The bittersweet experiences of providers of Home-Based Palliative Care (HBPalC): a qualitative study on the provider perspectives of HBPalC in Kerala, India

Abstract

Background

Home-based care is a fundamental component of the Kerala model of palliative care, which has received global recognition. The study explores the experiences of palliative care providers caring for a vulnerable community of patients. Findings may assist in identifying gaps and replicating Kerala’s palliative care model in other settings.

Methods

This descriptive qualitative study was conducted among palliative care providers (PCPs) and other stakeholders working with the Pain and Palliative Care Project of the National Health Mission (NHM), Thiruvananthapuram District, Kerala. Three Focus Group Discussions and 21 In-Depth Interviews were conducted among a purposively sampled group of participants including palliative care providers and patients. The validity of the data was ensured by data triangulation and member checks using standard methodologies. All interviews were audio recorded and thematic analysis was done using the Braun & Clarke method.

Results

PCPs experienced a multitude of positive and negative experiences and challenges. They found contentment in establishing an intimate relationship with patients and their families, getting the opportunity to deliver need-based quality care, crossing the hurdles of social acceptance and creating opportunities from challenges; giving them a feeling of satisfaction and self-worth. Challenges faced by caregivers included a lack of acceptance from patients/families, stress, burnout, and helplessness. Additionally, although the program was running efficiently in the community, palliative care providers faced administrative, organizational, and personal barriers that they felt impeded their contributions.

Conclusions

The study gives an in-depth illustration of the challenges and ambivalent experiences of palliative care providers working under Kerala’s home-based palliative care programme, providing care to a vulnerable section of society. The caregivers themselves represent an underprivileged community of nurses who struggle to provide the highest possible care despite the challenges and difficulties.

Introduction

More than 61 million people worldwide need palliative care and notably, 78% of them are from low and middle-income countries [1]. In the Indian context, only around 2% of the population has access to palliative care according to the Federation of Indian Chambers of Commerce & Industry (FICCI) report in 2022. However, the situation is much better in Kerala and the Lancet Commission on the Value of Death in 2022 identified Kerala’s community-based palliative care model as one of the best available models [2, 3]. Home-based palliative care is the hallmark of the Kerala model of palliative care. It helps care providers coordinate care, decrease the number of acute care visits, reduce costs, shorten hospital stays, and provide special care for those with serious illnesses in need of care [4]. Kerala’s Community-based palliative care model is rooted in the social process such that the local self-governments, government health institutions, private agencies, non-governmental organizations, research organizations and local volunteerism are integrated [5]. Palliative care has been integrated into the public health system of the State and a major share of the activities are done under the leadership of local self-governments through public health institutions using government budgetary allocations [6]. The funding includes the finance commission grant from the central government channelized through the National Health Mission(NHM) supplemented by plan funds from the state government. Additionally, certain local self-governments contribute their own funds to support the project. The project aims to identify the patients who need help, offer guidance for suitable treatment methodologies, deliver care at home for the bedridden and incurably ill, and equip the primary health care system and provide care including distribution of medicines to the socio-economically disadvantaged patients [7].

The key care provider is a palliative care provider/nurse who coordinates the medical expertise, public health networks, material resources and local volunteer efforts needed to provide the care in the area allotted [8]. The palliative care provider is the interface between the public health system delivering the services and the patients and their families, the beneficiaries [9]. A palliative care provider is a semi-professional with or without a degree or certification in nursing who has recieved a short term training in palliative care.They must distribute the allocated scarce resources, including ther time effectively among the beneficiaries, who are one of the most vulnerable segments of society [8]. The palliative care provider is not a regular staff member of the public health system, but a person appointed to the project on a contract basis, and this may add to their insecurities [10]. To the best of our knowledge, there are no studies that report the equity concerns of these underprivileged nurses taking care of a vulnerable section of the community. Understanding this will facilitate the identification of gaps and improve the replication of the Kerala model of palliative care across diverse settings. This study explores the experiences and challenges of Palliative Care Providers in home-based palliative care in the Thiruvananthapuram District of Kerala, India. Thiruvananthapuram Corporation is the the largest local governing body in Kerala in terms of population size and spearheads one of the most expansive palliative care initiatives in the state.

