Introduction
Each year, more than 21 million children experience serious health-related suffering, as a result of chronic or life-limiting health conditions (Connor et al. Reference Connor, Downing and Marston2017). To relieve this suffering, palliative care, which focuses on addressing pain and other physical symptoms as well as social, emotional, and spiritual suffering, is needed. The 2018 Lancet Commission on Palliative Care and Pain Relief identified palliative care as “an essential component of any response to humanitarian emergencies and crises,” yet for children in humanitarian settings, palliative care is rarely available, with provision neglected due to a focus on saving lives (Knaul et al. Reference Knaul, Farmer and Krakauer2018; Krakauer et al. Reference Krakauer, Daubman and Aloudat2019). Several palliative care programs in humanitarian settings have been described; however, there are very few programs which specifically focus on the unique needs of children and their families (Doherty and Khan Reference Doherty and Khan2018; Pinheiro and Jaff Reference Pinheiro and Jaff2018; Yantzi et al. Reference Yantzi, Hadiuzzaman and Sen Gupta2023).
Training humanitarian health workers to provide palliative care has been identified as an important step to improve access to palliative care in these settings (Hannon et al. Reference Hannon, Zimmermann and Knaul2016; Sasaki et al. Reference Sasaki, Bouesseau and Marston2017). One previous study described a virtual learning program (Project ECHO), which trained healthcare professionals (HCP) working in a humanitarian response in Bangladesh on general principles of palliative care, but was not specific to pediatrics (Doherty et al. Reference Doherty, Lynch-Godrei and Azad2022). The knowledge, attitudes, and beliefs of HCP play a vital role in determining the success of palliative care program implementation and delivery. Without training and support, HCP may be hesitant to initiate palliative care, as they struggle to identify which children will benefit and may fear that families will not accept palliative care (Davies et al. Reference Davies, Sehring and Partridge2008).
Several scales have been developed to understand and quantify the palliative care knowledge, attitudes, barriers, and learning needs of HCP, but these have been primarily designed for high income countries, and none are tailored to the experiences of humanitarian settings (Lazenby et al. Reference Lazenby, Ercolano and Schulman-Green2012; Loera et al. Reference Loera, Molinengo and Miniotti2023; Ross M et al. Reference M Ross, McDonald and McGuinness1996). There are no published studies describing pediatric palliative care knowledge, attitudes, or learning needs in humanitarian settings. Studying the specific learning needs and preferences of humanitarian HCP is important because prior training experiences and healthcare delivery and practices may vary substantially from those in other settings.
The aim of this study is to explore humanitarian HCP’s attitudes and perceived barriers to implementing palliative care for children in humanitarian responses and to identify their educational needs and preferred methods of learning. This information will guide educators in developing educational activities which can support humanitarian HCP to deliver palliative care for children in these settings.
Methods
Qualitative description methodology was selected to produce a rich description of participants’ experiences and attitudes toward palliative care and palliative care training while remaining close to the data (Bradshaw et al. Reference Bradshaw, Atkinson and Doody2017; Sandelowski Reference Sandelowski2000). The study consisted of qualitative interviews with humanitarian HCP, including front-line clinical staff as well as those with roles in healthcare management. Both locally recruited and internationally mobile HCP were included.
Sampling and recruitment
Potential participants were recruited from humanitarian health organizations and relevant palliative care organizations and networks by email. The study utilized the established collaborations and networks of study team members (MD, KR, RY) with humanitarian and palliative care organizations to share the study information with potential participants. Additional recruitment occurred via online media including digital announcements with relevant professional organizations, social media chat groups, and word of mouth. HCP were eligible for study participation if they had worked in a humanitarian setting for at least 2 months. Participants were recruited between January and December 2023.
Sampling was purposeful, to ensure a diverse population, with targeted recruitment of participants with specific demographic characteristics to ensure maximum variation sampling, incorporating a wide range of perspectives (Given Reference Given2008; Maxwell Reference Maxwell2012; Sandelowski Reference Sandelowski2000). The subgroups included in the sampling strategy are shown in Table 1. As data collection and analysis proceeded, the study team identified that HCP with palliative care training and experience were able to provide more detailed and nuanced views about palliative care learning needs, and as sampling progressed, specifically targeted these individuals.
