Addressing the critical palliative care gaps in ethnic minority regions of low- and middle-income countries: a focus group study

Abstract

Background

Palliative care is an important approach to relieving suffering and improving quality of life for people living with serious illness. Yet its development remains challenging in many low- and middle-income countries, particularly among vulnerable populations such as ethnic minorities. In ethnic minority regions of China, the palliative care implementation is shaped by distinctive social-cultural and practical realities. This study aims to systematically develop the major barriers and to generate actionable recommendations to policymakers to facilitate the advancement and implementation of palliative care in these regions.

Methods

A qualitative approach was conducted using seven focus group discussions with 56 participants drawn from key stakeholder groups, including healthcare providers, policymakers, patients, and community workers. Data were analysed using reflexive thematic analysis.

Results

Six interrelated themes were developed: palliative care at the margins of local health systems, shortage of trained professionals, policy endorsement without local traction, palliative care as giving up rather than caring differently, linguistic distance and fragile therapeutic communication, and families carrying the burden of system absence. These themes suggested that the limited development of palliative care in ethnic minority regions of China reflected not only resource constraints, but also weak system integration and insufficient alignment with local sociocultural, linguistic, and caregiving realities.

Conclusions

Advancing palliative care in ethnic minority regions requires improvements in essential resources, workforce training, culturally sensitive communication, and social support systems. The findings provide policy relevant insights for China and may also inform palliative care development in other low- and middle-income settings with underserved ethnic minority populations.

Trial registration

Not applicable.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12916-026-04945-2.

Background

Palliative care is an essential component of integrated, people centred health services and a core element of efforts to safeguard quality of life and human dignity for individuals living with serious illness [1–3]. It addresses physical symptoms as well as psychosocial and spiritual distress, supporting both patients and their families across the disease trajectory rather than only at the end of life [4, 5]. Despite its well-established clinical and ethical foundations, access to palliative care remains strikingly limited worldwide. The World Health Organization (WHO) estimates that only around 14% of those in need actually receive palliative care services, revealing a substantial gap between global need and service provision [6]. As countries strive to achieve Sustainable Development Goal 3 and deliver universal health coverage (UHC) with meaningful quality and equity, the WHO has repeatedly called for palliative care to be strengthened and embedded within national health systems [7, 8]. While palliative care delivery has become relatively established in many high-income settings, coverage in low- and middle-income countries (LMICs) remains markedly low, with access further constrained among structurally disadvantaged populations, including ethnic minority communities [9–12]. Understanding the barriers to palliative care development in resource-limited and socially marginalized contexts is therefore not only a pressing public health priority but also a necessary step toward advancing equitable health systems.

Existing evidence on palliative care development and implementation has been generated predominantly in high-income countries, including the United States [13, 14], the United Kingdom [15, 16], and Australia [17, 18]. In these settings, palliative care is supported by relatively well-established institutional foundations, service networks, and specialist workforce, and research has systematically examined key domains such as service delivery models, interdisciplinary teamwork, symptom management and continuity of care, integration across community and home-based settings, as well as quality evaluation and cost-effectiveness [19–21]. By contrast, empirical research from low- and middle-income regions remains limited, despite the fact that the largest share of global palliative care need is concentrated in resource-constrained contexts. More importantly, even within the already sparse LMICs literature [22–24], structurally disadvantaged populations have received far less dedicated attention, and evidence focusing specifically on ethnic minority patients and their local health systems is particularly scarce. Existing studies have tended either to document broad implementation challenges in resource-limited settings or to focus on single stakeholder groups, without adequately examining how barriers are experienced, interpreted, and reproduced across different actors involved in care. As a result, three issues remain insufficiently understood: first, how palliative care development is constrained in ethnic minority settings characterized by both structural disadvantage and cultural diversity; second, how these barriers are perceived across patients, healthcare providers, policymakers, and community actors; and third, how system-level, sociocultural, and caregiving factors interact to shape access, continuity, and quality of care. Addressing these gaps is important not only for documenting disadvantage, but also for developing a more explanatory understanding of why palliative care remains difficult to establish in underserved settings.

Within this global evidence landscape, China represents a particularly relevant and underexamined context. As a multi-ethnic country, China has a large ethnic minority population that is predominantly concentrated in specific regions, many of which are geographically remote, economically less developed, and marked by persistent inequities in health service capacity [25]. These characteristics make ethnic minority regions a particularly important setting for examining the development of palliative care under conditions of structural disadvantage. Although palliative care concepts were introduced into China in the late 1980s and were gradually explored in selected urban hospitals [26], national development has remained slow and uneven, and a comprehensive, system-wide model is yet to be firmly established [27, 28]. In recent years, accelerating population ageing, the rising burden of chronic and life-limiting conditions, and the increasing emphasis on quality and equity under UHC have elevated palliative care on China’s policy agenda [29]. National strategies such as Healthy China 2030 explicitly call for strengthening end-of-life care and palliative services, and for progressively incorporating palliative care into the basic package of health services [30]. Building on this policy direction, subsequent pilot initiatives on an ning liao hu (comfort care) have promoted the establishment of palliative care wards or beds in hospitals, the provision of services in community health centres and township health centres, and the development of home based palliative care, with increasing emphasis on coordination and referral between institutional and home settings [31, 32]. However, progress has been far less pronounced in ethnic minority regions, where palliative care development continues to lag behind and substantial gaps remain between policy intentions and service realities. In the absence of context sensitive evidence, the mechanisms that constrain palliative care development in these settings, and the barriers that should be prioritized for action, remain insufficiently understood.

To address this gap, this study focuses on ethnic minority regions in China as the geographic and service contexts in which palliative care is organized and delivered, while also attending to the needs and experiences of ethnic minority populations living within these settings. Using a multi-stakeholder qualitative design, the study examines how barriers to palliative care development are understood across patients, healthcare professionals, policymakers, and community workers. Specifically, it aims to develop an interpretive account of the key barriers to palliative care development across three interrelated domains, health system capacity, service provision, and sociocultural context, and to clarify how these factors interact in local practice to influence access, continuity, and quality of care. In this sense, the study contributes not only by documenting barriers in an underexamined population, but also by showing how structural constraints, sociocultural realities, and family and community level conditions intersect to shape palliative care development. By integrating different stakeholders’ perceptions in China, this study extends the palliative care and health equity literature beyond high-income settings and provides context-grounded insights from ethnic minority regions in an upper-middle-income country. Although grounded in the Chinese context, the findings may also offer useful insights for other LMICs and for underserved minority populations seeking to develop more context sensitive and equity oriented palliative care systems. This study therefore adds value not only by providing evidence from an underexamined population, but also by showing how structural, sociocultural, and caregiving factors intersect across stakeholder perspectives to shape palliative care development in underserved settings.

