Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review

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Background
In recent decades, advances in medicine have shifted the approach to managing life-limiting or long-term illnesses from survivorship to specialized care [1].Consequently, there has been a signifcant increase in the demand for pediatric palliative care (PPC) due to a growing number of pediatric patients in need [2,3].PPC programs adopt a multidisciplinary approach to address the comprehensive needs of pediatric patients with long-term illnesses, aiming to enhance their quality of life (QOL) [4,5].Achieving this goal requires the early integration of PPC, encompassing physical, psychological, social, and spiritual well-being, not only for the children but also for their families [6,7].
While the focus of medicine has evolved to maximize health-related quality of life (HRQOL) [1], it is important to recognize that the well-being of these children and their families is often under considerable stress [3], afecting various aspects of their lives.To capture the multifaceted nature of QOL, Schalock et al. [8] proposed a multidimensional model including categories such as personal development, emotional well-being, and interpersonal relationships.PPC programs should address each of these areas to comprehensively impact QOL.Children and young individuals facing illness express the need for productivity, challenges, and educational achievements, underlining the essential role of family support and connections [9].Education plays a vital role in stimulating cognitive and psychosocial development, promoting normality, and reducing emotional stress [10].Recognizing this, it is critical to consider PPC programs that incorporate a broad spectrum of care, including the pivotal role of educational inclusion and the supportive environment schools can provide.Unfortunately, PPC programs are often not considered until the later stages of the disease [7], hindering early educational interventions [11].
Children with life-limiting illnesses prioritize education among their diverse needs [12].Inclusive education, a critical element in PPC, must encompass all people at risk of social exclusion [13] and requires coordination between hospitals, families, and communities, particularly schools [14,15].Failure to create inclusive environments can result in educational defcits [16], emphasizing the need for accessible education at all levels [17][18][19][20][21] to improve the QOL of children requiring palliative care [20].To provide a comprehensive PPC response, it is imperative to involve not only the children but also the school, healthcare professionals, and the family system [21][22][23][24].In summary, comprehensive education is a fundamental component of PPCs [2], and further research on palliative care for children with complex medical needs is warranted [25].
Following the World Health Organization guidelines [26], efective PPC programs adopt a multidisciplinary approach involving children and their families from the time of diagnosis.Tis approach encompasses various aspects of the child's development.Evaluating existing PPC programs is crucial to understand their principles and their impact on improving the QOL of children facing severe illnesses, especially in how they leverage educational institutions as community resources.
Te primary objective of this systematic review is to identify the key characteristics of successful PPC programs that demonstrably enhance the QOL of pediatric palliative patients, with a specifc focus on programs incorporating education.Tis review seeks to answer the research question: What are the key characteristics of successful PPC programs that demonstrably enhance the QOL of pediatric palliative patients and under what circumstances are these characteristics more efective?Our approach aligns with realist principles, aiming to provide explanatory insights into what works, for whom, and under what circumstances [27].As of our knowledge, the cutof date is September 2023, but no comprehensive review of this nature has been conducted.Te outcomes of this review will empower healthcare professionals in the care of pediatric palliative patients, helping them navigate the complex landscape of PPC programs.Ultimately, this will contribute to the development of practical and widely applicable principles for end-of-life care services, thus improving the well-being of these vulnerable individuals.

Methodology
In pursuit of our research objectives, a systematic review was chosen as the preferred method, given its rigorous evaluation of pertinent literature [28].Te systematic review adheres to the guidelines outlined in the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) 2020 statement, along with recommendations and quality procedures established by experts [29,30].

