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Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area.

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BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. METHODS: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. RESULTS: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. CONCLUSIONS: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

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CONTEXT: The Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development. OBJECTIVES: To analyze the current need and level of development of PPC within Mexico. METHODS: PPC need was estimated using causes of death associated with serious health-related suffering from national mortality data from the General Directorate of Health Information. The level of development was measured through six indicators involving access to PPC services and opioids, then classified using the GAPC development categories adapted to regional territories based on available data. RESULTS: In 2021, 37,444 children died in Mexico. Of those, 10,677 (28.29%) died from conditions with serious health-related suffering, averaging a need for PPC of 25/100,000 children. Out of Mexico's 32 states, two (6.2%) had no PPC activity (category 1), twenty (62.6%) were in a capacity-building phase (category 2), eight (25%) had isolated PPC provision (category 3a), while two (6.2%) had generalized PPC provision (category 3b). No state had early (category 4a) or advanced PPC integration (category 4b). Overall, Mexico was classified as category 2. CONCLUSIONS: PPC services are distributed unevenly across the country, leading to inequitable access to care and an inability to meet the needs of patients and families. There is a disparity between the level of development of adult palliative care services and the underdevelopment of PPC in Mexico. This information can help stakeholders guide the development of PPC where it is needed most.

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The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC clinic during the years 2001 to 2021 and the IMD outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC and IMD. Among outpatients, 14% were diagnosed with IMD, which were referred to the PPC service earlier compared to Non-IMD cases. The Group 3 (complex molecules) was the most frequent (64.7%), following by Group 1 representing by small molecules (21.6%), the latter having a lower median age at diagnosis when compared to the former (0.7 vs. 5.2 years, p = 0.001). The sphingolipidoses were the pathologies most frequent in our cohort, in line with what was observed in the literature. There were no differences between IMD groups in terms of diagnosis and PPC referral age, however in Non-IMD conditions, the age of diagnosis were earlier than IMD. Nevertheless, IMD group showed lower age of referral to PPC. The IMD comprises large fraction of outpatients in the PPC setting, thus further studies are needed in this field.

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OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

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OBJECTIVE: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use. STUDY DESIGN: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs. RESULTS: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001). CONCLUSION: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.

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This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a comprehensive search for peer-reviewed articles related to pediatric palliative care in Latin America, considering both review and empirical articles published in English, Portuguese, or Spanish within the last decade. Our review initially identified 30 publications, which were subjected to a full-text assessment. The majority of these articles originated from Brazil, Mexico, and Chile, highlighting a regional concentration of research efforts. Notably, we observed a scarcity of comprehensive research and specific studies on pediatric palliative care in Latin America. Our findings revealed significant challenges, including resource limitations, the absence of dedicated policies, and the critical need for interdisciplinary teams to address the multifaceted aspects of pediatric palliative care. In light of our review, we emphasise the necessity for more extensive and representative research efforts, as well as the continuous updating of scientific evidence in the field of pediatric palliative care within the Latin American context. The recommendations derived from this review aim to contribute to the enhancement of pediatric palliative care services and accessibility throughout Latin America.

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The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers, even in case of loss of a patient, promoting a bereavement process with less suffering. The data were qualitatively analyzed by IRAMUTEQ software, with a high degree of significance of essay responses on ethics related to palliative care in pediatrics. Discussions about prognosis, goals of care, and treatment options can be very difficult, as legally supported palliative care alternatives may diverge from the wishes of the family. We conclude that divergences exist between the application of palliative medicine and ethics regarding acceptance and end-of-life management of pediatric patients. Ethical challenges are constantly complex situations in which palliative physicians must relate legal concepts, knowledge and family values, which often conflict. The quality of palliative care depends initially on the ability of specialized professionals to identify and explain the ethical issues that generate conflict or uncertainty, in addition to raising discussions with the family about the medical, moral and legal issues surrounding the difficult situation.