Methodology

Study design and participants

This descriptive qualitative study was conducted among the palliative care providers and other stakeholders working with the Pain and Palliative Care Project of the National Health Mission (NHM), Thiruvananthapuram District, Kerala, India in January-February 2020. We adopted a phenomenological approach to gain an in-depth understanding of the experiences and challenges faced by palliative care providers when serving a vulnerable community. There are a total of 88 Primary Palliative Care Providers, 33 Secondary Palliative Care Providers and one Tertiary level Palliative Care Provider working as paid staff under this project in Thiruvananthapuram Corporation. Purposive sampling technique was utilized to choose vocal participants from different geographical settings to capture multiple perspectives pertinent to the analysis. The study participants included palliative Care Providers (primary-level palliative care nurses, secondary-level palliative care nurses and tertiary-level palliative care nurses), along with some direct beneficiaries of the project (patients registered under palliative care), family members of the patients under the palliative care project, medical Officers of PHCs through which the project is running and the district level Programme Manager and coordinators of the Arogyakeralam (NHM) palliative care project to triangulate findings. (Table 1) The primary level health care represents the first contact point between the patients and the health system (primary health centres and subcentres) and provides the basic health care to the community, the secondary level refers to the first referral units namely the community health centres and the tertiary level refers to the district hospitals and medical colleges which provides highly specialised services.Data redundancy served as the criterion for concluding the study.

Table 1 List of FGDs and IDIs

Data collection

Palliative care providers (PCPs) at primary and secondary level health care were approached during their monthly meeting. The programme coordinaters introduced the investigators to the PCPs and the objective of the study was explained following which the investigators had a brief informal engagement with them. The PCPs who were willing to participate were invited to the Focus Group Discussions(FGDs) after obtaining informed written consent. Some highly vocal and resourceful participants, as determined by the investigators were invited for In-Depth Interviews(IDIs) ensuring that participants of the FGDs and IDIs were mutually exclusive. Regarding other stakeholders including patients, caretakers, medical officers and palliative programme managers, willing and vocal participants were chosen purposively. The interviews were conducted by two skilled investigators fluent in the local language (Malayalam), using an interview topic guide prepared after a detailed review of related literature and expert opinion from the field of public health, palliative care, and nursing. The tool contained questions to elicit the experiences and challenges of palliative care providers including probe questions. The validity of the data was ensured by data triangulation and me mber checks using standard methodologies [11, 12]. Multiple data collection techniques and different groups were involved to triangulate the findings [13]. For instance, the insights gathered from Palliative care providers were corroborated by patients and caretakers on multiple occasions. Incorporating their perspectives was crucial in gaining a comprehensive understanding of the explored topic. The interviews were conducted until data redundancy was obtained.

The venues for interviews were chosen as per the convenience of the participants. Any reflections of palliative care providers, especially the meaningful aspects of their daily work experiences and challenges in providing care were noted. It took around 30–45 min for an IDI and 45- 60 min for an FGD to be completed. The interview guide had open-ended questions facilitating sharing of their experiences in providing palliative care. The interviews proceeded with prompts on areas which were not addressed by the participants. Each FGD had 7–8 participants.

Data analysis

All interviews were audio recorded and the recordings were transcribed into the local language. The transcription was done by an investigator proficient in both the local language and English. Transcripts were returned to the participants to check for accuracy and resonance with their experiences and were then translated into English [14]. Inductive thematic analysis was done by using Braun and Clarke’s thematic data analysis method [15]. An iterative review of the transcripts was carried out to generate and organize codes using an inductive approach. Two researchers completed the data extraction from the eligible codes independently and reached a consensus on the extracted data. The codes were collated to generate subthemes which finally converged into themes agreed upon by all investigators. Data analysis was done using Atlas.ti software [16].

Ethics

The study proposal was approved by the Institute Ethics Committee of the Government College of Nursing, Thiruvananthapuram(CNT/IEC/34/7/19) and the administrative sanction for the study was obtained from the District Programme Manager, District Health and Family Welfare Society of the National Health Mission, Thiruvananthapuram. All interviews were conducted after obtaining written informed consent from the participants and separate consent for the audio recording of interviews was obtained.

