Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review

Introduction

According to the World Health Organization (WHO) (1), pediatric palliative care (PPC) aims to improve the quality of life of the child and family as it involves preventing and alleviating physical, psychological and spiritual suffering of children with serious illness. In 2014, the World Health Assembly issued a global resolution for palliative care as part of universal health coverage to promote accessibility to palliative care as a “human right”. The resolution particularly highlighted the need to train healthcare professionals (HCP) and family members in order to reduce patient suffering (2).

The level of PPC integration within the healthcare systems varies by country. Arias-Casais and colleagues mapped PPC development in 51 European countries (3). high-income countries (HICs) hosted the vast majority of PPC services (92%), regulations, and professional development activities (3).

In practice, primary PPC is generally provided by the multidisciplinary team who regularly follow up with the patients. This level includes basic skills in addressing distressing symptoms (4). In more complex cases with refractory symptoms and challenging psychological and communication problems, specialized palliative care teams are consulted for their advanced trainings and experience in the field (4). These specialized PPC services are often available in HICs where palliative care is well established as a recognized specialty (3). Many reports have described the benefits of specialized PPC teams in terms of patient, family and system outcomes. Timely integration of specialized PPC services in the treatment of pediatric patients yielded better symptom management, quality of life, communication with the children and their families, and reduced care cost (5-9).

In low middle-income countries (LMICs), many barriers—such as lack of human and material resources, training and policies—challenge the development and provision of specialized PPC services (9,10). Despite the limited resources, several PPC programs in hospitals or hospices are available primarily in urban areas in these countries (11). Home-based services are commonly adopted to enhance accessibility while promoting the continuity of care and symptom management through coordination between HCP and the family (10,11). In addition, palliative care at home may fit the cultural context better than hospital settings. For example, in Lebanon, a recent policy brief stipulates the provision of palliative care at patients’ residence as a “viable option”, valuing the family ties (12). The scarcity of resources and cultural features in LMICs seem to intensify the family role, particularly in primary PPC delivery.

Despite the inclusive WHO definition, PPC and end-of-life care were used interchangeably in healthcare settings for the last two decades. As such PPC has been integrated late in the disease trajectory, typically in the terminal phases of the child’s illness (9). This discrepancy between PPC philosophy and practice resulted in negative PPC views, often cited as barriers to the timely integration of PPC.

The literature regarding perspectives on PPC extensively described the knowledge, attitudes, beliefs (KAB) and practices in palliative care of HCP, where a lack of knowledge was commonly cited (13-15). In this article, HCP refer to members belonging to medical or nursing or other disciplines trained to provide healthcare services. The lack of knowledge and negative attitudes among HCP constituted a barrier to early integration of PPC in cancer treatment (16-19). Interventions to educate HCP on PPC improved their knowledge, skills and attitudes (20-22). In parallel, these educational interventions were found to improve quality of care (23), timely referral to PPC services, advanced care planning (24) and spiritual care (22). While evidence exists on HCP’ perspectives and their influence on patient outcomes, few studies describe KAB toward palliative care among parents and communities.

Research addressing parents’ views towards PPC predominantly relies on HCP’ reports (16,25). Health care professionals reported that parents carry misconceptions regarding PPC as conflicting with cure; therefore, they associate PPC with “giving-up” (16,25). Consequently, HCP commonly cite parents’ perspectives as barriers to integrating PPC in the treatment of children with cancer (18). However, few recent studies conducted in HICs with parents of children with cancer challenged these findings by reporting positive attitudes toward PPC among the parents (26-28). Overall, the patients’ and parents’ perspectives on PPC are poorly described in HIC (29) and unexplored in LMICs.

Several reviews of the literature summarized palliative care perspectives among HCP (30-32), patients/caregivers (33) and the community (34). These reviews address palliative care as an overarching concept without focusing on the pediatric context per se. Moreover, palliative care is often discussed from the narrow angle of the end-of-life period. To the best of the authors’ knowledge, no reviews have synthesized the literature available globally on the views on PPC including HCP, ill children and their parents, and community samples. Recent studies report divergent views between HCP and patients/parents toward PPC (18,27,28). Synthesizing the literature on these views will help identify the literature gaps and provide direction to promote PPC on the research, policy, practice and education levels. The current narrative review aims to summarize studies that address KAB toward PPC among HCP, parents of pediatric patients and community. Specifically, the objectives of the review were to:

• Identify the knowledge (awareness, perceived level of knowledge and existing information) regarding PPC among HCP, parents and communities;
• Describe the attitudes and beliefs on barriers and facilitators toward PPC;
• Determine the factors that influence the KAB toward PPC.

The Theory of Planned Behavior (35) laid the theoretical foundations of this review. The Theory posits that three sets of beliefs drive the behavior. Behavioral beliefs pertain to attitudes. Normative beliefs examine social norms and expectations regarding the behavior. Control beliefs capture barriers and facilitators to perform the behavior. The three types of beliefs are affected by background factors which include knowledge about the behavior (35). From this theoretical lens, exploring KAB toward PPC provides a comprehensive understanding of elements contributing to PPC provision. We present the following article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-22-525/rc).

