A comprehensive literature search was conducted between January and May 2024 using the Medline (via PubMed) and Embase databases. Search strategies were developed using Medical Subject Headings (MeSH) for PubMed and Emtree terms for Embase, combined with relevant free-text keywords. Boolean operators and appropriate filters were applied to refine the results.

The specific search strategy used for PubMed was: (exp Child/ or exp Infant/ or exp Adolescent/ or "child*.mp.") AND (exp Palliative Care/ or "palliative care*.mp.") AND (exp Chronic Disease/ or "chronic illness*.mp.") AND (exp Models of Care/ or "models of care*.mp.") AND (exp Community Health Services/ or "community based*.mp." OR "home based*.mp.") AND (exp Quality of Life/ or "quality of life*.mp.") AND (exp Pain/ or exp Symptom/ or "symptom management*.mp.") AND (exp Family/ or exp Caregivers/ or "caregiver burden*.mp.").

The specific search strategy used for Embase was: (child OR infant OR adolescent) AND (palliative care OR "palliative care*") AND (chronic disease OR "chronic illness*") AND (models of care OR "models of care*") AND (community health services OR "community based*" OR "home based*") AND (quality of life OR "quality of life*") AND (pain OR symptom OR "symptom management*") AND (family OR caregiver OR "caregiver burden*").

The Rayyan® web-based platform was used to manage and screen the identified studies.

Original articles in English published between January 1, 2014, and May 30, 2024, were considered eligible if they met the following criteria: (a) inclusion of conditions requiring palliative care according to the Association for Children's Palliative Care (ACT) classification, and (b) description of the structure, processes, or outcomes of community-based palliative care models, including home-based care services, community care centers for children and adolescents, day centers, compassionate communities, and hybrid models. The present study’s excluded articles that did not explicitly report that their population needed or received palliative care, non-original research articles (systematic reviews, meta-analyses, letters to the editor, short articles), and articles published in a language other than English or identified as duplicates in the initial literature search.

Abstracts from the initial literature search were screened by two researchers for possible inclusion. The articles selected at this initial stage were read in full, and two researchers independently applied the inclusion and exclusion criteria of the review. A third researcher was consulted in case of discrepancies during the selection process. The reference lists of all selected articles were also screened to identify additional potentially eligible articles.

Three researchers on the team independently extracted data from the articles. Key information from each study was recorded in an Excel table created by the research group. The extracted data included study design, population, characteristics of the community intervention, and dimensions of quality (structure, processes, and outcomes). The extracted information was then reviewed by all researchers.

The selected articles were classified according to their method as quantitative, qualitative, or mixed studies. The quality of the studies was assessed using different scales. The quality of experimental and cross-sectional studies was assessed using the Newcastle-Ottawa scale, which has nine items grouped into four sections: selection, comparability, outcome, and statistics. For each outcome of interest, validity scores were interpreted as follows: ≤ 5, low quality; 6–7, moderate quality; and 8–9, high quality. The STROBE statement was used to evaluate the quality of observational studies, the Consolidated Criteria for Reporting Qualitative Research (COREQ) to evaluate qualitative studies, and the Case Reporting (CARE) guideline to evaluate case series. Two reviewers independently assessed the quality of each study. A third researcher was consulted in case of disagreements during the quality assessment process.

The results were synthesized using Cochrane’s guidelines on synthesizing and presenting findings for systematic reviews of interventions [15], given the heterogeneity of studies evaluating various outcome measures; the main characteristics were synthesized narratively. The information extracted from the articles was reviewed and analyzed to identify common themes and representative conclusions. To better understand the results, the Donabedian model was used, which provides a classification of the dimensions of quality according to the structure, processes, and outcomes of health services. All authors participated in the analysis and interpretation of the results to ensure the integrity and accuracy of the process.