Table 1. Demographic variables used to guide maximum variation sampling
Sample size
Ten interviews were conducted and included in the study, which balanced feasibility and the need to address the research questions. Data saturation was not considered an appropriate endpoint since this concept is contested and participants’ experiences could theoretically have infinite variations (Sandelowski Reference Sandelowski2000). However, during iterative data analysis, repetition of themes emerged in later interviews.
Data collection
Demographic data were collected at the beginning of each interview. Semi-structured interviews were conducted using an interview guide, including open-ended and probing questions, to promote topic exploration (Supplement 1) (Ritchie and Lewis Reference Ritchie and Lewis2003).
The interview guide was developed based on a literature review by the research team, with expertise in children palliative care and care in humanitarian emergencies. The guide was piloted with 1 humanitarian HCP, with subsequent modifications to improve clarity and ensure that questions and probes reflected experiences in humanitarian settings.
All interviews were conducted online via video-conferencing (Zoom) to promote accessibility and reduce cost and other burdens. Interviews lasted 30–45 minutes, were recorded and automatically transcribed by Zoom and then reviewed manually for accuracy. Interviewers also took notes and kept reflective journals, which were included as data sources. Interviews were conducted by 2 study team members (SR, MD), with the pilot and first 3 interviews conducted jointly to ensure standardization of the interview process and approach. Both are pediatric palliative care physicians who have more than 5 years’ experience in teaching and delivering palliative care for children in humanitarian settings. SR trained in India and has practiced palliative care in South Asia and the Middle East. MD is a Canadian-trained physician, who has practiced palliative care in South Asia and Canada. The interviewers were able to bring their understanding of palliative care in humanitarian settings and education of HCP to support the development of the research questions and data analysis (Aburn et al. Reference Aburn, Gott and Hoare2021; Fleming Reference Fleming2018).
Data analysis
Data was analyzed using thematic analysis following the approach described by Braun and Clark using NVivo-12 (QSR International Inc., Cambridge, MA) (2021). The preliminary coding scheme was prepared by the team and refined as analysis proceeded. Transcripts were coded by 1 author (ZB) and verified independently by 2 coauthors (MD, SR) to ensure coding consistency and accuracy. Codes were subsequently amalgamated into subthemes and overarching themes. Findings were reviewed with additional research team members (KR, RY), to establish consensus.
The researchers incorporated reflection of their personal and professional experiences while conducting data collection and analysis, noting that several research team members have been leaders and faculty for online and in-person teaching on palliative care for HCP in humanitarian settings.
Ethical considerations
All participants provided written consent to participate and for audio recording. The study was approved by the Children’s Hospital of Eastern Ontario Research Ethics Board (CHEO 22/90X).
Results
Participant demographics
Ten HCP participated in interviews. Six participants were international staff, while four were locally recruited. Professional roles included nurse (4), physician (4), clinical psychologist (1), and project coordinator (1). The duration of professional experience ranged between 2.5 and 33 years. Most participants (n = 8, 80%) had previous palliative care training experience, which was expected given the purposeful participant recruitment strategy. Table 2 summarizes additional characteristics of the interview participants.
Table 2. Interview participant demographics (n = 10)
Interview findings
Two key themes and 5five subthemes emerged from the qualitative data analysis, which are summarized in Table 3.