Results

A total of 27 healthcare providers and 16 stakeholders from the National Health Mission, palliative care services, Thiruvananthapuram District were interviewed. The sociodemographic variables are summarised in Table 2.

Table 2 Socio-demographic details of participants

The narrations were packed with mixed emotions; despite the limited resources and challenges the palliative care providers expressed their happiness and satisfaction in rendering noteworthy care to a disadvantaged group. The analysis led to the emergence of 16 codes. The codes were grouped into positive experiences, negative experiences and challenges (administrative, organizational and personal challenges) as shown in Fig. 1.

Fig. 1

Themes, subthemes and codes generated in the analysis

Positive experiences

Positive Experiences of Palliative Care Providers in home-based palliative care involved 5 codes. Most of the participants experienced self-satisfaction as a part of their services to needy people. Many beneficiaries interviewed viewed the care provided by Palliative Care Providers as divine, reflecting both excellence and a spiritual significance. Establishment of an Intimate Relationship.

Home visiting, as affirmed by both the Palliative Care Providers and the patients provided an opportunity to establish intimate bonding. Participants opined that good communication helped to bridge the gaps. The relationships were so strong that the care providers were considered a member of the family.

“When one of our patients dies, we feel that a family member is lost. They consider me as a member of their family and call me ‘daughter’ instead of ‘nurse’. Hearing this I feel so happy… I value the acceptance from the patients and their families more than anything else.” (FGD1, primary-level PCP, P4).

“She is my daughter …she is not a nurse to me. She looks after me as if am a kid. She is a member of my family.” (eyes get filled with tears and cries.) (IDI, Patient 1).

Opportunity to deliver need-based care with quality

Participants believed that palliative care is the compassionate care of a dying person by minimizing their sufferings as they progress towards the end of life and this care should be provided with the utmost quality. However, the care providers expressed their concern that since most of the patients were in their terminal stages, establishing quality care with precision was a great effort. More than half of the patients opined that they were experiencing good quality care from the palliative services.

“Doctor suggested a below-knee surgery to remove the ulcerated limb, but my father was not willing. We got discharged from the hospital at request…. Fortunately, we came to meet this nurse and with her care and guidance, the wound [has] healed completely now… He can walk now and for us, she is a person with divine power.”(FGD 3, family member, P3).

“Here, the palliative care sister has been caring for me for about four years now. Once a month, she checks my blood sugar level, BP, provides medication, and spends some time talking to me. I have not received such a care from any hospital….I am completely satisfied with her service.” (IDI, Patient 2).

All categories of participants expressed their contentment for palliative care services being able to provide need-based cost-effective services.

“I have felt that home-based care is better than hospital care…. in-home care we can provide care by identifying their needs and patients including their family will be highly satisfied..”(FGD 2, secondary-level PCP, P4).

“In my opinion, home-based palliative care is cost-effective. When the patients are admitted to a hospital, apart from the medical expenses the caregivers lose their earnings. Both the patients and family members seem to be relaxed with home-based palliative care services and are better satisfied.”(IDI, Medical Officer 2).

A feeling of satisfaction and self-worth

Participants considered that living with contentment at the end of life is a great thing and palliative care providers facilitated this. They dispensed hope and brought smiles to the patients in their daily life. The majority of palliative care providers opined that the job gave them immense satisfaction and happiness. Caring for the needy was considered divine by some participants and many nurses expressed their delight in knowing that their services were valued and much accepted by the patients and their families.

“Even though it is a profession, it gives us a lot of satisfaction, especially when we are linking a client to the human need of care,…. as these people whom we care for are the victims of isolation as well as ill-treatment within the family bonds. They say that they feel like in heaven when we spend time with them.”(IDI, secondary-level PCP 1).

“Once a nurse told me that, she paid more value to the acceptance from the patients rather than giving the nomination to the best palliative nurse award.”(IDI, Programme Manager 2).

“Actually, I like this kind of work. Previously, I worked as a staff nurse in a hospital. But in this field, I can plan, work independently and care for the needy. This gives me much more satisfaction.”(IDI, secondary-level PCP 5).

Crossing the hurdles of social acceptance

Some palliative care providers narrated their experience of winning the heart of people through compassion, warmth, respect, and continuity of care. The majority of the participants agreed on the possibility of this achievement over time.