Las barreras éticas involucradas en la práctica de la medicina paliativa pediátrica siguen siendo altas y desafiantes. En términos de ética médica, se debe prestar atención a la cultura, la religión y los valores familiares, con el fin de promover una atención adecuada a los cuidadores, incluso en caso de pérdida de un paciente, promoviendo un proceso de duelo con menos sufrimiento. Los datos fueron analizados cualitativamente por el software IRAMUTEQ, con un alto grado de significación de las respuestas de los ensayos sobre la ética relacionada con los cuidados paliativos en pediatría. Las discusiones sobre el pronóstico, los objetivos de los cuidados y las opciones de tratamiento pueden ser muy difíciles, ya que las alternativas de cuidados paliativos legalmente respaldadas pueden divergir de los deseos de la familia. Se concluye que existen divergencias entre la aplicación de la medicina paliativa y la ética en relación con la aceptación y la gestión del final de la vida de los pacientes pediátricos. Los retos éticos son situaciones constantemente complejas en las que los médicos paliativos deben relacionar conceptos jurídicos, conocimientos y valores familiares, que a menudo entran en conflicto. La calidad de los cuidados paliativos depende inicialmente de la capacidad de los profesionales especializados para identificar y explicar las cuestiones éticas que generan conflicto o incertidumbre, además de plantear debates con la familia sobre las cuestiones médicas, morales y jurídicas que rodean la difícil situación.

As barreiras éticas envolvidas na prática da medicina paliativa pediátrica ainda são grandes e desafiadoras. No que diz respeito à ética médica, deve-se prestar atenção à cultura, religião e valores familiares, a fim de pro-mover um cuidado adequado para os cuidadores, mesmo em caso de perda do paciente, promovendo um pro-cesso de luto com menos sofrimento. Os dados foram analisados qualitativamente pelo software IRAMU-TEQ, com um alto grau de significância das respostas dos ensaios sobre ética relacionada aos cuidados palia-tivos em pediatria. As discussões sobre prognóstico, objetivos de cuidados e opções de tratamento podem ser extremamente desafiadoras, uma vez que as alternativas de cuidados paliativos legalmente suportadas podem divergir dos desejos da família. Nosso estudo conclui que existem divergências entre a implementação da medicina paliativa e a ética em relação à aceitação e manejo do fim da vida de pacientes pediátricos. Os desa-fios éticos são constantemente situações complexas em que os médicos paliativistas devem relacionar concei-tos legais, conhecimento e valores familiares, que frequentemente entram em conflito. A qualidade dos cuida-dos paliativos depende inicialmente da capacidade de profissionais especializados identificarem e explicarem as questões éticas que levam a conflitos ou incertezas, além de levantar discussões com a família sobre ques-tões médicas, morais e legais que cercam a situação difícil.

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PURPOSE: To present 3 cases of oncologic pain treated by DREZotomy in the pediatric population and to review the literature published about this procedure. METHODS: The permanent literature about oncologic pain treatment in children and the applicability of DREZotomy was reviewed. Three cases treated at our institution were reviewed and presented. RESULTS: In the pediatric population, the DREZotomy has been extensively applied for the treatment of spasticity and spasticity-related pain. Currently, there are no reports of oncologic pain treated by means of a DREZotomy in children. We presented 3 cases coursing the terminal stage of illness, presenting predominantly neuropathic, oncologic pain that were successfully managed after a DREZotomy was performed. CONCLUSION: In well-selected patients, with a good general condition and life expectancy to withstand an open neurosurgical procedure, DREZotomy is an excellent tool to treat neuropathic oncologic pain.

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Introduction: The objective of this paper was to describe the vision of death from the perspective of families of children who experienced palliative care, and team members working in one unit, and to explore the roles of healthcare clowns in working with life and death. The major research of which this paper is part was a requirement of one healthcare clown organization, that since 2008 works as members of the palliative care unit in a public hospital in Chile. Description: Using a qualitative methodology, and an emergent and descriptive design, 26 people, including mothers and team members of one palliative care unit, participated in in-depth interviews and discussion groups separately. Data analysis was performed using grounded theory and critical discourse analysis techniques. Results: The roles played by healthcare clowns in palliative care were accompanying, mediating between team members and families, facilitating to process death, provision of humane care using socioemotional competences, promotion of social relationships, and being complementary therapy. Conclusion: The six roles of healthcare clowns identified by this research have implications for public policies and actions in palliative care. There is also a need to expand this type of work to other public health services in Chile.

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Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided "pro bono" by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID-19 pandemic on the provision of PC in children.

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OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurologic conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n = 19), neurology (n = 21), and genetic/congenital (n = 17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with the interpercentile range adjusted for symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, and those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurologic conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurologic conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.

