The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala

The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala Resmi Madhavanpillai Indirabhai, Chithralekha Leela, Arya Rahul, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-2803247/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 14 Feb, 2025 Read the published version in International Journal for Equity in Health → Version 1 posted 7 You are reading this latest preprint version Abstract Background: Home-based palliative care is a fundamental component of the Kerala model of palliative care, which has received global recognition. The study explores the challenges and experiences faced by palliative care providers caring for a vulnerable community of patients. The findings will 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. 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. There were also instances where caregivers were weakened 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. Conclusions: 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 volunteer community of nurses who struggle to provide the highest possible care despite the challenges and difficulties. palliative care Kerala equity palliative care providers Figures Figure 1 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. However, the situation is much better in Kerala and the Lancet Commission on the value of death 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 the 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 Community-based palliative care model in Kerala is routed in the social process where the local self-governments, government health institutions, private agencies, non-governmental organizations, research organizations and local volunteerism are integrated. 5 Palliative care has been highly 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 budgetary allocation by the government. 6 The palliative care delivery through the public health system is partially funded and equipped by the National Health Mission through the Pain and Palliative Care Project which facilitates the development of community-based home care initiatives under the leadership of the Local Self Government department. 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 Regarding the human resource component, the key care provider is the palliative care nurse who coordinates the medical expertise, public health networks, material resources and local volunteerism to provide the care in the area allotted to her. 8 The palliative care provider is the interface between the public health system delivering the services and the patients and their families, the beneficiaries. A palliative care provider is a semi-professional with a degree or certification in nursing and has been given additional training in palliative care. She must distribute the scarce resources allocated to her, including her time effectively among her beneficiaries, who are one of the most vulnerable segments of society. 8 Palliative care provider is not regular staff of the public health system, but a person appointed to the project on a contract basis and this may add to their insecurities. 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. This study explores the experiences and challenges of Palliative Care Providers in home-based palliative care in the Thiruvananthapuram District of Kerala, India. This understanding will aid in identifying gaps and better replication of the Kerala model of palliative care in other settings. 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 used an inductive approach to gain an in-depth understanding of the experiences and challenges faced by palliative care providers when serving a vulnerable community. There are 88 Primary Palliative Care Providers, 33 Secondary Palliative Care Providers and one Tertiary level Palliative Care Provider working under this project. The different categories of stakeholders included in this study are palliative Care Providers (primary-level palliative care nurses, secondary-level palliative care nurses and tertiary-level palliative care nurses), 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. The participants were chosen by purposive sampling technique to capture multiple perspectives. (Table 1 ) Table 1 Details of Study Participants Participant group Age in years (Range) Gender Experience in years (Range) Number of home visits conducted per month (Range) Hours of work per week (Range) Number of FGDs Number of IDIs Tertiary level Palliative Care Provider (N = 1) 35 woman 10 - 42 0 1 Secondary-level Palliative Care Providers (N = 33) 23–36 all women 1.5–10 12–180 42–48 1 5 Primary-level Palliative Care Providers (N = 88) 28–45 all women 4–11 128–336 35–56 1 6 Direct beneficiaries of the project: Patients 0 3 Caregivers of the patients 36–63 Men (3) and women (5) 1 0 Medical Officers (N = 3) 33–51 all women 0 3 Palliative Programme Managers (N = 3) 33–50 all men 0 3 Data collection Focus Group Discussions(FGDs) and In-Depth Interviews(IDIs) were conducted until data redundancy was obtained. The interviews were conducted 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 member checks using standard methodologies. Multiple data collection techniques and different groups were involved to triangulate the findings. The venues for interviews were chosen at 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 minutes for an IDI and 45–60 minutes 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. Transcripts were returned to the participants to check for accuracy and resonance with their experiences and were then translated into English. Thematic analysis of transcribed verbatim was done by using Braun & Clarke thematic data analysis method(2006). 9 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 9. 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 Variables Number of participants Age in years N = 43 20–40 26 41–60 14 61–80 3 Gender N = 43 Male 6 Female 37 Educational qualification of PCP N = 27 Domestic Nursing 2 Auxiliary Nurse Midwife 6 General Nursing and Midwifery 11 BSc Nursing 7 Fellowship in Palliative Care 1 No. of home visits of PCP N = 27 200 3 Experience of PCP in Palliative care N = 27 11yrs 1 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 . 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. Most of the beneficiaries interviewed considered the care received from the Palliative Care Providers to be divine. 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 healed completely now... He can walk now and for us, she is a person with divine power.”(FGD 3, family member, P3) “The palliative nurse in this area is giving care in an extremely passionate manner. I witnessed it the very first day I accompanied her in-home care.” (IDI, Medical Officer 3) All categories of participants expressed their contempt 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… even she 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 encounters with 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. “ We are conducting an ostomy clinic and a lymphedema clinic once a week. Now, I am conducting a lymphedema clinic in Vellanadu, a rural area of the Thiruvananthapuram district. At present, 6 patients are attending our clinic .” (IDI, secondary-level PCP 6) “ 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 sources for raising funds for them .”