Methods

Using the narrative review methodology (36), four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete. Table 1 summarizes the search strategy designed with a medical librarian. For each database, Medical Subject Headings (MeSH) terms and keywords were combined (Appendix 1 includes the search strategy in Medline).

The results of all four databases were exported to Endnote X9 bibliography software for storing and removing duplicates. Two independent reviewers (R Saad and SD Sailian) screened the articles for title and abstract, resolved disagreements, then conducted full text reviews and manually extracted data from eligible articles, Inclusion criteria were: qualitative and quantitative studies including observational studies (cohort studies, case-control studies), controlled and uncontrolled pre-/post-studies; retrospective and cross-sectional studies. For a comprehensive search, study conditions incorporated the four disease categories of life-limiting and life-threatening conditions requiring PPC (37). These categories include: life-threatening conditions where curative treatment exist but may fail (e.g., cancer); conditions entailing intensive and at times prolonged treatment but where death is inevitable (e.g., cystic fibrosis), progressive conditions where exclusively palliative care is offered (e.g., Baten’s disease) and non-progressive disease with severe and irreversible disabilities (e.g., cerebral palsy) (37). Likewise, no limit was set on the date of publication.

The exclusion criteria were non-English references, animal studies, conference abstracts or proceedings, case studies, correspondence/letters, books and book sections or chapters. Studies specifically addressing perinatal/neonatal palliative care or palliative care in neonatal intensive care were also excluded due to the specific considerations in this context (38). Moreover, studies pertaining to specific aspects to end-of-life period (such as advanced care planning, bereavement, end-of-life care) were excluded. The WHO definition of PPC (1) covers the entire disease trajectory, not only end-of-life. However, the two terms are used interchangeably. Excluding end-of-life studies is intended to uncover the researchers’ and participants’ broader understanding of PPC rather than narrowing it to end-of-life care. Figure 1 illustrates the PRISMA chart of the review process. The data extracted from reviewed articles included the study title, country, purpose, study design, data collection method, sample and key findings (see Table 2: Summary of reviewed studies conducted among HCP and Table 3: Summary of reviewed studies conducted among parents and communities).

Figure 1 The PRISMA flow diagram illustrates the selection process of studies included in the review along with the reason for exclusion when applicable.

Findings and discussion

After data extraction, the articles were narrowed down from 23,734 to 60 articles. The majority of the articles (n=49, 82%) were derived from HIC, with almost half of them from USA. The references from LMICs were scattered across the remaining continents. One study was conducted in many countries across continents (14) and another one in countries across Eurasia (69). Figure 2 presents the frequency of studies by country.

Figure 2 The number of studies by country is indicated. The green color represents the highest number with 26 articles per country. Purple indicates 4 articles per country. Pink represents 3 articles per country. Dark blue represents 2 articles per country. Yellow represents 1 article per country.

Over the years, the perspectives of HCP on PPC were extensively explored compared to parents and communities. Several studies combined parents’ and patients’ views (27,28,82,85). The last 4 years witnessed a surge in the frequency of studies addressing KAB toward PPC. Figure 3 illustrates the frequency over the years and by study population.

Figure 3 The distributions of study population across time highlights an increasing trend in the last 5 years. Healthcare professionals are the most studied group. HCP, healthcare professionals.

The literature on KAB toward PPC among pediatric HCP represents various hospital and home settings (13,15,17,43,47,55,71,85). Twenty-two studies (36.6%) were conducted in pediatric oncology care settings. A handful of articles addressed PPC in the general population (79,81,83,84). Tables 2,3 summarize the studies retrieved on KAB toward PPC.

KAB toward PPC among HCP

Studies from developed countries revealed that despite the adequate knowledge of PPC principles among pediatric professionals, there is confusion of PPC with hospice care or end-of-life care (16,39,51,62,66). Moreover, the level of PPC knowledge and attitudes are inconsistent among different care domains in PPC. Feudtner and colleagues (87) found that pediatric nurses reported being most competent in pain management and least competent in communication with patients and families.

Adequate PPC knowledge may be present even when PPC services are less developed; however, PPC training remains a crucial need. For example, a study conducted in Lebanon examined the knowledge, attitudes and practices in PPC among 96 pediatric nurses and 27 pediatricians across 15 hospitals (13). While only 20.2% of the pediatric nurses and 3.7% of the pediatricians reported having received continuing education in palliative care, both groups demonstrated high knowledge scores. Yet, both groups had average scores on attitude and practices. As noted by the authors, the findings on attitudes and practices among pediatric professionals call for more training to ensure better PPC practices (13).