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Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

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The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources impact achievement of this goal. An international multicenter cross-sectional observational study was designed with the participation of 34 PICUs located in urban, suburban, and rural areas of 18 countries. We evaluated how PICUs around the world assessed and managed pain according to the Initiative for Pediatric Palliative Care recommendations, and how human and material resources impacted achievement of this goal. Data was collected for this study from 2016 to 2018 using questionnaires completed by medical doctors and nurses. In this paper, we focus on the indicators related to how pain is managed and assessed. The average achievement of the goal of pain relief across all centers was 72.2% (SD: 21.1). We found a statistically significant trend of more effective pain management scores, routine assessment, proper documentation, and involvement of pain management experts by increasing country income. While there are efforts being made worldwide to improve the knowledge in pain assessment and management, there is a lack of resources to do so appropriately in low-middle-income countries. There is a mismatch between the existing guidelines and policies, which are mainly designed in high income countries, and the resources available in lower resourced environments.

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Resumen La presente es una síntesis de resultados de una investigación mayor, cuyo objetivo principal fue conocer las perspectivas de familias y equipo de salud respecto de la presencia de clowns de hospital trabajando en cuidados paliativos pediátricos en una unidad en Chile. Guiado por un paradigma interpretativo, estrictos criterios de calidad y éticos, la metodología utilizada fue de tipo cualitativo, aplicando las técnicas de recolección de datos de entrevistas en profundidad, análisis de documentos y grupos de discusión. La sección de datos sobre el equipo aquí presentados, se analizó a través de las técnicas análisis de contenido y análisis crítico del discurso. Los resultados indican que la figura del clown es percibida como un mediador y valorada como terapia complementaria, especialmente por las competencias socioemocionales de esos profesionales y el juego que se utiliza como herramienta de intervención. Las conclusiones señalan que las competencias socioemocionales que promueve el clown de hospital son fundamentales para el trabajo en cuidados paliativos.

Abstract This is a synthesis of results of a major research which main objective was to know the perspectives of families and the health team regarding the presence of hospital clowns working in pediatric palliative care in a unit in Chile. Guided by an interpretivist paradigm, strict quality and ethical criteria, the methodology used was qualitative, applying in-depth interviews, document analysis and discussion groups as data collection techniques. The data section presented here about the health team was analyzed through content analysis and critical discourse analysis techniques. The results indicate that the figure of the clown is perceived as a mediator, valued as complementary therapy, especially due to the socio-emotional competences of these professionals and play used as an intervention tool. The conclusions indicate that the socio-emotional competences promoted by the hospital clown are fundamental to work in palliative care.

Resumo A presente é uma síntese de resultados de uma investigação maior, cujo objetivo principal foi conhecer as perspectivas de famílias e equipe de saúde a respeito da presença de clowns de hospital trabalhando em cuidados paliativos pediátricos em uma unidade no Chile. Guiado por um paradigma interpretativo, critérios estritos de qualidade e éticos, a metodologia utilizada foi de tipo qualitativo, aplicando as técnicas de coleta de dados de entrevistas em profundidade, análise de documentos e grupos de discussão. Os dados sobre a equipe aqui apresentados, foram analisados através das técnicas de análise de conteúdo e análise crítica do discurso. Os resultados indicam que a figura do clown é percebida como um mediador e valorizada como terapia complementar, especialmente pelas capacidades sócio-emocionais desses profissionais e o jogo que se utiliza como ferramenta de intervenção. As conclusões apontam que as capacidades sócio-emocionais que promovem o clown de hospital são fundamentais para o trabalho em cuidados paliativos.

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Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standards of care and quality indicators that meet local PPC needs while considering the sociocultural landscape of Latin America and its population.