(IDI, secondary-level PCP 3) “ 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. Linked to this work stress, some care providers faced health issues due to the lack of time for adequate diet and rest. Many of them narrated their mental burnout being exposed to various difficult patient conditions daily. “We are unable to have food on time. If we are in a remote area, we have to come back to a town for buying food. To avoid the wastage of time and petrol we will just omit our lunch…” (IDI, primary-level PCP 6) “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) Feeling of helplessness 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 kilometres 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 hit 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) Difficulty in sustaining quality of 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 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 positive experience of the care provider 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 affirms 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. 13 As the title of the referred study depicts, minor interventions from the side of the caregiver can have big roles to play in the life of the patients and their families. 13 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. 14 A digitally enabled community outreach model of a tertiary hospital was also reported to have a high acceptance rate in the community. 15 The segment of the population seeking community-based palliative care is often marginalised and poor. 16 Moreover, 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. 17 Meta-analytical estimations by Gómez-Urquiza et al. 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. 18 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. 19 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. 12 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. 20 Here, Danielsen et. al reports collaboration and relationship between patient, family, nurses and doctors to be an important facilitator for optimum palliative care. The community-based palliative care in Kerala is a good model to show how to integrate such services into the health system. Hojjat-Assari S, et al (2022) identifies three major themes in the perception of the caregiver in integrating palliative care into primary health care; using health system structure as an opportunity, meeting the requirements and achieving the outcomes. 21 The outcome of the community-based palliative care initiative of Kerala is documented widely and is integrated into the health system. The well-functioning health system of the State may be an opportunity to run such a program. 2 , 3 , 6 – 8 However, 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. A primary palliative care research from 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. 22 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. 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 volunteer 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 were weakened 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. Declarations Ethics approval and consent to participate The study proposal was approved by the Institute Ethics Committee of the Government College of Nursing, Thiruvananthapuram(CNT/IEC/34/7/19). All interviews were conducted after obtaining written informed consent from the participants and separate consent for the audio recording of interviews was obtained. Consent for Publication Not applicable Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author upon reasonable request. Competing interests The authors declare that they have no competing interests Funding This study was not funded by any grants, institutions, or organizations Authors' contributions RMI, CL, AR and TSA contributed to the plan and design of the study. RMI and AR developed the interview guide which was reviewed by CL and TSA. RMI and AR led the data collection and performed the data analyses. All authors participated in the interpretation of the results. AR and RMI drafted the manuscript. CL and TSA did the critical revision of the manuscript and approved the final version. All authors had full access to the data and take responsibility for the data integrity and analysis. Acknowledgements We extend our sincere gratitude to the palliative care providers, medical officers, program managers and the beneficiaries of the Arogyakeralam project who participated in this study and shared their experiences. We thank Dr Rema Devi S (Associate Professor (Rtd), Department of Community Medicine, Government Medical College, Thiruvananthapuram), Dr Jolly Jose (Vice Principal), Dr Lucyamma Joseph (Professor), Mrs Asmi S. S. (Assistant Professor) Government College of Nursing, Thiruvananthapuram for their valuable support. References Rodriguez A. Global need for palliative and pain relief. News Room, AJMC [Internet]. 2017 Oct 19.Available from https://www.ajmc.com/view/global-need for-palliative-care-and-pain-relief . Rohan M. Palliative care in Kerala a success story. The Hindu, 2020 March 13. Available from http://www.thehindu.com/society/palliative-care-in-kerala-a-success-story . Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, Doble B, Dullie L, Durie R, Finkelstein EA, Guglani S, Hodson M, Husebø BS, Kellehear A, Kitzinger C, Knaul FM, Murray SA, Neuberger J, O'Mahony S, Rajagopal MR, Russell S, Sase E, Sleeman KE, Solomon S, Taylor R, van Tutu M, Wyatt K. Lancet Commission on the Value of Death. Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet. 2022 Feb;26(10327):837–84. Schroeder K, Lorenz K. Nursing and the future of palliative care,Asia-Pacific Journal of Palliative Care.2018Jan-Mar; 5(1):4–8. Kumar SK. Kerala, India: a regional community-based palliative care model. J Pain Symptom Manage. 2007 May;33(5):623–7. Azeez EPA, Anbuselvi G. Is the Kerala Model of Community-Based Palliative Care Operations Sustainable? Evidence from the Field. Indian J Palliat Care. 2021 Jan-Mar;27(1):18–22. Palliative care-Government of Kerala, India., 2018Nov 07. Available from http://kerala.gov.in>palliativecare . Lijimol AS, Krishnan A, Rajagopal MR, Gopal BK, Booth CM. Improving Access and Quality of Palliative Care in Kerala: A Cross-sectional Study of Providers in Routine Practice. Indian J Palliat Care. 2020 Oct-Dec;26(4):500–5. Birt L, Scott S, Cavers D, Cambell C, Walter F. Member checking: a tool to enhance trustworthiness or merely a nod to validation? Qualitative health research, 2016 Jun; 26(13):1802–1811. Polit FD, Beck CT. Nursing research generating and assessing evidence for nursing practices. 