When comparing pediatric specialties, discrepancies in the reasons for incorporating palliative care were revealed. In a large study conducted in 18 institutions across the United States, physicians in pediatric critical care were more likely to integrate palliative care for psychosocial support, while pediatric oncologists integrated it for symptom management (50). The same study revealed that female clinicians and those who received palliative care education were more likely to incorporate palliative care, did so earlier and for reasons other than end-of-life planning compared to their counterparts (50). Another multicenter survey described attitudes toward PPC consultations among 183 pediatric cardiologists (55). The majority of the sample (85%) agreed that PPC involvement was helpful and 61% reported that it occurred “too late”. However, the most commonly cited barrier to PPC consultations was the providers’ concern of the parents’ views of PPC as giving-up on their child (55). These dichotomous views not only call for enhancing HCP’ knowledge regarding PPC, but also for investigating whether parents would report similar concerns.

Recent publications among pediatric oncology professionals also emphasize the need to improve KAB toward PPC (15,17,71). Authors alluded to the frequent interactions with the PPC team and proposed workplace training offered by this team as a substitute to formal training (15). Despite distinguishing PPC from end-of-life care, pediatric oncologists in Switzerland described the operational challenges in the timely integration of PPC. Participants attributed these challenges to the strong stigma surrounding the term among families, the reluctance of HCP to initiate PPC early in the disease trajectory, and the cultural and religious backgrounds of patients and families (17).

Many quantitative studies highlighted the positive association of knowledge and attitude toward PPC (20,48,50,54,64,67). Other qualitative findings emphasized the need for PPC education and formal support for HCP as means to correct misconceptions and enhance PPC integration (71). In addition to formal training, fostering experience and interactions with palliative care services potentially promotes positive HCP’ attitudes, and aligns their practices with the PPC philosophy that is broader than end-of-life care.

KAB toward PPC among parents of pediatric patients

The perspectives of pediatric patients and their parents regarding PPC is still an underexplored area where only four identified studies addressed this issue (27,28,78,82). Early researchers reported that parents were more likely to use the services when named “supportive care” rather than when named “palliative care”. However, after receiving a description of each program, parents reported similar likelihood to use either services and expressed more receptivity to palliative care compared to baseline (78). As such, educating parents PPC may promote their perceptions of the services.

Over time, the negative parental views have been cited as a barrier to introducing PPC services (18). Authors reporting such a barrier often collected data from HCP rather than from parents (15,25,46,55). Conversely, recent findings suggest that more than half of oncology professionals from the United States (n=1,005) disagreed with the concern that early PPC would increase parental burden. Such change reflects the emerging literature in support of PPC and call for additional research among parents (26).

Emerging studies combining patients and parents also challenge the earlier findings and suggest endorsement of PPC by parents. Lafond and colleagues (27) argued that parents may not be as resistant to PPC as perceived by professionals, and that this barrier to PPC is modifiable. More evidence from 129 dyads of children with cancer and their parents highlight the considerable symptom suffering within the first month of diagnosis (28). In addition to the need for PPC the authors reported a remarkable acceptance of early PPC integration among both children and parents. Rather than being considered barriers to PPC, children with cancer and their parents “are ready for an integrated model of care” (28). Cultural bias, lack of in-depth and qualitative reporting of existing knowledge among participants, and the use of non-validated instruments are considerable limitations of the study.

Despite these encouraging parents’ perspectives, authors are still reporting an inaccurate understanding of PPC within life-threatening and life-limiting conditions (85,86). Children with life-limiting and life-threatening conditions and their parents conceptualized PPC as relevant to a separate period of child’s disease, rather than a comprehensive approach to care (85). Parents of children with Duchenne Dystrophy expressed ambiguity about the term “palliative care” and its association with “death” (86).

Many authors explored the parents’ views on barriers and facilitators to PPC integration (82,88,89). In the context of cystic fibrosis, participants reported that the association of PPC with end-of-life and the patient/family denial and reluctance to discuss palliative care challenged its integration (82).

In fact, earlier studies addressing parents’ perspectives on PPC barriers and facilitators focus on the end-of-life phase and on specific aspects of care, such as decision-making, communication, symptom management and advanced care planning (88,89). Because of the focus on end-of-life, these studies shed light on parents’ perspectives of facilitators and barriers to PPC, however, from its narrower angle of end-of-life.

Recently, Walter and colleagues (90) developed a conceptual framework for barriers and facilitators to “regoaling”, particularly regarding PPC integration in the management of children with serious illness. For parents, facilitators to regoaling to a palliative care approach included: certainty about prognosis, awareness of the child’s suffering, support and good communication with the clinical team, knowledge of palliative care or hospice, establishing new attainable hopes, coping skills for negative emotions, and congruence with personal “good parent” beliefs (90). Barriers to regoaling consisted of: lack of understanding of the medical situation; lack of knowledge about palliative care or hospice; sense of failure as a parent; uncertainty about the prognosis; unrealistic belief in the probability of cure; overwhelming negative emotions; desire to shield others from bad news; and lack of trust, support, and communication with clinical team (90).

