Barriers and facilitators to accessing and providing palliative care to people with cancer in the Bathinda district in Punjab: a qualitative study

Abstract

Background

There is a paucity of knowledge on the socio-culturally relevant community based palliative care (CBPC) models in rural north India. This study aimed to explore the barriers and facilitators to accessing and providing palliative care (PC) to people with cancer in the rural North India.

Methods

This study employed a qualitative design comprising of in-depth interviews (IDIs) and focus group discussions (FGDs) to explore the perspectives of community healthcare providers (CHPs), people with cancer and their caregivers. Purposive sampling with maximum variance was used to ensure data saturation. The data was analysed using thematic analysis with findings interpreted through the theoretical framework of the WHO public health strategy for PC.

Findings

Forty-two IDIs were conducted with 21 CHPs, 11 people with cancer and 10 caregivers. Two FGDs were conducted with Accredited Social Health Activists (ASHAs, n = 5) and Auxiliary Nurse Midwives (ANMs, n = 5). Four themes emerged (1) Policy influence on PC: barriers and opportunities. Barriers included lack of PC provision within the healthcare system, inadequate and inaccessible financial schemes and lack of incentivization for ASHA workers. The role played by ASHA workers emerged as a facilitator. (2) Awareness and training gaps. Lack of educational and training in PC, unawareness, flawed perceptions and regressive attitude emerged as the barriers. However, training was identified as a catalyst for change. (3) Shortages and Strain: factors impacting PC implementation. Participants unanimously expressed lack of essential drugs and equipment for PC and limited and overworked workforce. CHPs acknowledged the importance of PC and the need for dedicated PC teams. (4) Formal gaps and informal strengths: factors shaping CBPC access. Participants expressed limited access to local healthcare facilities. However, some NGOs tried to bridge this gap.

Conclusion

The study highlights significant barriers and a few facilitators to accessing and providing PC in rural north India at the level of policy, education, drug availability and infrastructure. The WHO public health approach helped in identifying interventions to address and leverage the identified barriers and facilitators respectively.

Registration

Clinical Trials Registry of India (CTRI/2023/04/051357; dated 06/04/2023).

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-025-13751-0.

Introduction

Cancer has emerged as the leading cause of mortality in India [1], reflecting an epidemiological transition from communicable to non-communicable diseases (NCDs) [2]. GLOBOCAN estimated 20 million new cancer cases and 9.7 million cancer-related deaths in 2022, with the anticipation that India’s cancer incidence will double by 2050 [3]. According to the National Cancer Registry Program, two-thirds of India’s 1.5 to 2 million cancer cases are at an advanced stage [5]. People with advanced cancer have various physical, psychosocial, and spiritual needs that can be effectively addressed through a palliative care (PC) approach.

PC is a holistic approach aimed to alleviate the suffering of individuals facing serious or life limiting illnesses including but not limited to cancer. However, cancer remains a major contributor to serious health-related suffering (SHS), accounting for 16.6 million cases of SHS worldwide and 61% of SHS burden in low-and middle-income countries (LMICs) like India [4]. An approximate of 5.93 to 6.21 people per 1000 population currently require PC in India. Cancer constitutes the largest contributor to SHS with an estimated 1.3 million individuals in urgent need of PC services in India [4–6]. However, approximately 98.39% of patients with advanced cancer do not have access to PC and < 1% had access to opioid based pain relief in India [7]. Considering this huge need-supply mismatch, majority of PC services in India started with cancer and later expanded their spectrum to include other chronic life limiting illness (CLLI) [5, 8, 9].

In order to meet the growing need, the World Health Organization (WHO) recommends PC to be contextually appropriate and integrated into primary health care to make such care accessible and sustainable [10–12]. Community-based PC (CBPC) aims to integrate PC into local healthcare systems and has been shown to improve patient and caregiver satisfaction, sense of security, quality of life (QoL) and reduce hospital as the place of death [13–15]. About two-thirds of India’s PC services are concentrated in the southern state of Kerala with the remaining meagre PC services concentrated in tertiary hospitals in major urban cities [16–18]. A recent situation analysis also highlighted this stark urban-rural disparity with the travel time to access PC centres being much higher in the rural compared to that in the urban areas in India [19]. Moreover, there is a paucity of knowledge on the socio-culturally relevant CBPC models in rural north India. The literature exploring barriers and facilitators to establishing CBPC is skewed towards the developed countries with scant representation from India and none from rural north India [11].

To address this gap, we conducted this qualitative study to explore the barriers and facilitators to accessing and providing PC to people with cancer in a rural block of north India. A theory-informed approach was used to interpret multi-level barriers and facilitators to PC access to help select interventions addressing and leveraging the identified barriers and facilitators respectively.

Methods

Study design

The study presents findings of the first phase of a multi-phase implementation research aimed at developing context-specific comprehensive coordinated CBPC services for cancer patients (C3PaC) in rural north India [20, 21]. A qualitative study comprising of in-depth interviews (IDIs) and focus group discussions (FGDs) was adopted to explore the barriers and facilitators to accessing PC by people with cancer from the perspective of various stakeholders. The study was reported using consolidated criteria for reporting qualitative study (COREQ) guidelines (Supplementary file 1).