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El avance de las tecnologías de soporte vital ha aumentado la sobrevida de niños con patologías y secuelas graves, categorizados como NANEAS (Niños y Adolescentes con Necesidades Especiales de Atención en Salud) de mediana y alta complejidad. En el Hospital de Niños Dr. Roberto del Río se organizó un equipo de atención para NANEAS en 2014, que realiza visitas domiciliarias desde 2015 a pacientes médicamente complejos. OBJETIVO: Caracterizar la población atendida en domicilio y la modalidad de atención. PACIENTES Y MÉTODO: Estudio retrospectivo descriptivo mediante revisión de registro clínico electrónico y ficha clínica de NANEAS atendidos en domicilio del 2015 al 2018. RESULTADOS: Se analizaron 581 visitas a 81 pacientes, mediana 8 años, 78% hombres, 64% institucionalizados, 78% con patología neurológica de base, 75% de alta y mediana complejidad según clasificación SOCHIPE. De las visitas, 71% fue en comunas rurales, la mediana de tiempo de viaje 60 minutos y de atención 26 minutos. Un 60% de las visitas se realizó a pacientes con dispositivos médicos. En un 99% asistió pediatra, 33% enfermera y 68% otro profesional, que en 61% correspondió al neuropediatra. CONCLUSIONES: La mayor proporción de pacientes atendidos son de alta y mediana complejidad, usuarios de dispositivos médicos y la mayoría con patología neurológica de base, por lo que resulta fundamental contar con un neurólogo en el equipo interdisciplinario. Las visitas se realizan principalmente a comunas distantes por la dificultad de traslado de estos pacientes. Esta modalidad de atención promueve una mejor calidad de vida para niños y niñas médicamente complejos y para sus familias.

The advancement of life support technologies has increased the survival of children with serious pathologies and sequelae, categorized as NANEAS (Children and Adolescents with Special Health Care Needs) of medium and high complexity. At the Hospital de Niños Dr. Roberto del Río, a care team for NANEAS was organized in 2014, which has made home visits to medically complex patients since 2015. OBJECTIVE: To characterize the population attended at home and the care modality. PATIENTS AND METHOD: Retrospective descriptive study by reviewing the clinical file of NANEAS patients seen at home in this period. RESULTS: 581 visits were analyzed in 81 patients, median 8 years, 78% men, 63% institutionalized, 78% with neurological diseases. 75% were of high and medium complexity according to the SOCHIPE classification. Of the visits, 71% were in rural places, median travel time 60 minutes and direct attention 26 minutes. 60% of the visits were made to patients with medical devices, 99% attended by a pediatrician, 33% a nurse and 68% another professional, who in 61% corresponded to the child neurologist. CONCLUSIONS: The highest proportion of patients seen are of high and medium complexity with medical devices and with underlying neurological pathology, so it is important to have a neurologist in the interdisciplinary team. Many of the visits are made in places distant from the hospital center due to the difficulty of transferring these patients. This modality of care promotes a better quality of life for medically complex children and their families.

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OBJECTIVES: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. STUDY DESIGN: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. CONCLUSIONS: The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals.

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BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.

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RESUMO

Resumen Introducción: Es importante conocer y evaluar la experiencia y el conocimiento de los pediatras de atención primaria del Principado de Asturias (España) sobre los cuidados paliativos pediátricos. Métodos: Se llevó a cabo un estudio descriptivo y transversal mediante un cuestionario dirigido a los pediatras de atención primaria del Principado de Asturias entre mayo y junio de 2018. Resultados: El 77% de los participantes no poseía formación previa y el 100% consideró que sus conocimientos en cuanto al tema no eran adecuados, a pesar de que el 37% había atendido en alguna ocasión a pacientes subsidiarios de este tipo de cuidados. Casi la totalidad de los encuestados (97%) consideraron necesaria la creación de una unidad de cuidados paliativos pediátricos. Conclusiones: El conocimiento del pediatra de atención primaria del Principado de Asturias con respecto a los cuidados paliativos pediátricos es muy escaso en una región en la que no se dispone de una unidad pediátrica exclusiva. Sería interesante aprovechar la gran disposición de este grupo de profesionales para mejorar su formación, además de incorporar la materia en facultades y en la formación del médico interno residente.

Abstract Background: To know and assess the experience and knowledge among primary care pediatricians about pediatric palliative care in the Principality of Asturias (Spain). Methods: A descriptive and cross-sectional analysis was conducted using a survey among primary care pediatricians in the Principality of Asturias between May and June 2018. Results: The majority of participants (77%) did not receive previous training, and 100% considered that their knowledge on the subject was insufficient, although 37% had occasionally attended to palliative care patients. Almost all participants (97%) considered that a pediatric palliative care unit is necessary. Conclusions: The knowledge of primary care pediatricians about pediatric palliative care is deficient in the Principality of Asturias, a region where no exclusive pediatric unit exists. It would be interesting to seize the opportunity to improve the training of these pediatricians, given their great willingness, and to incorporating the subject into colleges and medical intern formation as well.

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