Community-based PPC models cluster around four delivery settings—home-based care, outpatient PPC, community health centers, and social support centers—with cross-cutting strategies such as telemedicine, multidisciplinary teams, and educational tools[16,17,19,20,22–24,26,30,34,36–41] Rather than repeating Table 2 [5,9,16–46], the authors highlight three consistent patterns:

• (1)

  Structures that enable access (24/7 availability, equipment, assistive devices, digital monitoring) [26,28,38,39];

• (2)

  Processes that integrate medical and psychosocial support (home visits, caregiver education, symptom surveillance, advance care planning, school and social-service coordination, interprofessional learning) [16,17,19,20,22–24,34,36,37,39,40]; and

• (3)

  Outcomes that matter to families (fewer hospital encounters, better symptom control and HRQoL, higher satisfaction, and lower caregiver stress) [16,17,23,26,27,37,41].

According to the synthesized literature, the main structural components of these programs are related to the availability of a family caregiver [16,17,23,24,36,38–41]. The studies consulted show that mothers [75.6 %] are the ones who usually devote themselves to caring for their sick child [38]. It is important to note that a multidisciplinary group of physicians, nurses, psychologists, social workers, and other specialists is needed to fully address the physical, psychological, and spiritual symptoms of children, adolescents, and their families [19,20,22,23]. It is essential to have 24/7 medical and specialized nursing supervision to ensure timely and adequate care, especially in crises, where the availability of technological equipment is crucial. Having this care available 24 h a day, 7 days a week, increases the likelihood of dying at home [18].

To meet the unique needs of children, adolescents, and their families, it is necessary to integrate rehabilitation teams, psychosocial care, and specialized nursing care [16,34,42]. According to the literature, using app-based solutions could improve synchronous monitoring and assessment of patient symptoms. The use of digital tools and mobile devices can facilitate communication, patient status monitoring, and remote support [24,36]. It is also important to note that assistive devices, such as wheelchairs, walkers, and patient lifts, can increase the mobility and autonomy of children and adolescents and improve their quality of life [24,31,34,38]. To ensure safe and effective home-based care, home programs must provide patients with all necessary medical equipment and supplies, such as hospital beds, infusion pumps, and medications, depending on healthcare system regulations [16,17,36,38,40]. The frequent use of a variety of assistive devices and the expected and perceived benefits demonstrate that early provision of assistive devices can be an effective strategy for improving the functional status of young children, especially in cases of severe functional dependency. The patient and family should receive educational materials to help them understand the disease [16,17,23–25,29,30,32,36,41], palliative care, and the home care process. An efficient clinical logistics system[16,17,39] is needed to transport professional staff and equipment, especially in rural or remote areas.

Family strain, including marital stress and reduced attention to siblings, was reported in multiple home-based PPC studies [17,38–40]. In these cohorts, qualitative data contextualized such percentages as reflections of high caregiver burden rather than generalizable population estimates. Table 1 summarizes each study’s setting, sample, and family-related findings to clarify these contextual differences.

According to the literature, it is critical that parents and healthcare professionals agree on how to assess the patient's symptoms to ensure that they receive appropriate care [5,18,30]. It is important to train family caregivers to manage the patient's symptoms at home. Equally important is ensuring that parents and healthcare professionals share a common understanding of symptoms to provide appropriate patient care [17,23,24,40]. Regular home visits by healthcare professionals should be made to monitor the patient's condition and adjust care as needed.

Palliative home visiting provides tailored care for patients and families, empowers parents to become skilled caregivers, and reduces 4.7 times unnecessary hospitalizations [41]. Children and adolescents should receive assistance with daily activities such as bathing, dressing, and eating; caregivers should also be provided with brief educational interventions on topics related to patient care [17,23,24,30,36,41].

Home-based care for children with palliative care needs should also address psychological, social, and spiritual aspects of patient care, with particular emphasis on providing psychological and psychiatric support for the patient and family [17,38,39]. Additionally, the literature emphasizes the importance of coordinating efforts among all healthcare providers to ensure comprehensive patient care [16].

Symptom control is one of the most important outcomes of palliative care. Several systematically reviewed articles describe patient and family caregiver satisfaction in terms of satisfaction with caregiving, though it is often emotionally overwhelming for families (65,9 %) [37,38]. The use of social resources is an important factor in PPC models. Among patients receiving home-based care, 71.8 % continued attending school. Studies also indicate that home-based preventive and follow-up care significantly reduces the use of hospital resources, including hospital admissions and emergency room visits [16,37,41]. Family outcomes also highlight the levels of family distress and understanding associated with home-based care. For patients who did not receive home visits, PPC teams often failed to provide comprehensive care, and parents did not have opportunities to discuss their preferences for the child's place of death, increasing the likelihood that the child would pass away in a hospital setting [18].