Table 3. Study themes and subthemes
Perceptions of children’s palliative care
Key components of palliative care for children
Participants defined palliative care as holistic care for patients with life-threatening illnesses that focuses on quality of life, relieving suffering, and symptom management, noting “palliative care is an approach in which we take holistic care of the needs of the patient: physical, spiritual, social, emotional. Palliative care should be initiated at the first contact of a patient with a health suffering condition or terminal illness.”(P4)
Participants described a wide variety of illnesses where children would benefit from palliative care, including cancer, advanced organ disease/failure, neurological conditions, genetic disorders, neonatal conditions (e.g. prematurity, congenital malformations), and traumatic injuries. Participants identified the different illness trajectories which children may have, noting that some children would require palliative care for a short duration while others for months or years. As a [physician working in x country] described, “we have neurological patients- cerebral palsy with severe malnutrition- but those would be not immediate acute palliative care patients, but more mid- to long-term patients…I would like to explain that palliative care is not just end of life care. It can be a huge grey zone and you can do curative treatment while you are starting palliative care, they are not opposite.”(P9)
Perceived barriers to providing palliative care for children
Participants described patient-related and health system barriers to palliative care implementation. Among patients and family members, there were challenges in addressing collusion and the misconception that palliative care is synonymous with end-of-life care or represents a failure. “So palliative care does have a low acceptance. It is not that people do not want to understand. They understand it conceptually, but I think in terms of principle, they believe that palliative care is for someone who is in the dying stage, when in fact, it starts as soon as the diagnosis happens.”(P7)
Health system barriers included insufficient bed space in health facilities, a limited number of HCP, and limited access to essential palliative care medications and medical supplies, particularly opioids. Participants also noted that despite patients wanting to provide home-based palliative care, this was often not possible. “We could not provide them with oxygen, morphine, or other things that would decrease the pain or suffering…So our community management of palliative care patients was almost zero and that was very sad.” (P9)
The instability of emergencies also prevented planning, as 1 participant noted, “[in my setting] every project is an emergency project. There is no existing project. Everything is an emergency.” (P5)
Palliative care knowledge and attitudes among HCPs also limited implementation. As 1 HPC described, “palliative care does have a very low acceptance because [healthcare workers] see it as a sign of failure. And there’s a high attention on the curative aspect”(P7). Despite being personally motivated, participants noted that other staff members may not be interested in participating in training programs. “I’ve learned from my experience that many people think this, and many people think that, and that let’s talk about these myths. I would put a lot of effort into explaining [that palliative care is] not something we do when there is nothing else to do. We should erase this phrase from our vocabulary, and how it is also as important as the rest of curative treatment.”(P9)
Participants noted that standardized palliative care guidelines would support HCP, as would additional training to overcome discomfort when disclosing bad news, reviewing goals of care, and discussing end-of-life with patients and family members.
“Earlier, I used to think that it’s only in [my] context. But when I joined this program, I understood, it’s kind of everywhere that communication is not really part of the education of the physician. Specifically, talking about the end-of-life care or the topic of dying, because dying is like the most certain thing of human experience, but this is the least discussed topic, I think, in the medical field all across the world. But I think if I give a very contextual space to it, I think more capacity building of all the incoming doctors and nurses would really be helpful to let them understand that medicine is just one part of the treatment per se. But communication, you know, building up a rapport with them, it’s an important part of it, as well. And I think that is the thing that palliative care really teaches. It’s the communication aspect of it.” (P7)
Palliative care training
Learning preferences: Topics, training structure, and barriers
Participants identified key training topics including: the philosophy of palliative care, overcoming palliative care stigma, communication skills, pain and symptom management, providing emotional support, and self-care.
Preferred learning modalities included virtual learning as well as hands-on training. Online training modalities were preferable for theoretical knowledge as this allowed learners to access knowledge at their convenience. Following online training, in-person training with palliative care experts would be helpful.
Suggested strategies to increase online engagement included incorporating more “breakout rooms” (virtual small group discussions) when using internet-based videoconferencing. Participants felt that case presentations were helpful for anchoring learning in practice experiences, “I would say that, having more case vignettes, would really be helpful, so that they could actually see how different contexts could happen in a palliative care setup. And what are the challenges that could pop up.”(P7)
Participants felt that including interdisciplinary teams in training would enhance holistic care. Barriers to participating in palliative care training included time, language, internet and computer access, and direct and indirect costs of training.
Previous training experiences
Participants described their previous training experiences, which included online training (specifically Project ECHO). Several respondents reported previous participation in Project ECHO training courses, which included regular weekly online sessions covering core palliative care topics. Project ECHO has been described elsewhere (Doherty et al. Reference Doherty, Lynch-Godrei and Azad2022, Reference Doherty, Rayala and Evans2021).
Other training experiences included formal training through asynchronous online palliative care courses, attending conferences, reading research articles and guidelines, and training during health professional school (e.g. medical or nursing college). Less formal experiences included providing palliative care for their own family members, group chat discussions on social media, and receiving guidance from palliative care experts.
