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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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BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.

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[ABSTRACT]. The Global Initiative for Childhood Cancer (GICC) aims to increase the cure rate for children with cancer globally by improving healthcare access and quality. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital (St. Jude), and collaborators have joined efforts to improve outcomes of children with cancer in Latin America and the Caribbean (LAC) using the CureAll framework. In this article, we describe the process of developing regional resources aimed at accelerating the GICC implementation in LAC. In March 2021, PAHO formed regional working groups to develop core projects aligned with CureAll pillars and enablers. Seven working groups emerged from regional dialogues: early detection, nursing, psychosocial, nutrition, supportive care, treatment abandonment, and palliative care. PAHO arranged regular online meetings under the mentorship and support of St. Jude regional/transversal programs and international mentors. Between April and December 2021, 202 multidisciplinary experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots, four technical documents, two virtual courses, one set of epidemiological country profiles, one educational content series for parents/caregivers, and two communication campaigns. The ongoing dialogue and commitment of PAHO, St. Jude, LAC working committees, and international collaborators are essential foundations to successfully accelerate GICC implementation. This is achievable through the development of materials of regional and global relevance. Further research and evaluation are needed to deter- mine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

[RESUMEN]. La Iniciativa Mundial contra el Cáncer Infantil tiene como objetivo aumentar a nivel mundial la tasa de curación del cáncer infantil mediante la mejora del acceso a la atención de salud y de su calidad. La Organización Panamericana de la Salud (OPS), el St. Jude Children’s Research Hospital y los colaboradores han aunado esfuerzos para mejorar los resultados en la población infantil con cáncer en América Latina y el Caribe valiéndose del marco CureAll. En este artículo describimos el proceso de elaboración de recursos regionales destinados a acelerar la aplicación de la Iniciativa Mundial en América Latina y el Caribe. En marzo del 2021, la OPS formó grupos de trabajo regionales para elaborar proyectos básicos que estuvieran en consonancia con los pilares y los elementos facilitadores del CureAll. De los diálogos regionales surgieron siete grupos de trabajo: detección temprana, enfermería, aspectos psicosociales, nutrición, tratamientos de apoyo, abandono del tratamiento y cuidados paliativos. La OPS organizó con regularidad reuniones virtuales en las que se contó con la tutoría y el apoyo de programas regionales o transversales del St. Jude Children’s Research Hospital y de mentores internacionales. Entre abril y diciembre del 2021 hubo 43 reuniones virtuales a las que asistieron 202 expertos multidisciplinarios, con el objetivo de promover el diálogo entre las partes interesadas para mejorar los resultados en materia de cáncer infantil. Se elaboraron catorce productos técnicos: cuatro panoramas regionales, cuatro documentos técnicos, dos cursos virtuales, un conjunto de perfiles epidemiológicos de países, una serie con contenidos educativos para padres y cuidadores y dos campañas de comunicación. El diálogo y el compromiso constantes de la OPS, el St. Jude Children’s Research Hospital, los comités de trabajo de América Latina y el Caribe y los colaboradores internacionales son las bases fundamentales para conseguir que se acelere la aplicación de la Iniciativa Mundial. Esto se puede lograr mediante la elaboración de materiales que resulten pertinentes a nivel regional y mundial. Son necesarias más investigaciones y evaluaciones para determinar el impacto que tienen estas estrategias y recursos en los resultados que se obtienen en el cáncer infantil en América Latina y el Caribe y en otras subregiones.

[RESUMO]. A Iniciativa Global para o Câncer Infantil tem como objetivo aumentar a taxa de cura de crianças com câncer no mundo todo, melhorando o acesso a cuidados e a qualidade da assistência médica. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital (St. Jude) e colaboradores uniram esforços para melhorar o desfecho de crianças com câncer na América Latina e no Caribe (ALC) no âmbito do marco CureAll. Neste artigo, descrevemos o processo de desenvolvimento de recursos regionais com o objetivo de acelerar a implementação da Iniciativa na ALC. Em março de 2021, a OPAS formou grupos de trabalho regionais para desenvolver projetos centrais alinha- dos com os pilares e facilitadores do CureAll. A partir das reuniões de diálogo regionais, foram criados sete grupos de trabalho: detecção precoce, enfermagem, atenção psicossocial, nutrição, cuidados de suporte, abandono do tratamento e cuidados paliativos. A OPAS organizou reuniões virtuais regulares sob a orientação e o apoio dos programas regionais e transversais do St. Jude e de mentores internacionais. Entre abril e dezembro de 2021, 202 especialistas multidisciplinares participaram de 43 reuniões virtuais para promover o diálogo entre as partes interessadas a fim de melhorar os desfechos do câncer infantil. Foram produzidos 14 materiais técnicos: quatro panoramas regionais, quatro documentos técnicos, dois cursos virtuais, um conjunto de perfis epidemiológicos nacionais, uma série de conteúdo educacional para pais e cuidadores e duas campanhas de comunicação. O diálogo e o compromisso contínuos da OPAS, do St. Jude, dos comitês de trabalho da ALC e dos colabora- dores internacionais são bases essenciais para acelerar com sucesso a implementação da Iniciativa Global para o Câncer Infantil. Isso é possível por meio do desenvolvimento de materiais de relevância regional e mundial. São necessárias mais pesquisas e avaliações para determinar o impacto dessas estratégias e recursos nos resultados do câncer infantil na ALC e em outras regiões.