Other researchers identified cultural contexts that may challenge PPC integration (18,91,92). Asian groups believe that speaking about the possibility of death can induce it (91). In Lebanon, evoking death remains a taboo (92). Native American families engage members from the extended family in making treatment decisions, such decisions are taken collectively rather than by the caregiver alone (91). Within these cultural characteristics, parents who equate PPC with end-of-life care might link PPC integration to the child’s death. On the other hand, spiritual and religious engagement may facilitate PPC integration (80,93). Religious and spiritual practices helped parents accept and understand the child’s condition, make treatment decisions (80), and experience emotional relief (80,93).

In summary, the literature on parents’ KAB toward PPC highlights the possibility of attenuating parents’ stigma about PPC through enhancing their knowledge about the care. Recent evidence on PPC misconceptions incite for timely actions taking into consideration the multifaceted barriers and facilitators at the parents’ level.

KAB toward PPC in community samples

Several studies addressing the perspective of the community regarding palliative care examined the phenomenon as an overarching concept for both adult and pediatric populations (34,94,95). These studies shed light on the understanding of palliative care from a non-healthcare viewpoint. Moreover, it is possible that study participants include parents of children in need of palliative care. Researchers investigated public awareness regarding palliative care and highlighted parents’ representation in their samples (84,95). Parents of children with serious chronic conditions (n=131) and participants from the community (n=106) were comparable with regards to palliative care knowledge (61.5% vs. 60.0%, P=0.76) (84).

In countries with developed palliative care services, community surveys revealed familiarity with the term “palliative care”; however, this awareness did not preclude inaccurate information (79,83,96,97). A recent scoping review examined thirteen articles on knowledge, awareness and perceptions of the community from various countries including Canada, the United States, New Zealand, Ireland, Scotland, the United Kingdom, Korea, Sweden, and Italy (34). The authors reported a consistent poor awareness and knowledge about palliative care over the years. Across the articles, the proportion of participants having no knowledge about palliative care ranged from 32% to 71% of the samples. The studies also highlighted common participants’ misperceptions of linking palliative care with end-of-life stages and with cancer. Factors associated with increased knowledge included gender, age, prior experience with palliative care and higher level of education (34).

Likewise, in a recent study in Australia, ninety percent of participants from the community (n=421) reported having heard of palliative care. Yet, only 12% had accurate knowledge about such care as evidenced by the complete correct answers on a previously validated and psychometrically tested scale. Overall, study participants endorsed palliative care. Older age, caregiving role, knowing someone who had received palliative care and more accurate knowledge predicted more favorable attitudes (95).

In less developed countries, these findings are echoed, with even lower percentages of both familiarity with and accurate knowledge of palliative care (94,98,99). Different contributing factors were also revealed. In India, urban habitants had higher level of knowledge than those living in rural areas (99). In Saudi Arabia, employment status correlated with better palliative care knowledge and more awareness (94).

Although to a limited extent, findings from community studies informed about similarities with parents’ KAB toward PPC. Therefore, it is worth considering these studies in pediatric contexts to enhance a comprehensive examination of KAB toward PPC.

Limitations

Despite the rigorous process, this review is limited by restricting articles to English language, which may have resulted in missing different findings in papers published in other languages. Another limitation is the exclusion of studies solely addressing the end-of-life phases, which to a certain extent, excluded a major disease phase where PPC is implemented. To account for this limitation, studies encompassing all disease stages were retained. Yet, the confusion between PPC and end-of-life care was still evident in the reviewed studies addressing the perspectives of various stakeholders on PPC. These findings underscore a pressing need for prompt interventions among professionals and for timely awareness among non-professionals to alleviate children’s suffering. Finally, different results may have been overlooked due to the exclusion of conference abstracts and proceedings.

Summary

The literature highlights the lack of knowledge and negative attitudes toward palliative care that is common among HCP, patients and their parents, and community samples. Across studies, it is obvious that improving knowledge and attitude is needed despite the scattered findings of endorsement of PPC integration. Studies suggest that several factors are associated with knowledge and attitudes, including participants’ demographic characteristics and patients’ clinical information. These factors are worth considering in studies investigating knowledge and attitudes regardless of the perspective. Evidence on parents’ views toward PPC integration are dispersed in the literature. A comprehensive instrument compiling parents’ perspective on facilitators and barriers to PPC remains a need.

At the conceptual level, many authors focused on the end-of-life dimension of PPC. It is probable that such focus in studying KAB reinforced the link of palliative care with death. Thus, conducting palliative care research without emphasis on terminal phases would redirect the participants’ understandings of the correct and broad definition that encompasses the entire disease trajectory. At the operational level, the lack of tools measuring KAB in PPC requires careful adaptation of existing measures.