Ethical approval

The study was approved by the Institutional Ethics Committee (IEC/AIIMS/BTI/157) and was registered with the Clinical Trials Registry of India (CTRI/2023/04/051357; dated April 6, 2023). Approvals were also sought from the District National Programme for Prevention and Control of Non-communicable Diseases (District NP-NCD) and District health authorities. Potential participants were informed about the research project and enquired about their interest in IDIs and FGDs. Before data collection, all participants provided written informed consent and were assured of confidentiality and anonymity. Those who refused to participate were excluded. Participants were informed they could withdraw at any time without affecting their care.

Study context and population

The study was conducted in an administrative region covered by a community health centre (CHC) of the Bathinda city in Punjab (Supplementary file 2). The study location primarily encompassed rural and semi-urban regions. The study population comprised of patients with cancer, their caregivers and CHPs [physicians, medical officers (MOs), community health officers (CHOs), auxiliary nurse midwives (ANMs), and accredited social health activists (ASHAs) workers] identified in a prior study [21]. This ensured that the findings encompassed perspectives of all the concerned stakeholders. Participants were selected based on purposive sampling with maximum variance to include participants with diverse backgrounds with respect to age, gender, educational background (for CHPs), cancer site, and functional status including those patients who were bed-bound.

Data collection

Of the 65 potential participants approached, 13 declined to participate (4 community health providers [CHPs], 4 individuals with cancer, and 5 caregivers). This represent a refusal rate of 17.3%. While some cited personal reasons or time constraints, others did not provide any specific reasons for refusal. Among the remaining 52 participants, in-depth interviews (IDIs) were conducted with 42. Additionally, two FGDs were conducted, one each with ASHAs (n = 5) and ANMs (n = 5)—who were distinct from those included in the IDIs. A semi-structured interview guide (Supplementary File 3) was developed based upon the findings of a prior study and published literature [21–23]. Piloting of the interview guide with five participants from another CHC informed subsequent refinements to the guide. Interview guides were tailored for four different participant categories – patients, caregivers, CHPs, and program managers. While the interviews of patients and caregivers explored their views on PC, journey from diagnosis to care, perceived needs, and availability and accessibility of PC services; interviews of CHP’s and program officers also explored existing policies, infrastructure, education and training in PC, other barriers and facilitators to providing PC, their experiences in supporting patients and suggestions for integrating PC services at community level. This categorization of participants was done to explore individual, community and system level barriers and facilitators in accessing PC services. Its semi-structured nature with open questions allowed respondents to express their views, reducing the influence of researchers’ bias or preconceived notions on the data collection process [24]. Adept qualitative researchers proficient in English and native language (Punjabi) conducted the interviews (AK, MG, SS, BL). Presence of a family member was allowed at the request of the participant. While one of the trained researcher mentioned above conducted the interview, another (AK, MG, SS, BL) observed and assisted with data collection and note taking. The interviews were carried out in English or Punjabi, lasted 20–45 min and were subsequently transcribed and translated by a bi-lingual English-Punjabi translator.

To deepen our understanding of PC access, two focused group discussions (FGDs) were conducted, one each with five ASHAs and five ANMs. These healthcare workers were chosen for their intimate community knowledge and direct patient engagement, offering unique insights into PC barriers and facilitators [21]. The FGD methodology was strategically employed to foster a synergistic environment for discussion. This approach was anticipated to leverage the collective experiences and diverse viewpoints of the participants, enabling them to build upon each other’s ideas and perspectives. This collaborative interaction was expected to yield a more nuanced and comprehensive dataset compared to individual IDIs, thereby providing richer insights into the complexities of PC access within the community. The interviews were conducted between December 2023 and March 2024 at time and locations convenient for the participants. The interviews were recorded using a voice recorder. Interviews were continued until data saturation. Field notes were taken during the interviews. The data was anonymized by assigning a numerical code to each participant during the transcription process.

Data analysis

Two researchers transcribed the interviews verbatim followed by rigorous cross-checking to ensure accuracy. NVivo 14 was used to organize, code and analyse the transcripts. Two independent researchers analysed the transcripts, allowing richer and collaborative interpretation rather than seeking consensus [25, 26]. Iterative coding was conducted, with initial codes developed both inductively from the data and deductively from the WHO public health strategy for PC. The iterative process involved familiarizing oneself with the data by reading and rereading the transcripts, data interpretation and coding. Codes were refined by comparing them among the coders and inputs from all the researchers [27]. The process was iterative until no new codes were generated.

The codes were compared and organized to meaningful themes and sub-themes. The resulting themes were cross-checked against the field notes to facilitate data triangulation and ensure that no relevant concepts were missed. The themes were refined through regular reviews and discussions among all the researchers. The draft findings were shared with two participants (one patient and one CHO) who ruled out any misinterpretations or omissions. Illustrative verbatims from the participants were used to support the sub-themes. The inductive approach to coding and theme development ensured that the findings were grounded in the data. The WHO Public Health strategy was chosen as it is the most widely used framework to develop and integrate PC with recommendations to ensure development in all the four domains [23]. This helped not only in providing structure and context to findings but also application of a well-established framework to suggest theory informed interventions.

Findings

A total of 42 IDIs were conducted with CHPs (n = 21), people with cancer (n = 11) and their caregivers (n = 10) (Table 1). Two FGDs were conducted with ASHAs (n = 5 females) and ANMs (n = 5 females) with a mean age of 43.13 years (range 28–55 years).