There is a pattern of late referral to community-based palliative care. In the study by Grossoehme et al. [23]. 27.2 % of patients died, and of these, 77 % were referred to home-based end-of-life care. This high percentage of deceased patients suggests that the notion of hospice versus palliative care may be a false dichotomy for many children with life-limiting conditions. In addition, the use of synchronous symptom assessment devices in these patients shows high rates of usability and acceptance by caregivers [36].

Several studies noted the needs of siblings of children receiving palliative care, who often experience disrupted routines, school difficulties, and emotional strain [17,38–40]. Programs that incorporated sibling support, such as psychoeducational sessions, recreational therapy, and school coordination, reported improved family functioning [17,24,39]. Likewise, models emphasizing interprofessional learning between nurses, physicians, psychologists, and educators showed enhanced care coordination, better symptom management, and greater caregiver confidence [19,20,23,36].

Outpatient palliative care (OPC) services provide invaluable care and support to people with serious illness and their families. These services are characterized by a comprehensive, multidisciplinary approach that brings together a team of healthcare and social well-being professionals to provide individualized care [5,32,43]. It requires a structure with a clinical team of physicians and nurses to manage symptoms, prescribe medications, and coordinate care with other specialists [22,26,44]. The literature emphasizes the importance of involving rehabilitation teams, psychosocial care, and specialized nursing care [17,20,29]. Likewise, mental health services can play a crucial role in community palliative care. Including mental health professionals, such as psychologists and psychiatrists, and an interdisciplinary social support service can help individuals cope with the stress, anxiety, and depression associated with serious illness, as well as help patients and their families manage the social, financial, and legal aspects of the illness [18,25,27,32,33].

Using telemedicine improves access to palliative care, especially for patients living in remote areas or those with mobility difficulties [28,31,37]. OPC programs can offer online, in-person, or hybrid delivery models of PPC as telemedicine uses increase. While both patients and caregivers expressed a greater preference for in-person physical therapy sessions, they were more open to receiving psychology sessions online. Notably, 65 % of patients preferred in-person appointments, while caregivers expressed equal preference for in-person and online medical consultations [18,33].

The synthesized articles highlight the importance of OPC conducting a comprehensive assessment of the patient and family to understand their needs, priorities, and values [5,17,18,24,30]. Assessment of physical, psychosocial, and spiritual symptoms, as well as social and practical support needs, is included in OPC to effectively manage symptoms. Therefore, OPC should use a variety of techniques and include medications, complementary therapies, and non-pharmacological strategies. Advance care planning is highlighted as a key component of OPC because it allows families to express their wishes and preferences for how their children should be cared for during their final moments [5,9,32,45].

Coordination of care and education of patients and family members should be a central element of healthcare professionals, social services, and community organizations to ensure that the child, adolescent, and family receive comprehensive and consistent care that addresses all of their needs and ensures smooth transitions between different care settings, such as hospital, home, and school [16,23–25,29,30,32,35,36,41]. In addition, several of the studies underscore the need for bioethics consultation teams to manage ethical conflicts early in the care of end-of-life patients [22,28].

Some studies highlight the role of OPC in understanding pediatric palliative care as a resource for addressing children and adolescents' problems as well as the social functioning of patients and caregivers [20,21,44]. Reductions in hospitalizations and readmissions have been one of the most frequently reported management indicators in the literature, demonstrating the benefits of OPC [16,18]. Support for family members and caregivers in the bereavement process has been described, especially for patients with limited treatment options or when premature death is unavoidable. The quality and agreement of parents' and healthcare professionals' perceptions of symptoms influence quality of life and parental satisfaction and are predictors of quality of symptom management and palliative care [17].

Community health centers should be equipped with structural resources to support comprehensive care, including a multidisciplinary team (e.g., psychologists, social workers, educators, and occupational therapists), individual and group consultation rooms, play and recreation areas, and a dining room stocked with didactic, recreational, and technological materials. These centers are required to provide a wide range of health services to children and adolescents, such as medical consultations, health screenings, immunizations, dental care, laboratory services, and nutritionist consultations [28,43–45]. In non-specialized community services, there is an important need for practical screening tools to identify the palliative care needs of children and adolescents and refer them to specialized services when necessary (e.g., the Pediatric Palliative Screening Scale (PaPaS)) [19,25,27,29].