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[ABSTRACT]. Objective. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). Methods. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediat- ric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. Results. The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. Conclusions. Educational materials and anticipatory guidance of PC were considered to be a priority for par- ents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. JudeTM online resource.

[RESUMEN]. Objetivo. Describir la elaboración de material educativo para progenitores y otras personas que cuidan de pacientes pediátricos con cáncer mediante un enfoque sensible a las especificidades culturales, a fin de reducir los obstáculos a la aceptación de los cuidados paliativos (CP). Métodos. La Organización Panamericana de la Salud (OPS), el St. Jude Children's Research Hospital y aso- ciados de América Latina y el Caribe colaboraron en un proyecto de tres fases, que se inició con una encuesta de evaluación de las necesidades de las personas que cuidan de pacientes pediátricos con cáncer en Perú. A partir de estos resultados, un equipo interdisciplinario de expertos en CP pediátricos elaboró un material educativo diseñado y validado por un comité internacional de expertos en CP y comunicación. Resultados. Esta colaboración permitió diseñar una serie de ocho módulos en los que se presentan conceptos clave de los CP pediátricos, como el tratamiento del dolor, la calidad de vida y los cuidados terminales. Estos módulos se diseñaron para reducir la estigmatización asociada a los CP por parte de las personas encargadas de los cuidados, mediante una educación que tiene en cuenta sus especificidades culturales y aborda el bajo nivel de conocimientos básicos de salud de estas personas en América Latina y el Caribe. En los 15 meses transcurridos desde su publicación, se han distribuido por toda América Latina y su contenido se ha descargado 2 825 veces. Conclusiones. Se consideró que los materiales educativos y la orientación preparatoria sobre los CP consti- tuyen una prioridad para los progenitores y otras personas encargadas del cuidado de pacientes pediátricos con cáncer en toda América Latina. Los materiales elaborados mediante este proyecto han sido ampliamente utilizados y están disponibles en el sitio web de la OPS y en el recurso en línea Together by St. JudeTM.

[RESUMO]. Objetivo. Descrever o desenvolvimento de materiais educativos para pais e outros cuidadores de crianças com câncer por meio de uma abordagem sensível à cultura para reduzir as barreiras de aceitação dos cuida- dos paliativos (CP). Métodos. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital e parceiros da América Latina e do Caribe colaboraram em um projeto de três fases, que iniciou com uma pesquisa de avaliação das necessidades dos cuidadores de crianças com câncer no Peru. Com base nos achados dessa pesquisa, uma equipe interdisciplinar de especialistas em CP pediátricos desenvolveu um conteúdo educacional que foi concebido e validado por um comitê internacional de especialistas em CP e comunicação. Resultados. A colaboração resultou no desenvolvimento de uma série de oito módulos que apresenta os prin- cipais conceitos dos CP pediátricos aos cuidadores, incluindo controle da dor, qualidade de vida e cuidados de final de vida. A série foi concebida para reduzir o estigma dos cuidadores em relação aos CP por meio de educação sensível à cultura, abordando os baixos níveis de letramento em saúde entre os cuidadores da América Latina e do Caribe. Nos 15 meses desde seu lançamento, os módulos foram distribuídos em toda a América Latina, tendo sido baixados 2 825 vezes. Conclusões. Os materiais educativos e a orientação prévia sobre CP foram considerados uma prioridade para os pais e outros cuidadores de crianças com câncer em toda a América Latina. Os materiais desenvolvidos por meio desse projeto foram amplamente utilizados e estão disponíveis no site da OPAS e no recurso on-line Together by St. JudeTM.