Methods

Study design

This study employed a qualitative research design to explore barriers to palliative care development in ethnic minority regions in China. Given the study aim of capturing stakeholders’ experiences, interpretations, and priorities in real-world contexts, focus group discussion (FGD) was used as the primary method of data collection. Focus groups are particularly suitable for generating rich, interaction-based data, as they facilitate collective reflection and enable the integration of diverse perspectives across stakeholder groups [33]. This approach allowed us to explore salient barriers and to better understand how these constraints are perceived and negotiated within local contexts.

Setting

This study was conducted in regions of China with substantial ethnic minority populations, including the Guangxi Zhuang Autonomous Region, Ningxia Hui Autonomous Region, Xinjiang Uygur Autonomous Region, Inner Mongolia Autonomous Region, Xizang Autonomous Region, Yunnan Province, Guizhou Province, and Jilin Province, as shown in Fig. 1. Some of these provinces like Zhuang, Hui, Uygur, Zang, Miao, Yi, Tujia, Mongolian, Dong, Bai, and Korean, are among the largest ethnic minorities in the 55 officially recognized ethnic minorities in China. While the Han ethnic group is the largest ethnic group in China, these selected ethnic minorities, with their large populations, represent a significant portion of the ethnic minority population in the country, making them highly representative.

Fig. 1.

Study site

The selection of these regions ensures a comprehensive representation of ethnic diversity and reflects significant variations in geographic location, socio-economic development, and health service capacity. These regions include border and inland areas, urban and rural settings with varying sociocultural and practical realities, providing valuable insights into the unique challenges faced by ethnic minority communities in promoting palliative care services. By collecting data from these representative minority regions, this study aims to provide practical and applicable insights into the barriers and challenges for developing palliative care for ethnic minority populations in China.

Participants and recruitment

Participants were purposively drawn from four stakeholder groups considered central to palliative care development in ethnic minority settings. These groups were selected to capture perspectives from service delivery, policy and system organization, service use, and community level support. Explicit eligibility criteria were established in advance to ensure that all participants could provide information-rich, experience-based, and role-relevant accounts.

The first group comprised healthcare professionals, including physicians and nurses currently working in hospitals, community health centres, or township health centres serving ethnic minority populations. They were required to have received some form of palliative care training, whether formal or informal, and to have at least one year of direct practical experience in providing palliative or end-of-life care to ethnic minority patients in routine practice, either in specialist palliative care roles or in broader clinical positions involving symptom management, supportive care, communication with patients and families, referral coordination, or terminal care.

The second group comprised policymakers and health administrators. They were required to be currently working in ethnic minority areas and to be directly involved in health governance, service planning, programme management, or policy implementation relevant to palliative or end-of-life care. This included responsibilities related to the development, coordination, oversight, or implementation of policies, services, or institutional arrangements affecting palliative care delivery in ethnic minority settings.

The third group comprised patient participants. They were required to be members of an ethnic minority group, to be aged 18 years or above, to have been identified by collaborating clinical teams as currently receiving palliative or end-of-life care for an advanced or life-limiting illness, to be able to communicate in Mandarin, and to be physically, cognitively, and emotionally able, as well as willing, to participate in an interview at the time of recruitment.

The fourth group comprised community workers. They were required to have sustained experience serving ethnic minority communities and practical familiarity with local care needs, family support, community-based service coordination, or barriers to care access faced by ethnic minority patients and families.

Across all groups, individuals were excluded if they had no direct relevance to the study focus, lacked sufficient role involvement or practical experience to provide meaningful accounts, were unable to communicate meaningfully in the interview setting, were considered too unwell or emotionally distressed to participate, or declined participation. Detailed inclusion and exclusion criteria are presented in Appendix A.

Potential participants were identified through collaborating healthcare institutions, community service organizations, and local health authorities. In practice, local institutions and authorities helped identify individuals who met the predefined eligibility criteria and facilitated initial contact with potential participants, particularly in geographically dispersed or hard-to-reach sites. They were then approached either by members of the research team or through designated local contacts, depending on the recruitment pathway. Before any decision about participation was made, all potential participants were provided with study information describing the purpose of the study, the procedures involved, confidentiality protections, and their right to decline or withdraw at any time without consequence. This information formed part of the formal informed consent process. Written informed consent was obtained from all participants on a voluntary basis before the start of each focus group discussion and prior to any data collection. Participants were also informed that their decision to participate or not would have no effect on their employment, care, or institutional relationships. Although two authors were involved in participant invitation, they had no pre-existing personal, clinical, supervisory, or managerial relationships with the participants they approached. Information on the number of individuals who declined participation prior to enrolment was not systematically documented, however, recruitment proceeded smoothly through local institutional support, and the final sample achieved the intended diversity across stakeholder groups and regions, suggesting that any non-participation did not materially affect the study. Participants who consented were informed that they could pause or withdraw at any stage of the discussion without consequence.

In total, seven focus group discussions were conducted, with 6–9 participants per group, resulting in a final sample of 56 participants. The seven focus groups were organized across multiple ethnic minority regions in China using a combination of in-person and online formats to accommodate geographical dispersion and variation in local service contexts. Group composition varied across the seven discussions, but each focus group included a mixed stakeholder configuration rather than a single stakeholder composition. Although focus groups are commonly organized to preserve relative within group homogeneity, we intentionally adopted a mixed stakeholder design because the study sought not only to capture stakeholder-specific perspectives, but also to examine how barriers to palliative care were expressed, negotiated, and interpreted across different roles within the same service and policy environment. This approach was considered especially appropriate for a system level topic such as palliative care development in ethnic minority settings, where clinical care, policy implementation, patient experience, and community support are closely interconnected. By bringing multiple stakeholder perspectives into the same discussion setting, the study aimed to generate interactional insights into areas of shared concern, disagreement, and role specific tension that might not have been as visible in single stakeholder groups.