Motivation
Participants were highly motivated to participate in training, describing a personal interest in palliative care and a desire to improve the care they provide to patients. They appreciated receiving a course certificate and advice from a trusted mentor as motivators. “I wanted to learn more and hear more from others. The sharing that we used to go into [virtual small group discussion rooms] and we share. I wanted to learn more about what others are doing better. And how can I do also.”(P4)
Feeling connected to an online learning community and hearing how other HCP practiced palliative care around the world sustained their interest in online courses. “It was participative. It was short, like one hour, and it was really crisp and clear. I think that is the reason that I really liked it. It gave us some practical tools and knowledge that we can use, and that we could use in our day-to-day workspace. That is what made me continue.” (P7)
Discussion
This study describes the perceptions and learning needs of a diverse group of humanitarian HCP regarding children’s palliative care. The study identifies key topics for pediatric palliative care training including communication skills, which allow providers to compassionately share prognostic information with families and discuss goals of care. A key finding from the study is the preference for virtual training on theoretical topics, and hands-on training for palliative care skills, particularly communication.
The study describes important barriers to pediatric palliative care acceptance which can be addressed through education, including the belief that palliative care represents failure and that palliative care is synonymous with end-of-life care. Health system barriers to training and implementing palliative care include inadequate physical space within health facilities, a limited number of trained staff, and the availability of opioids and other medicines essential for children’s palliative care.
The 2020 Global Atlas of Palliative Care highlighted that over 97% of children in need of palliative care live in low- and middle-income countries (Connor et al. Reference Connor, Morris and Jaramillo2020). Despite this, access to pediatric palliative care in these settings remains extremely limited; a systematic review of global pediatric palliative care provision identified no services in 66% of countries (Knapp et al. Reference Knapp, Woodworth and Wright2011). A recent study identified a lack of HCP training on pediatric palliative care as a significant barrier to improving palliative care availability in humanitarian settings (Sasaki et al. Reference Sasaki, Bouesseau and Marston2017). This is the first study to specifically examine the educational needs of humanitarian HCP providing pediatric palliative care. The study identified key topics for training including identifying which children would benefit from palliative care, the philosophy of palliative care, addressing palliative care stigma, pain and symptom management, providing emotional support, and self-care. These topics are similar to palliative care learning competencies, which have been described by a wide range of professional bodies and organizations for HCP outside of humanitarian settings (Jeba et al. Reference Jeba, Atreya and Chakraborty2018; Paal et al. Reference Paal, Brandstötter and Lorenzl2019). Communication skills are particularly important learning needs, especially when caring for children and interacting with their families. These findings are similar to palliative care educational needs assessments for interdisciplinary HCPs globally (Damani et al. Reference Damani, Ghoshal and Dighe2018; Kaur et al. Reference Kaur, Sharma and Chaturvedi2021; Selman et al. Reference Selman, Brighton and Robinson2017). A key finding from this study is that learning needs of HCP in humanitarian settings are similar to those in other settings.
The significance of cultural perspectives in pediatric palliative care is an important consideration when designing palliative care training, as end-of-life care is inherently influenced by cultural norms and beliefs (Givler et al. Reference Givler, Bhatt and Maani-Fogelman2024). Addressing communication barriers, the dynamics of shared decision-making and informed consent, the influential presence of family members, and the varying roles of patients and family members across different cultural contexts are key training considerations to ensure that humanitarian HCP can support palliative care with cultural competence. Training for HCP can help them to navigate the complexities arising from the tension between universal principles of medical care during a humanitarian crisis, of relieving suffering, while also addressing the culturally specific practices in end-of-life care. Future studies are needed to explore that relationship between palliative care principles and how these are translated into local healthcare practices (Samuels and Lemos Dekker Reference Samuels and Lemos Dekker2023).
In many countries, palliative care for adults and children is not yet included in HCP training (e.g. nursing and medical undergraduate and postgraduate training). Ensuring that palliative care is included in these curricula will ensure that all HCP receive basic training in palliative care and will improve knowledge and skills for HCP in humanitarian settings. Including palliative care in predeparture training for international mobile staff of humanitarian health actors, will prepare these HCP to relieve serious health-related suffering in the field. Dedicated teaching on children’s palliative care would be beneficial to review unique aspects of pediatrics, including family-centered care delivery and children’s differing involvement in the decision-making process (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). Future studies should focus on developing the core competencies for children’s palliative care knowledge, attitudes, and skills for humanitarian HCP, so that these can be integrated into future training programs both at a national level and within humanitarian health organizations.