Table 1.

Characteristics of participants who underwent in-depth interviews

	Community Healthcare Providers (n = 21)	Cancer patients (n = 11)	Caregivers (n = 10)
Participants (Designation/Diagnosis)	9 ASHAs 3 ANMs* 4 CHOs 2 MOs 1 Program officer 1 Oncologist 1 Pharmacist	3 Ca Breast 3 Ca Cervix 1 Ca Liver 1 Ca Oesophagus 2 Leukaemia 1 Lymphoma	7 Active Caregivers 3 Bereaved caregivers
Gender	18 Females 3 Males	7 Females 4 Males	7 Females 3 Males
Median Age (Range) years	45 (30–57)	52 (38–75)	48 (30–63)

* One of the ANMs was also a caregiver to a cancer patient. ASHAs: Accredited Social Health Activists (who have cleared their 10th standard); ANMs: Auxiliary Nurse Midwives (who have cleared their higher secondary from a recognized board); CHOs: Community Health Officers (nurses who have cleared their general and midwifery diploma or BSc/post basic BSc nursing); MOs: Medical Officers (Doctors with MBBS degree)

Themes

Data analysis generated four themes and twelve subthemes (Table 2; Fig. 1).

Table 2.

Themes and subthemes

WHO Public health approach domain	Theme	Barriers	Facilitators
Appropriate policies	Theme 1. Policy influences on palliative care: Barriers and opportunities	1.1 No provision of palliative care within the healthcare system	1.3 ASHA workers-a vital resource
		1.2 Inadequate and inaccessible financial schemes
		1.4 Lack of incentivization of ASHA workers
Education	Theme 2: Awareness and training gaps	2.1 Educational and experiential training gaps	2.3 Recognizing the need: Training as a catalyst for change
		2.2 Unawareness, flawed perceptions and regressive attitude
Adequate drug availability and Implementation	Theme 3: Shortages and Strain: Systemic factors affecting Community Palliative Care	3.1 Lack of essential drugs and equipments for PC	3.3 Recognizing the need for dedicated PC services
		3.2 Limited and overworked workforce
	Theme 4: Formal Gaps and Informal Strengths: Factors Shaping CBPC Access	4.1 Limited access to local healthcare facilities	4.2 Healing hands of the community: NGOs and charities in action

Fig. 1.

Thematic Map

Theme 1: Policy influences on palliative care: barriers and opportunities

The CHPs iterated policies as one of the major barriers to provision of PC in the community. CHPs highlighted that the existing policies focussed more on curative rather than PC. There was no provision of PC in the existing healthcare system, no separate funds, and no separate incentivization for ASHAs. The financial schemes were either inadequate or inaccessible for the majority of people with cancer.

No provision of palliative care within the healthcare system

CHPs highlighted that the rural areas faced a dire lack of PC services.

No. Nothing related to palliative care. No, not here in my knowledge. (IDI 3, MO1)

Those beds are for cancer patients and the treatment that they are receiving e.g. chemotherapy, blood products given etc. but not for palliative care as such. (IDI 11, Program Officer)

MOs highlighted lack of policies or guidelines delineating their roles and responsibilities in PC.

We have not been told anything about PC directly, we do not get advice from our department that we have to do this work, hence we are not able to talk to the patient directly. (IDI 4, MO 2)

Look, I do not have anything in the documents since my posting. (IDI 4, MO2)

The omission of PC services in the existing healthcare system contributed to the suffering of patients with cancer unaddressed by leaving their medical, emotional, and social needs unmet.

They got weaker, stiffer, those people also require appropriate people to take care of them. In those conditions, how can a person take them to hospital single handedly? Such facilities where staff is always available on call is needed. (IDI 35, ASHA 5)

Many times I thought that some hospital staff should take care of me, but later I used to think who will come to my poor house. (IDI 13, Patient 5)

Contradictory reports emerged from various stakeholders regarding the availability and utilization of PC funds. While some participants expressed that the funds were inaccessible, others contended that no formal requests or attempts to utilize these funds had been initiated.

Many times we were asked for a list regarding cancer patients, then ASHAs used to make the list but no special fund came. (IDI 7, ANM 1)

No such budget came. No, it hasn’t come yet. but there is no separate medicine for (palliative care). (IDI 4, MO 2)

But requesting for something new is to be added …at every level there is no shortage of funds, but for them to be utilised, if the community will reach a consensus only then will it be used (IDI 11, Program Officer)

This lack of clear communication and coordination led to missed opportunities and underutilized resources.

Inadequate and inaccessible financial schemes

Participants consistently highlighted the inadequacy and inaccessibility of existing financial schemes when it comes to covering PC.

And if they have a ……… card, it does not include palliative care as much. The card includes packages for chemotherapy, surgery; but not for palliative care so they have to pay out of pocket (IDI 9, Oncologist)

They highlighted that current schemes fail to cover the full cost of medicines, leading to significant out-of-pocket expenditures (OOP) and financial distress.

When they have the card, some medicines are not available with the card, they have to buy them from outside medical store with their own money (IDI 28, ANM 2)

Furthermore, some CHPs pointed out ambiguities in the existing healthcare coverage schemes like the need for hospital admission to access benefits and the exclusion of many treatments and out-patient department (OPD) based care from coverage.