10th edition. Wolter kluwer; 2016. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. Ndiok A, Ncama BP. A qualitative study of home visiting as a palliative care strategy to follow-up cancer patients by nurses in clinical setting in a developing country.Scandinavian journal of caring science, March2019; (1):185–196 Philip RR, Venables E, Manima A, Tripathy JP, Philip S. Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India. BMC Palliat Care. 2019 Feb;4(1):16. Beng TS, Chin LE, Guan NC, Pathmavathi S, Yee A, Wu C et al. The Experiences of Stress of Palliative Care Providers in Malaysia: A Thematic Analysis.American Journal of Hospice and Palliative Medicine2013:32(1),15–28. Balasubramanian S, Biji MS, Ranjith MK, Abhina SS. Patient satisfaction in Home care services through e-Palliative Care -An experience of tertiary cancer centre from Kerala. Indian J Palliat Care. 2022 Jul-Sep;28(3):250–5. George PN, Ganesh MP, Chawak S, Chittem M. Factors Associated with Choosing the Kerala Model of Palliative Care versus Standard Care among Indian Cancer Patients.Indian Journal of Medical and Paediatric Oncology. 2022 Mar 14;43. Joad ASK, Hota A, Agarwal P, Patel K, Patel K, Puri J, Shin S. "I want to live, but… the desire to live and its physical, psychological, spiritual, and social factors among advanced cancer patients: evidence from the APPROACH study in India. BMC Palliat Care. 2022 Aug 31;21(1):153. Gómez-Urquiza JL, Albendín-García L, Velando-Soriano A, Ortega-Campos E, Ramírez-Baena L, Membrive-Jiménez MJ, Suleiman-Martos N. Burnout in Palliative Care Nurses, Prevalence and Risk Factors: A Systematic Review with Meta-Analysis. Int J Environ Res Public Health. 2020 Oct 21;17(20):7672. doi: 10.3390/ijerph17207672 . PMID: 33096682; PMCID: PMC7589426. Van Heerden EM, Jenkins LS. The role of community health workers in palliative care in a rural subdistrict in South Africa. Afr J Prim Health Care Fam Med. 2022 Nov;9(1):e1–e9. Danielsen BV, Sand AM, Forland O. Experiences and challenges of home care nurses and general practitioners in home based palliative care – a qualitative study.BMC Palliative Care, 2018Jul;17(95) Hojjat-Assari S, Rassouli M, Kaveh V, Heydari H. Explaining health care providers' perceptions about the integration of palliative care with primary health care; a qualitative study. BMC Prim Care. 2022 Sep;7(1):226. Barclay S, Moran E, Boase S. Primary palliative care research: opportunities and challenges. BMJ Supportive and Palliative care. 2019;9:468–72. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 14 Feb, 2025 Read the published version in International Journal for Equity in Health → Version 1 posted Editorial decision: Major revision 22 Aug, 2023 Reviews received at journal 15 May, 2023 Reviewers agreed at journal 11 May, 2023 Reviewers invited by journal 11 May, 2023 Editor assigned by journal 12 Apr, 2023 Submission checks completed at journal 12 Apr, 2023 First submitted to journal 12 Apr, 2023 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-2803247","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":191170550,"identity":"e09ada8f-dca2-4164-8591-a3be4e14c858","order_by":0,"name":"Resmi Madhavanpillai Indirabhai","email":"","orcid":"","institution":"Government Medical College, Thiruvananthapuram","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Resmi","middleName":"Madhavanpillai","lastName":"Indirabhai","suffix":""},{"id":191170551,"identity":"5bddc935-67b2-4800-afba-8c224d7f8c3f","order_by":1,"name":"Chithralekha Leela","email":"","orcid":"","institution":"Government Nursing College, Kollam","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Chithralekha","middleName":"","lastName":"Leela","suffix":""},{"id":191170552,"identity":"a63c478e-f2ab-4cf7-a68b-897b0d8abf4c","order_by":2,"name":"Arya Rahul","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAyklEQVRIiWNgGAWjYBADORBx4AEpWozBWhJI0ZLYACKJ0sI/+4zhhx9/7qTPDzv8EGiLnZxuAwEtEudyjCV7257lbrydZgDUkmxsdoCQNWd4DCR4Gw7nbpydANJyIHEbIS3yZ3iMf/75czjdcHb6B+K0GJzhMZPmYTucIC+dQ6QthmfYyqxl254ZbpDOKTiQYECEX+TOMG+++ebPHXn52embP3yosJMj7H0GDgMgcYDBAKzSgKByEGB/ANYi30CU6lEwCkbBKBiJAADHqkmI5oHjeQAAAABJRU5ErkJggg==","orcid":"","institution":"Indian Council of Medical Research- Vector Control Research Centre","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Arya","middleName":"","lastName":"Rahul","suffix":""},{"id":191170553,"identity":"1f650636-0d58-4933-81b9-7f59670ab124","order_by":3,"name":"Thekkumkara Surendran Anish","email":"","orcid":"","institution":"Government Medical College Manjeri","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Thekkumkara","middleName":"Surendran","lastName":"Anish","suffix":""}],"badges":[],"createdAt":"2023-04-12 05:44:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-2803247/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-2803247/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12939-024-02354-6","type":"published","date":"2025-02-14T15:57:17+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":35767469,"identity":"bc2e3a6c-5152-4853-aeb2-142e3d8eb252","added_by":"auto","created_at":"2023-04-14 13:18:52","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":182287,"visible":true,"origin":"","legend":"\u003cp\u003eThemes, subthemes and codes generated in the analysis\u003c/p\u003e","description":"","filename":"Figure1.png","url":"https://assets-eu.researchsquare.com/files/rs-2803247/v1/ca1b76bad56ffd86bddd3180.png"},{"id":76487671,"identity":"817db366-ddd7-43f5-a29b-fb2bfa056749","added_by":"auto","created_at":"2025-02-17 16:10:54","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":814947,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-2803247/v1/b07c2b60-cf27-4026-834e-7bdbd9d6b047.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala","fulltext":[{"header":"Introduction","content":"\u003cp\u003eMore than 61\u0026nbsp;million people worldwide need palliative care and notably, 78% of them are from low and middle-income countries.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e In the Indian context, only around 2% of the population has access to palliative care. However, the situation is much better in Kerala and the Lancet Commission on the value of death identified Kerala's community-based palliative care model as one of the best available models.\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e,\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e Home-based palliative care is the hallmark of the Kerala model of palliative care. It helps the 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.\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e Community-based palliative care model in Kerala is routed in the social process where the local self-governments, government health institutions, private agencies, non-governmental organizations, research organizations and local volunteerism are integrated.\u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e Palliative care has been highly 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 budgetary allocation by the government.