Previous studies have identified barriers to palliative care integration in humanitarian settings, particularly the “lifesaving ethos of humanitarian organizations” and this study’s findings support this (Hunt et al. Reference Hunt, Nouvet and Chénier2020). Study participants identified that a lack of acceptance of palliative care was related to “high attention on the curative aspect [of treatment]” (P7), which was coupled with a belief among HCP that palliative care was a sign of failure. Interestingly, participants believed that overcoming this barrier was possible, suggesting discussions to emphasize that palliative care is not only for situations when there is “nothing else to do” and is “as important as the rest of curative treatment” (P9) would be effective. Future studies should look to determine effective educational interventions and other actions to address negative attitudes toward palliative care.
Training format: Online vs in-person
Online or virtual training has been proposed as an innovative method to increase access to specialist teaching, mentorship, and support for HCP in rural and remote areas (Arora et al. Reference Arora, Smith and Snead2017). Virtual learning can be a particularly important tool to increase access to palliative care training in settings where there are very few palliative care experts, and to facilitate rapid training following natural disasters and during conflict where providing in-person palliative care training is challenging (Arora et al. Reference Arora, Smith and Snead2017; Doherty et al. Reference Doherty, Rayala and Evans2021). One previous study described a virtual learning and mentorship program, following the Project ECHO model, in the Rohingya Refugee Crisis in Bangladesh, with 10 weekly online learning sessions (Doherty et al. Reference Doherty, Lynch-Godrei and Azad2022). This program identified improvements in palliative care knowledge, skills, and attitudes among participants, but was not designed specifically for pediatrics or to assess patient- or community health-level outcomes. In the present study, a combination of virtual and in-person training was important for learning, with participants identifying their preference for virtual training for theoretical content, and hands-on training for practical skills. These findings are similar to those reported in the study in Bangladesh, where almost half of the participants noted that more clinical exposure or hands-on training was needed to lead to practice change, and similar findings have been reported in several other ECHO programs in South Asia (Doherty et al. Reference Doherty, Lynch-Godrei and Azad2022; Lynch-Godrei et al. Reference Lynch-Godrei, Sapkota and Rowe2024).
Ensuring the relevance of training to participants’ local healthcare context has been noted to be a particularly important consideration in virtual training, since faculty may not be working in the same health system or with the same level of resources and thus their treatment recommendations may not be available or feasible (Frehywot et al. Reference Frehywot, Vovides and Talib2013; Yennurajalingam et al. Reference Yennurajalingam, Amos and Weru2019). Our study identified that clinical case vignettes would help learners “see how different contexts could happen in a palliative care setup”(P7) and the challenges which could occur. Further studies should explore learning program designs which optimize learning and practice change for participants, while balancing the resources required for such training.
Study strengths and weaknesses
This study provides a detailed description of the perceptions and educational needs of humanitarian HCP practicing pediatric palliative care, incorporating the perspectives of a wide range of countries and experiences. Thus, the study findings are expected to be relevant and applicable to educators designing palliative care training in a wide range of locations where humanitarian crises occur, globally. The limited number of study participants could be seen as a limitation of this study, and further interviews may lead to a wider variety of views and insights.
Conclusion
This study describes important aspects of the learning needs of humanitarian HCP caring for children with life-limiting health conditions, identifying the importance of specific learning topics related to palliative care, including the philosophy of palliative care, empathic communication, pain and symptom management, and addressing myths and barriers to palliative care. Preferred learning modalities varied for different types of learning, with virtual learning being preferred for theoretical or knowledge-based topics, while hands-on training through role play, clinical vignettes, and clinical experiences was preferred for developing palliative care skills. Addressing barriers to pediatric palliative care including misconceptions among patients and families as well as resource constraints within health systems are important considerations for training.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S147895152400186X.
Data availability statement
Available upon request.
Author contributions
As noted in the author section.
Funding
No funding was obtained for this study.
Competing interests
All authors have no conflicts to declare.
Ethical approval
This research was conducted in accordance with the World Medical Association Declaration of Helsinki. Ethical approval for the study was received from the research ethics board of the Children’s Hospital of Eastern Ontario (Approval Number: 22/90X; Date: July 26, 2022).
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