Yes, if this scheme works properly the medications should be free of cost, but it only works if the patient agrees to be admitted to the hospital. Not everyone can because they have small children and have no one to be taken care of them if the patient gets admitted to the hospital. (IDI 40, ASHA 8)

ASHA workers-a vital resource

Many CHPs conveyed that ASHA workers held a significant influence within the community due to their close involvement with patients and caregivers at the ground level. ASHA workers were the ones to deal directly with patients and ensure that the needs of patients were met.

Our ASHA workers have more link with the people because she takes the patients to the hospital daily and the patients trust her more because she is from the village. (FGD 1, ANM)

We stay connected with the patient at the ground level so they tell us everything so that we see their problem and get it checked. (IDI 34, ASHA 4)

ASHAs expressed that they could play an essential role in providing PC to patients in community and assist in basic medical care, symptom management and making referrals to healthcare facilities.

Our ASHA workers are ready to work. I myself am happy to work for patients and I have been doing that. (IDI 6, ASHA Facilitator 1)

Yes, we are kind of doing it, any basic needs like medicines, e.g. for poor patients getting them free of cost medicines or free of cost transportation which is necessary. (IDI 39, ASHA 8)

Lack of incentivization of ASHA workers

Community healthcare providers (CHPs) iterated that lack of remuneration for ASHA workers hindered their motivation and affected the efficiency with which they carried out their roles.

The main thing is that if ASHA workers get something then only their interest will increase to do the work (FGD 1, ANM)

A few emphasized that incentivization will boost their dedication to serve patients and help them in becoming independent in the long run.

Our ASHA workers are ready to work. I myself am happy to work for patients and I have been doing that. But it gets difficult when ASHA’s do not get their incentives as that is their primary source of income (IDI 6, ASHA Facilitator 1)

Theme 2: Awareness and training gaps

CHPs acknowledged that insufficient education and training in PC left them unequipped to care for the patients, contributed to faulty perceptions towards PC and the suffering of patients with cancer unaddressed.

Educational and experiential training gaps

Majority of CHPs acknowledged that they lacked basic education in PC.

Till now we have not been given any special training or information about palliative care. I have been working in this post for at least 17–18 years. I have a medical officer who is there with me. We do what we have learned at our level and treat whatever problem the patient faces…because we are sitting in a rural area, hence we were not given specific training in this (IDI4, MO2)

CHOs voiced that lack of experiential and hand-on-training rendered them unequipped with core PC skills like change of catheters and symptom management; impacting patients’ outcomes.

No sir we never had training. But when we used to study, we got some information about palliative care (IDI 33, CHO4)

How can we reduce the problems in the treatment of cancer patients? For example, vomiting of blood in the patient, shortness of breath are inevitable but there are also side effects of medicine. How can we reduce them? This way the quality of life of the patient can be improved (IDI 5, CHO2)

Unawareness, flawed perceptions and regressive attitude

Lack of education contributed to faulty perceptions about PC like equating PC as end-of-life care or some type of advanced care.

When the patient is at home and the one who takes care of the patient at home is called PC (IDI 28, ANM 2)

In my mind what I think is that PC is some kind of advanced care given to patients. Patients get disease, then its treated, then this kind of care comes like medically, physically, emotionally. But now we are focusing on primary care so that each individual should get the primary care at their doorstep. We are working on that now. First we’ll work on that successfully then let us talk about the PC, which is advanced care (IDI 3, MO 1)

Participants emphasized that inadequate awareness and knowledge about cancer in the community often led to delayed diagnosis and treatment.

People of the village are not even aware about cancer, so that they can get their treatment done in the beginning and start treatment in the first stage. People get treatment for cancer in the last stage, at that time they come to know about cancer. (IDI 26, ASHA 2)

Many CHPs reported that unawareness led to faulty perceptions, myths and misconceptions about cancer with many conceiving it as contagious or something not to be spoken off. These flawed perspectives not only hindered the process of timely diagnosis and treatment but also contributed to the fear of discrimination, social isolation and silent suffering.

Here some old age people do not take the name of cancer, it is known as Paheda (dirty). If the name of cancer is taken for one, then it can happen to others also, hence the name is not taken. (IDI 2, CHO 1)

This was further compounded by the regressive attitude towards cancer. Participants iterated that patients considered their medical condition as incurable, byproduct of their past misdeeds, curse or karmic punishment, leading to reluctance in seeking care.

People do not inform each other about cancer because they considered cancer to be a dangerous disease. (IDI 25, CHO 3)

When this cancer has already happened, then what now? One day I have to leave this world. (IDI 1, Patient 1)

Recognizing the need: training as a catalyst for change

A key facilitator identified was the recognition of the need for PC education and training to ensure effective service delivery. CHPs stated that in community, primary providers were amateur ANMs and ASHAs. With proper training, these frontline workers could manage pain and other distressing symptoms effectively, thereby improving the QoL of the patients.