Search Strategy. Our initial exploration took place in the
Web of Science (WOS) database, utilizing an initial search equation that was refned based on the relevance of the outcomes.Tis preliminary query yielded 1337 results.We then conducted a co-occurrence analysis via an association matrix, employing the visualization of similarities (VOS) technique with the VOSViewer tool.For this analysis, keywords were selected based on the criterion of a frequency of fve or more occurrences, with clusters containing a minimum of ffteen items or keywords.VOS allowed us to categorize keywords into thematic groups [31,32].
Te visualization map generated by the correlation network analysis identifed 129 items grouped into four clusters.Although this initial search produced items closely related to our research objectives, some adjustments were needed, as keywords related to school or education had lower frequencies and occurrences.Table 1 presents the most signifcant items from each of the four clusters.
In light of these fndings, we refned the search equation within WOS to focus more specifcally on inclusive education.A second search conducted on the same day produced 821 publications, which underwent co-occurrence analysis (see Table 2).Te co-occurrence analysis of the second search yielded a single cluster comprising sixteen items (see Figure 1).Tis accurate visualization map of the connection networks indicates a harmonious alignment between the search equation and the desired outcomes.Te size of the circles signifes the signifcance of each item and its number of associations, as validated by the strength of association analysis.Table 3 details the frequency of links, the strength of these connections, and the occurrence count for each item.

Co-Authorship Network Analysis.
In addition to our keyword-based analysis, we conducted an assessment of coauthorship networks, a recognized indicator of publication productivity and scientifc impact [33].Results from this analysis (refer to Figure 2) were obtained using VOS analysis, with a selection criterion requiring at least two joint publications.Tis analysis involved a total of 286 authors, averaging 2.18 authors per publication.Among these authors, only 18 met the criterion of having collaborated on at least two publications.Te visualization map revealed collaborative connections between authors, illustrating both homophily and heterophily within the feld of social sciences [34,35].Cluster 1 authors represented various universities and hospitals in North America, while Cluster 2 authors hailed from diferent institutions in Germany, demonstrating monophyletic and heterophyletic collaboration.Several authors had publications involving diferent author groups without repetition.Notably, based on the results of the WOS search, the authors with the most publications on this topic were Wolfe, J. (25); Dussel, V. (8), Feudtner, C. (8); and Rosenberg, A. R. (7).

Extension of the Search.
Following the validation of our search string, we extended our exploration to other platforms of interest (see searches 3 to 9 in Table 2).In Scopus, due to platform confguration, the search was limited to titles, abstracts, and keywords.To accommodate the rigidity of the search equation and increase the number of results on platforms 4, 5, 6, 7, and 8, we simplifed it to focus on the three primary elements identifed in the VOS analysis from search no. 1.

Selection Criteria and Screening Procedure.
To select studies for this systematic review, we implemented welldefned inclusion and exclusion criteria, ensuring the effective attainment of our research objective.Temporal criteria played a crucial role in this process, with a particular focus on the temporal aspects of the selected studies.In particular, we excluded articles published more than 20 years ago, based on careful consideration of the evolution and enhancement of palliative care practices in recent decades.Te feld of pediatric palliative care has witnessed substantial growth in knowledge, focus, and available resources over time.
By limiting the inclusion of studies to those published in the last two decades, we aimed to ensure that this review's fndings and conclusions would refect the most contemporary practices and approaches aligned with current best practices in pediatric palliative care.Tis decision was made to provide updated and relevant insights into the subject matter, ofering a refection of the latest trends and advancements in this feld.Furthermore, given the limited availability of scientifc literature in this area, it was deemed essential to concentrate on the most recent and relevant developments in pediatric palliative care.Tis selection strategy guarantees that the studies included in this review provide current and representative information about the characteristics and efective approaches in pediatric palliative care programs, enabling a critical analysis of contemporary practices in this domain.
Te selection criteria were applied through the screening process, involving two independent reviewers.Te stages of this process followed the PRISMA fow diagram (see Figure 3), with all peer-reviewed studies considered for inclusion if they met the following criteria: (i) Must include the search elements in at least the title, abstract, and/or keywords (ii) Te publication must be in English or Spanish (iii) Te feld of publication should fall under the applied social sciences, such as education, pedagogy, and/or psychology (iv) Te year of publication must be within the last two decades at the time of the research (2002-2023) (v) Te subject matter must align with the topic of interest Only empirical research studies were included, as no reviews with the same objective as this review were identifed.
In terms of exclusion criteria, articles duplicated across multiple databases or not subjected to blind peer review were excluded.Duplication was found in only one instance, resulting in a fnal selection of nT � 30 articles.