As for the context, most of the studies focus on HCP’ perspectives. A detailed exploration of parents’ views of PPC is lacking. Despite being partners in decision-making and care, parents of pediatric patients are rarely the focus of research on KAB toward PPC. Few recent studies from the United States suggest that parents favor PPC when properly educated about it. Such studies lack in less developed settings, which hinders the possibility of comparing findings or distinguishing potential cultural variations. Considering the limited availability of PPC in LMICs, and the crucial involvement of parents in the care, it is pertinent to investigate parents’ perspectives in these settings. Determining these views will form the basis for designing strategies not only to improve their KAB but also to enhance the entire PPC delivery.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-22-525/rc

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-22-525/coif). HASH serves as an unpaid editorial board member of Annals of Palliative Medicine from February 2022 to January 2024. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. World Health Organization. Palliative Care [Internet]. The World Health Organization; 2020, [2020 Aug 5; cited 2022 Jan 25]. Available online: https://www.who.int/news-room/fact-sheets/detail/palliative-care
2. World Health Organization. Strengthening of palliative care as a component of integrated treatment throughout the life course. J Pain Palliat Care Pharmacother 2014;28:130-4. [Crossref] [PubMed]
3. Arias-Casais N, Garralda E, Pons JJ, et al. Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It. J Pain Symptom Manage 2020;60:746-53. [Crossref] [PubMed]
4. Snaman J, McCarthy S, Wiener L, et al. Pediatric Palliative Care in Oncology. J Clin Oncol 2020;38:954-62. [Crossref] [PubMed]
5. Chong PH, De Castro Molina JA, Teo K, et al. Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program. BMC Palliat Care 2018;17:11. [Crossref] [PubMed]
6. Friedrichsdorf SJ, Postier A, Dreyfus J, et al. Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 2015;18:143-50. [Crossref] [PubMed]
7. Kassam A, Skiadaresis J, Alexander S, et al. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 2015;62:1409-13. [Crossref] [PubMed]
8. Kaye EC, Weaver MS, DeWitt LH, et al. The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review. J Pain Symptom Manage 2021;61:1060-1079.e2. [Crossref] [PubMed]
9. Salins N, Hughes S, Preston N. Palliative Care in Paediatric Oncology: an Update. Curr Oncol Rep 2022;24:175-86. [Crossref] [PubMed]
10. Downing J, Boucher S, Daniels A, et al. Paediatric Palliative Care in Resource-Poor Countries. Children (Basel) 2018;5:27. [Crossref] [PubMed]
11. Caruso Brown AE, Howard SC, Baker JN, et al. Reported availability and gaps of pediatric palliative care in low- and middle-income countries: a systematic review of published data. J Palliat Med 2014;17:1369-83. [Crossref] [PubMed]
12. Soueidan S, Osman H, El-Jardali F. K2P Policy Brief: Integrating Palliative Care into the Health System in Lebanon [Internet]. Knowledge to policy (K2P) center Beirut, Lebanon; July 2018 [cited 2022 January 4]. Available online: https://www.aub.edu.lb/k2p/Documents/K2P%20Policy%20Brief-%20Palliative%20Care-August%207%202018.pdf
13. Abu-Saad Huijer H, Abboud S, Dimassi H. Practices in paediatric palliative care in Lebanon. Eur J Pall Care 2008;15:190-2.
14. Balkin EM, Thompson D, Colson KE, et al. Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context. Pediatr Blood Cancer 2016;63:872-9. [Crossref] [PubMed]
15. Spruit JL, Bell CJ, Toly VB, et al. Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers. J Pediatr Oncol Nurs 2018;35:247-56. [Crossref] [PubMed]
16. Thompson LA, Knapp C, Madden V, et al. Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics 2009;123:e777-82. [Crossref] [PubMed]
17. De Clercq E, Rost M, Rakic M, et al. The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective. BMC Palliat Care 2019;18:55. [Crossref] [PubMed]
18. Haines ER, Frost AC, Kane HL, et al. Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature. Cancer 2018;124:2278-88. [Crossref] [PubMed]
19. Verberne LM, Kars MC, Schepers SA, et al. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care 2018;17:23. [Crossref] [PubMed]
20. Ghoshal A, Talawadekar P, Palleri A, et al. Impact of Educational Training in Improving Skills, Practice, Attitude, and Knowledge of Healthcare Workers in Pediatric Palliative Care: Children’s Palliative Care Project in the Indian State of Maharashtra. Indian J Palliat Care 2018;24:411-25. [Crossref] [PubMed]