If we or ASHA worker has any training or we have knowledge then when we go to field. So we can tell something to the patient, how to take the medicine and whatever information we are given in the training. (FGD 1, ANM)

In our CHO’s Roles and Responsibilities, palliative care is also there in it but there was no special training on it. When he was doing the course, there was a chapter on palliative care in it but there was no special training…those who have a urinary catheter installed have to go to the hospital to change it. If there is any trained nursing staff, we can replace it at home also (IDI 5, CHO2)

Receptiveness to training was expressed by many CHPs as it was perceived to empower them with the knowledge and skills required to assess patient needs, manage symptoms, and provide psychosocial support.

Yes, we should be trained about that so that we can help patients in need. (IDI 37, ASHA 6)

Yes, if everyone is trained then people like us can take care of cancer patients. (IDI 7, ANM 1)

CHPs expressed that empowering caregivers with knowledge and practical skills would enable them to effectively take care of the patients at home. The need for education and advocacy to heighten the awareness on the need for and benefits of PC was highlighted by many.

Some patients get bed sores while lying on the bed, so their dressing should be fresh, and we explain to their family members that their bed sheets should be changed daily and things of that sought. They should be interacted with, can be touched as it is not communicable. (IDI 6, ASHA Facilitator 1)

Theme 3: Shortages and strain: factors impacting palliative care implementation

Participants highlighted lack of essential drugs, equipments, and adequate staff as the reasons hindering access to and provision of PC in the community.

Lack of essential drugs and equipments for PC

Participants highlighted non-availability of essential resources, equipments, and medications to hinder effective delivery of PC services in rural areas. CHPs emphasized that they could not deliver PC without proper tools and medications. As a result, the healthcare system failed to meet the needs of patients condemning them to unnecessary pain and discomfort.

We need complete equipment like this, we need some drugs like for vomiting, beds are required for bedridden patients, there are air mattresses so that bedsores do not occur, they are not available in the villages at all. Some patients have tracheostomy. They need oxygen cylinders at home. A suction machine is required to clean it; those who have a urinary catheter installed have to go to the hospital to change it. (IDI 5, CHO 2)

if we talk about pain as a symptom, the drugs that are available here are limited. We do not have tramadol. We have to call ….(name of an organization) for when we need morphine doses for the patients, the equipment and medicines that are not easily available. (IDI 12, Oncologist 1)

No we do not have any medicines to help cancer patients at subcentre, so all are referred to higher centres. (IDI 35, ASHA 5)

Limited and overworked workforce

Healthcare professionals consistently reported a shortage of skilled medical personnel as a significant barrier. This resulted in excessive burden on the current staff. Existing staff were overworked and overwhelmed leading to suboptimal patient care due to inadequate coordination, lack of clear responsibility and ownership, and shifting of responsibilities to other staff members.

The workforce is very limited; our health workers also do not have much time to give to a patient. (IDI 5, CHO 2)

The first thing is that the ratio of doctor, staff and patient is not good. We are not even able to give primary care properly. (IDI 3, MO1)

Recognizing the need for dedicated PC services

CHOs acknowledged that they could help patients and contribute to their wellbeing and that their role extended beyond just medical support.

We could explain to their family members that the patient might face difficulties during the treatment. (IDI 2, CHO 1)

Sir, we can meet the cancer patients and their families and can give them information about medicine, diet and guide them. (IDI 5, CHO 2)

However, participants advocated the need for dedicated PC team for delivering comprehensive care to people with cancer.

If the care needs of the patient can be fulfilled at home, then we should get it done at home and do not take the patient to the hospital again and again. (IDI 5, CHO 2)

So, if there are more such people they would be able to get all that they need at home and they won’t have to go anywhere and face problems. Any issues that they have they can call us and now we are able to call you for the solution and a staff member or a team is there on the need basis. (IDI 35, ASHA 5)

Theme 4: Formal gaps and informal strengths: factors shaping CBPC access

The absence of nearby healthcare facilities was identified by participants as a major barrier to the delivery of CBPC. In contrast, the active involvement of local non-governmental organizations (NGOs) in addressing the biopsychosocial needs of individuals with cancer emerged as a significant facilitator.

Limited access to local healthcare facilities

Many participants reported that a lack of proper medical facilities in rural areas posed a major challenge for patients with cancer. These centers were either unavailable or inadequate in terms of service, compelling many patients to travel long distances to access PC.

First we went to the government hospital and later to …(another government hospital), they referred us to ….(yet another distant government hospital). We stayed there for 15–20 days. (IDI 14, Caregiver 1)

village has a population of 7500 but there is no health facility at all. (FGD 2, ANM)

So nearby hospitals should have such facilities as there is a lot of population that they caters to. (IDI 40, ASHA 9)

Lack of adequate medical infrastructure and facilities in underdeveloped areas left patients vulnerable to exploitation. Participants reported that private practitioners often prioritized profits over patient needs, recommended unnecessary and costly treatments leading to significant medical and financial hardships for patients.

Local practitioners guide them because to be frank….their motivation is the money only not benefit of the patient. (IDI 3, MO 1)

Some participants mentioned that lack of reliable transportation and accommodation facilities near faraway medical centers presented a significant obstacle. Patients and caregivers expressed that this was not only costly but also time consuming, creating difficulty especially for those with limited resources. These long distances and insufficient facilities deterred many from going to healthcare centers.