Data Extraction and Reporting. Adhering to the Population Intervention Comparison Outcome Study (PICOS)
design methodology [36], we gathered the following information: population, intervention, comparison, outcome, and study type.Tis allowed us to comprehensively assess the eligibility of the selected articles from the systematic search.To compile data from the reports, two independent researchers conducted an in-depth review of each study, extracting relevant fndings related to the topics of interest in this study.Te resulting articles were categorized into four groups, as depicted in Table 4: pediatric palliative care program or intervention (C1), educational program or intervention (C2), awareness program (C3), and quality-of-life dimensions (C4).Te articles were analyzed and summarized using a matrix method following the PICOS methodology, with the groupings determined through consensus between two independent researchers.Due to the heterogeneous nature of the resulting articles, they are presented in a narrative format.

Results
Te fndings reveal that 50% of the studies employ intragroup or repeated-measures comparisons, while the remaining half utilize intergroup comparisons.Regarding methodology, 48% adopt a quantitative approach, an equal percentage use a qualitative methodology, and only 4% employ a mixed-methods approach.An examination of the publication years demonstrates a growing interest in the subject over the past two years, with 2021 registering the highest number of publications, totaling 7, as of February 2022, with a median of 2.14 articles per year.Among the 30 articles, 26 are published in English (86.67%) and 4 in Spanish (13.33%).Refer to Supplementary File 1 for the characteristics of the included studies.Articles in category C1 concentrate on the efcacy of pediatric advanced care planning (pACP) as a distinct component within PPC programs.Of the 6 articles in this category, 4 are randomized controlled trials, 1 is an exploratory review, and 1 involves a qualitative analysis of 2 pACPs.Furthermore, 3 of the articles focus on pediatric oncology patients, one on pediatric chronic pain patients, and another on pediatric palliative patients regardless of diagnosis.
Symptoms and pain associated with debilitating diseases infict signifcant sufering on pediatric patients, hindering optimal functioning in various domains, including psychosocial aspects [37].It is important to clarify that pACPs, while integral, represent just one aspect of comprehensive pediatric palliative care programs.Tese programs aim to enhance the quality of life of pediatric patients and their families by improving functioning across physical, psychosocial, and even spiritual dimensions [7].According to O'Quinn et al. [38], pACPs represent not just organized   Health & Social Care in the Community programs but also a philosophy that encompasses services and programs for family care, sibling support, counseling, and community resources.In essence, they should accompany patients and their families throughout the disease process, assisting them in making life plans or treatment decisions to enhance their quality of life.However, quality of life is a broad and subjective concept.O'Quinn et al. [38] cite the World Health Organization's (WHO) 1995 defnition, emphasizing its dependence on each individual's perception of life.Schreiner et al. [9] acknowledge the complexity of measuring the quality-of-life construct, choosing Giorgi's phenomenological analytical approach to understand each participant's experience individually.Te authors argue that the quality of life of young individuals hinges on physical, mental, emotional, and social health, fostering a life lived in the present without fear of the future.Tey underscore the importance of active participation in activities, respecting autonomy without falling into paternalism.Adolescents with serious illnesses possess the cognitive capacity to play an active role in decision-making regarding their care [39].
Involving them in shared decision-making empowers young patients, which is associated with a reduction in psychosocial comorbidities [40].It is also critical to note that not all patients and families may be ready to engage with pACP early in the disease trajectory, and special considerations are required for adolescents with severe neurological impairments who may not have decision-making capacity.
