Abstract
Purpose
This study explored current pediatric palliative care (PPC) in South Korea and suggests future directions based on the perspectives of full-time PPC workers.
Methods
A mixed-methods secondary analysis was conducted using survey data from nurses and social workers involved in a government PPC project. The survey assessed services provided by hospitals, nurses, and social workers, and gathered perceptions of challenging tasks, evidence needs, the significance of PPC, and future expectations through open-ended questions. Data were analyzed using frequency and conventional content analyses.
Results
Eighteen full-time workers from nine of the ten project hospitals participated. Eight hospitals provided pain and symptom management and all offered counseling and education for patients and parents. Only one provided respite care and legacy-making services. Bereavement care was offered in all hospitals primarily through individual counseling and there were also three self-help groups. Nurses have diverse roles including in practice, education, leadership, research, and consultation. Social workers address psychosocial and economic challenges, rehabilitation and social reintegration. The workers highlighted the challenges in end-of-life care and communication, stressing the need for protocols and further training. PPC was seen as meaningful by patients and families, as well as staff.
Conclusion
Despite significant progress in PPC in South Korea, quantitative capacity remains limited. Further qualitative improvements in policies, practices, human resource development, and healthcare training are essential. This study provides insights into current PPC practices and their limitations. The development of practical evidence to enhance employment stability warrants further investigation.
Keywords: Palliative care, Child, Health personnel, Perception, Nurses, Social workers, Government, Pilot projects
INTRODUCTION
1. Background
Pediatric palliative care (PPC) is a proactive and holistic approach that aims to alleviate or prevent the physical, psychosocial, and spiritual suffering of children and adolescents with life-threatening illnesses, while also supporting their families [1]. The World Health Organization (WHO) emphasizes that ensuring access to high-quality palliative care, regardless of age, diagnosis, or setting, is essential for upholding human rights related to the health of children and adolescents [1]. Developed countries such as the United Kingdom and United States have been implementing PPC since the 1990s, undertaking professional training and research to improve service systems [2].
In South Korea, PPC began in 2018 as a government-led pilot project at two hospitals, based on the framework established by the Third National Cancer Control Plan [3]. Since then, the program has gradually expanded. As of 2024, services are being provided at 12 institutions (11 tertiary hospitals and 1 general hospital) [4]. After 6 years of operation, the pilot phase transitioned into a support program in 2023 [3]. However, expansion remains limited because of various challenges.
Non-cancer conditions account for 73.8% of PPC cases and encompass a broad spectrum of clinical presentations. This diversity complicates the establishment of standardized protocols for PPC care delivery [5]. Korea also has a longstanding shortage of pediatric subspecialists, which not only hampers the provision of general pediatric services, but also restricts the availability of healthcare professionals with the advanced training necessary for effective PPC delivery [6]. Due to the developmental characteristics of pediatric patients, uncertainty in prognosis, and difficulty in estimating life expectancy, clinicians frequently encounter ethically sensitive situations in practice. These circumstances can lead to moral distress, negatively affecting care provision. Moreover, a lack of awareness of palliative care among pediatric healthcare providers may contribute to unnecessary life-sustaining treatments and a subsequent decline in patients’ quality of life [7].
Despite the growing social interest in the concept of “dying well” in Korea and the implementation of legal frameworks, such as the Act on Decisions on Life-Sustaining Treatment in 2016, and the subsequent decision-making system initiated in 2018, negative perceptions and insufficient understanding of palliative care among patients and caregivers continue to hinder the delivery of palliative care services. Although PPC is not synonymous with giving up treatment, many patients and caregivers tend to associate it with life-shortening interventions or end-of-life imminence, leading to a negative impression or even rejection of PPC [8]. Furthermore, cultural taboos against discussing death, which are deeply rooted in East Asian traditions, persist as significant barriers to the acceptance and utilization of palliative care services [9].
Despite these numerous challenges, access to PPC is essential. PPC is responsible for critical tasks including assessing the patient’s needs at various disease stages and the prognosis, planning and delivering individualized holistic care, linking appropriate social resources, and maintaining continuous therapeutic and professional communication with patients, families, multidisciplinary healthcare providers, and community stakeholders [10]. An efficient operation of PPC programs requires experienced and highly skilled healthcare professionals. However, as PPC currently exists only as a support program rather than a fully established service, core personnel, such as nurses and social workers, often serve in temporary positions and experience significant employment insecurity. This instability negatively impacts the quantitative maintenance and expansion of service recipients and the qualitative improvement of the services [10]. Furthermore, the lack of standardized and clearly defined roles within PPC teams complicates task allocation among dedicated staff, leading to overlapping duties, compromising a smooth service delivery [10].
Foundational data to advance the field in Korea is paramount. Understanding the status of PPC services and the perceptions of dedicated team members is essential. Therefore, this study aimed to investigate the current services and the perceptions of nurses and social workers who serve as core personnel within institutions operating PPC programs. Considering the challenges faced by Korea’s PPC services and exploring the difficulties and experiences of service providers, future directions for improving the quality of PPC and informing policy developments are proposed.