\u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe palliative care delivery through the public health system is partially funded and equipped by the National Health Mission through the Pain and Palliative Care Project which facilitates the development of community-based home care initiatives under the leadership of the Local Self Government department. 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.\u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e Regarding the human resource component, the key care provider is the palliative care nurse who coordinates the medical expertise, public health networks, material resources and local volunteerism to provide the care in the area allotted to her.\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe palliative care provider is the interface between the public health system delivering the services and the patients and their families, the beneficiaries. A palliative care provider is a semi-professional with a degree or certification in nursing and has been given additional training in palliative care. She must distribute the scarce resources allocated to her, including her time effectively among her beneficiaries, who are one of the most vulnerable segments of society.\u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e Palliative care provider is not regular staff of the public health system, but a person appointed to the project on a contract basis and this may add to their insecurities. 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. This study explores the experiences and challenges of Palliative Care Providers in home-based palliative care in the Thiruvananthapuram District of Kerala, India. This understanding will aid in identifying gaps and better replication of the Kerala model of palliative care in other settings.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eStudy design and participants\u003c/p\u003e \u003cp\u003e 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 used an inductive approach to gain an in-depth understanding of the experiences and challenges faced by palliative care providers when serving a vulnerable community. There are 88 Primary Palliative Care Providers, 33 Secondary Palliative Care Providers and one Tertiary level Palliative Care Provider working under this project. The different categories of stakeholders included in this study are palliative Care Providers (primary-level palliative care nurses, secondary-level palliative care nurses and tertiary-level palliative care nurses), 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. The participants were chosen by purposive sampling technique to capture multiple perspectives. (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDetails of Study Participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"8\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant group\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge in years (Range)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eExperience in years (Range)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNumber of home visits conducted per month (Range)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHours of work per week (Range)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eNumber of FGDs\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNumber of IDIs\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTertiary level Palliative Care Provider (N\u0026thinsp;=\u0026thinsp;1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ewoman\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e42\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSecondary-level Palliative Care Providers (N\u0026thinsp;=\u0026thinsp;33)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23\u0026ndash;36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eall women\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1.5\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e12\u0026ndash;180\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e42\u0026ndash;48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrimary-level Palliative Care Providers (N\u0026thinsp;=\u0026thinsp;88)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e28\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eall women\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4\u0026ndash;11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e128\u0026ndash;336\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e35\u0026ndash;56\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDirect beneficiaries of the project: Patients\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaregivers of the patients\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e36\u0026ndash;63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMen (3) and women (5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMedical Officers (N\u0026thinsp;=\u0026thinsp;3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e33\u0026ndash;51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eall women\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePalliative Programme Managers (N\u0026thinsp;=\u0026thinsp;3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e33\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eall men\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eData collection\u003c/p\u003e \u003cp\u003eFocus Group Discussions(FGDs) and In-Depth Interviews(IDIs) were conducted until data redundancy was obtained. The interviews were conducted 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 member checks using standard methodologies. Multiple data collection techniques and different groups were involved to triangulate the findings.\u003c/p\u003e \u003cp\u003eThe venues for interviews were chosen at 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\u0026ndash;45 minutes for an IDI and 45\u0026ndash;60 minutes 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\u0026ndash;8 participants.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eAll interviews were audio recorded and the recordings were transcribed into the local language. Transcripts were returned to the participants to check for accuracy and resonance with their experiences and were then translated into English. Thematic analysis of transcribed verbatim was done by using Braun \u0026amp; Clarke thematic data analysis method(2006).\u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e 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 9.\u003c/p\u003e \u003cp\u003eEthics\u003c/p\u003e \u003cp\u003e 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.