Meanwhile, we recognized that mixed group discussions could introduce challenges related to power asymmetries, dominant participation, and status related influence on how participants responded to one another. To mitigate these risks, the moderator established clear ground rules at the beginning of each session, emphasizing respectful participation, the equal value of all viewpoints, and that participants were not expected to agree or reach consensus. During the discussions, active facilitation strategies were used to support balanced participation, including inviting quieter participants to contribute, using targeted prompts to broaden discussion across stakeholder roles, and intervening where necessary to limit overly dominant contributions. Field notes were also used to document interaction patterns, participation dynamics, and possible asymmetries in discussion, and these observations were considered during data interpretation.

Recruitment and data collection proceeded interactively. Following each focus group, the research team conducted a preliminary review and reflective discussion to assess whether the dataset was providing sufficient breadth and depth to address the study aims and whether additional perspectives were still needed from subsequent groups. Recruitment was discontinued when subsequent discussions no longer contributed substantively new patterns of meaning relevant to the analytic objectives.

Data collection

Focus group discussions were conducted between July 2024 and September 2025, with each session lasting approximately 100 min. To accommodate participants’ geographic distribution and scheduling constraints, data collection was carried out using a combination of online meetings and in-person sessions held in meeting rooms. All members of the research team received formal training in focus group interviewing techniques. H.W. and X.X. were directly involved in the data collection process. H.W. served as the moderator to guide the discussion, while X.X. took field notes and assisted with process management. Although focus groups generally lasted around 100 min, participation by patient contributors was adjusted flexibly according to their physical condition and tolerance.

A broadly consistent procedure was followed across focus groups. At the beginning of each session, the moderator introduced the study aims and discussion ground rules, emphasizing voluntary participation, anonymisation, and confidentiality of the discussion content, and encouraged participants to speak freely based on their own experiences. The semi-structured topic guide was developed to align closely with the study aims and was informed by the relevant literature and iterative discussions within the research team. Prior to formal data collection, the guide was pilot-tested with individuals from relevant stakeholder groups whose backgrounds were similar to those of the target participants but who were not included in the formal study sample. Feedback from the pilot informed minor refinements to improve the clarity, sequencing, and relevance of the questions and prompts. The moderator then used the semi-structured topic guide to facilitate discussion across key domains, including perceptions and acceptance of palliative care, service accessibility and care experiences, major barriers encountered in practice, and potential strategies for improvement. During the discussions, probing questions, clarification, and periodic summarising were used to promote cross-stakeholder dialogue and to ensure that participants from different groups had opportunities to contribute. Appendix B provides the focus group discussion guide.

Particular attention was paid to the comfort and wellbeing of patient participants during data collection. Patients were invited to participate only when collaborating clinical teams considered them physically and emotionally able to do so at the time of recruitment. Before and during each discussion, the moderator checked participants’ comfort and willingness to continue. Participants were informed that they could pause, rest, withdraw temporarily, or stop the discussion at any point without consequence. Where signs of fatigue, distress, or physical discomfort were observed, the discussion pace was adjusted and, when necessary, additional breaks were offered or participation was discontinued.

The discussion guide was developed in Chinese, and all focus groups were conducted in Mandarin Chinese. Although the study took place in ethnic minority regions, all participants were sufficiently fluent in Mandarin to engage fully in the discussions, which helped maintain linguistic consistency across groups. To enhance data completeness, all focus groups were audio recorded in full with prior permission from the participants and supplemented by contemporaneous note taking. Through field notes, the research team also documented key discussion points, interaction dynamics, and contextual details that might not be fully reflected in the recordings, including areas of consensus, disagreement, and notable emotional responses. Audio recordings were transcribed verbatim in Chinese within 24 h after each session, and the transcripts were cross-checked against field notes to improve accuracy and preserve contextual meanings. Excerpts reported in English were translated from the Chinese transcripts by the research team and checked against the original context to ensure semantic accuracy.

Data analysis

The focus group data were analysed using Braun and Clarke’s reflexive thematic analysis (RTA) [34, 35]. RTA was selected because the study aimed to develop an interpretive account of barriers to palliative care development in ethnic minority regions that would be relevant to policy and practice, rather than to generate coding consensus or apply a pre-existing analytic framework. The analysis was informed by an interpretivist orientation, was conducted inductively, and operated primarily at the semantic level, focusing on participants’ explicit accounts and experiences rather than applying pre-specified categories or prioritizing latent interpretation.

Consistent with this approach, analysis followed Braun and Clarke’s six-phase process of data familiarisation, coding, generating initial themes, reviewing and developing themes, refining and naming themes, and producing the report [36]. H.W. and X.X. were directly involved in the analytic process. X.L. and X.W. contributed to data coding, later-stage interpretive discussions, and theme refinement. All transcripts were read repeatedly in Mandarin Chinese to support deep familiarisation with the dataset, and initial analytic memos were written throughout the process. Initial codes were then generated across the dataset to capture patterns of meaning relevant to the research questions, including participants’ accounts, examples, and explanations of barriers.

Conceptually related codes were subsequently clustered into candidate themes, which were interactively refined through ongoing engagement with the data across focus groups and stakeholder groups. Candidate themes were repeatedly reviewed and refined to enhance internal coherence, conceptual distinctiveness, and analytic relevance to the study aims. This analytic process resulted in six themes that captured major patterns of meaning related to barriers to palliative care development across stakeholder perspectives. Representative verbatim quotations were retained in the reporting of findings to illustrate the analytic claims made and to enhance transparency. Where quotations are presented in English, they were translated from Mandarin Chinese after theme development, and the translations were checked by a bilingual member of the research team (Y.T.) to ensure that meaning was preserved as closely as possible.

Rigour

To support methodological integrity, we emphasized reflexive, transparent, and contextually grounded analytic practice throughout the study. Data collection and analysis proceeded interactively, allowing the research team to reflect on emerging patterns of meaning and to consider whether the dataset provided sufficient depth and diversity to address the study aims. Audio-recordings, verbatim transcription, and field notes were used to preserve contextual detail and to support careful engagement with the data.