21. Kato Y, Akiyama M, Itoh F, et al. A study investigating the need and impact of pediatric palliative care education on undergraduate medical students in Japan. J Palliat Med 2011;14:560-2. [Crossref] [PubMed]
22. Petersen CL, Callahan MF, McCarthy DO, et al. An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence. J Pediatr Oncol Nurs 2017;34:130-9. [Crossref] [PubMed]
23. Petursdottir AB, Haraldsdottir E, Svavarsdottir EK. The impact of implementing an educational intervention to enhance a family-oriented approach in specialised palliative home care: A quasi-experimental study. Scand J Caring Sci 2019;33:342-50. [Crossref] [PubMed]
24. Widger K, Wolfe J, Friedrichsdorf S, et al. National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care. J Palliat Med 2018;21:1249-56. [Crossref] [PubMed]
25. Dalberg T, Jacob-Files E, Carney PA, et al. Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care. Pediatr Blood Cancer 2013;60:1875-81. [Crossref] [PubMed]
26. Dalberg T, McNinch NL, Friebert S. Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers. Pediatr Blood Cancer 2018;65:e26996. [Crossref] [PubMed]
27. Lafond DA, Kelly KP, Hinds PS, et al. Establishing Feasibility of Early Palliative Care Consultation in Pediatric Hematopoietic Stem Cell Transplantation. J Pediatr Oncol Nurs 2015;32:265-77. [Crossref] [PubMed]
28. Levine DR, Mandrell BN, Sykes A, et al. Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology. JAMA Oncol 2017;3:1214-20. [Crossref] [PubMed]
29. Rosenberg AR, Bona K, Coker T, et al. Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference. J Pain Symptom Manage 2019;57:846-855.e2. [Crossref] [PubMed]
30. Achora S, Labrague LJ. An Integrative Review on Knowledge and Attitudes of Nurses Toward Palliative Care: Implications for Practice. J Hosp Palliat Nurs 2019;21:29-37. [Crossref] [PubMed]
31. Bharmal A, Morgan T, Kuhn I, et al. Palliative and end-of-life care and junior doctors': a systematic review and narrative synthesis. BMJ Support Palliat Care 2019. [Epub ahead of print]. pii: bmjspcare-2019-001954. doi: 10.1136/bmjspcare-2019-001954.10.1136/bmjspcare-2019-001954
32. Jeong SH, Lee SJ, Cho SM, et al. Systematic Review on the Influencing Factors of Nurses' and Nursing Students' Attitudes Toward Hospice and Palliative Care. J Hosp Palliat Nurs 2020;22:130-6. [Crossref] [PubMed]
33. Dittborn M, Turrillas P, Maddocks M, et al. Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review. Palliat Med 2021;35:1434-51. [Crossref] [PubMed]
34. Patel P, Lyons L. Examining the Knowledge, Awareness, and Perceptions of Palliative Care in the General Public Over Time: A Scoping Literature Review. Am J Hosp Palliat Care 2020;37:481-7. [Crossref] [PubMed]
35. Ajzen I. The theory of planned behavior. Organ Behav Hum Decis Process 1991;50:179-211. [Crossref]
36. Snyder H. Literature Review as a Research Methodology: An Overview and Guidelines. J Bus Res 2019;104:333-9. [Crossref]
37. Together for Short Lives. A Guide to Children’s Palliative Care Fourth Edition [Internet]. Together for Short Lives, Bristol; 2018 [cited 2021 December 27]. Available online: https://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-5.pdf
38. Boyden JY, Curley MAQ, Deatrick JA, et al. Factors Associated With the Use of U.S. Community-Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review. J Pain Symptom Manage 2018;55:117-31. [Crossref] [PubMed]
39. Spencer L, Battye L. Palliative care in the community for children with cancer in South East England. Eur J Oncol Nurs 2001;5:190-7. [Crossref] [PubMed]
40. St-Laurent-Gagnon T, Carnevale FA, Duval M. Pediatric palliative care: a qualitative study of physicians' perspectives in a tertiary care university hospital. J Palliat Care 2008;24:26-30. [Crossref] [PubMed]
41. Michelson KN, Ryan AD, Jovanovic B, et al. Pediatric residents' and fellows' perspectives on palliative care education. J Palliat Med 2009;12:451-7. [Crossref] [PubMed]
42. Knapp C, Thompson L, Madden V, et al. Paediatricians’ perceptions on referrals to paediatric palliative care. Palliat Med 2009;23:418-24. [Crossref] [PubMed]
43. Jünger S, Vedder AE, Milde S, et al. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives. BMC Palliat Care 2010;9:11. [Crossref] [PubMed]
44. Carter BS, Swan R. Pediatric palliative care instruction for residents: an introduction to IPPC. Am J Hosp Palliat Care 2012;29:375-8. [Crossref] [PubMed]
45. Bradford NK, Bensink M, Irving H, et al. Paediatric palliative care services in Queensland: an exploration of the barriers, gaps and plans for service development. Neonatal, Paediatric & Child Health Nursing 2012;15:2-7.