2. Purpose
The purpose of this study is to examine the current status of services provided through Korea’s PPC programs and explore the perceptions of core personnel. The specific objectives of this study are as follows:
1) To identify the services provided by institutions operating Korea’s PPC programs.
2) To clarify the roles of the core personnel within these institutions.
3) To explore the perceptions of the core personnel regarding PPC.
METHODS
1. Study design
This study is a mixed-methods secondary data analysis designed to investigate the current status of the services provided by Korea’s PPC program and the perceptions of its core personnel. The analysis was based on data collected in 2023 from a survey conducted among nurses and social workers serving as core personnel in PPC programs.
2. Participants
The original data were collected from core personnel at ten hospitals operating PPC pilot programs as of January 2023. Among them, 18 core personnel from nine hospitals, representing 90% of all PPC institutions in Korea, voluntarily responded to the survey. No participants were excluded from the secondary analysis.
3. Study tools
The original data were collected using a mixed-methods approach based on a concurrent embedded design combining quantitative and qualitative tools according to the nature of each research topic to investigate the current status of PPC services. The status of services provided and the roles of core personnel were assessed using structured, closed-ended questions developed based on previous studies [11,12] that examined the roles of hospice and the responsibilities of palliative care nurses and social workers. Before using the survey, face validity of the questions was verified by two PPC experts. Additionally, participants’ experiences and perceptions of service provision were captured using open-ended questions.
The survey completed by the participants included 21 items on service provision status, 6 items on the roles and perceptions of nurses, and 10 items on the roles and perceptions of social workers. The nurses responded to items concerning service provision, nursing roles, and perceptions, whereas the social workers answered items related to their own roles and perceptions.
In the present secondary analysis, data were extracted from both closed and open-ended questions. Closed-ended questions provided data on the types and content of services provided and roles by profession, while open-ended questions addressed the challenges in task performance, areas lacking evidence-based practice, perceptions of the meaning of PPC, and suggestions for future improvements. These data were analyzed to identify the current status of services, roles of core personnel, and their perceptions of PPC in Korea.
4. Data collection
The original study was conducted to understand work processes across PPC institutions and assess the current status of services. Data were collected from January to February 2023 through an online survey administered anonymously using Google Forms. This secondary analysis was conducted based on a portion of the original survey data, after obtaining approval from the Clinical Research Ethics Committee of C University (MIRB-Jeong20240110-002). Analysis was performed using anonymized data provided in the original study.
5. Data analysis
The status of PPC services provided by nine hospitals and the roles of core personnel, specifically nurses and social workers, were analyzed using IBM SPSS, version 25. Frequencies and percentages were calculated for each service activity undertaken by the participating institutions.
For the qualitative analysis, open-ended responses from secondary data were analyzed using a traditional qualitative content analysis approach [13]. Tasks that were reported as difficult to perform and areas identified as requiring evidence-based practice were analyzed separately by professional role (nurses vs. social workers). Meanwhile, perceptions regarding the future development of PPC and their meaning were analyzed collectively, without distinction between professions.
To ensure the rigor of the qualitative data analysis, the criteria (credibility, transferability, dependability, and confirmability) proposed by Lincoln and Guba [14] were considered. To ensure credibility, all responses to the survey questions were included in the analysis and the findings were verified separately by the current core personnel according to their professional roles. Transferability was enhanced by using the original participants’ descriptions verbatim to extract meaningful categories. Dependability and confirmability were assessed through repeated reviews of the data by two researchers over time independently, followed by peer review and refinement by a nursing professor with experience in qualitative research.
RESULTS
This study analyzed survey responses from 18 core personnel (9 nurses and 9 social workers) working in PPC institutions.
1. Current status of service provision at pediatric palliative care institutions in Korea
The status of services provided by the nine PPC institutions was assessed in terms of pain and symptom management, counseling and education, psychological therapy services, respite care, legacy-making activities, and bereavement support (Table 1).
Table 1.
Current Service Delivered by the Hospitals of Pediatric Palliative Care Project (N=9).