Reflexive memo-writing and regular analytic discussions were undertaken throughout the research process. These discussions were used to deepen interpretation, interrogate assumptions, and refine theme development, rather than to seek coding consensus. The multidisciplinary composition of the research team, including expertise in health policy, health services research, and qualitative inquiry, provided different interpretive perspectives during analysis. At the same time, the team remained attentive to how prior knowledge, disciplinary backgrounds, and assumptions related to palliative care and health system development might shape analytic attention and interpretation. Reflexive consideration also informed data collection, including attention to how moderator positioning, stakeholder status differences within mixed groups, and prior assumptions about palliative care development might influence questioning, interaction, and interpretation.

To enhance transparency, representative verbatim quotations were included in the reporting of findings to allow readers to assess the relationship between the data and the analytic claims presented. In addition, coding and theme development were conducted in Mandarin Chinese to preserve linguistic and contextual nuance, while the English translations of selected quotations were checked by a bilingual member of the research team (Y.T.) to minimize loss of meaning in reporting.

Positionality and reflexivity

The research team was multidisciplinary and included researchers with backgrounds in health policy, health services research, and qualitative inquiry. Some team members had prior academic and professional engagement with palliative care and health system development in China, which provided important contextual understanding of the study topic and setting. Because the team was professionally engaged with the broader field under study, particular attention was paid to how these positions might shape both the framing of questions and the interpretation of participants’ accounts. Additionally, the team remained attentive to how disciplinary perspectives, prior knowledge, and assumptions about service development might shape data collection, coding, and interpretation. To support reflexive practice, the researchers used analytic memoing, post-focus group reflections, and regular team discussions throughout the study to critically examine emerging interpretations and the researchers’ role in theme development.

Ethics

This study was approved by the Ethics Committee of Guangxi Academy of Medical Sciences (IIT-2023-79), and conducted in accordance with relevant ethical principles. All participants received study information prior to the focus group and provided informed consent on a voluntary basis. Participants were informed of their right to withdraw at any time without any negative consequences. All data were anonymised, and audio recordings, transcripts, and related materials were stored securely and used solely for research purposes.

Results

Participants

A total of 56 participants were involved in seven focus groups. The sample comprised 24 healthcare professionals, 9 policymakers, 12 community workers, and 11 ethnic minority patients receiving palliative care, and reflected variation in gender, age, and geographical distribution across multiple ethnic regions in China. Detailed participant characteristics are presented in Table 1. The seven focus groups included 9, 8, 9, 7, 8, 9, and 6 participants, respectively, and further details on the composition of each focus group are provided in Appendix C.

Table 1.

Demographic characteristics of participants

	Number	Percentage
Gender
Female	21	37.50%
Male	35	62.50%
Age
25–30 years	6	10.71%
31–40 years	24	42.86%
41–50 years	17	30.36%
51–60 years	9	16.07%
Stakeholder Group
Policymakers	9	16.07%
Healthcare professionals	24	42.86%
Community workers	12	21.43%
Ethnic minority patients	11	19.64%
Region
Guangxi	11	19.64%
Ningxia	7	12.50%
Xinjiang	5	8.93%
Inner Mongolia	5	8.93%
Xizang	3	5.35%
Yunnan	9	16.07%
Guizhou	8	14.29%
Jilin	8	14.29%

Barriers to the development of palliative care in ethnic minority regions

Through reflexive thematic analysis of the focus group discussions, this study developed six themes as major barriers to the development of palliative care in ethnic minority regions of China. These themes reflected constraints at multiple levels, including local health system capacity, workforce preparation, policy implementation, cultural understanding, therapeutic communication, and the availability of family and community support. An overview of the themes, their central meanings, and representative quotations, is presented in Table 2.

Table 2.

Overview of themes

Theme	Central meaning	Illustrative quotation
Palliative care at the margins of local health systems	Palliative care remained weakly embedded in local health systems, particularly outside better-resourced urban settings, with limited infrastructure, specialist services, and referral capacity.	“Although our hospital has some pain relief equipment, we lack a dedicated palliative care department and interdisciplinary treatment team, so patients often only receive temporary pain management rather than comprehensive palliative care.”
Shortage of trained professionals	Limited training opportunities, fragmented preparation, and weak local workforce development constrained the capacity of providers to deliver comprehensive palliative care.	“While most healthcare providers are willing to help patients, due to the lack of professional training, many feel inadequate in practice. We can only offer temporary pain relief and cannot provide comprehensive palliative care…”
Policy endorsement without local traction	National policy support for palliative care had not been consistently translated into local implementation, funding, coordination, or a practical framework to guide service provision.	“The policy framework for palliative care has been clearly defined at the national level, but here, the policy’s enforcement is insufficient… There is a lack of funding and resource allocation for palliative care, which leaves services underdeveloped.”
Palliative care as giving up rather than caring differently	Palliative care was often interpreted as giving up treatment rather than as an approach aimed at relieving suffering and improving quality of life, which reduced its acceptability among patients, families, and sometimes providers.	“Many patients are unwilling to accept palliative care because they believe it means giving up all hope… all possible treatments should be exhausted before considering palliative care.”
Linguistic distance and fragile therapeutic communication	Language differences and limited translation support undermined symptom assessment, treatment understanding, emotional exchange, and trust between patients and providers.	“Most of our healthcare workers only speak Mandarin, while many of our patients speak ethnic languages. This makes it difficult to assess their symptoms properly and explain the treatment options clearly…”
Families carrying the burden of system absence	Weak formal and community support systems left families to shoulder most caregiving responsibilities without adequate professional, emotional, or practical support.	“Family caregiving here does provide emotional support, but without professional knowledge in palliative care, many patients’ symptoms remain uncontrolled, and the families often feel powerless…”

Themes were developed through reflexive thematic analysis and are presented alongside their central meanings to enhance clarity regarding the analytic interpretation of the findings

Palliative care at the margins of local health systems

Participants described palliative care in ethnic regions as occupying a peripheral position within local health systems, particularly outside better-resourced urban settings. What emerged across stakeholder accounts was not only a shortage of material resources, but also the absence of the organisational conditions needed to make palliative care a routine and reliable part of service delivery. In many settings, dedicated departments were unavailable, interdisciplinary teams were lacking, and the capacity to provide sustained symptom management and broader supportive care remained limited. As one physician explained:

“Palliative care is a systematic and specialised treatment that requires specialised equipment, medication, and an interdisciplinary team. Although our hospital has some pain relief equipment, we lack a dedicated palliative care department and interdisciplinary treatment team, so patients often only receive temporary pain management rather than comprehensive palliative care.” (Physician, Yunnan, FGD 5).