46. Knapp C, Thompson L. Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California. Palliat Med 2012;26:268-74. [Crossref] [PubMed]
47. Kremeike K, Eulitz N, Jünger S, et al. Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians. BMC Res Notes 2012;5:498. [Crossref] [PubMed]
48. Haut CM, Michael M, Moloney-Harmon P. Implementing a program to improve pediatric and pediatric icu nurses’ knowledge of and attitudes toward palliative care. J Hosp Palliat Nurs 2012;14:71-9. [Crossref]
49. Bergstraesser E, Inglin S, Abbruzzese R, et al. The needs of professionals in the palliative care of children and adolescents. Eur J Pediatr 2013;172:111-8. [Crossref] [PubMed]
50. Atwood MA, Hoffmann RG, Yan K, et al. Attitudes about palliative care: a comparison of pediatric critical care and oncology providers. Am J Hosp Palliat Care 2014;31:665-71. [Crossref] [PubMed]
51. Twamley K, Craig F, Kelly P, et al. Underlying barriers to referral to paediatric palliative care services: knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom. J Child Health Care 2014;18:19-30. [Crossref] [PubMed]
52. Chong LE, Khalid F. Paediatric palliative care in Malaysia: Survey of knowledge base and barriers to referral. Progr Palliat Care 2014;22:195-200. [Crossref]
53. Wentlandt K, Krzyzanowska MK, Swami N, et al. Referral practices of pediatric oncologists to specialized palliative care. Support Care Cancer 2014;22:2315-22. [Crossref] [PubMed]
54. Wu KL, Friderici J, Goff SL. The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care. J Palliat Med 2014;17:80-4. [Crossref] [PubMed]
55. Balkin EM, Kirkpatrick JN, Kaufman B, et al. Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study. Pediatr Cardiol 2017;38:1324-31. [Crossref] [PubMed]
56. Guimarães TM, Silva LFD, Santo FHE, et al. Palliative care in paediatric oncology in nursing education. Rev Gaucha Enferm 2017;38:e65409. [PubMed]
57. Suurmond J, Lieveld A, van de Wetering M, et al. Towards culturally competent paediatric oncology care. A qualitative study from the perspective of care providers. Eur J Cancer Care (Engl) 2017; [Crossref] [PubMed]
58. Balkin EM, Sleeper LA, Kirkpatrick JN, et al. Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians. J Palliat Med 2018;21:773-9. [Crossref] [PubMed]
59. Friedel M, Brichard B, Fonteyne C, et al. Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014. BMC Palliat Care 2018;17:77. [Crossref] [PubMed]
60. Moody K, McHugh M, Baker R, et al. Providing Pediatric Palliative Care Education Using Problem-Based Learning. J Palliat Med 2018;21:22-7. [Crossref] [PubMed]
61. Detsyk OZ, Zolotarova ZM, Stovban IV, et al. Awareness of pediatric palliative care among health care workers. Wiad Lek 2018;71:574-8. [PubMed]
62. Nyirő J, Zörgő S, Enikő F, et al. The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology. Eur J Pediatr 2018;177:1173-9. [Crossref] [PubMed]
63. Szymczak JE, Schall T, Hill DL, et al. Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor. J Pain Symptom Manage 2018;55:1260-8. [Crossref] [PubMed]
64. Zuniga-Villanueva G. Ramirez-GarciaLuna JL, Weingarten K. Factors Associated With Knowledge and Comfort Providing Palliative Care: A Survey of Pediatricians in Mexico. J Palliat Care 2019;34:132-8. [Crossref] [PubMed]
65. Benini F, Cauzzo C, Congedi S, et al. Training in pediatric palliative care in Italy: still much to do. Ann Ist Super Sanita 2019;55:240-5. [PubMed]
66. Thumfart J, Bethe D, Wagner S, et al. A survey demonstrates limited palliative care structures in paediatric nephrology from the perspective of a multidisciplinary healthcare team. Acta Paediatr 2019;108:1350-6. [Crossref] [PubMed]
67. Weaver MS, Pawliuk C, Wichman C. Use of an Electronic Journal Club to Increase Access to and Acceptance of Palliative Care Literature across General Pediatricians and Pediatric Subspecialties. J Palliat Med 2019;22:50-3. [Crossref] [PubMed]
68. Cuviello A, Raisanen JC, Donohue PK, et al. Defining the Boundaries of Palliative Care in Pediatric Oncology. J Pain Symptom Manage 2020;59:1033-1042.e1. [Crossref] [PubMed]
69. Ehrlich BS, Movsisyan N, Batmunkh T, et al. A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines. Cancer 2020;126:3777-87. Erratum in: Cancer 2021 Dec 1;127(23):4516. [Crossref] [PubMed]
70. Akdeniz Kudubes A, Bektas M. The effect of web-based pediatric palliative care education on the palliative care knowledge level and practices of nursing students. Perspect Psychiatr Care 2020;56:533-40. [PubMed]
71. Saad R, Kurdahi LB, Yazbick-Dumit N, et al. Paediatric oncology providers' perspectives on early integration of paediatric palliative care. Int J Palliat Nurs 2020;26:100-9. [Crossref] [PubMed]