When a patient gets chemotherapy, there should be something for the patient to stay in the hospital after that. Just after chemo, when they come back home, with symptoms of vomiting, pain etc. they do not get appropriate treatment at home, nor do they have proper means to travel back and forth from hospital to home. (IDI 6, ASHA Facilitator 1)

We used to take the Bus early in the morning at 4:00 with or without eating anything. It took an hour for the bus, another 30min to wait for an auto to further take us to the hospital. So a total of 1hr 30 mins. (IDI 42, Caregiver 10)

Healing hands of the community: NGOs and charities in action

Some participants highlighted the significant role played by some non-governmental Organizations (NGOs), charitable organizations and self-help groups in addressing the biopsychosocial needs of people with cancer in the community.

Just as people go to Gurudwara they donate money there too. In our village, young boys create groups. We try to involve them too, that you should help collect money from your neighbourhood for a good cause. In general in villages whenever there is an occasion, we collect money for that. everyone contributed money for her treatment. Helping someone in need is a big thing. (IDI 11, Program officer)

Yes, CanSupport. They visit us regularly, ask about every patient, take their address and if they are within the 35km range they visit those patients. They take proper care of the patients from sponging to giving them medications and even counsel the family members about the patient. (IDI 12, Oncologist)

However, some participants reported lack of awareness about the existing organizations.

Nor did any organization member ever come to our house. No one ever asked.” (IDI 8, Patient 2).

No, apart from them no one came. No, I have not heard till now nor has anyone come to the house for care. (IDI 10, Patient 4)

Discussion

Our findings highlight several barriers and a few facilitators to accessing CBPC services in rural North India. These were mapped to the four pillars of the WHO public health approach to PC, as it has been advocated and shown to help integrate PC into existing healthcare systems [23].

PC is an important component of the Ayushman Bharat’s comprehensive primary healthcare through Health and Wellness Center initiative [28]. The national program for palliative care (NPPC) also recommends provision of PC through the existing healthcare system [29]. Despite being an integral part of the operational guidelines of these programs, the findings suggest lack of effective implementation of PC at the ground level with no dedicated budget. Although such funds exist, stakeholders narrative indicated that these funds remain limited to documentation and ineffective implementation at the ground level. Our results are in line with a previous study reporting no separate fund allocation for PC and inadequate implementation of policies [30].

Despite the existence of national guidelines, our finding indicate that many CHPs were either unaware of these guidelines or expressed confusion regarding their roles and responsibilities. Our findings align with others who have shown lack of clear instructions and guidelines as the main barrier to implementing home-based PC (HBPC) for people with cancer [31]. Absence of clear guidelines have been shown to create confusion, misunderstanding and delay in accessing PC services even in the USA [32]. Inadequate facilities, manpower, and resources have been reported by others as well to force people to rely on private medical services where they were often misguided with monetary gains prioritized over patient’s health and welfare [7]. This culminated in financial exploitation and making PC services inaccessible and unaffordable to many [26].

Our findings revealed that in order for CBPC services to be sustainable, there is a huge need to recognise and streamline the efforts of frontline CHPs like ASHAs. Our findings are consistent with another study from Kolkata, reaffirming the role of CHPs in the care delivery in underserved areas and making the services sustainable [11]. Under the NPPC and the Ayushman Bharat’s operational guidelines, ASHAs are responsible for identifying patients in need of PC, refer them to CHOs, ensure continuity of care by accompanying them for healthcare visits and provide home-based care [28, 29]. However, we found that lack of incentivization reduced their motivation. Our findings are corroborated by another study demonstrating challenges faced by ASHA workers such as inadequate compensation, heavy workloads, and limited training opportunities resulting in neglect of their responsibilities like home visits and community mobilisation [33]. Despite lack of recognition and incentivisation, a significant facilitator that emerged was the ASHAs’ self-perceived role in fulfilling the basic needs of their patients. Others have also postulated involvement of ASHAs to have a positive impact, as they live in and are more acceptable by the community, ensuring continued support required by the patients [34]. Another review highlighted the importance of involving CHPs like ASHAs in establishing PC services in culturally and geographically diverse settings like India [35].

People with cancer and their caregivers need financial assistance as they find it challenging to afford expensive medical treatment [11, 20]. Although the public health benefit packages include PC [36], participants reported that the prevailing health coverage schemes did not cover PC, resulting in financial burden on the patients and families. High treatment costs rendered patients reluctant to seek treatment and financial constraints hampered the quality of care delivered to them [37]. Lack of government support and insurance coverage for HBPC led many families to not access these facilities [11, 31]. Certain ambiguities like requiring hospital admission to avail the benefits created a vicious cycle of loss of wages and financial distress [38]. A recent study reported only 15.56% of patients having access to public health insurance schemes [39]. This inadequate coverage contribute to high OOP expenditure in India with healthcare costs and drug expenses scavenging 58.56% and 46.49% of total per capita monthly income respectively [39]. High OOP has been reported to contribute to catastrophic health expenditure and distress financing among 84% and 51% of breast cancer patient households in Punjab [40].