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eA 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 \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSocio-demographic details of participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariables\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNumber of participants\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eAge in years\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20\u0026ndash;40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e26\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e41\u0026ndash;60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e61\u0026ndash;80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e37\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eEducational qualification of PCP\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDomestic Nursing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAuxiliary Nurse Midwife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGeneral Nursing and Midwifery\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBSc Nursing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFellowship in Palliative Care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eNo. of home visits of PCP\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;100\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e100\u0026ndash;200\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;200\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eExperience of PCP in Palliative care\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;5 yrs.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6\u0026ndash;10 yrs.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;11yrs\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe 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.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003ePositive experiences\u003c/strong\u003e \u003cp\u003ePositive 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. Most of the beneficiaries interviewed considered the care received from the Palliative Care Providers to be divine.\u003c/p\u003e \u003c/p\u003e \u003cp\u003eEstablishment of an Intimate Relationship\u003c/p\u003e \u003cp\u003e 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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 \u0026lsquo;daughter\u0026rsquo; instead of \u0026lsquo;nurse\u0026rsquo;. Hearing this I feel so happy\u0026hellip; I value the acceptance from the patients and their families more than anything else.\u0026rdquo; (\u003c/em\u003eFGD1, primary-level PCP, P4)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;She is my daughter \u0026hellip;she is not a nurse to me. She looks after me as if am a kid. She is a member of my family.\u0026rdquo; (eyes get filled with tears and cries.)\u003c/em\u003e (IDI, Patient 1)\u003c/p\u003e \u003cp\u003eOpportunity to deliver need-based care with quality\u003c/p\u003e \u003cp\u003eParticipants 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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\u0026hellip;. Fortunately, we came to meet this nurse and with her care and guidance, the wound healed completely now... He can walk now and for us, she is a person with divine power.\u0026rdquo;(FGD 3, family member, P3)\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;The palliative nurse in this area is giving care in an extremely passionate manner. I witnessed it the very first day I accompanied her in-home care.\u0026rdquo; (IDI, Medical Officer 3)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eAll categories of participants expressed their contempt for palliative care services being able to provide need-based cost-effective services.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I have felt that home-based care is better than hospital care\u0026hellip;. in-home care we can provide care by identifying their needs and patients including their family will be highly satisfied..\u0026rdquo;(\u003c/em\u003eFGD 2, secondary-level PCP, P4)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;\u003c/em\u003e(IDI, \u003cem\u003eMedical Officer\u003c/em\u003e 2)\u003c/p\u003e \u003cp\u003eA feeling of satisfaction and self-worth\u003c/p\u003e \u003cp\u003eParticipants 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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,\u0026hellip;. 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.\u0026rdquo;(\u003c/em\u003eIDI, secondary-level PCP 1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;\u003c/em\u003e(IDI, Programme Manager 2)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;\u003c/em\u003e(IDI, secondary-level PCP 5)\u003c/p\u003e \u003cp\u003eCrossing the hurdles of social acceptance\u003c/p\u003e \u003cp\u003eSome 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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\u0026hellip;There were many pressure sores over his body from head to toe. We cleaned him completely, informed the nearby \u0026ldquo;Santhwanam\u0026rdquo; 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\u0026hellip;. I was further shocked to hear that mother\u0026rsquo;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 \u0026ldquo;Patheyam\u0026rdquo; scheme. Now things have changed, she likes our presence\u0026hellip; even she waits for the next visit to see us. \u0026rdquo;\u003c/em\u003e(IDI, primary-level PCP 1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;People will accept you at some point. It may take time\u0026hellip;but the warmth and continuum of care will definitely touch their hearts\u0026rdquo;\u003c/em\u003e(IDI-primary-level PCP 2)\u003c/p\u003e \u003cp\u003eCreating opportunities from challenges\u003c/p\u003e \u003cp\u003eFrequent encounters with challenges helped the Palliative Care Providers to \u0026ldquo;think out of the box\u0026rdquo; and to devise strategies to provide need-based care to palliative patients. It gave them opportunities to work independently and explore their creativity.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eWe are conducting an ostomy clinic and a lymphedema clinic once a week. Now, I am conducting a lymphedema clinic in Vellanadu, a rural area of the Thiruvananthapuram district. At present, 6 patients are attending our clinic\u003c/em\u003e.\u0026rdquo; (IDI, secondary-level PCP 6)\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eEven though the workload is high, we can plan a lot in this field. \u0026lsquo;A matchbox of rice\u0026rsquo;\u0026hellip;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\u003c/em\u003e.\u0026rdquo; (IDI, secondary-level PCP 3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;\u0026hellip;..Collection of newspapers and preparation of paper bags were another sources for raising funds for them\u003c/em\u003e.\u0026rdquo;(IDI, secondary-level PCP 3)\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eLast year, a one-day tour was arranged by the Medical Officer in Kuttichal, Thiruvananthapuram for the palliative patients to the Trivandrum mall\u003c/em\u003e\u0026rdquo;. (IDI, secondary-level PCP 4)\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eNegative experiences\u003c/strong\u003e \u003cp\u003ePalliative 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.