| Variables | Categories | n (%) | |
|---|---|---|---|
| Pain and symptom management | Availability | Available | 8 (88.9) |
| Not available | 1 (11.1) | ||
| Patient symptom management* | Pain | 7 (77.8) | |
| Anxiety and depression | 7 (77.8) | ||
| Fatigue | 6 (66.7) | ||
| Dyspnea | 5 (55.6) | ||
| Nausea and vomiting | 4 (44.4) | ||
| Family/parents education for patient’s pain and symptom management* | Parent education – strategies for soothing patient’s symptom | 7 (77.8) | |
| Parent education – strategies for patient’s activity encouragement | 6 (66.7) | ||
| Sibling education – strategies for soothing patient’s symptom | 2 (22.2) | ||
| Parents symptom management – consultation to other team for pain management* | 1 (11.1) | ||
| Counseling/education/other program services | Availability | Available | 9 (100) |
| Not available | 0 (0) | ||
| Type of education* | Patient counseling/education | 9 (100) | |
| Parents counseling/education | 9 (100) | ||
| Sibling counseling/education | 8 (88.9) | ||
| Patient counseling/education program* | Emotional management (Anger, guilty, embarrassment, etc.) | 9 (100) | |
| Goal setting – life sustaining treatment/reducing pain | 8 (88.9) | ||
| Developing advance directives | 7 (77.8) | ||
| Consulting to advance directives team | 6 (66.7) | ||
| Other counseling/education (i.e. psychiatrist consultation) | 1 (11.1) | ||
| Parents counseling/education* | Goal setting for patient – life sustaining treatment/reducing pain | 9 (100) | |
| Nurturing and parenting | 9 (100) | ||
| Emotional management (Denial, anguish, guilty, embarrassment, etc.) | 9 (100) | ||
| Consultation parents to other experts | 8 (88.9) | ||
| Communication on the child’s dying and death | 8 (88.9) | ||
| Consultation for financial support | 7 (77.8) | ||
| Other counseling/education (i.e. psychiatrist consultation) | 1 (11.1) | ||
| Programs for sibling* | Ceremony event (Children’s day, Christmas etc.) | 8 (88.9) | |
| Emotional management (Denial, anguish, guilty, embarrassment) | 7 (77.8) | ||
| Therapy programs (Art, music, paly therapies, etc.) | 7 (77.8) | ||
| Psychological therapy | Availability | Available | 9 (100) |
| Not available | 0 (0) | ||
| Subject* | Patient | 9 (100) | |
| Parents | 9 (100) | ||
| Siblings of the patient | 6 (66.7) | ||
| Art therapy | 9 (100) | ||
| Music therapy | 6 (66.7) | ||
| Play therapy | 6 (66.7) | ||
| Horticultural therapy | 2 (22.2) | ||
| Aroma therapy | 2 (22.2) | ||
| Bibliotherapy | 2 (22.2) | ||
| Movement therapy | 1 (11.1) | ||
| Psychological therapy | Contents* | Art therapy | 9 (100) |
| Music therapy | 6 (66.7) | ||
| Play therapy | 6 (66.7) | ||
| Horticultural therapy | 2 (22.2) | ||
| Aroma therapy | 2 (22.2) | ||
| Bibliotherapy | 2 (22.2) | ||
| Movement therapy | 1 (11.1) | ||
| Number of providing therapies | 2 | 3 (33.3) | |
| 3 | 4 (44.4) | ||
| 5 | 2 (22.2) | ||
| Therapy delivery modes* | Individual | 9 (100) | |
| Small group (2~5 persons per group) | 6 (66.7) | ||
| Middle group (6~10 persons per group) | 3 (33.3) | ||
| Big group (equal to or more than 11 persons) | 1 (11.1) | ||
| Therapy delivery route* | In-person | 8 (88.9) | |
| Online (Zoom, Metaverse, i-friend) | 7 (77.8) | ||
| Respite care | Availability | Available | 1 (11.1) |
| Not available | 8 (88.9) | ||
| Legacy making | Availability | Available | 6 (66.7) |
| Not available | 3 (33.3) | ||
| Bereavement care | Availability | Available | 9 (100) |
| Not available | 0 (0) | ||
| Contents* | Individual counseling | 8 (88.9) | |
| Family bereavement gathering | 3 (33.3) | ||
| Other services (regular phone call) | 2 (22.2) | ||
1) Pain and symptom management
Among the nine institutions, eight PPC teams (88.9%) reported providing pain and symptom management services. In the patient care domain, seven institutions (77.8%) provided pain and anxiety/depression management. Fatigue management was implemented in six institutions (66.7%), dyspnea management in five institutions (55.6%), and nausea and vomiting management in four institutions (44.4%). In addition to direct patient care, educational programs for caregivers and families regarding pain and symptom management were offered at seven institutions (77.8%) for parents and two institutions (22.2%) for siblings.
2) Counseling and education
All nine institutions provided counseling and educational services. Counseling and education for patients and caregivers were offered at all nine institutions (100%), while counseling and education for siblings were provided at eight institutions (88.9%). Regarding patient counseling and education, emotional management was provided at all nine institutions (100%), goal setting at eight institutions (88.9%), and counseling and education for advance directives regarding life-sustaining treatment at seven institutions (77.8%). For caregivers, emotional management, goal setting for the patient, and caregiving-related counseling and education were provided at all nine institutions (100%). Counseling and education on how to communicate about death with patients and other children were provided at eight institutions (88.9%), and linkages to financial support services were provided at seven institutions (77.8%). For siblings, counseling and education on emotional management were provided at seven institutions (77.8%).
3) Psychological therapy
All nine institutions provided psychological therapy services. Therapy was offered to patients and caregivers at all nine institutions (100%) and to siblings at six institutions (66.7%). The types of therapy included art therapy at nine institutions (100%), music therapy at six (66.7%), play therapy at six (66.7%), and horticultural therapy at two (22.2%). Regarding delivery methods, one-on-one sessions were provided at all nine institutions (100%), small group sessions (2~5 participants) at six institutions (66.7%), medium group sessions (6~10 participants) at three institutions (33.3%), and large group sessions (>11 participants) at one institution (11.1%). Regarding the mode of delivery, eight institutions (88.9%) provided therapy through face-to-face interactions, while seven institutions (77.8%) also utilized non-face-to-face (remote) methods.