PACPs have demonstrated utility in the mental health care of pediatric patients [38], signifcantly reducing anxiety levels [36], even six months after discharge [37].Te authors assert that pACPs contribute to improving perceived selfefcacy and reducing depressive symptoms.Te fndings illustrate that pACPs can enhance emotional quality of life (QOL) [38] and emotional well-being [37].Additionally, Schreiner et al. [9] stress the signifcance of young patients feeling normalized in their situation by engaging in activities typical of their peers.According to the authors, this necessitates the inclusion of social care, encompassing emotionally profound relationships and robust support systems, which, as per O'Quinn et al. [38], also involve the participation of siblings and family members.pACPs have also proven efective in enhancing physical health, leading to a reduction in overall pain intensity and improved functioning [37].Finally, Schreiner et al. and Greenley et al. [9,40] emphasize the importance of pediatric patients feeling productive, capable of tackling challenges such as educational achievements or experiences.Te limitations of pACPs stem from the fact that these programs are often not considered until the disease is advanced, with early intervention proving efective in enhancing the quality of life of these patients [7].According to these authors, another weakness of pACPs is the lack of preparedness and training among healthcare professionals in palliative care, diminishing the beneft to the patient.A comprehensive pediatric palliative care program should extend beyond the hospital environment and encompass the school or other community settings to enable and support children's engagement in education [41].As Boo et al. [42] suggest, community outreach not only imparts crucial values to healthcare professionals but also equips them to address practical, real-world challenges.Considering educational programs in the context of pediatric palliative care patients is shown to be an essential tool for their recovery [40].Te results underscore that play activities are fundamental, fostering personal development, providing joy for children [43], establishing a support network, and enabling skill development [44], thereby enhancing the QOL of both the children and their families [44,45], to such an extent that Rau et al. [46] highlight the importance of early promotion of psychological well-being in schools.Verger et al. [45] point out that, in some countries such as Spain, there is no adequate legal framework regulating the care of these students.In contrast, other countries possess specifc regulations and legal frameworks addressing this issue, while others rely on general guidelines for inclusive health care and education.Similar to C1, the limited involvement of health professionals beyond their medical responsibilities is highlighted due to human resource shortages and heavy workloads [43], along with inadequate communication between educational and health professionals [45,47].
Nevertheless, several factors facilitate the inclusion of these children in school.Te pivotal role of teachers as advocates and educators [44] is fundamental for the emotional and physical development of these students [45], and efective coordination between professionals supports their educational progress [41,45,48,49].Tis coordination should allow for appropriate adaptations tailored to the needs of each student, rather than segregating them from the classroom [49].Te educational process can be complemented with support from school nurses.Engelke et al. [50] demonstrate that their involvement in schools leads to a higher self-perceived QOL for the users.In cases where physical attendance is not feasible due to hospitalization or other factors, telepresence can reduce their isolation [51] and improve their social well-being [52].

Awareness Program. Category C3 comprises 2 articles
focusing on health awareness programs in schools.Stewart et al. [53] implement a prevention program and subsequently evaluate it, while Beccaro et al. [54] employ a preand post-test methodology to examine mainstream school students' knowledge about palliative care after awareness training.
In this context, an "awareness program" refers to a set of activities or initiatives designed to raise awareness and understanding of a specifc health-related topic, in this case, palliative care.Tese programs aim to educate students and the broader community about the importance and key concepts of palliative care, promoting a deeper understanding of health care in critical health situations.
Facilitating factors for awareness-raising, as identifed by Stewart et al. [53], are rooted in the establishment of a shared mission and principles between the school and the hospital, fostering shared responsibility and mutual understanding.Challenges highlighted by Beccaro et al. [54] underscore the importance of participatory health promotion, involving various community sectors to enhance collaboration.Tey emphasize that schools, and more specifcally, students, play a crucial role, as they constitute the foundation of future society.Te authors further note that the existing literature on school-based palliative care interventions is scarce or virtually nonexistent, underscoring the signifcance of addressing awareness within this domain.