WHO emphasizes critical role of education and training of healthcare professionals while initiating PC services. However, we found that most CHPs felt unprepared to provide care to people with cancer due to lack of education and formal training in PC. Lack of training has been identified as the main impediment to the delivery of quality PC to patients with advanced cancer [41]. Education and training have been projected to remain a major obstacle to implementing PC services in India owing to a greater emphasis on the disease pathophysiology and treatment in the medical curricula with little, if any, emphasis on pain management, symptom control, communication and EOLC [42]. Our findings concord with previous studies showing that lack of education and training led many healthcare professionals feeling unequipped in providing comfort care, pain management, and guidance to improve QoL of their patients [32]. This lack of education and training contributed to unawareness, flawed perception, myths and misconceptions about cancer and PC. Previous studies have also highlighted that patients seek treatment for cancer in their last stages due to lack of awareness about the signs and symptoms of illness and faulty perceptions like cancer as a communicable disease or that patients visiting cancer centres are dying [11, 21, 43]. Similar to our findings, others have also reported misconceptions like cancer occurring as a result of past misdeeds or karmic punishment in the society [11, 43]. This stigmatisation not only led to delayed diagnosis and treatment but also postponed symptom management and access to PC [11]. Many participants did not share their diagnosis out of fear of discrimination and social isolation, making them unlikely to engage in PC as they feared that accessing these services might reveal their illness to the community. Moreover, perceiving PC as EOLC contributed to resistance in seeking PC [11]. Literature also supports that PC is often misunderstood as giving up, EOLC, or imminent death, reflecting a lack of understanding and clarity about PC; thereby impacting PC referrals [11, 32, 44]. Nevertheless, such barriers could be surpassed by regular community awareness and sensitisation sessions as reflected by many participants in our study. CHWs’ acknowledgement of the need for education and training in PC to improve the QoL of their patients and caregivers emerged as a major facilitator. Similar receptiveness and interest in gaining information and understanding benefits of PC were reported by healthcare professionals in an another study [21]. Emerging evidence supports the role of PC training in bridging this knowledge gap. A recent study showed an online training program significantly improved physicians’ confidence in managing various PC needs in India [45]. Such training programs could be impactful in imparting PC knowledge and training in resource limited settings like ours.

Unavailability of essential drugs like morphine, equipment, and other symptomatic medicines hindered delivery of PC, leaving patients with uncontrolled symptoms and pain. These findings are in line with other studies highlighting inaccessibility to essential drugs and opioids in India [11, 30]. The WHO recommends morphine as the mainstay for cancer pain management. Opioids like morphine are amongst the essential drugs in both the WHO and India’s national list of essential medicines (NLEM), to be available at the primary health centre (PHC) level [46, 47]. However, despite this, a recent situation analysis revealed that many state-level essential drug lists (EDL), including Punjab’s, lack oral morphine. India’s per capita consumption of morphine ranked lowest in the world (113th out of 131 countries) [48, 49]. Some of major cited barriers to opioid accessibility include stringent narcotic drugs and psychotropic substances (NDPS) rules, cumbersome licensing, harsh punishment prescribed by the NDPS Act and fear of addiction and respiratory depression [11, 30]. The high prevalence of illicit opioid use in certain regions of India e.g. Punjab has been well documented [50, 51]. This misuse has contributed to stringent regulatory controls, prescriber hesitancy, and social stigma surrounding opioid use for legitimate medical purposes [52], thereby indirectly constraining access to opioids for pain management and PC. While none of the study participants explicitly mentioned illicit opioid use, this issue represents a potential contextual factor influencing opioid accessibility and PC delivery. The absence of such references in the interviews may reflect social desirability bias or participants’ reluctance to discuss a sensitive and potentially stigmatized topic. Given the broader concerns regarding opioid misuse and its regulatory implications, this finding underscores the need for further exploration of how community-level perceptions and practices surrounding opioid misuse influence PC delivery. Future studies using ethnographic approaches could explore community narratives and practices surrounding illicit opioid use to better understand how these dynamics affect attitudes toward prescription opioids and the delivery of PC. However, several amendments have been made to date to ease the availability of essential opioids at ground level but the situation has not changed much for north India specially for Punjab [11, 41]. To improve the opioid access at grassroot level, timely revision and alignment of state EDLs with NLEM is the need of the hour [48]. On a larger scale, international guidelines also contribute to the inaccessibility of opioids in the Global South. A recent study voiced for decolonisation of global pain relief policies and argued that existing narcotics control measures often result in overregulation, limiting access in LMICs, advocating for international reforms based on equity and justice [53].

Inadequate PC infrastructure emerged as another barrier to the provision of CBPC. Our finding of inadequate and overworked manpower aligns with previous literature highlighting lack of trained or specialized PC providers in the community [32]. Overburdening and shortage of staff often led to a reduction in their efficiency, productivity, improper coordination, diffusion of responsibilities and poor delivery of services. Lack of transportation and accommodation facilities, insufficient presence of NGOs and reliance on traditional medicines were identified as the other community-level barriers to accessing PC services. Distant healthcare facilities required many patients and caregivers to travel long distances to get their medications, treatment and investigations. These findings align with other studies demonstrating geographical distance and limited transportation as the barriers to accessing healthcare facilities by patients with CLLI in rural communities [11, 32]. Lack of services and clinically trained staff forced patients to rely on unlicensed rural medical practitioners (RMPs) or traditional healers [11]. Remoteness of healthcare centres in rural north India forced patients to travel to distant urban healthcare centres for treatment contributing to delayed access to PC [11, 21]. Travelling long distances is not only time consuming and costly but often challenging for patients with advanced cancer with uncontrolled symptoms and limited mobility [11]. In sync with our findings, others have also shown that NGOs can play an essential role in fulfilling PC needs at the ground level [11]. Much of the progress made in PC in India has been driven mainly by the NGOs [30]. However many participants reported unavailability and unawareness of active NGOs in their communities contributing to unrelieved suffering. Sharma et al. also reported that out of 90 patients requiring PC only one had access to HBPC by an NGO, that too in the capital city of Delhi [39].