“An old mother was living with her two sons, one of them was mentally challenged and the other was paralysed after a stroke. When I met this stroke patient, he was lying on the floor surrounded by food waste and water…There were many pressure sores over his body from head to toe. We cleaned him completely, informed the nearby “Santhwanam” organization and arranged a good bed for the patient. The urine appeared blood-stained, we advised catheterization, but the mother refused. The mother was not willing to hospital admission also. On the very next day, I came to know that the patient passed away…. I was further shocked to hear that mother’s words that I had killed her son. A few months later she became our patient. We advocated for the village panchayat for giving her better housing and daily food through the “Patheyam” scheme. Now things have changed, she likes our presence… she even waits for the next visit to see us.”(IDI, primary-level PCP 1).

“People will accept you at some point. It may take time…but the warmth and continuum of care will definitely touch their hearts”(IDI-primary-level PCP 2).

Creating opportunities from challenges

Frequent challenges helped the Palliative Care Providers to “think out of the box” and to devise strategies to provide need-based care to palliative patients. It gave them opportunities to work independently and explore their creativity. For example, the absence of consistent physician services led to nurses being trained in ostomy care, enabling them to independently manage ostomy clinics.“We are conducting an ostomy clinic and a lymphedema clinic once a week. Now, I am conducting a lymphedema clinic in [name of place], a rural area of the Thiruvananthapuram district. At present, 6 patients are attending our clinic.” (IDI, secondary-level PCP 6).

Majority of the particpants described the poverty-stricken conditions of the patients and some initiatives for their support. A secondary level PCP highlighted some initiatives with dual benefits, supporting families in need while also enhancing community engagement in the palliative care program.

“Even though the workload is high, we can plan a lot in this field. ‘A matchbox of rice’…this was an initiative wherein a matchbox of rice was collected daily by the lower primary students for helping these palliative patients and at the end of the month it was handed over to the families in need.” (IDI, secondary-level PCP 3).

“…..Collection of newspapers and preparation of paper bags were another source [of] raising funds for them.”(IDI, secondary-level PCP 3).

Many palliative patients spend their lives confined indoors. Recognizing their concerns about loneliness, initiatives were introduced to provide them with recreational activities and opportunities for sightseeing.“Last year, a one-day tour was arranged by the Medical Officer in Kuttichal, Thiruvananthapuram for the palliative patients to the Trivandrum mall”. (IDI, secondary-level PCP 4).

Negative experiences

Palliative care providers also narrated their difficult lived experiences and the struggles they faced against the backdrop of happiness. Notably, three sub-themes related to negative experiences emerged.

Lack of Acceptance from patients/families

Some of the patients were considered a burden by their families. Negligence towards the ill and the stigma associated with it resulted in a lack of acceptance of palliative care services among many families.

“I can never forget an incident during our home visit in a rural area of Thiruvananthapuram district….an old lady was lying on the floor in a pathetic condition, surrounded by excreta and filth. We didn’t see any evidence of food preparation in that house. Suddenly a man approached and shouted at us… When we explained that we have come to help them he asked us to get away. We felt very bad for the lady, but we couldn’t help the situation.”(IDI, primary-level PCP 1).

Stress and burnout

Many of the palliative care providers described their feeling of physical, mental and emotional exhaustion. The painful condition of the patient is stressful for an empathetic caregiver. Many of them narrated their mental burnout being exposed to various difficult patient conditions daily.

“We found an old lady in a storeroom area of a house…She is a mother of five sons and one among them is a police officer. She had a fractured forearm and bleeding ulcers all over her body. I was literally crying while I dressed her wounds…she was crying too. For a few days, I was left in huge mental trauma, feeling so disappointed…’’(IDI, primary-level PCP 4).

Helplessness in relation to the immediacy of death

In many circumstances, palliative nurses are helpless. Many patients are diagnosed at a stage where the program has little to offer. Patients at the end stages of their life and their caregivers had several unmet needs and the nurses noticeably pointed out their helplessness in handling some situations. The resource constraints at their level also add to the burden.

