senior doctor (H4-US)

One of the hospital PC teams followed up patients at discharge from hospital, providing PC where relevant, and facilitated the provision of oxygen concentrators for home care of hypoxic patients on a rental basis.

Wider activities

Many PC teams in these hospitals looked beyond core PC clinical needs, offering support in different domains and expanded their care beyond usual clinical interventions, and responded to community needs through innovative ideas that were practical and relevant (table 2).

Seeing the increase in suffering and distress during the pandemic in patients and families different members of the team identified a cohort of patients based on their needs to make regular telephone calls; nurses checked regarding dressings, feeds while the psychologist supported those who were distressed. Poor families were identified, and dry food ration was provided. Senior doctor (H10-US)

PC teams were involved in fund raising for COVID care and food support. The acute food insecurity for many people was perceived by many PC teams as a pressing need in their communities.

PC team was involved in collecting food from local donors—vegetables, food rations, eggs, bananas, fruits and distributed to patients admitted with COVID-19 Senior nurse (H1-RN)

We had told our needs to few of our relatives and other doctors, they had donated generously Senior doctor (H5-RN)

One unique activity by a specific hospital (H7-UN) was an existing adolescent teaching programme for children of patients with HIV and cancer, with face-to-face classes on a 9-month curriculum. This initiative itself showed a very holistic dimension to the PC programme. However, during the lockdown and pandemic the team shifted this entire programme to online platform. This meant many of them needed help with adequate phone data recharging to attend classes.

We have a huge adolescent program…children who are infected with HIV or children where the parents have cancer…we take in about 40 children a year. We do classes in our place. It’s a nine-month curriculum. After the lockdown we modified it to Zoom classes. We recharged the phones of the children. Senior doctor (H7-UN)

This PC team also provided letters to patients stating their need to make public transport easy so they could continue ongoing treatment.

…in the second wave, the government kept the public transport open. They would ask me, “can you write a note saying that,…this person can avail the bus on this day, because he has to go to this hospital to have treatment. Senior doctor (H7-UN)

Learnings through the pandemic

Lessons from strengths of FBHs and PC teams

Prior relationship with community

The PC teams had a long track record of strong relationships in the communities they served. PC teams were accepted and appreciated by patients and communities because of the good rapport established prior to the pandemic. These relationships helped build networks that included non-government organisations (NGOs) and government services, bringing together their competencies to achieve good outcomes in response to the unprecedented needs that came with the pandemic. These networks resulted in various gains such as procurement of adequate PPE; a quick response and adaptations to needs in the community; and effective communication as the teams formed the bridge between various government and NGOs so that resources could be appropriately and transparently deployed, based on need.

Because of the good networking, lot of PPE kits, face mask and all were given to us as gifts from these organizations. Senior doctor (H7-UN)

Motivated teams

PC teams in all the hospitals continued to function though they were also fearful initially. The visible need and suffering around them motivated them to provide care as many other health services had closed and were not available to the community.

So our team initially faced difficulties. They hesitated due to many reasons to go on home visits. But when they started going and saw that the patients were happy in receiving them, they became happier and more courageous. Senior doctor (H5-RN)

the team always wanted to go for home care…once they were allowed to do the home care, we could see the joy as they cared for the patients. Senior doctor (H3-RN)

They maintained connection with patients and families and ensured continuity of care. As they saw an increase in suffering, they responded to the multidimensional needs. One of the PC teams did their yearly physical annual memorial service online during the pandemic. Another team made videos to teach family members to do subcutaneous injections and shared it on WhatsApp.

Prioritising staff care and team support

Some hospitals recognised and prioritised staff well-being as physical and emotional stress levels were very high. The various factors contributing to this increased stress included pressure to keep up with and evaluate the credibility of new information regarding COVID-19 particularly on social media; a sense of responsibility and occasionally guilt for putting their families at risk of COVID-19; and the emotional trauma of seeing immense suffering all around them. A system of debriefing and team support was created, which improved coping and resilience among staff who were then able to continue to provide effective care.

Because the work pressure was so high during the surge, post surge, we have learnt to cut down…the numbers, because staff care is very important…a very high priority for us. Senior doctor (H7-UN)

Debriefing regularly is something we do. Every day we give time to the staff to share what they have gone through. if the staff are well, they can do better PC. If the staff are overwhelmed, how will they give to others when they are not well themselves. Senior doctor (H7-UN)

PC teams also recognised the needs of each other as a team. The inherent nature of PC as a multidisciplinary, team-based service was a great asset at a time when they felt their need for each other very acutely. Good teamwork was recognised for its value, so that care continued to be provided without interruption, and the morale of the team members could be maintained through a very challenging time.