Quality-of-Life
Dimensions.Chronic or limiting illnesses often lead to increased school absenteeism and worsened mental health [55], impacting the quality of life of afected individuals.Terefore, as Alonso et al. [56] argue, it is essential to provide psychopedagogical support to these children and young people, enabling them to express and understand their emotions.Anxiety and distress have been shown to have a detrimental efect on their health-related quality of life (HRQOL) [57][58][59].Another factor impeding the well-being of these students is delayed diagnosis, which also afects their educational performance [60].
Walker et al. [58] identify several factors that enhance the perceived QOL of children and young people with limiting illnesses.Encouraging social relationships and motivating these patients through challenges that boost their self-confdence and self-esteem are highlighted as particularly relevant for school-based interventions.Adistie et al. [61] emphasize the importance of communication about issues that are of utmost concern to children, especially as they approach the end of life, as this helps reduce future anxiety, fear, or depression responses.Zaidman-Zait et al. [62] note in their study that participants had lower scores in the categories of self-esteem and socialization.Furthermore, consistent with articles in the previous categories, the relationship and coordination between educational and health professionals emerge as essential elements in ensuring the well-being of these students, with inclusive education holding great signifcance [63].
However, as Vente et al. [57] point out, there are several measurement scales for examining QOL, making it challenging to integrate the results of studies on this topic.According to the author, QOL is a subjective construct dependent on each individual's unique defnition.Nevertheless, despite this subjectivity, there are common elements that contribute to promoting QOL, with an emphasis on fostering socialization and healthy relationships [57].
Health & Social Care in the Community Table 5 ofers a succinct presentation of fndings across the four research categories within the domain of PPC.Te results in this table directly align with the primary objective of this systematic review, which is to identify the key characteristics of successful PPC programs that demonstrably enhance the QOL of pediatric palliative patients.Special attention is given to programs that incorporate educational components into their operations.Tis table serves as a structured summary of research outcomes and ofers a structured glimpse into the diverse aspects of pediatric palliative care research, shedding light on the impact of these programs on young patients' QOL, the signifcance of educational initiatives, and the dimensions infuencing their overall well-being.