4) Respite care
Only one (11.1%) of the nine PPC institutions reported providing respite care services.
5) Legacy making
Six (66.7%) institutions conducted legacy-making activities. Examples of legacy-making include framed handprints/footprints, music boxes, framed photographs, and customized goods using photos and videos, drawings, letters, memory books, and exhibitions.
6) Bereavement support
All the institutions offered bereavement support services. Individual counseling for bereaved families was provided at eight institutions (88.9%), while bereavement support groups were provided at three institutions (33.3%).
2. Roles of core personnel in pediatric palliative care
The roles of core personnel in PPC were identified through responses from nurses and social workers designated as core team members during the pilot program (Table 2, 3).
Table 2.
Roles of Nurses in the Pilot Project of Pediatric Palliative Care (N=9).
| Variables | Categories | n (%) |
|---|---|---|
| Advanced nursing practice | Imminent death care | 5 (55.6) |
| Bereavement care | 5 (55.6) | |
| Pain and symptom management | 3 (33.3) | |
| Patient assessment | 2 (22.2) | |
| Discharge planning | 1 (11.1) | |
| Education and counseling | Patient/family counseling | 6 (66.7) |
| Healthcare providers education | 5 (55.6) | |
| Patient education | 3 (33.3) | |
| Family education | 2 (22.2) | |
| Leadership/promoting changes | Budget management | 7 (77.8) |
| Administrative tasks | 5 (55.6) | |
| Supply management | 4 (44.4) | |
| Information management | 3 (33.3) | |
| Service management | 3 (33.3) | |
| Human resource management | 1 (11.1) | |
| Environment/facility management | 1 (11.1) | |
| Materials/guideline development | 1 (11.1) | |
| Research | Research activity | 2 (22.2) |
| Consultation/coordination | Coordinating (team meeting, out patient management, event) | 6 (66.7) |
| Referrals (to hospitals and specialists) | 4 (44.4) |
Table 3.
Roles of Social Workers in the Pilot Project of Pediatric Palliative Care (N=9).
| Variables | Categories | n (%) |
|---|---|---|
| Providing social services | Psychosocial, psychiatric problem solving | 9 (100) |
| Financial problem solving | 9 (100) | |
| Connecting community resources | 9 (100) | |
| Social integration and rehabilitation | 8 (88.9) | |
| Others (dying consultation) | 1 (11.1) | |
| Psychosocial, psychiatric problem solving contents | Assessment of psychosocial problems | 9 (100) |
| Individual counseling by care plan and patient need | 9 (100) | |
| Family counseling by care plan and family needs | 9 (100) | |
| Patient education (psychological reaction, role change) | 7 (77.8) | |
| Patient/family education (communication, sibling/children care) | 8 (88.9) | |
| Self-help group operation and support | 4 (44.4) | |
| Others (bereaved family support, psychiatry consultation) | 2 (22.2) | |
| Financial problem solving | Providing information on social security, law, and policy | 9 (100) |
| Support using external hospital donation/supporter | 8 (88.9) | |
| Support using in hospital donation/supporter | 7 (77.8) | |
| Connecting with foundations (i.e. Korea Pediatric Cancer Foundation) | 7 (77.8) | |
| Connecting community resources | Providing information on hometown community support system | 9 (100) |
| Connection with community resources (i.e. Make a Wish, Wig World) | 9 (100) | |
| Finding new resource and establishing information network in the community | 5 (55.6) | |
| Social integration and rehabilitation | Discharge consultation | 7 (77.8) |
| Evaluation of level of recovery and social adaptation | 6 (66.7) | |
| Social skills training | 4 (44.4) | |
| Self-managed therapy | 3 (33.3) | |
| Vocational rehabilitation counseling | 2 (22.2) | |
| Others (school reintegration and academic counseling) | 1 (11.1) |
1) Roles of nurses in PPC teams
PPC nurses played diverse roles throughout the patient’s hospitalization, discharge, end-of-life care, and bereavement periods, encompassing not only clinical nursing practice but also functioning as educators, team leaders, researchers, and consultants (Table 2). Among professional nursing practices, imminent death and bereavement care were provided at five out of nine institutions (55.6%), pain and symptom management at three institutions (33.3%), and patient assessment at two institutions (22.2%). Discharge planning and support were conducted at one institution (11.1%). Regarding educational and counseling practices, counseling for patients, families, and bereaved families was conducted at six institutions (66.7%). Education for healthcare professionals was provided at five institutions (55.6%), patient education at three institutions (33.3%), and family education at two institutions (22.2%).
Additionally, seven institutions (77.8%) reported that core nurses were responsible for managing government project budgets; administrative tasks were handled by five institutions (55.6%), supply management by four institutions (44.4%), and information and service management by three institutions (33.3%). Personnel management, facility management, and development of materials and guidelines were reported by one institution (11.1%). Furthermore, two institutions (22.2%) indicated that nurses were involved in research activities; six institutions (66.7%) reported that nurses coordinated meetings, outpatient services, and event schedules; and four institutions (44.4%) indicated that nurses performed referral roles to other specialties or experts.