…it was okay, because it was a team and not a single person working. It is a big asset as we work as a team. We could discuss and adjust. Quite a lot of changes, but still we could carry on, there was no interruption in the work… Senior doctor (H10-US)

Lessons through caring

Generosity and compassion

Some teams witnessed the extraordinary solidarity that suffering people in need can show towards each other in extremely challenging circumstances, such as that presented by the pandemic. Some families who had relatively enough (always in context and when compared with those around who had even less), redirected the food support that was being offered, to someone else who was needier than them at that point.

I have food today, but they don't. So, give it to them’, said one family. They were not thinking about tomorrow. They were not thinking about themselves, but they were thinking about the others. And that was very touching, especially, when everyone was selfish, everyone wanted their own. Senior doctor (H6-RN))

Psychosocial care

The need for psychosocial support, an inherent component of PC, was underlined during the pandemic experience. Worsening psychological distress among patients, families and communities at large could be recognised, validated and addressed by the teams whose training already sensitised and equipped them for such a response. Looking at the holistic needs of patients and families was a valuable competence among the teams in responding appropriately to the multidimensional needs of suffering communities.

…we saw the importance of social assessment, family support, finances, ability to cope. We were able to see from their (patient’s) point of view…Because of the escalating psychological distress also we were able to focus more on the psychosocial care of the patient… That was a learning point for me. Supporting them with dry food rations really helped them otherwise, they were really going through a tough time because many of them have lost jobs. Senior doctor (H10-US)

Redefining quality

The COVID-19 pandemic and its accompanying practical challenges on the ground forced the teams to redefine quality using a PC lens. This enabled them to achieve the best possible outcomes through learning; how to modify, adjust and adapt to the peculiar challenges they faced and matching them with available resources within the community.

The whole family was going through a tough time as many of them were working as daily wage laborer, with no jobs… we could care for them as a family. Beyond seeing them as a patient, seeing through the family and helping them through was a real learning experience for me and for our team. It really strengthened us as a team to see the importance of the team members. Sometimes we miss out on that, thinking that it was only the physical distress that we toil to relieve but it was much beyond that. Senior doctor (H10-US)

Discussion

The COVID-19 pandemic caused major disruptions to healthcare, HCPs including PC teams and communities. This study provides greater insight into the different disruptions and the varied challenges during the first and second wave of COVID-19 including response and adaptations of PC teams that facilitated patient care and support, community awareness and education and the strengths of PC teams.

Early during the lockdown, high numbers of migrant workers struggled as they returned home on foot without employment and food.6 FBHs that encountered them in the community made temporary provision for stay (tents) and provided free food. The multidimensional impact of the pandemic, especially its impact on the employment of people in rural areas who are migrant workers, has been highlighted and a public health call has been made.7

The healthcare system in rural India with shortage in medical professionals affecting quality and availability of care was further challenged during the pandemic.7 FBHs in rural areas stepped up care for non-COVID and COVID-19 patients and continued to provide needed care even when other local hospitals closed services especially during the lockdown and early pandemic. Seven of the 10 FBHs provided COVID-19 care and one more FBH expanded their service for COVID-19 care during the second wave. Many FBHs have a focus to provide healthcare in rural areas, serving the poor and marginalised with established PC services using a public health approach.8 9 This was very evident in this study where the community connections that most of the hospitals had enabled them to navigate through the community easily to provide care in many aspects. That included COVID-19 awareness, health education, raising funds to provide food and medicines for the suffering community, responding to varied needs like education, and access to hospitals. This strength of FBHs was identified and used by the government and NGOs, to work collaboratively and help communities.

All the informants in this interview study had observed the disruption to cancer care during the pandemic. A large study across 41 cancer centres in India during the early pandemic (March to May 2020) showed reduction in number of new patients with cancer, follow-up visits, hospital admissions, outpatient chemotherapy, major and minor surgeries, radiotherapy, radiological and pathological diagnostic tests and PC referrals. Such reductions were greater in larger than smaller cities.10 A study from Kenya during the pandemic identified that participants without access to hospitals due to travel restrictions were 15 time more likely to experience delay in cancer care (OR 14.90, 95% CI 7.44 to 29.85).11 From our interviews, we understand that travel restrictions were eased more during the second wave and one of the FBHs took extra effort to provide letters for patients who needed to get to hospitals for medical care and this was honoured by the public transport and helped them access hospitals at the right time.