“There was a leprosy patient in the corporation area of Thiruvananthapuram district when I joined palliative care. He was kept inside a room with no one to look after him. He was passing his excreta and urine in the same room and had foul-smelling ulcers. We wanted to bring him out of that room to offer him a life with dignity at least for a day. It took 3 days to get permission from the concerned authority to shift the patient and by that time, he was no more…. we couldn't do anything… or even I couldn't do anything… whenever I think about that incident, I feel so sad.” (Eyes get filled with tears) (IDI secondary-level PCP 3).

Challenges

The study highlighted the challenges of Palliative care providers in home-based palliative care under 3 main themes namely, administrative challenges, organizational challenges and personal challenges.

Administrative challenges

The participants narrated their perceptions of the administrative challenges which could be grouped under the following themes.

• (i) Lack of job security and low salary

The palliative care providers were appointed on a contractual basis, and they could lose their job at any point in time. They were not included in the social assistance/insurance schemes for employees of the non-organised sector like Employee Social Insurance (ESI) and Employee’s Provident Fund(EPF).

“I can’t even meet my daily needs…I have to travel 80 kms in a day. So, unless they increase the basic salary, my life will be very difficult…not just for me, but the majority of the nurses here have financial strains.” (FGD2, secondary level PCP P5).

“We don’t have any job security. On a rainy day, when I was at Amboori in Thiruvananthapuram district (this place underwent landslides in 2001)…. I was at the top of a hill to attend to a patient, and I thought for a moment, “What will happen to my family if a landslide hits us now?” (FGD2, secondary level PCP P3).

• (ii) Limited resources including human resource

It was evident from the interviews that the workload of Palliative Care Providers in home-based services is high and disproportionate. The care provider-patient ratio was a major challenge in many places.

“Ideally, we will be able to attend 8–10 patients in a day. In a city corporation area, the nurses have to attend to 24–26 patients a day, together with problems with the availability of the vehicle. It is very hectic…the quality of work gets compromised in some cases and we sacrifice our health too in this run..”(IDI, primary-level PCP 5).

• (iii) Lack of a uniform policy and Job description

Home-based palliative care lacked a uniform written policy and Job description. Participants considered that a uniformly defined job description can provide a consistent understanding across the health and other departments of the job roles of the palliative care providers and will aid in organizational growth.

“Apart from our regular work sometimes the medical officers assign other jobs for us, like inpatient duties, pharmacy duties, etc. Our job is not defined anywhere…”(IDI, secondary-level PCP 3).

“It would be better if we have uniformity in every palliative care unit. A well-written procedure and protocol will aid us in delivering our tasks better.”(FGD2, secondary-level P2).

Organizational challenges

Organizational challenges faced by the PCPs in home-based palliative care included transportation, training and supervision, and the difficulty in sustaining quality of care.

• (i) Transportation

The poor road networks in the remote areas were a limiting factor. Many areas were inaccessible through roads and the nurses walked long distances to deliver services. Many hospitals lacked a vehicle and vehicles were arranged on a quotation basis based on the availability of funds.

“My first posting was in a coastal area of Thiruvananthapuram district. That was a very unhygienic area, and many areas were inaccessible…. it was very difficult to walk carrying this large bag and patient care kit. At those times I hated this service…” (IDI primary-level PCP 3).

• (ii) Training and supervision

Though several training programmes were conducted for palliative nurses there was a gross disparity in the distribution of training. Nurses at the secondary and tertiary levels received adequate training while the primary care nurses were less equipped. Further, a uniform and periodic training schedule was reported to be lacking in the system. Supervisory activities were considered difficult as the majority of the outcomes cannot be measured directly.

“Along with monthly meetings, the pieces of training are conducted only based on needs and problems faced by the nurses and hence lacks a uniform distribution.”(IDI, Programme Manager 2).

“Occasionally, I will make surprise-visit to the field areas and evaluate their performance. Most of them are doing well. So, it is better to avoid unnecessary involvement,…their work cannot be measured in numbers, in the community you get to feel it…”(IDI, Programme Manager 1).

“I care for the feedback from the patients. Once in a month, the patient’s bystanders come to the OPD for medicines. From these family members, we will identify the care provided by the nurses.” (IDI, Medical Officer 2).