2) Roles of social workers in PPC teams
PPC social workers handle a wide range of responsibilities, addressing psychological, social, and financial issues, as well as academic challenges related to rehabilitation and social reintegration (Table 3). All nine institutions (100%) investigated and assessed psychosocial issues, provided individual counseling for patients based on patient needs, and provided family counseling based on family needs. Caregiver/family education was provided at eight institutions (88.9%), patient education at seven institutions (77.8%), and the operation and support of self-help groups at four institutions (44.4%). Additionally, two institutions (22.2%) offered bereavement support and referrals to psychiatric services.
In the area of financial problem-solving, all participating institutions provided information on social security and legal systems. External support through connections with donors or sponsorship organizations was available at eight institutions (88.9%), hospital-based financial assistance using internal resources at seven institutions (77.8%), and linkages to external agencies at seven institutions (77.8%). Moreover, all nine institutions (100%) reported that social workers provided information on existing community resource systems and linked patients and families to community resources, whereas five institutions (55.6%) indicated that they also engaged in developing new community resources and establishing information networks.
In the area of rehabilitation and social reintegration, seven institutions (77.8%) reported providing discharge planning consultations, six (66.7%) conducted evaluations of recovery status and social adaptation, four (44.4%) offered social skills training, three (33.3%) supported additional or self-managed therapy, two (22.2%) provided vocational rehabilitation counseling, and one (11.1%) offered services related to school reintegration and academic counseling.
3. Perceptions of core personnel in pediatric palliative care programs
The perceptions of core personnel involved in PPC programs were categorized into four areas: tasks that were difficult to perform, areas requiring evidence-based guidelines, future directions for development, and the personal meaning of working in PPC (Table 4).
Table 4.
Perceptions of Core Personnel in Pediatric Palliative Care.
| Variables | Contents | |
|---|---|---|
| Nurses | Social workers | |
| Difficult tasks to perform and the attributes | • Due to limited resources (staffing, separate place for privacy) • Due to limited understanding of pediatric palliative care among other clinicians and institutions • Due to lack of education, protocol, and experience (administrative tasks, program planning, counseling) • Because the service is limited only to consultation type ➢ Maintaining continuity of care at the end-of-life ➢ Communication with patients and other clinicians ➢ Referring to patient’s hometown hospital ➢ Event planning |
• Due to limited time to develop rapport • Due to limited understanding and experiences of patients and families in specific situations such as splitting family, puberty, bereavement • Due to unclear job description ➢ Bereavement family support ➢ Psychological care ➢ Communication – counseling for decision-making ➢ Symptom management |
| Areas requiring evidence-based guidelines | ➢ Care for imminent death with various diagnoses ➢ Pain and symptom management ➢ Bereaved family care ➢ Psycho-emotional support ➢ Making decisions on life-sustaining treatment specific to children and their families |
➢ Matching patients to various treatment regimens ➢ Evaluation guide to screen the need of various therapies, and special intervention (i.e. suicide ideation screening) ➢ End-of-life care and bereaved family care ➢ Instrument to assess psychosocial status and problems specific to the pediatric patients and their families |
| Future directions for development | • Employment stability and securing working space • Provision of services with home palliative care • Quality improvement and expanding of service in national level • Improving public awareness of pediatric palliative care • Development of various therapies and programs • Encouraging research and making database • Development of practical guidelines |
|
| Meaning of pediatric palliative care | • For patients and families - Keep the rights of the child to be a child until their death - Let the families know their right to be happy, and make it happen - Being with them, make a meaning of life, so make parents live after the child’s death • For myself - Seamless self-reflection on my care and my life - Feel pride on my life and feel valuable and responsible on my care |
|
1) Tasks that were difficult to perform
The nurses who participated in the survey reported difficulties in providing end-of-life care, facilitating communication about life-sustaining treatment, coordinating care linked to the patient’s place of residence, and delivering counseling services. These challenges were attributed to a lack of resources (e.g., facilities, staffing, and protocols); limited experience in administrative tasks, program planning, and counseling; insufficient understanding of PPC among other healthcare professionals; the unpredictability of disease trajectories in pediatric patients; and the conceptual difficulty surrounding death.
In contrast, social workers cited challenges in establishing rapport with patients and caregivers due to variations in the timing of PPC intervention; the lack of communication training and experience in addressing sensitive situations (e.g., bereavement, family disruption, and adolescence); limited knowledge of symptom management; and unclear role boundaries. Importantly, these factors led to difficulties when conducting “counseling for decision-making” and “bereavement counseling.”
2) Areas requiring evidence-based guidelines
Nurses and social workers both emphasized the need for evidence-based guidelines regarding care for imminent death, bereavement care, pain and emotional support, and decision-making regarding life-sustaining treatment. Additionally, the social workers highlighted the need for assessment tools that reflect the unique characteristics of the pediatric patients in PPC and their families.
3) Future directions for development
The participants identified several priorities for advancing PPC, including securing essential resources, forming diverse networks, improving awareness among healthcare providers and the general public, and promoting active research to develop and disseminate intervention programs and guidelines. They also emphasized the importance of employment stability in maintaining service continuity.