\u003c/p\u003e \u003c/p\u003e \u003cp\u003eLack of Acceptance from patients/families\u003c/p\u003e \u003cp\u003eSome 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I can never forget an incident during our home visit in a rural area of Thiruvananthapuram district\u0026hellip;.an old lady was lying on the floor in a pathetic condition, surrounded by excreta and filth. We didn\u0026rsquo;t see any evidence of food preparation in that house. Suddenly a man approached and shouted at us\u0026hellip; 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\u0026rsquo;t help the situation.\u0026rdquo;\u003c/em\u003e(IDI, primary-level PCP 1)\u003c/p\u003e \u003cp\u003eStress and burnout\u003c/p\u003e \u003cp\u003eMany 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. Linked to this work stress, some care providers faced health issues due to the lack of time for adequate diet and rest. Many of them narrated their mental burnout being exposed to various difficult patient conditions daily.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We are unable to have food on time. If we are in a remote area, we have to come back to a town for buying food. To avoid the wastage of time and petrol we will just omit our lunch\u0026hellip;\u0026rdquo;\u003c/em\u003e (IDI, primary-level PCP 6)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We found an old lady in a storeroom area of a house\u0026hellip;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\u0026hellip;\u0026rsquo;\u0026rsquo;\u003c/em\u003e(IDI, primary-level PCP 4)\u003c/p\u003e \u003cp\u003eFeeling of helplessness\u003c/p\u003e \u003cp\u003eIn 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.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eThere 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.\u0026rdquo;\u003c/em\u003e (Eyes get filled with tears) (IDI secondary-level PCP 3)\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eChallenges\u003c/strong\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003c/p\u003e \u003cp\u003eAdministrative challenges\u003c/p\u003e \u003cp\u003eThe participants narrated their perceptions of the administrative challenges which could be grouped under the following themes.\u003c/p\u003e \u003cp\u003e \u003cp\u003e(i) Lack of job security and low salary\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eThe 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\u0026rsquo;s Provident Fund(EPF).\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I can\u0026rsquo;t even meet my daily needs\u0026hellip;I have to travel 80 kilometres in a day. So, unless they increase the basic salary, my life will be very difficult\u0026hellip;not just for me, but the majority of the nurses here have financial strains.\u0026rdquo;\u003c/em\u003e (FGD2, secondary level PCP P5)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We don\u0026rsquo;t have any job security. On a rainy day, when I was at Amboori in Thiruvananthapuram district (this place underwent landslides in 2001)\u0026hellip;. I was at the top of a hill to attend to a patient, and I thought for a moment, \u0026ldquo;What will happen to my family if a landslide hit us now?\u0026rdquo;\u003c/em\u003e (FGD2, secondary level PCP P3)\u003c/p\u003e \u003cp\u003e(ii) Limited resources including human resource\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eIt 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Ideally, we will be able to attend 8\u0026ndash;10 patients in a day. In a city corporation area, the nurses have to attend to 24\u0026ndash;26 patients a day, together with problems with the availability of the vehicle. It is very hectic\u0026hellip;the quality of work gets compromised in some cases and we sacrifice our health too in this run..\u0026rdquo;(\u003c/em\u003eIDI, primary-level PCP 5)\u003c/p\u003e \u003cp\u003e(iii) Lack of a uniform policy and Job description\u003c/p\u003e \u003cp\u003eHome-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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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...\u003c/em\u003e\u0026rdquo;(IDI, secondary-level PCP 3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;(\u003c/em\u003eFGD2, secondary-level P2)\u003c/p\u003e \u003cp\u003eOrganizational challenges\u003c/p\u003e \u003cp\u003eOrganizational challenges faced by the PCPs in home-based palliative care included transportation, training and supervision, and the difficulty in sustaining quality of care.\u003c/p\u003e \u003cp\u003ei) Transportation\u003c/p\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My first posting was in a coastal area of Thiruvananthapuram district. That was a very unhygienic area, and many areas were inaccessible\u0026hellip;. it was very difficult to walk carrying this large bag and patient care kit. At those times I hated this service\u0026hellip;\u0026rdquo;\u003c/em\u003e (IDI primary-level PCP 3)\u003c/p\u003e \u003cp\u003eii) Training and supervision\u003c/p\u003e \u003cp\u003eThough 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;\u003c/em\u003e(IDI, Programme Manager 2)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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,\u0026hellip;their work cannot be measured in numbers, in the community you get to feel it\u0026hellip;\u0026rdquo;\u003c/em\u003e(IDI, Programme Manager 1)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I care for the feedback from the patients. Once in a month, the patient\u0026rsquo;s bystanders come to the OPD for medicines. From these family members, we will identify the care provided by the nurses.\u0026rdquo;\u003c/em\u003e (IDI, Medical Officer 2)\u003c/p\u003e \u003cp\u003e(iii) Difficulty in sustaining quality of care\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;There is no fixed hour of work \u0026hellip;. people may call us for some help like catheter change, pain management etc. at any time of the day\u0026hellip;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\u0026hellip;.\u0026rdquo;\u003c/em\u003e (IDI, primary-level PCP 2)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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.\u0026rdquo;\u003c/em\u003e (IDI, Medical Officer 2)\u003c/p\u003e \u003cp\u003ePersonal Challenges\u003c/p\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003cp\u003e(i) Physical Challenges\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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\u0026hellip;. and now developed a gastric ulcer and am on treatment\u0026hellip;.Nevertheless, I still have to skip meals some days.\u0026rdquo;\u003c/em\u003e (FGD2, secondary-level PCP P1)\u003c/p\u003e \u003cp\u003e(ii) Psychological Challenges\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eMany 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Facing a patient without a doctor or experienced person, in home-based care is also a great stress for us.