• (iii) System support for sustaining quality care

The quality of palliative services depends on a multitude of factors including availability of resources (including infrastructure, consumables and manpower), supportive visits from doctors, motivation of staff, funding, etc. The quality of care directly influences patient satisfaction. Further, palliative nurses need to tailor themselves to the demographic variations, and patient needs. Coercion with local self-government is extremely important as the project is funded by the LSGD department.

“There is no fixed hour of work …. people may call us for some help like catheter change, pain management etc. at any time of the day…and I am the single nurse attending to two areas due to staff shortage. On some days, I reach home by 7 or 8 pm only, and I am afraid the quality of my care is getting compromised to the burnout….” (IDI, primary-level PCP 2)

“We face a shortage of drugs. Many of the patients are taking costly medicines and we do not have a supply of them. It is very difficult to advise family members to buy medicines from their pocket because of their low living conditions. Shortage of drugs and other consumables affect the care in many situations.” (IDI, Medical Officer 2).

Personal challenges

The palliative care providers narrated their physical and psychological challenges. Novice nurses needed time to adjust to the system in planning the schedule of home visits and home care. Many of them felt the activities were different from the theories learnt and the work pattern demanded several improvisations in the field.

• (i) Physical Challenges

The nurses felt that the work was very tiring physically, as they had to be in the field for long hours and help the patients in several ways which demanded physical labour too, like washing and cleaning the patient and shifting them. They also expressed their concerns regarding the spread of illness and the weakening of their health on account of their busy schedule and burnout.

“Sometimes, we have to be in very dirty environments. We lift the patients and wash them. for having lunch during the home visits. Many days we don't get a clean place to have food and I started skipping meals…. and now developed a gastric ulcer and am on treatment….Nevertheless, I still have to skip meals some days.” (FGD2, secondary-level PCP P1).

• (ii) Psychological Challenges

Many nurses reported their mental health issues including depression and some were on treatment. The stressful work environment demanding interaction with a plentitude of people in pain, being helpless in several situations and witnessing deaths were facilitating psychological burnout in many nurses. Many of them reported that they have become mentally weak and their stress tolerance level has come down.

“Facing a patient without a doctor or experienced person, in home-based care is also a great stress for us.”(IDI, primary-level PCP 3).

“It is a very stressful job in all sense…continuously hearing patient problems to witnessing deaths….my stress tolerance threshold has come down and now I am unable to withstand stress, at times I get emotional too fast…We need someone to vent our feelings. I think it will be beneficial to conduct stress reduction programs, at least once a month.” (IDI, primary-level PCP 4).

Discussion

The community-based palliative care project in Kerala is a good model to show how to integrate such services into the health system. Further, the high sustainability of the model, owing to the resources being raised from the community itself is highly commendable [17, 18]. Hojjat-Assari S, et al. (2022) underscores the significance of seizing the opportunity presented by the current healthcare system to integrate palliative care into primary health care. This integration can enhance access to health services, thereby facilitating a peaceful end-of-life experience [19]. The outcome of the community-based palliative care initiative of Kerala is documented widely and has found mention in the Quality of death report, 2010 [20]. A study on 20 years of homebased care from Malappuram district of Kerala has highlighted the low rate of opting out of care as a marker of the success of this model [21]. The well-functioning health system of the State may be an opportunity to run such a program [2, 3, 6].

The segment of the population seeking community-based palliative care is often marginalised and poor [22]. In a resource-poor setting, meeting the requirements of both humans and materials is a challenge, especially when the care is provided to a marginalized community. Hammoda et al. tried to explore the difference in challenges faced in palliative care for cancer patients by the developed and the developing countries and noted a lack of resources and inadequate physical infrastructure along with administrative challenges to dominate in developing countries [23]. Research on primary palliative care in the UK found repeated reorganization, loss of administrative support and lack of computerized records to resolve the difficulties in District Nurse engagement as major challenges [24]. Notably, these findings are consonant with the sub-themes of the current study identified under administrative challenges such as problems with staffing, and work overload, especially in handling data. Further, the nurses were concerned about the challenges at the organizational level including transportation, sustaining the quality of care, training and supervision. The administrational and organizational challenges of home-based palliative care must be addressed to ensure quality service delivery and patient and caregiver satisfaction. At the same time, the system should realize the magnitude of work required on the part of a palliative care provider and the quantum of physical and psychological stress they undergo.