72. Yu J, Song IG, Kim CH, et al. Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea. J Palliat Med 2020;23:346-52. [Crossref] [PubMed]
73. Falk EE, Allen KE, DeGroote NP, et al. Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic. JCO Oncol Pract 2021;17:e714-29. [Crossref] [PubMed]
74. Morell E, Thompson J, Rajagopal S, et al. Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study. J Palliat Care 2021;36:17-21. [Crossref] [PubMed]
75. Margaretha SEPM, Mulatsih S, Effendy C, et al. Qualitative analysis of family-centered care for children with cancer in palliative wards: An evaluation of needs and barriers in resource-limited settings. Open Access Maced J Med Sci 2021;9:1-7. [Crossref]
76. Parisio KN, Levy CD, Lewis AM, et al. Attitudes and Practices of Pediatric Oncologists Regarding Palliative Care Consultation for Pediatric Oncology Patients. J Pediatr Hematol Oncol 2022;44:230-6. [Crossref] [PubMed]
77. Vemuri S, Butler AE, Brown K, et al. Palliative care for children with complex cardiac conditions: survey results. Arch Dis Child 2022;107:282-7. [Crossref] [PubMed]
78. Morstad Boldt A, Yusuf F, Himelstein BP. Perceptions of the term palliative care. J Palliat Med 2006;9:1128-36. [Crossref] [PubMed]
79. Benini F, Fabris M, Pace DS, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Ann Ist Super Sanita 2011;47:253-9. [PubMed]
80. Hexem KR, Mollen CJ, Carroll K, et al. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med 2011;14:39-44. [Crossref] [PubMed]
81. Visagie BB, Pillay J. Needs and challenges of lay community health workers in a palliative care environment for orphans and vulnerable children. Health SA Gesondheid 2017;22:333-41. [Crossref]
82. Dellon EP, Helms SW, Hailey CE, et al. Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care. Pediatr Pulmonol 2018;53:1218-24. [Crossref] [PubMed]
83. Westerlund C, Tishelman C, Benkel I, et al. Public awareness of palliative care in Sweden. Scand J Public Health 2018;46:478-87. [Crossref] [PubMed]
84. Johnston EE, Currie ER, Chen Y, et al. Palliative Care Knowledge and Characteristics in Caregivers of Chronically Ill Children. J Hosp Palliat Nurs 2020;22:456-64. [Crossref] [PubMed]
85. Mitchell S, Slowther AM, Coad J, et al. Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation. Arch Dis Child 2021;106:570-6. [Crossref] [PubMed]
86. Sadasivan A, Warrier MG, Polavarapu K, et al. Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents’ Understanding. Indian J Palliat Care 2021;27:146-51. [Crossref] [PubMed]
87. Feudtner C, Santucci G, Feinstein JA, et al. Hopeful thinking and level of comfort regarding providing pediatric palliative care: a survey of hospital nurses. Pediatrics 2007;119:e186-92. [Crossref] [PubMed]
88. Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics 2012;129:e975-82. [Crossref] [PubMed]
89. Greenfield K, Holley S, Schoth DE, et al. A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life. Palliat Med 2020;34:689-707. [Crossref] [PubMed]
90. Walter JK, Hill DL, DiDomenico C, et al. A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review. BMC Palliat Care 2019;18:116. [Crossref] [PubMed]
91. Wiener L, McConnell DG, Latella L, et al. Cultural and religious considerations in pediatric palliative care. Palliat Support Care 2013;11:47-67. [Crossref] [PubMed]
92. Mouhawej MC, Maalouf-Haddad N, Tohmé A. Cultural challenges in implementing palliative services in Lebanon. Palliat Med Hosp Care Open J 2017; SE(1): S15-S18.
93. Nicholas DB, Barrera M, Granek L, et al. Parental spirituality in life-threatening pediatric cancer. J Psychosoc Oncol 2017;35:323-34. [Crossref] [PubMed]
94. Alkhudairi HM. General public awareness, knowledge, and beliefs toward palliative care in a Saudi population. J Nat Sci Med 2019;2:48-53. [Crossref]
95. Collins A, McLachlan SA, Philip J. Community knowledge of and attitudes to palliative care: A descriptive study. Palliat Med 2020;34:245-52. [Crossref] [PubMed]
96. Claxton-Oldfield S, Claxton-Oldfield J, Rishchynski G. Understanding of the term "palliative care": a Canadian survey. Am J Hosp Palliat Care 2004;21:105-10. [Crossref] [PubMed]
97. Taber JM, Ellis EM, Reblin M, et al. Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One 2019;14:e0219074. [Crossref] [PubMed]
98. Gopal KS, Archana PS. Awareness, knowledge and attitude about palliative care, in general, population, and healthcare professionals in tertiary care hospital. International Journal of Scientific Study 2016;3:31-5.
99. Joseph N. S J, Kotian S. A comparative study to assess the awareness of palliative care between urban and rural areas of ernakulum district, kerala, India. Indian J Palliat Care 2009;15:122-6. [Crossref] [PubMed]