\u0026rdquo;\u003c/em\u003e(IDI, primary-level PCP 3)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;It is a very stressful job in all sense\u0026hellip;continuously hearing patient problems to witnessing deaths\u0026hellip;.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.\u0026rdquo;\u003c/em\u003e (IDI, primary-level PCP 4)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e 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 positive experience of the care provider indicated that the project created a win-win situation where care is provided at the patient\u0026rsquo;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 affirms 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.\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e As the title of the referred study depicts, minor interventions from the side of the caregiver can have big roles to play in the life of the patients and their families.\u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e 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.\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e A digitally enabled community outreach model of a tertiary hospital was also reported to have a high acceptance rate in the community.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe segment of the population seeking community-based palliative care is often marginalised and poor.\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e Moreover, 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.\u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e Meta-analytical estimations by G\u0026oacute;mez-Urquiza et al. reported a high level of burnout (24\u0026ndash;30%) among palliative care providers with high influence on depersonalization, emotional exhaustion, and low personal accomplishment and suggests an improvement in the working environment.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e 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.\u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e 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.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e 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.\u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e Here, Danielsen et. al reports collaboration and relationship between patient, family, nurses and doctors to be an important facilitator for optimum palliative care.\u003c/p\u003e \u003cp\u003eThe community-based palliative care in Kerala is a good model to show how to integrate such services into the health system. Hojjat-Assari S, et al (2022) identifies three major themes in the perception of the caregiver in integrating palliative care into primary health care; using health system structure as an opportunity, meeting the requirements and achieving the outcomes.\u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e The outcome of the community-based palliative care initiative of Kerala is documented widely and is integrated into the health system. The well-functioning health system of the State may be an opportunity to run such a program.\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e However, 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. A primary palliative care research from 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.\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e 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.\u003c/p\u003e \u003cp\u003eOur 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.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe 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 volunteer 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 were weakened 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.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study proposal was approved by\u0026nbsp;the Institute Ethics Committee of the Government College of Nursing, Thiruvananthapuram(CNT/IEC/34/7/19). All interviews were conducted after obtaining written informed consent from the participants and separate consent for the audio recording of interviews was obtained.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was not funded by any grants, institutions, or organizations\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRMI, CL, AR and TSA contributed to the plan and design of the study. RMI and AR developed the interview guide which was reviewed by CL and TSA. RMI and AR led the data collection and performed the data analyses. All authors participated in the interpretation of the results. AR and RMI drafted the manuscript. CL and TSA did the critical revision of the manuscript and approved the final version. All authors had full access to the data and take responsibility for the data integrity and analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe extend our sincere gratitude to the palliative care providers, medical officers, program managers and the beneficiaries of the Arogyakeralam project who participated in this study and shared their experiences. We thank Dr Rema Devi S (Associate Professor (Rtd), Department of Community Medicine, Government Medical College, Thiruvananthapuram), Dr Jolly Jose (Vice Principal), Dr Lucyamma Joseph (Professor), Mrs Asmi S. S. (Assistant Professor) Government College of Nursing, Thiruvananthapuram for their valuable support.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eRodriguez A. Global need for palliative and pain relief. News Room, AJMC [Internet]. 2017 Oct 19.Available from \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.ajmc.com/view/global-need for-palliative-care-and-pain-relief\u003c/span\u003e\u003cspan address=\"https://www.ajmc.com/view/global-need for-palliative-care-and-pain-relief\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRohan M. Palliative care in Kerala a success story. The Hindu, 2020 March 13. 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Nursing and the future of palliative care,Asia-Pacific Journal of Palliative Care.2018Jan-Mar; 5(1):4\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKumar SK. Kerala, India: a regional community-based palliative care model. J Pain Symptom Manage. 2007 May;33(5):623\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAzeez EPA, Anbuselvi G. Is the Kerala Model of Community-Based Palliative Care Operations Sustainable? Evidence from the Field. Indian J Palliat Care. 2021 Jan-Mar;27(1):18\u0026ndash;22.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePalliative care-Government of Kerala, India., 2018Nov 07. Available from \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttp://kerala.gov.in\u0026gt;palliativecare\u003c/span\u003e\u003cspan address=\"http://kerala.gov.in%3Epalliativecare\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLijimol AS, Krishnan A, Rajagopal MR, Gopal BK, Booth CM. Improving Access and Quality of Palliative Care in Kerala: A Cross-sectional Study of Providers in Routine Practice. Indian J Palliat Care. 2020 Oct-Dec;26(4):500\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBirt L, Scott S, Cavers D, Cambell C, Walter F. Member checking: a tool to enhance trustworthiness or merely a nod to validation? Qualitative health research, 2016 Jun; 26(13):1802\u0026ndash;1811.