This account suggests that the problem was not simply the absence of individual inputs, but the limited integration of palliative care within local service structures.

For patients and families, this marginal position had immediate practical consequences. Where dedicated palliative care services were not available locally, care-seeking often became more difficult, more expensive, and more fragile. A patient described this burden in direct terms:

“The hospital in our county doesn’t have a palliative care department, so I have to go to a big city like Nanning. But the transportation, accommodation, and treatment costs are very high, and my family cannot afford it, so I am always at risk of abandoning the treatment.” (Patient, Guangxi, FGD 3).

Rather than pointing only to a lack of local specialist provision, this account also reveals how service absence could intensify financial strain and make continued care uncertain. A community worker raised a similar concern:

“While palliative care policies have begun to be implemented in large cities, here, the grassroots hospitals lack professional teams and necessary equipment, and many patients can only rely on family care and do not receive effective palliative care.” (Community worker, Guizhou, FGD 3).

Shortage of trained professionals

Participants across stakeholder groups described the shortage of trained professionals as a persistent constraint on both the reach and quality of palliative care in ethnic minority regions. What stood out in the data was not simply a numerical shortage of personnel, but the fragility of professional preparation for a form of care that requires clinical judgement, communication skills, and coordinated multidisciplinary working. Although all 24 healthcare professional participants had received some palliative care-related preparation, this was usually acquired through continuing education, short-term training, online courses, visiting expert supervision, or informal peer support rather than through sustained formal training. Only six participants had received training lasting six months or longer, while ten had received training of three to six months and eight had received training of one to three months. Participants repeatedly suggested that this preparation, while helpful, was too brief and fragmented to support routine delivery of comprehensive palliative care. As a result, symptom control, communication, and collaborative care were often experienced as areas of particular difficulty. A physician from Xinjiang described this gap in practical terms:

“In our region, the knowledge of palliative care is not widespread. While most healthcare providers are willing to help patients, due to the lack of professional training, many feel inadequate in practice. We can only offer temporary pain relief and cannot provide comprehensive palliative care, leaving many patients without the care they truly need.” (Physician, Xinjiang, FGD 7).

This account points to a recurring pattern in the data: willingness to care was present, but confidence and capability were often limited by insufficient preparation. The problem, therefore, was not only whether staff were available, but whether they had been equipped to respond to the multidimensional demands of palliative care in everyday practice.

Participants also linked this workforce difficulty to the absence of a stable local training pathway. A policymaker explained that palliative care remained a relatively new field in China, that trained professionals were scarce, and that those with stronger preparation were more likely to remain in major cities than to work in ethnic minority regions:

“The reality we face is that many healthcare workers involved in palliative care have not received professional training and are instead assigned to palliative care departments without proper preparation, leading to a lack of confidence when dealing with patients and ultimately affecting the effectiveness of palliative care.” (Policymaker, Ningxia, FGD 2).

A community worker expressed a similar concern from the perspective of grassroots care:

“In our area, grassroots hospitals do not have specialised training in palliative care. Healthcare workers rely mainly on their experience to treat patients, and often, they are unable to meet the multidimensional needs of the patients.” (Community worker, Inner Mongolia, FGD 4).

These accounts indicate that the workforce challenge was shaped not only by inadequate individual preparation, but also by weak local systems for cultivating and sustaining palliative care expertise over time.

Policy endorsement without local traction

Participants described a persistent gap between national policy recognition of palliative care and what could actually be implemented in ethnic minority regions. In their accounts, the central difficulty was not the absence of policy language itself, but the limited extent to which policy commitments had been translated into the conditions required for service delivery on the ground. In many settings, palliative care had not yet been prioritised within routine local health planning, and this weakened the allocation of funding, staffing, and operational support. As a result, many regions still lacked the infrastructure, financial support, and a framework to guide the provision of palliative care in practice, including access to essential medicines, training for healthcare personnel, and basic service organization.

A policymaker described this implementation gap directly:

“The policy framework for palliative care has been clearly defined at the national level, but here, the policy’s enforcement is insufficient. Local governments often only focus on policy documents without translating them into tangible actions. There is a lack of funding and resource allocation for palliative care, which leaves services underdeveloped.” (Policymaker, Xizang, FGD 1).

This account suggests that formal policy endorsement had not, by itself, created the institutional support needed to make palliative care a functioning part of local service delivery. The problem was less one of policy visibility than of weak operational follow through.

Participants also pointed to limited coordination and uneven resource flow at the local level. A community worker noted:

“Although there is policy support, in practice, the local health departments struggle to coordinate effectively. Many resources fail to reach grassroots hospitals, meaning that palliative care remains in the early stages of development. This issue is especially prevalent in ethnic minority regions, where local health authorities often marginalise palliative care as a secondary concern, lacking a comprehensive and long-term planning approach.” (Community worker, Jilin, FGD 4).

In this context, the absence of a workable framework for provision appeared especially important. Participants’ accounts suggested that before more formalised palliative care structures could be sustained, local systems first needed the basic policy conditions to support service organization, medicine access, workforce training, and cross-level coordination. Insurance coverage, standardisation, and training incentives were also described as incomplete, leaving both patients and providers to navigate an underdeveloped system with limited practical support.

Palliative care as giving up rather than caring differently

Cultural differences and cognitive biases present another major obstacle to the development of palliative care in ethnic minority regions. Within different ethnic groups and communities, there are significant differences in perceptions of death, illness, and treatment, which deeply affect the acceptance and implementation of palliative care. For example, in certain ethnic groups, especially those with strong traditional cultural beliefs, death is viewed as a natural part of life. Consequently, there is reluctance to accept palliative care, as it is often seen as a symbol of “giving up treatment” or “seeking death”. Many patients and their families misunderstand palliative care as something relevant only at the end of life, failing to recognize its broader role in relieving suffering and improving quality of life.

A physician described this tension clearly,

“In our area, many patients are unwilling to accept palliative care because they believe it means giving up all hope. Older generations especially feel that all possible treatments should be exhausted before considering palliative care. This misunderstanding causes a lot of confusion and reluctance toward palliative care among patients and their families.” (Physician, Guizhou, FGD 7).