The essential resources mentioned included improvements to service environments (e.g., dedicated pediatric beds, program rooms, and end-of-life care rooms) and the need to transition PPC from a pilot program to a sustained national project. To enhance operational efficiency, participants suggested establishing a nationwide network of PPC hub hospitals; facilitating connections among inpatient care, home-based services, and severe pediatric home healthcare programs; and collaborating with relevant organizations, such as the Korea Childhood Leukemia Foundation and other appropriate private agencies.
Participants also highlighted that, despite the increasing number of PPC institutions, both healthcare providers and the general public lack sufficient awareness of PPC. They stressed the need for active promotion and advocacy to foster a positive perception of PPC. Furthermore, the participants suggested data collection and evaluation, and active research to support the development of diverse intervention programs. They also highlighted the need for guidelines to facilitate nationwide expansion and standardization of PPC services. Finally, they emphasized the need for continuous personnel retention. Most personnel currently working in PPC programs are on temporary contracts. Even individuals with permanent positions are sometimes reassigned to different departments depending on institutional policies, which disrupt PPC service continuity.
4) Personal meaning of pediatric palliative care
Despite the many challenges, the participants reflected on the personal significance of working in PPC. Their responses revealed not only the meaning derived from providing palliative care to children and families, but also the profound impact that working in PPC has had on their lives.
Participants emphasized that PPC allows children to exercise their right to live as children and helps families pursue happiness. They found meaning in accompanying families through the process and empowering the surviving family members to continue living.
“I believe that the PPC is about gifting every living child with a shiny day. It is about showing them that they have the right to live each day to the fullest and letting them know that there are warm hands ready to hold them.” <P9>
“I think PPC is about giving meaning to the everyday lives of children, for whom hospitals and treatments have become their entire world, by accompanying them through what may be the hardest period of their lives.” <P16>
The participants also described how working in PPC encouraged personal growth, fostered self-reflection, and instilled feelings of pride, fulfillment, a sense of mission, and responsibility.
“Watching the children endure makes me reflect on how I spend my own days…. I am grateful for the opportunities to serve these families, and I constantly strive to improve myself so I can be ‘a better tool’.” <P15>
“Working in PPC has given me a strong sense of pride as a nurse who accompanies patients and families to the very end.” <P3>
However, participants also expressed that the heavy sense of responsibility sometimes placed a burden on their personal lives and that facing the death of children led to a fear of providing end-of-life care.
DISCUSSION
This study aimed to gain a detailed understanding of the current status of PPC services in Korea since 2018 and explore directions for future development by examining the services provided, the roles of core personnel (nurses and social workers), and their perceptions. Among the services provided by each institution, pain and symptom management were offered by the majority of the PPC pilot institutions. Although Korea’s PPC programs have primarily operated in a consultative model, with physical symptom management mainly handled by pediatric departments, PPC teams have contributed directly to pain and symptom management. Furthermore, they indirectly supported families by offering patient education on pain and symptom management.
Counseling and education for patients and families, as well as psychological therapy based on these services, are also commonly provided in PPC institutions. Most offer counseling, education, and psychological therapy, not only to patients but also to their parents. Each hospital provided two to five types of psychological therapy delivered through various methods. Notably, PPC institutions provide services to patients from a wide range of developmental stages (from newborns to adolescents) with diverse physical, psychological, emotional, and social needs. However, tailored services that address developmental tasks and the specific needs of patients from each developmental stage are lacking.
Only 77.8% of institutions provided counseling and 66.7% provided psychological therapy specifically for siblings. Internationally, supporting the family’s adaptation is considered a fundamental responsibility of PPC teams [15]. Children with seriously ill siblings are often aware of their parents’ emotional burden and may avoid expressing their distress, leading to internalized emotional struggles, decreased self-esteem, reduced resilience to stress, and an increased risk of mental health issues [15]. Therefore, counseling and interventions specifically targeting siblings, as well as patients and their parents, must be considered essential components of PPC. Future efforts in Korea should focus on establishing a systematic framework to ensure that sibling support services are routinely integrated into PPC delivery. Further research is needed to develop efficient service models.
Parenting support and respite care were provided by only one of the nine surveyed institutions. Parents caring for children requiring prolonged treatment for severe illnesses often experience sleep deprivation, hopelessness, and emotional exhaustion [16]. For such parents, respite care offers temporary relief by allowing them to step away from their caregiving responsibilities, alleviating social isolation, reducing depressive symptoms, and even preventing child abuse [16]. Despite the urgent need for supportive services for parents raising seriously ill children in Korea, the burden of caregiving and nursing care still falls overwhelmingly on primary caregivers. Given the nation’s rapidly declining birth rate (attributable to various factors including the challenges of child-rearing), reducing the caregiving burden for parents of children with chronic illnesses has become more important than ever. For parents of pediatric patients who require specialized care that is distinct from that for adult patients, respite care services are essential for providing the necessary support.