Discussion
Tis study highlights that PPC programs, due to their multifaceted nature, pose challenges not only to multidisciplinary hospital education teams but also to society at large.Tese challenges encompass aspects such as resource allocation, ethical considerations, and public awareness.It is evident that successful PPC programs must adopt a holistic approach, drawing on various community resources, including hospitals, schools, and family support networks.Instead of addressing only the physical health of pediatric patients, these programs should encompass all aspects of a child's development-emotional, psychosocial, physical, and spiritual.Achieving this requires seamless networking and communication among all professionals involved in each of these areas.
As emphasized by Hicks et al. [64], the organization of multidisciplinary services holds paramount importance in palliative care.However, it is crucial to acknowledge that QOL, being subjective and individual, demands personalized responses tailored to each child's specifc circumstances.
Te signifcance of schooling emerges as a critical factor in the QOL of children and young individuals with lifethreatening illnesses.Schooling provides a sense of normalcy, enabling participation in activities typical of their peers and fostering the development of social skills and selfesteem.Currently, in Spain, the educational and home care service (SAED) facilitates education for students unable to attend school in person due to health reasons.Nevertheless, attending school physically can ofer additional benefts through appropriate educational inclusion, which ideally involves support and coordination with health services, including the presence of a nurse when possible.Te role of schools in enhancing the QOL of these children is undeniable, and PPC programs should prioritize and incorporate it as a key element whenever feasible.Early implementation is unequivocally crucial in PPC programs, which is why a protocol for action involving diferent institutions, initiated at the time of diagnosis, is considered pertinent.
Moreover, considering international variations in PPC practices is essential.PPC programs vary globally in terms of focus, available resources, and regulations, making it crucial to understand and adapt best practices from one country to another.Collaboration among countries to share best practices can enrich the understanding of how to enhance the QOL of pediatric patients in palliative care on a global scale.Policies and health systems, resource availability, education and training, and access to care may difer signifcantly between countries, infuencing the delivery of PPC.As such, the development of PPC programs should consider these diverse international contexts and adapt accordingly, aiming for improved patient outcomes and enhanced QOL for pediatric palliative patients across borders.
Regarding the training of professionals involved in PPC, it is worth noting that families of pediatric patients often express concerns about a lack of empathy in healthcare professionals caring for their children.Furthermore, in Spain, education degrees currently do not include subjects related to hospital pedagogy, understanding hospital pedagogy as the specialized feld that combines educational theory and practice to support the learning and emotional needs of children and young individuals receiving medical treatment or who are in a hospital setting.It emphasizes creating a supportive and adaptive educational environment that accommodates the unique circumstances of each child, ensuring their continued academic development and emotional well-being despite medical challenges.Terefore, teacher training programs become vital mechanisms for fostering teaching skills among educators [65,66], which should extend to healthcare professionals and others involved in PPC.In essence, a robust PPC program must have competent and empathetic staf, making awareness-raising an indispensable initial step before the implementation of a comprehensive PPC program [67].
To address the research question regarding the characteristics of PPC that enhance the QOL of pediatric palliative patients, we have identifed recurring elements throughout the analysis of 30 articles (see Table 6).For a PPC program to be comprehensive, it must efectively utilize community resources through networked coordination and communication among professionals.Prior training and awareness of palliative care are essential components.Equally important is the holistic approach to a child's development, beyond just physical health improvement.PPC should encompass the understanding and expression of emotions.Normalization holds signifcant value for these children and young individuals, with schools playing a pivotal role in reducing their isolation and enabling active participation, empowering them.In cases where physical presence is not suitable for a child's situation, telepresence emerges as a viable alternative.Finally, early implementation of PPC at the time of diagnosis, which is currently not prioritized, stands out as a crucial factor in improving the QOL of pediatric palliative patients.
Barriers serve as clear indications of elements to be addressed or improved in tertiary care, while enablers should be promoted as essential elements in PPC programs.However, evidence gaps exist due to the heterogeneity and diversity of the interventions reviewed, which is precisely due to the lack of a systematized design for PPCs.Also, the diversity within the PPC population highlights the need for 8 Health & Social Care in the Community Te exclusion of non-English or Spanish studies due to a lack of access to qualifed translation services covered by project funding led to a loss of information.Te number of articles included in the systematic review is considered low due to the scarce existing literature on the subject, which is highly specifc.However, a positive trend has been detected in recent years, and we expect it to become a topic of interest for research.