This account illustrates how palliative care was not simply misunderstood as a clinical option, but judged against a broader expectation that treatment should continue for as long as anything more could still be done. Many patients and their families misunderstood palliative care as something relevant only at the end of life, rather than recognizing its broader role in relieving suffering and improving quality of life. Under such conditions, accepting palliative care could be experienced as emotionally and morally difficult.

A community worker expressed a similar concern from the perspective of families’ everyday understanding of care:

“Many patients and families have only a superficial understanding of palliative care. They see it as a last resort, equating it with ‘giving up treatment’, and fail to appreciate its importance in enhancing the quality of life.” (Community worker, Guangxi, FGD 1).

This suggests that palliative care was often positioned at the very end of illness, rather than recognized as an approach that could relieve suffering and support quality of life before all treatment options were exhausted. As a result, its role became narrowed and delayed. A nurse noted:

“Sometimes, when we suggest palliative care for a patient, the family reacts negatively, thinking it is irresponsible. As healthcare providers, we also face a cultural conflict because we are trained to do everything possible to treat the patient, and palliative care seems to contradict this traditional belief.” (Nurse, Yunan, FGD 3).

This account is important because it shows that the barrier did not operate only at the level of public awareness. It also entered clinical encounters and influenced how recommendations were received, negotiated, and sometimes resisted. In this sense, the challenge was not merely cultural difference in the abstract, but the persistence of a care logic in which palliative care was framed as doing less, rather than as caring differently.

Linguistic distance and fragile therapeutic communication

Participants described language difference as more than a technical barrier to information exchange. In many ethnic minority regions, the gap between patients’ everyday languages and the Mandarin-based language of healthcare created difficulty not only in basic symptom assessment, but also in the relational and interpretive work that palliative care depends on. This included explaining care options, understanding patients’ concerns, and building the trust needed for sensitive conversations about serious illness and end-of-life care. Where communication was limited, palliative care became harder to deliver in a way that was responsive, humane, and meaningful.

A physician described how this problem affect routine clinical encounters:

“In our region, the language gap is a big issue. Most of our healthcare workers only speak Mandarin, while many of our patients speak ethnic languages. This makes it difficult to assess their symptoms properly and explain the treatment options clearly, which can lead to misunderstandings and, ultimately, lower the quality of care we provide.” (Physician, Jilin, FGD 1).

This account suggests that linguistic distance directly shaped the clinical quality of palliative care by weakening both assessment and explanation. The challenge was not confined to isolated misunderstandings; it affected the broader possibility of shared understanding between patients and providers.

Participants also emphasized that the absence of professional translation support intensified this difficulty. A nurse added,

“Without professional translation, we struggle to understand the patients’ true concerns, and they often don’t fully grasp our treatment recommendations. This leaves many patients feeling uncertain and anxious about their care.” (Nurse, Ningxia, FGD 1).

In such circumstances, communication could easily remain limited to basic exchanges, thereby constraining deeper emotional exchange and meaningful discussions about patients’ suffering and available treatment options. The problem, therefore, was not only that information could be lost, but that important dimensions of palliative care, including reassurance, emotional expression, and trust-building, were also weakened. Across the data, participants linked these communication difficulties to a more fragile therapeutic relationship. When patients could not fully express themselves, and healthcare workers could not confidently communicate complex or emotionally sensitive issues, trust became harder to establish and sustain. In palliative care, where understanding suffering and responding to patient priorities are central, this linguistic distance was described as a substantial obstacle to care that was both clinically effective and emotionally supportive.

Families carrying the burden of system absence

Participants described family caregiving in ethnic minority regions as both indispensable and overstretched. Although family members were often the main source of daily care and emotional support, their role was shaped less by the presence of a strong support network than by the absence of formal services able to share the burden. What emerged across accounts was not simply that families were important, but that they were often left to carry responsibilities that exceeded what they could realistically manage without professional guidance, community support, or psychosocial resources. In this context, the limits of family-based care became a major barrier to comprehensive palliative care.

A community worker shared:

“Family caregiving here does provide emotional support, but without professional knowledge in palliative care, many patients’ symptoms remain uncontrolled, and the families often feel powerless due to the long-term caregiving pressure.” (Community worker, Xinjiang, FGD 2).

This account illustrates that family care, while valued and culturally meaningful, could not by itself meet the multidimensional needs of patients with advanced illness. Emotional commitment did not necessarily translate into symptom control, psychological support, or sustained caregiving capacity. A community worker remarked:

“In our area, grassroots hospitals do not have dedicated services for palliative care patients. The patients and their families have to rely solely on family members to provide care, which is insufficient to meet their needs.” (Community worker, Xizang, FGD 6).

This account suggests that family burden was intensified by the absence of complementary services, including community nursing, social work, volunteer support, and other forms of practical assistance that might otherwise have reduced isolation and improved continuity of care. Families were often required to provide care in difficult circumstances, with very little external support.

A patient expressed the emotional consequences of this absence in particularly direct terms:

“Because there are no professional psychological support services here, both I and my families feel very lonely. Often, we cannot receive adequate emotional comfort.” (Patient, Yunan, FGD 7).

This quote is important because it shows that the consequences of weak support systems were not limited to caregiving workload alone. They also extended into emotional isolation, lack of psychological comfort, and a broader sense of being left unsupported during serious illness. This emotional isolation not only affects the psychological well-being of patients and families, but also further complicates the care process. Across the data, participants linked these gaps not only to difficulties in managing physical symptoms, but also to shortcomings in the emotional and social dimensions of care that are central to palliative care. In this sense, the problem was not merely that social support systems were weak, but that families were left to absorb the consequences of a service environment that remained unable to provide reliable practical, emotional, and community-based support.

Discussion

To the best of our knowledge, this study is among the first to examine barriers to palliative care development in ethnic minority regions of China through the perspectives of multiple stakeholder groups. Rather than representing a set of discrete obstacles, the findings suggest a broader pattern in which palliative care remains structurally marginal within local health systems and insufficiently aligned with the cultural, linguistic, and caregiving realities of ethnic minority settings. The barriers identified in this study are therefore better understood not simply as a combination of resource constraints and sociocultural challenges, but as evidence of a wider gap between national level recognition of palliative care and its practical translation into accessible, acceptable, and sustainable care in underserved regions [7, 37]. This interpretation aligns with broader global evidence indicating that effective palliative care development requires coordinated progress across policy, service provision, education, implementation capacity, and access to essential medicines, rather than policy endorsement alone [38]. Additionally, the present findings suggest that these challenges become especially acute in ethnic minority regions when structural disadvantage is reinforced by geographic remoteness, workforce fragility, linguistic diversity, and limited alignment between policy implementation and local sociocultural realities.