In Korea, parents of pediatric patients not only face the challenges of caring for their ill children but also experience difficulties in managing sibling relationships and maintaining marital stability, highlighting the need for comprehensive supportive services [17]. At the time of the survey, available respite care was limited to a single hospital room in one institution. With corporate support, an additional respite care center was established in 2023, resulting in two centers currently operating. Moreover, the launch of a pilot program for inpatient respite care for children with severe illnesses in 2023 has enabled services to be provided with government funding [18]. Under this program, patients are eligible for up to seven days of respite care per admission and up to 20 days annually. Medical expenses for insured services are fully waived for children under the age of two years, while those aged 2~5 years are responsible for 5% of the costs, and individuals aged 16 years and above are required to pay between 5% and 20%, depending on the disease category [18]. However, patients must cover 100% of the meal costs, selectively covered services, and anything not covered by national insurance. Furthermore, the program targets only families with pediatric patients who require intensive medical interventions (e.g., home mechanical ventilation, gastrostomy feeding, suctioning, and urinary catheterization). Hence, its applicability to pediatric cancer patients and their families is currently significantly limited [18].
In countries where PPC is more advanced, such as the United Kingdom and the United States, various respite care services are provided both in hospitals and at home, supported by government initiatives and private sector contributions, and are tailored to the child’s condition and the family’s circumstances [19]. These services have enabled parents to regain physical and psychological stability by providing them with time and space to rest, sleep, and care for the siblings of ill children. Parents also reported improved caregiving for ill children after rest periods, and siblings were able to receive the much needed attention from their parents [19]. However, no single universally preferred respite care model has emerged [19], suggesting that respite care programs should be customized to reflect the needs of patients and families and national and cultural contexts. Developing and implementing respite care programs tailored to the Korean context is urgently needed.
In this study, rehabilitation services were mentioned as part of the social workers’ roles, with social skills training provided at four institutions and vocational rehabilitation counseling offered at two. Pediatric palliative rehabilitation is essential for children who experience developmental delays or disabilities due to the nature of their illness and prolonged treatment, including symptom management, stabilization of functional decline, promotion of self-management and independence, and family support [20]. According to the Bowtie model [21], rehabilitation should also be incorporated into PPC services for cases that do not progress toward end-of-life care. Additionally, Korean pediatric cancer survivors have reported physical activity limitations [22]. Thus, developing and implementing pediatric palliative rehabilitation services within the PPC programs in Korea is paramount.
Among the core personnel in PPC at most institutions, nurses were the most involved in end-of-life and bereavement care and also took on coordination roles, such as delivering education for patients and families, facilitating care conferences, and coordinating referrals. Furthermore, nurses at two institutions engaged in research activities, and one nurse was involved in the development of clinical guidelines, contributing to professional expertise advancement. In addition to patient care duties, many nurses are responsible for administrative tasks related to the operation of PPC programs, including budget management, supply procurement, and facility maintenance. This situation have likely stemmed from the unstable nature of PPC operations under the long-standing pilot program model supported by the Ministry of Health and Welfare. A lack of formal recognition of PPC within hospital administrative structures and economic constraints have contributed to separate administrative staff not being hired.
For social workers, the core responsibilities across most PPC included counseling and education for patients and families to address psychosocial and mental health issues, as well as assistance with economic challenges and community resource linkages. Additionally, five institutions have attempted to expand support by seeking new community resources beyond those available within their organizations. Some institutions also provide counseling and guidance to address issues related to reintegration and rehabilitation after hospital discharge; however, only one institution offered services specifically for school reintegration and academic counseling.
Children in the PPC programs often undergo prolonged treatment and management of complications and long-term follow-up. They also face significant challenges when returning to school and adjusting to the school environment. The challenge is worsen by a lack of support systems and available resources [23]. To address these issues, previous studies have emphasized the need for closer collaboration between hospitals and schools, the implementation of mentoring programs, and broader efforts to improve societal awareness. Currently, depending on the institution, school reintegration may be handled by hospital schools, oncology-specific social workers, or survivorship support centers, which may explain the relatively limited involvement of PPC teams in the direct provision of these services [24]. However, as most existing school reintegration services primarily target children with cancer, there is a pressing need to develop and expand services that address the needs of non-cancer PPC populations.
Core personnel in the PPC reported challenges in providing care during the dying phase, planning for life-sustaining treatment, coordinating care transitions, and offering counseling. Traditionally, the core responsibilities of pediatric nurses do not include care during the dying phase and the development of life-sustaining treatment plans. As such, PPC nurses experience difficulties when performing these tasks. Moreover, as children perceive and understand death differently depending on their developmental stage, the participants recognized the pressing need for specialized education and protocols to deliver developmentally appropriate end-of-life care and counseling.
Insufficient understanding of palliative care among providers has been shown to negatively affect the quality of nursing care, with nurses experiencing greater grief, anger, and anxiety during the provision of end-of-life care [25], ultimately impacting both patients and providers.
A study by Moon et al. [26] on the perception of PPC in Korea identified the recruitment and retention of trained professionals as a common institutional challenge and emphasized the necessity for standardized education that can transform knowledge and attitudes, as well as intensive training in communication skills. Despite completing mandatory PPC training, the participants in this study continued to experience difficulties in their roles, indicating that the current training programs may be insufficient, and that ongoing education and support are urgently needed.