Strengths and limitations

To the best of authors knowledge, this is the first study to comprehensively assess factors hindering and facilitating provision of CBPC in rural north India from the perspectives of all the involved stakeholders. The WHO public health approach helped identify barriers at the level of policy, education, drug availability and infrastructure and in selecting theory-informed and empirical interventions to address and leverage the identified barriers and facilitators respectively (Fig. 2). Theory-informed interventions are more effective and recommended in designing and evaluating complex interventions; allowing understanding of mechanisms involved in behaviour change and intervention success or failure [54].

Fig. 2.

C3PaC implementation strategies

Our study had few limitations. A refusal rate of 17% may have introduced potential bias as those who refused to participate may have held different perspectives. Second was the potential information bias due to varying interview durations among different participant groups (CHPs: 15.06 ± 6.66, caregivers: 15.61, ± 2.42, patients: 17.64 ± 6.82 and program officers: 24.94 ± 6.78). Although researchers were reflexive and ensured key topics were covered, this difference in interview length could have skewed data depth. Despite data triangulation with field notes, this bias might compromise the validity and generalizability of findings, requiring careful consideration. Thirdly, the participants were recruited from a small geographical area which limits the generalizability of findings to different sociocultural economic contexts. However, the identified barriers and facilitators might be relevant for similar sociocultural and economic contexts.

Conclusion

Through our study it was evident that the access to PC is restricted by an interplay of several barriers. Themes highlighted barriers like policy gaps, lack of structured PC provision with healthcare system, inadequate and inaccessible financial schemes, and insufficient incentivisation for frontline workers. Equally important were awareness and training gaps, reflected in unawareness, flawed perception and regressive attitudes. Systematic shortages – including lack of essential drugs and equipment, limited and overworked workforce, and the absence of dedicated PC teams further strained PC delivery. Additionally, limited access to local healthcare facilities, coupled with transportation barriers and inadequate infrastructure left many patients with unaddressed needs and timely care. These obstacles hindered access to and provision of CBPC services contributing to unrelieved pain and unaddressed symptoms and suffering of patients with cancer.

To bridge these gaps within existing healthcare system, a multi-faceted approach is required. This includes awareness programs in the community, addressing myths and misconceptions about cancer and PC, and making training a catalyst for change. Capacity building of CHPs and recognising ASHA workers as vital resources through proper incentivisation can improve PC delivery at ground level. Effective implementation of supportive health policies and expansion of financial support mechanisms are crucial at the grassroot level. Moreover, by improving referral systems through collaboration and coordination among CHPs, as well as fostering partnership with local NGOs and charities can further enhance PC access. Equally, systemic gaps can be tackled down by ensuring proper supply of essential medications and equipment, addressing workforce shortages and having PC services and teams available at CHCs.

Only by addressing these barriers comprehensively we can implement culturally appropriate, community-driven, equitable and compassionate healthcare system which truly meets the needs of deprived people with cancer in rural North India, ensuring dignified life that they deserve.

Supplementary Information

Below is the link to the electronic supplementary material.

Glossary

ANMs

Auxiliary nurse midwives.

ASHAs

Accredited social health activists workers.

CBPC

Community based palliative care.

C3PaC

Comprehensive coordinated community-based palliative care for cancer patients.

CHC

Community health centre.

CHOs

Community health officers.

CHPs

Community healthcare providers.

COREQ

Consolidated criteria for reporting qualitative study.

FGDs

Focus group discussions.

HBPC

Home based palliative care.

IDIs

In-depth interviews.

LMICs

Low-and middle-income countries.

MOs

Medical officers.

NCDs

Non communicable diseases.

NP-NCD

National Programme for Prevention and Control of Non-communicable Diseases.

NPPC

National Program for Palliative Care.

OOP

Out-Of-Pocket expenditure.

PC

Palliative care.

SHS

Serious health-related suffering.

WHO

World Health Organization.

Author contributions

Concept: MG, AK, SM; Design: MG, AK, SM, SS, BL, SC, DG, SG, SP; Data Collection: MG, AK, SM, SS, BL, SC, DG; Data Interpretation: MG, AK, LG, SM, SS, BL, NK, SC, DG, SG, SP; Writing of manuscript: MG, AK, LG, SM, SS, BL, NK, SC, DG, SG, SP; Revision of manuscript: MG, AK, LG, SM, SS, BL, NK, SC, DG, SG, SP. All authors read and revised the final manuscript.

Funding

This research was part of a project funded by the Indian Council of Medical Research.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study was conducted in accordance with the declaration of Helsinki after obtaining permission from the All India Institute of Medical Sciences, Bathinda institutional ethics committee (IEC/AIIMS/BTI/157) and written informed consent from the participants.

Consent for publication

Taken.

Competing interests

The authors declare no competing interests.