A key contribution of this study is to show that the underdevelopment of palliative care in ethnic minority regions cannot be explained solely by resource scarcity. Resource barriers mainly include deficiencies in medical hardware facilities, medical human resources, essential palliative care medicines, and policy resources. However, the findings point to a more deeply embedded form of system marginalization, in which limited infrastructure, shortages of trained staff, uneven access to essential medicines, and weak local implementation interact to constrain service development. Participants’ accounts indicated that policy support at the national level had not consistently translated into the infrastructure, financial support, workforce preparation, and practical service frameworks required for routine local provision. This pattern is consistent with international evidence showing that palliative care development depends not only on formal policy recognition, but also on the availability of core system components, including medicines, trained staff, service organization, and implementation support [37, 39]. Similar challenges have been reported in LMICs, particularly where palliative care remains weakly integrated into primary and community care system [40, 41]. In the present study, however, these constraints appear especially pronounced in ethnic minority regions due to the compounding effects of geographic remoteness, uneven resource distribution, and limited local capacity to attract, train, and retain a specialised workforce. While shortages of medicines, trained personnel, and implementation support are widely reported in LMICs palliative care research, the present study suggests that these challenges take on a distinctive form in ethnic minority regions of China, where they are compounded by linguistic diversity, strong family-based care expectations, and the limited fit between existing service models and local care realities. These findings suggest that palliative care in such settings is not only under-resourced but also insufficiently integrated into the routine functioning of the health system.

The sociocultural dimensions of these findings warrant careful and nuanced interpretation. They should not be construed as implying that cultural values or religious beliefs among ethnic minority populations are intrinsically incompatible with palliative care, nor that progress in palliative care development depends on displacing those beliefs. Rather, the findings indicate a mismatch between dominant clinical framings of palliative care and local cultural understandings of hope, responsibility, family obligation, and good care at the end of life. In this context, palliative care is often interpreted as giving up treatment rather than as caring differently, which makes its introduction emotionally and morally challenging for patients, families, and, at times, providers. Language barriers further intensify this difficulty by limiting opportunities to explain treatment goals, explore patients’ concerns, and build trust through meaningful dialogue. These findings suggest that the challenge lies less in culture itself than in the limited capacity of current services to engage with cultural beliefs, family expectations, and linguistic realities in ways that are responsive, respectful, and clinically effective [42]. This distinction is important, because culturally sensitive palliative care should not be understood as adapting patients and families to the service, but as adapting the service so that it can work with, rather than against, the values and meanings through which patients and families understand illness, suffering, and care [43, 44]. In this respect, the findings are partly consistent with wider literature on culturally responsive palliative care, while also pointing to a more context-specific challenge in ethnic minority regions of China, where linguistic distance, family centred decision making, and local moral framing of treatment and hope may jointly shape how palliative care is understood and negotiated.

A further implication of these findings is that families in ethnic minority regions are not simply central participants in care, but are often required to absorb the consequences of weak formal and community support systems. Family caregiving is highly valued and represents an essential component of care provision. However, it is frequently overstretched due to limited professional guidance, scarce psychosocial services, and underdeveloped community based care structures. Reliance on families should therefore not be romanticized as an adequate substitute for formal service provision. Instead, it reflects the extent to which the burden of system inadequacy is transferred into households. This is evident not only in caregiving pressure and challenges in symptom management, but also in emotional isolation and insufficient psychological support for both patients and families. These findings are consistent with a growing body of literature showing that, in resource-constrained settings, family caregiving often compensates for limited formal provision but may do so at considerable emotional, physical, and financial cost [45, 46]. Family burden should therefore be understood not simply as a private consequence of illness, but as an indicator of underdeveloped palliative care systems in which community support, psychosocial care, and caregiver assistance remain insufficiently integrated into service delivery [47]. What appears especially salient in the present study is the extent to which this burden is intensified by the combined effects of limited service availability, weak community support, and the expectation that families will absorb responsibility in settings where formal provision remains fragile.

Policy implications

The findings of this study have several implications for policy and practice in ethnic minority regions of China and may be relevant to other culturally diverse and resource constrained settings.

First, priority should be given to strengthening the foundational conditions for palliative care delivery, particularly in primary healthcare institutions and remote areas. This includes ensuring access to essential palliative care medicines, especially opioids for pain relief, strengthening workforce capacity in symptom management, communication, and end-of-life care, and improving basic service organisation according to local needs. Specific measures could include establishing dedicated funding for essential medicines and workforce training, improving distribution mechanisms to ensure that key medicines reach remote areas, and strengthening telemedicine resources to enable teleconsultation with palliative care specialists in larger hospitals and extend specialist support to underserved settings. In addition, dedicated funding, more reliable medicine distribution mechanisms, and telemedicine support may help extend core palliative care capacity to underserved areas.

Second, professional training and interdisciplinary team development should be strengthened through both short-term and long-term strategies. In the short term, the priority should be to strengthen the capabilities of the existing workforce, especially in grassroots hospitals and remote areas. Targeted palliative care training should be provided to improve basic competencies in pain management, other symptoms relief, communication, and end-of-life care. Telemedicine can also help overcome geographical barriers by providing online education, remote guidance, and specialist support for healthcare workers in underserved settings. In the longer term,, the focus should shift towards establishing a systematic palliative care education and workforce development system to cultivate local professional capacity and support the sustainable development of palliative care in ethnic minority regions. This could include introducing specialised palliative care courses in medical schools and training institutions, providing continuing professional development opportunities, and supporting postgraduate education and academic exchanges for existing healthcare workers. Interdisciplinary collaboration should also be institutionalized by promoting integrated teams involving professionals from medicine, nursing, psychology, social work, and related fields.