Educational programs and materials for patients, families, health care professionals, and the community about PPC are the mechanisms to ensure adherence to treatment and connection to specialized services. This is particularly true for long-term chronic conditions and in health systems where early referrals to specialized PPC services are not yet standardized. The use of educational brochures has been shown to help caregivers become better informed and develop a greater preference for palliative care [30,32,43]. Healthcare professionals in these services should have access to up-to-date, evidence-based clinical guidelines for the care of children with serious or life-limiting illness. Additionally, validated tools need to be implemented to identify children who could benefit from palliative care promptly and effectively.

Given the frequent challenges faced by spouses with children receiving palliative care, community health centers should be able to provide support to families of children and adolescents regarding their physical, mental, and emotional health [17,26]. This may include psychosocial support and counseling, parenting and educational workshops, parent support groups, and connections to other social services [28,30,31,36,44].

Community health centers should promote health and disease prevention in children, adolescents and their families. Health and nutrition workshops, immunization campaigns, and sexual and reproductive health programs can be part of these promotion and prevention activities [5,43,45,46]. Family and social support, reduced parental stress, and reduced incidence of preventable illness in patients eligible for palliative care are common outcomes of this model of care [18,20,34,37].

Social support centers (SSCs) for PPC patients and their families are intended to provide comprehensive support to children with chronic, complex, or terminal illnesses and their families [25,29,42]. Based on a biopsychosocial model of care, these centers aim to address the physical, emotional, social, and spiritual needs of patients and their families [5,25,26,41,45]. SSCs are typically staffed by physicians, nurses, psychologists, social workers, occupational therapists, educators, and support personnel. These centers are equipped with facilities, such as individual and group consultation rooms, play and entertainment areas for children, spaces for music and art therapy activities, libraries and reading rooms, as well as chapels or places for spiritual reflection [22,26,30,44].

According to the literature, SSCs offer a wide range of services and programs for patients and their families. These include symptom management, nutritional support, emotional assessment and counseling, individual and family therapy, support groups, and bereavement counseling [21,22,32]. Educational services for children with diseases requiring palliative care have developed significantly in these centers. These services include school support, coping skills workshops, health education, and play and recreational activities. Additionally, SSCS often provides resources such as religious or spiritual support and parent support groups [17,18,37].

Parents and families can also benefit from animal-assisted interventions [26], and it is possible to identify programs for patients with long-term chronic illnesses. SSCs have been shown to improve the quality of life for patients with chronic diseases and their families. Studies have shown that these centers can reduce patient and family stress and anxiety, improve mood and sleep quality, reduce caregiver burden, increase satisfaction with medical care, and ease the grieving process [32,33,36]. Improving the emotional and social well-being of children and adolescents, including reducing stress, anxiety, and depressive symptoms, and strengthening self-esteem and social skills, should be the primary outcomes of social programs [21,22,44]. Social support centers that provide care to children and adolescents with diseases that require palliative care should help them return to their community and school environments [16,47].

The synthesis identified different resources essential for the care of children with conditions requiring palliative care, which are also integrated into different models of palliative care in the community setting (Table 3) [26,37,38].

The studies included in the review reported some instruments useful for measuring the effectiveness of PPC interventions. One such tool is the Pediatric Quality of Life Inventory (PedsQL4.0), which was designed to assess structural parameters. This inventory can be administered to parents and even children, as it includes age-appropriate self-assessment questions addressing the child's condition in areas such as physical, emotional, social, and school functioning [26]. Another tool highlighted is the Pediatric Quality of Life Inventory Family Impact Module (PedsQL-FIM), a 36-item questionnaire that assesses the impact of chronic illness on families and the health-related quality of life (HRQOL) of children aged 2 to 18 years.(26) For process assessment, the Pediatric Parent Inventory (PIP) was reported. It measures the stress of primary caregivers of chronic pediatric patients using 42 items divided into 4 dimensions: medical care, communication, emotional distress, and role function.