PC services were affected in terms of access, symptom management, end-of-life care and domiciliary care. However, all PC teams in the FBHs responded quickly to patient needs and adapted care provided to support them better (table 2). It is interesting to note similar changes and adaptations by specialist PC teams from across the world. The CovPall multinational study that looked at innovation and practice change by specialist PC teams during the pandemic identified specialist PC teams to be flexible, adaptive and agents that made rapid changes. These included embracing low-cost solutions, streamlining, extending and increasing outreach of services, using technology for communication and prioritising staff well-being. The barriers identified were fear, anxiety and funding. The enablers were teamwork, staff flexibility, pre-existing IT infrastructure and strong leadership.12 A systematic review and narrative synthesis of 36 studies across many countries on changes in PC for patients with cancer and improvements in PC quality during the COVID-19 identified cancer treatment delays and PC-related challenges in the home and hospital setting as also seen in our study. Some of the strategies they employed included telemedicine, integration of resources to care for the mental health of patients and staff.13 A qualitative study to understand experiences of different stakeholders and explore challenges and suggestions to resolve them in Iran on integration of home-based PC services for patients with caner during COVID-19, reported barriers on ‘education, implementation, policy and drug availability’.14 Established, integrated home care services were recommended as these can reach out to vulnerable groups during such crises. Such home-based PC services existed in all the study FBHs, which enabled them to bridge the healthcare gap during the pandemic.

All the PC teams in the FBHs were busy engaging with the increased PC needs, stepping in to help with COVID-19 educational awareness and medical care and other community needs. The multinational survey (COVPall) also reported that 48% of PC services were busier during the pandemic, especially those that provided home care services and those that were publicly managed.15 Despite the added challenges and responsibilities all informants appreciated the strength of teamwork and efforts taken to support the team and HCPs through debriefing session, tailoring workload and proactive staff support which enabled them during such overwhelming times.

The strength and uniqueness of this study is that it has captured in-depth insights of real time experiences of HCPs working in different FBHs across diverse geographical and healthcare settings in India during the first two waves of the COVID-19 pandemic in India with focus on communities, healthcare, innovations and adaptations, enablers and challenges.

The numbers interviewed are small, this was partly due to the pressure that all HCPs were under due to the increased responsibilities placed on them by the pandemic. However these in-depth interviews produced rich data that is likely to be generalisable to similar settings especially in LMICs. Long-standing connections with the community acted as a leverage to connect, educate and support patients and community. Reconfiguration of services to provide care, adaptation of new ways of communicating virtually for consultation and patient care education, the holistic care approach of PC teams that enabled them to respond during the pandemic, teamwork, training and evident team support within PC are just a few to highlight and build on.

Conclusion

FBHs with integrated PC teams made a valuable contribution to healthcare during the first two waves of COVID-19 in India. Despite the fear and stigma within communities towards acceptance of healthcare workers during the early pandemic, they remained open and continued to provide consistent, good quality, person-centred care to those in need by adapting services to bridge healthcare and other needs especially to marginalised communities. Novel approaches were created, and other working practices adapted to overcome challenges, often achieving good outcomes despite scarce resources. However, they were limited by human resource, finances and availability of medications in some settings. Strong community engagement established integrated home care, teamwork with good support and success of different new adaptations are aspects that need to be built on further, advocated and researched to enhance and strengthen healthcare delivery more widely in India and similar countries.

Data availability statement

Data are available upon request.

Ethics statements

Patient consent for publication

Ethics approval

The study was approved by the Institution Review Board and Ethics Committee of Christian Medical College, Vellore (IRB Min No:13 134 (OBSERVE) dated 22 July2020) and EHA, Institutional Ethics Committee (Protocol number 238, dated 1 July 2020).

References

Footnotes

  • Twitter @JeniferJeba, @lizgrant360

  • Contributors JJS, AS, RAP, PJ, SD, DM, RP, KB, LG and SM were involved in the initial planning and design of the study. JJS, RAP, AS, PJ and SD were involved in the conduct of the study including interviews and transcription. All authors contributed to the analysis. JJS, AS and RAP were involved in the initial draft of the manuscript. All authors reviewed the manuscript and provided valuable input in the finalization of the manuscript. JJS is responsible for the overall content and will act as the guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.