Third, palliative care development needs to be culturally and linguistically responsive. This includes improving palliative care literacy among patients and families, strengthening culturally sensitive communication in both clinical and community settings, and using locally appropriate approaches to explain the goals and value of palliative care. Local language support, community outreach, and the involvement of trusted local actors may help reduce misunderstanding and improve acceptance of care. In addition, culturally responsive service development should not be understood as replacing local beliefs, but as enabling palliative care to be communicated and delivered in ways that are more acceptable and meaningful within local social and cultural contexts.

Fourth, family and community support should be treated as integral to palliative care development rather than as secondary additions. Strengthening community-based services, psychosocial support, and caregiver training may help reduce the emotional and practical burden currently borne by families in settings where formal provision remains weak. Because many families in ethnic minority regions bear the primary caregiving responsibilities but often lack the necessary caregiving knowledge, support for family caregivers should include not only training in basic palliative care skills and coping strategies, but also practical assistance such as caregiving tools and respite services.

Finally, sustained policy and financial commitment will be needed to support implementation and longer-term integration. This includes incorporating palliative care more fully into local health planning, improving financial protection for patients, and providing stable support for service delivery in remote and resource-limited areas. In particular, strengthening insurance coverage and reducing out-of-pocket costs may help alleviate the financial burden on patients and families, thereby increasing the acceptance and widespread integration of palliative care into the existing public health system. Longer-term progress will also depend on whether local governments are able to translate broad policy endorsement into operational mechanisms for workforce development, service coordination, and continuity of care. Without such implementation support, policy recognition alone is unlikely to produce meaningful improvement in access or service quality.

Although these findings arise from ethnic minority regions in China, they may have relevance for other culturally diverse and resource constrained settings, including parts of Africa and Southeast Asia, where palliative care development is similarly shaped by limited system integration, workforce constraints, linguistic diversity, and strong reliance on family care [40, 41]. Their contribution lies not in offering a directly transferable model, but in providing an analytic framework for understanding why policy recognition alone may fail to translate into accessible and acceptable palliative care in underserved populations. In this respect, the study contributes to broader efforts to advance equitable, context-sensitive, and system-integrated approaches to palliative care development globally.

Limitations and future research

This study provides valuable empirical evidences on the barriers to palliative care in ethnic minority regions of China, but several limitations also present opportunities for future research. First, the geographical limitations of the sample are one of the main constraints of this study. Although the research covers multiple ethnic minority regions and groups, the findings may not fully represent other regions, particularly those with different cultural and socio-economic backgrounds. Future research could expand to include more countries or regions with diverse cultural contexts and social structures, conducting cross-cultural comparative studies to explore the implementation challenges and strategies for palliative care in different cultural, economic, and social environments, thus enhancing the generalization of the findings. Second, the limitations of focus group interviews also impact the depth and breadth of the study. Since focus group discussions rely on subjective opinions and experiences, there may be biases in the information collected, especially regarding underrepresented voices from remote ethnic minority groups. To address this, future studies should incorporate multiple data collection methods, such as quantitative surveys, clinical data analysis, and longitudinal studies, to complement subjective feedback and improve the accuracy of the research findings. Additionally, Because the focus groups were conducted and analysed in Mandarin Chinese, and selected quotations were later translated into English for reporting, some nuance may have been reshaped in the process of translation despite careful checking by bilingual researchers. However, coding and theme development were undertaken in the original language to minimize premature loss of meaning. Third, palliative care in ethnic minority regions is still in its early stages of development. This study focused on systematically identifying and analyzing the barriers to palliative care in these areas, but it has not fully assessed the long-term effects and impacts of palliative care implementation in these regions. Therefore, future research should adopt a longitudinal study design to track the long-term development trends of palliative care and examine its effects on patient quality of life, quality of death, and other outcomes. By accumulating long-term data, such research can provide a more comprehensive understanding of the sustained impact of policy changes, financial support, and socio-cultural factors on the widespread adoption of palliative care, offering a stronger evidence base for future palliative care expansion. Last, this study offers actionable recommendations for advancing palliative care in ethnic minority communities in China. Future research should further explore how these recommendations can be operationalised in practice, including how social support networks can be strengthened to deliver emotional and practical support to both patients and their families, thereby improving the effectiveness of palliative care and promoting the quality of life and overall wellbeing of both patients and families. Furthermore, in response to the gaps in training systems for healthcare professionals in ethnic minority regions, future studies should explore innovative approaches in interdisciplinary team collaboration and remote education, developing more culturally adaptive and practical training models to enhance healthcare professionals’ skills and service quality, ensuring more effective implementation of palliative care.

Conclusions

This study developed six interrelated themes that illuminate why palliative care remains difficult to establish in ethnic minority regions of China. The findings suggest that the challenge is not only one of limited resources, but also of weak system integration and insufficient alignment between palliative care services and local sociocultural, linguistic, and caregiving realities. By centering an underserved and underexamined population, this study extends current understanding of palliative care development in culturally diverse and resource-constrained settings. Although grounded in the Chinese context, the findings may also have relevance for other LMICs or ethnically diverse regions facing similar structural and sociocultural constraints. Advancing palliative care in such settings will require not only stronger health system support, but also culturally and linguistically responsive models of care and sustained support for families and communities.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

WHO

World Health Organization

UHC

Universal health coverage

LMICs

Low- and middle-income countries

FGD

Focus group discussion

RTA

Reflexive thematic analysis

Author contributions

HW contributed to data collection, data analysis, manuscript drafting, and critical revision of the manuscript. XL and XW contributed to data coding and data analysis, including later-stage interpretive discussions and theme refinement. YT contributed to participant recruitment, data extraction, and verification of the English translation of quotations. LD contributed to participant recruitment and data extraction. XX contributed to the conceptualization and design of this study, participated in data collection, and was directly involved in data analysis and interpretation. All authors read and approved the final manuscript.

Funding

This research was supported by Guangxi Science and Technology Program (2026GXNSFAA00641259). The funder has no role in the design of the study and collection, analysis, and interpretation of the data, nor in writing the manuscript.

Data availability

The data are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was conducted with the approval of the Ethics Committee of Guangxi Academy of Medical Sciences (IIT-2023-79). Participation in this study was fully anonymous and voluntary, and all participants signed a written informed consent form. All focus groups were performed in accordance with relevant guidelines and regulations.

Consent for Publication

Not applicable.

Conflict of interest

The authors declare no competing interests.