Conclusions
Tis study underscores the complexity of PPC programs, highlighting challenges that extend beyond the healthcare setting to include broader societal concerns such as resource allocation, ethical considerations, and public awareness.To address the multifaceted needs of pediatric patients efectively, PPC programs must embrace a holistic approach that leverages diverse community resources, including hospitals, schools, and family support networks.Crucially, these programs should address not only the physical aspects of a child's condition but also their emotional, psychosocial, and spiritual development.A key distinction must be made between the health education of professionals, which focuses on equipping healthcare providers with the knowledge and skills to deliver palliative care, and the school education of children and young people, which emphasizes academic learning and social engagement.Both forms of education are vital in the context of PPC, yet they serve distinct populations and purposes.
Furthermore, the role of advance care planning in PPC cannot be overstated.It is a critical component that ensures care aligns with the individual preferences and values of the child and their family, tailoring interventions to the unique circumstances of each patient.Tis personalized approach is fundamental to enhancing the quality of life for pediatric palliative patients.
We hope this research serves as a catalyst for further exploration and development in the feld of PPC, encouraging new initiatives that build upon the insights provided here.By emphasizing the importance of education-both professional and academic-and advance care planning, we can work towards more comprehensive and responsive PPC programs that truly meet the needs of children facing serious illnesses.
inclusive education" or education or inclusive or educative or learning or process or school) ABS-KEY (palliative or "long term illness" or "terminal illness" or "chronic illness")) AND TITLE-ABS-KEY (youngster * or child * or pediatrics or "young adult")) AND TITLE-ABS-KEY (wellbeing or "quality of life" or hrqol or "health related quality of life")) AND TITLE-ABS-KEY (family or "hospital pedagogy" or "ospital class * " or class * )) AND TITLE-ABS-KEY (education OR school OR inclusive OR educative OR learning OR process OR "inclusive education") paliativos, calidad de vida, pediatri * care" AND (child OR pediatrics) AND ("quality of life" OR wellbeing) AND ("hospital pedagogy" OR "education" OR "school" OR "inclusive education") palliative care program" AND quality of life AND child AND school 279 care" AND (child OR pediatrics) AND ("quality of life" OR wellbeing) AND ("hospital pedagogy" OR "education" OR "school" OR "inclusive education") (Palliative or "long term illness" or "terminal illness" or "chronic illness") AND (youngster * or child * or pediatrics or "young adult")) AND (wellbeing or "quality of life" or hrqol or "health related quality of life")) AND (family or "hospital pedagogy" or "hospital class * " or class")) AND � ("inclusive education" or education or inclusive or educative or learning or process or school) Care in the Community 3.1.Pediatric Palliative Care Programs or Interventions.

Figure 1 :
Figure 1: Visualization map of the correlation network of search no. 2 in the WOS database.
(i) Facilitators (a) Psychopedagogical care (b) Promoting social relations with peers and role models for the development of their maturing skills (c) Communication on issues of concern to them (d) Efective inclusive education (e) Empowerment (f ) Including elements of categories 1 and 2 (ii) Barriers (a) Delay in diagnosis (b) Delay in access to a PPC program (c) Isolation (d) Overprotection (e) Lack of autonomy (f ) Not including elements of categories 1 and 2 10Health & Social Care in the Community

Table 1 :
Elements resulting from the map of visualizations in the search no. 1.

Table 2 :
Documentary sources and search strings for all databases.
((((ALL �(palliative or long term illness or terminal illness or chronic illness)) AND ALL � (youngsters or childhood or child or children or pediatrics or "young adult")) AND ALL � (well-being or quality of life or hrqol)) AND ALL � * or pediatrics or "young adult")) AND ALL � (wellbeing or "of life" or hrqol or "health related quality of life")) AND ALL � (family or "hospital pedagogy" or "hospital class * " or class *

Table 3 :
Co-occurrence analysis of search no. 2.

Table 4 :
Categorization of the articles for the data extraction.

Table 5 :
Summary of fndings in pediatric palliative care research categories.
4.1.Limitations.Te systematic search included published articles and those pending publication on platforms that allow this option.However, access to unpublished titles was limited, resulting in a loss of information.Further synthesis is needed to determine if the fndings regarding the minimum essential elements for a PPC program are transferable.

Table 6 :
Compilation of the future directions for PPC programs or interventions gathered from the qualitative synthesis of the reviewed articles.Comprehensive individualized plan (iii) Care and attention to the family (iv) Accompaniment in decision-making (v) Use of community services (vi) Active role, promotion, and respect for the autonomy of pediatric patients (vii) Consideration of their cognitive abilities (viii) Early implementation (ix) Training and preparation of the professionals involved Legal framework that adequately regulates the educative inclusion (ii) Communication and collaboration between the services involved (health, education, community) (iii) Tailored strategies for inclusion (telepresence, medical accompaniment, etc.) Awareness (i) Need to deepen school-based palliative interventions Efect on the QoL