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePolit FD, Beck CT. Nursing research generating and assessing evidence for nursing practices. 10th edition. Wolter kluwer; 2016.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77\u0026ndash;101.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNdiok A, Ncama BP. A qualitative study of home visiting as a palliative care strategy to follow-up cancer patients by nurses in clinical setting in a developing country.Scandinavian journal of caring science, March2019; (1):185\u0026ndash;196\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePhilip RR, Venables E, Manima A, Tripathy JP, Philip S. Small small interventions, big big roles\"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India. 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Factors Associated with Choosing the Kerala Model of Palliative Care versus Standard Care among Indian Cancer Patients.Indian Journal of Medical and Paediatric Oncology. 2022 Mar 14;43.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJoad ASK, Hota A, Agarwal P, Patel K, Patel K, Puri J, Shin S. \"I want to live, but\u0026hellip; the desire to live and its physical, psychological, spiritual, and social factors among advanced cancer patients: evidence from the APPROACH study in India. BMC Palliat Care. 2022 Aug 31;21(1):153.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eG\u0026oacute;mez-Urquiza JL, Albend\u0026iacute;n-Garc\u0026iacute;a L, Velando-Soriano A, Ortega-Campos E, Ram\u0026iacute;rez-Baena L, Membrive-Jim\u0026eacute;nez MJ, Suleiman-Martos N. Burnout in Palliative Care Nurses, Prevalence and Risk Factors: A Systematic Review with Meta-Analysis. Int J Environ Res Public Health. 2020 Oct 21;17(20):7672. doi: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3390/ijerph17207672\u003c/span\u003e\u003cspan address=\"10.3390/ijerph17207672\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. PMID: 33096682; PMCID: PMC7589426.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVan Heerden EM, Jenkins LS. The role of community health workers in palliative care in a rural subdistrict in South Africa. Afr J Prim Health Care Fam Med. 2022 Nov;9(1):e1\u0026ndash;e9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDanielsen BV, Sand AM, Forland O. Experiences and challenges of home care nurses and general practitioners in home based palliative care \u0026ndash; a qualitative study.BMC Palliative Care, 2018Jul;17(95)\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHojjat-Assari S, Rassouli M, Kaveh V, Heydari H. Explaining health care providers' perceptions about the integration of palliative care with primary health care; a qualitative study. BMC Prim Care. 2022 Sep;7(1):226.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBarclay S, Moran E, Boase S. Primary palliative care research: opportunities and challenges. BMJ Supportive and Palliative care. 2019;9:468\u0026ndash;72.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"international-journal-for-equity-in-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijeh","sideBox":"Learn more about [International Journal for Equity in Health](http://equityhealthj.biomedcentral.com)","snPcode":"12939","submissionUrl":"https://submission.nature.com/new-submission/12939/3","title":"International Journal for Equity in Health","twitterHandle":"@equityhealthj","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"palliative care, Kerala, equity, palliative care providers","lastPublishedDoi":"10.21203/rs.3.rs-2803247/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-2803247/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eHome-based palliative care is a fundamental component of the Kerala model of palliative care, which has received global recognition. The study explores the challenges and experiences faced by palliative care providers caring for a vulnerable community of patients. The findings will assist in identifying gaps and replicating Kerala's palliative care model in other settings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eThis 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. 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 \u0026amp; Clarke method.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003ePCPs 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. There were also instances where caregivers were weakened 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eThe 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 volunteer community of nurses who struggle to provide the highest possible care despite the challenges and difficulties.\u003c/p\u003e","manuscriptTitle":"The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2023-04-14 13:18:47","doi":"10.21203/rs.3.rs-2803247/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2023-08-22T08:28:01+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2023-05-15T12:02:17+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"7d988b2e-3270-47a7-91a1-9d905f8976c4","date":"2023-05-11T17:03:40+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2023-05-11T08:52:36+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2023-04-12T17:04:59+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2023-04-12T12:53:37+00:00","index":"","fulltext":""},{"type":"submitted","content":"International Journal for Equity in Health","date":"2023-04-12T05:31:39+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"international-journal-for-equity-in-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijeh","sideBox":"Learn more about [International Journal for Equity in Health](http://equityhealthj.biomedcentral.com)","snPcode":"12939","submissionUrl":"https://submission.nature.com/new-submission/12939/3","title":"International Journal for Equity in Health","twitterHandle":"@equityhealthj","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1941cef0-0edc-47b0-891d-b3baae6bb7d3","owner":[],"postedDate":"April 14th, 2023","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-02-17T16:05:23+00:00","versionOfRecord":{"articleIdentity":"rs-2803247","link":"https://doi.org/10.1186/s12939-024-02354-6","journal":{"identity":"international-journal-for-equity-in-health","isVorOnly":false,"title":"International Journal for Equity in Health"},"publishedOn":"2025-02-14 15:57:17","publishedOnDateReadable":"February 14th, 2025"},"versionCreatedAt":"2023-04-14 13:18:47","video":"","vorDoi":"10.1186/s12939-024-02354-6","vorDoiUrl":"https://doi.org/10.1186/s12939-024-02354-6","workflowStages":[]},"version":"v1","identity":"rs-2803247","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-2803247","identity":"rs-2803247","version":["v1"]},"buildId":"7rjqhiLT3MXkJMwkYKINL","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}