The shortage of personnel and space resulting from the pilot program structure posed an additional challenge for the provision of PPC services. Moreover, a lack of awareness and understanding of palliative care among healthcare providers outside the PPC teams created barriers to the initiation and maintenance of continuous PPC services. Social workers also reported that insufficient resources and staffing limited their ability to provide comprehensive care and sustained services to patients and their families after discharge. They emphasized that securing permanent positions for current contract-based staff is essential for the future development and stability of PPC.
Furthermore, delays in PPC team involvement caused by an inadequate understanding of palliative care among both healthcare providers and parents result in insufficient time to build rapport with patients and families, making it difficult to facilitate decision-making and provide bereavement support. In some cases, even among healthcare professionals, palliative care continues to be misperceived as abandonment of pediatric patients [26].
Even in countries with more established PPC systems, inconsistent support structures, workforce shortages, and a lack of recognition among healthcare colleagues, have been identified as barriers to effective PPC delivery [27]. Thus, to advance PPC in Korea, efforts must be made, not only in securing essential resources, but also in improving awareness and understanding of palliative care among healthcare professionals and the general public.
The areas identified as requiring evidence-based guidelines included care during the dying phase, bereavement support, pain and emotional support, decision-making regarding life-sustaining treatment, and the development of assessment tools tailored to the characteristics of pediatric patients. Following the 2007 IMPaCCT (International Meeting for Palliative Care in Children, Trento) project, Europe has made efforts to define the core standards of PPC, identifying various models of care across six key domains: (1) clinical, developmental, psychological, social, ethical, and spiritual needs; (2) end-of-life care; (3) care models and settings of care; (4) PPC in humanitarian emergencies; (5) care tools; and (6) education and training for healthcare providers [28]. Assessment tools that are applicable to PPC have also been proposed. Developing PPC guidelines in Korea based on international frameworks and adapting the guidelines to the cultural context and practical realities of Korean society are both urgently needed.
Through their PPC work, core personnel reflected on their own lives, reaffirmed the meaning of their work, and cultivated a sense of pride and mission. They expressed that their role in providing a “bright day” for children and standing alongside them during their most difficult moments imparted excitement and a deep sense of fulfillment. Similarly, previous studies have shown that parents of children receiving PPC can regain a sense of control over their circumstances and adapt to changes better, ultimately facilitating the provision of optimal care [29]. In Korea, PPC has been associated with improved emotional well-being in pediatric patients and restoration of social relationships [30]. These findings highlight the strong sense of vocation among core personnel who strive to make a positive difference to the lives of patients and their families through their PPC role. However, it is important to recognize that reliance solely on individual commitment is insufficient for the sustainable provision of services.
To ensure the long-term development and stability of PPC, the establishment of a systematic support infrastructure and appropriate policy measures is necessary.
This study has few limitations. First, although pediatricians were also involved as core personnel in some PPC pilot institutions, they were not included among the survey participants; therefore, their perceptions could not be explored in this study.
Second, owing to the absence of questions regarding the participants’ general characteristics in the original survey tool, analyses based on age, sex, work experience, and region could not be performed. Nevertheless, this study makes significant contributions by investigating the service delivery status and major roles of core personnel in nine out of ten PPC institutions operating in Korea as of 2024. Moreover, our findings offer valuable insights by articulating how PPC services are perceived by personnel in their own words and suggesting directions for improvement based on their experiences.
Overall, we aimed to enhance the understanding of PPC services among pediatric healthcare providers, patients requiring palliative care, and their families by examining the current status of PPC service delivery in Korea and the perceptions of core personnel, thereby providing foundational data to inform future policy developments for the advancement of PPC. The findings revealed that PPC personnel made considerable efforts to support the physical, psychological, emotional, social, and economic well-being of pediatric patients and their families, while also discovering the positive meaning and value of their work in PPC. However, the limitations associated with the pilot project framework, a lack of standardized protocols and educational programs, and insufficient resources pose significant barriers to the stable delivery of services. To achieve both qualitative and quantitative improvements in PPC, it is essential to actively promote research focused on evidence-based practices and guideline development, along with securing adequate financial, human, and institutional support.
SUPPLEMENTARY MATERIALS
Supplementary materials can be found via https://doi.org/10.14475/jhpc.2025.28.2.56.
ACKNOWLEDGEMENTS
The Authors thank Insil Choo, Yiji Moon, Gyuyeon Kil, Eun-ock Lee, Su-Hyun Lee, Kug-Hwa Hwang, Seonghee Kim, Hyejoung Cho, Hyeonjin Kim, Hosuk Choi, Hyemin Yoo, Ji-Hyeong Seo, Mi-Suk Jeong, and Hyunhee Shin for their contributions to this study.
Footnotes
CONFLICT OF INTEREST
No potential conflict of interest relevant to this article was reported.
AUTHOR’S CONTRIBUTIONS
Conception or design of the work: SC, NY, and SK. Data collection: SC, NY, SK. Data analysis and interpretation: ESK, MP, SBK, SK. Drafting the article: ESK, MP, SBK, SK. Critical revision of the article: ESK, SC, SK. Final approval of the version to be published: ESK, MP, SBK, SC, NY, SK.
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