This study analyses and defines the experiences (positive and negative) of, and the challenges faced by palliative care providers in the government-funded, home-based palliative care project in south Kerala. The findings of the current study include the physical, and psychological stress and training needs of Palliative Care Providers in care services similar to a Norwegian study [25]. Here, Danielsen et. al report collaboration and relationship between patient, family, nurses and doctors to be an important facilitator for optimum palliative care. The implacable stress faced by the palliative care providers and its psychological impacts ranging from sleep disturbances to depressive disorders, especially during situations like pandemics/epidemics have been highlighted in literature [26]. The importance of continuing education prioritizing on stress management, communication skills, pain management, and symptom assessment was emphasized by Sellick et al [27].

The positive experiences shared by palliative care providers indicated that the project created a win–win situation where care is provided at the patient’s home without compromising quality. The feeling of satisfaction and self-worth was highlighted along with the establishment of a strong relationship with the patient, family and health system, which helped the nurses to cross the hurdles of social acceptance. Our study concords with the findings of Philip RR, et al. (2019) that the caregiver develops an intimate bonding with the family members and this relationship pulls community-based palliative care forward. [28] As the title of the referred study depicts, minor interventions from the side of the caregiver can play a big role in the life of the patients and their families [28]. The positive experiences described in our interviews were centred around a feeling of satisfaction and happiness along with the delivery of good quality, cost-effective and need-based care to a vulnerable population. Some of the themes in this study are supported by the findings of the study done to explore the stress of Palliative Care Providers of Malaya Medical Centre in Malaysia. The major themes generated from that study were Organizational Challenges, Emotional Involvement, Death and Dying Thoughts [29]. A digitally enabled community outreach model of a tertiary hospital was also reported to have a high acceptance rate in the community [30].

The agony and pain created by the medical condition, stigma and socio-economic deprivation, the diversity and complexity of services required and the disparity in patient-nurse ratio make the job of a care provider extremely challenging. They work in a resource-poor environment and at times feel helpless to deal with the complex socio-economic and medical problems the clients come across [31]. Meta-analytical estimations drawing data from six studies primarily from Spain, Italy and Singapore reported a high level of burnout (24–30%) among palliative care providers with high influence on depersonalization, emotional exhaustion, and low personal accomplishment and suggests an improvement in the working environment [32]. Compared to the palliative care providers of an institution, community health care workers suffer more conflicts because of their limited training, workload and lack of access to resources [33]. Lack of job security, low salary and absence of a uniform job description were considered important challenges by a majority of the participants. At the same time, some palliative care providers considered the lack of this job description as an opportunity to innovate and render need-based care to their patients. Some of the themes in this study are incongruent with the study findings of a qualitative study done in South Africa to study the effects of a palliative care strategy with home visits by nurses to follow-up cancer patients in a clinical setting and those themes included the needed resources with hospital policies, adequate staff strength, commitment and funding [34].

Our study has a few limitations; the field health workers like ASHA (Accredited Social Health Activists) and physiotherapists are integral to the palliative project, but this study does not include their perspectives. However, we have studied the perspectives of programme managers, medical officer, patients and their families to ensure data triangulation and get an unbiased insight. We had to restrict the time of FGDs as the study participants had multiple responsibilities and busy duty schedules.

Conclusion

The study gives an in-depth illustration of the ambivalent experiences and challenges of palliative care providers working under Kerala's home-based palliative care programme, providing care to a vulnerable section of society. The caregivers themselves represent an underprivileged community of nurses who struggle to provide the highest possible care despite challenges and difficulties. Their experiences were diverse with a multitude of positive and negative experiences. They found contentment in establishing an intimate relationship with patients and their families, getting the opportunity to deliver need-based quality care, crossing the hurdles of social acceptance and creating opportunities from challenges; giving them a feeling of satisfaction and self-worth. On the contrary, there were instances where caregivers faced challenegs by a lack of acceptance from patients/families, stress, burnout, and helplessness. Additionally, although the program runs efficiently in the community, palliative care providers face several challenges which need to be addressed on an administrative, organizational, and personal level.