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OBJECTIVE: To reduce the Quality of Contraceptive Counseling (QCC) scale to a shortened version, coined the QCC-10, for use in measuring client-reported quality of counseling across varied settings. STUDY DESIGN: Secondary psychometric analysis of data collected for validating full versions of the QCC scale (QCC-Mexico, QCC-Ethiopia, QCC-India) and expert voting to reduce the original 26 QCC items to a 10-item set. RESULTS: Exploratory factor analysis revealed a clear one-factor solution for the QCC-10 in each country. Factor loadings were consistently >0.4 for all but two items; both were retained due to their importance to content validity. Internal consistency reliability of the QCC-10 was α=0.8 in Mexico and Ethiopia, and α=0.5 in India. QCC-10 scores were highly and positively correlated with a dichotomous overall measure of client experience and intention to initiate selected method, indicating convergent validity. CONCLUSION: The QCC-10 offers an innovative, cross-cultural approach to measuring quality in contraceptive counseling. Future efforts should examine its validity and reliability for use globally, with additional exploration of how to best measure negative aspects of care, particularly in India where such items were problematic. Thoughtful, nuanced measurement of client perspectives on their counseling experiences, available via the QCC-10, is critical to monitoring and improving quality of person-centered care and the fulfilment of human rights in contraceptive services worldwide. IMPLICATIONS: Cross-cultural, person-centered measures of quality in contraceptive counseling, such as the QCC-10, can help inform efforts to improve quality of family planning services and fulfillment of human rights. Future work will continue to explore the validity of this 10-item measure for use in various settings.

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ABSTRACT Objective. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). Methods. The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. Results. The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. Conclusions. Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource.

RESUMEN Objetivo. Describir la elaboración de material educativo para progenitores y otras personas que cuidan de pacientes pediátricos con cáncer mediante un enfoque sensible a las especificidades culturales, a fin de reducir los obstáculos a la aceptación de los cuidados paliativos (CP). Métodos. La Organización Panamericana de la Salud (OPS), el St. Jude Children's Research Hospital y asociados de América Latina y el Caribe colaboraron en un proyecto de tres fases, que se inició con una encuesta de evaluación de las necesidades de las personas que cuidan de pacientes pediátricos con cáncer en Perú. A partir de estos resultados, un equipo interdisciplinario de expertos en CP pediátricos elaboró un material educativo diseñado y validado por un comité internacional de expertos en CP y comunicación. Resultados. Esta colaboración permitió diseñar una serie de ocho módulos en los que se presentan conceptos clave de los CP pediátricos, como el tratamiento del dolor, la calidad de vida y los cuidados terminales. Estos módulos se diseñaron para reducir la estigmatización asociada a los CP por parte de las personas encargadas de los cuidados, mediante una educación que tiene en cuenta sus especificidades culturales y aborda el bajo nivel de conocimientos básicos de salud de estas personas en América Latina y el Caribe. En los 15 meses transcurridos desde su publicación, se han distribuido por toda América Latina y su contenido se ha descargado 2 825 veces. Conclusiones. Se consideró que los materiales educativos y la orientación preparatoria sobre los CP constituyen una prioridad para los progenitores y otras personas encargadas del cuidado de pacientes pediátricos con cáncer en toda América Latina. Los materiales elaborados mediante este proyecto han sido ampliamente utilizados y están disponibles en el sitio web de la OPS y en el recurso en línea Together by St. Jude™.

RESUMO Objetivo. Descrever o desenvolvimento de materiais educativos para pais e outros cuidadores de crianças com câncer por meio de uma abordagem sensível à cultura para reduzir as barreiras de aceitação dos cuidados paliativos (CP). Métodos. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital e parceiros da América Latina e do Caribe colaboraram em um projeto de três fases, que iniciou com uma pesquisa de avaliação das necessidades dos cuidadores de crianças com câncer no Peru. Com base nos achados dessa pesquisa, uma equipe interdisciplinar de especialistas em CP pediátricos desenvolveu um conteúdo educacional que foi concebido e validado por um comitê internacional de especialistas em CP e comunicação. Resultados. A colaboração resultou no desenvolvimento de uma série de oito módulos que apresenta os principais conceitos dos CP pediátricos aos cuidadores, incluindo controle da dor, qualidade de vida e cuidados de final de vida. A série foi concebida para reduzir o estigma dos cuidadores em relação aos CP por meio de educação sensível à cultura, abordando os baixos níveis de letramento em saúde entre os cuidadores da América Latina e do Caribe. Nos 15 meses desde seu lançamento, os módulos foram distribuídos em toda a América Latina, tendo sido baixados 2 825 vezes. Conclusões. Os materiais educativos e a orientação prévia sobre CP foram considerados uma prioridade para os pais e outros cuidadores de crianças com câncer em toda a América Latina. Os materiais desenvolvidos por meio desse projeto foram amplamente utilizados e estão disponíveis no site da OPAS e no recurso on-line Together by St. Jude™.

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ABSTRACT The Global Initiative for Childhood Cancer (GICC) aims to increase the cure rate for children with cancer globally by improving healthcare access and quality. The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital (St. Jude), and collaborators have joined efforts to improve outcomes of children with cancer in Latin America and the Caribbean (LAC) using the CureAll framework. In this article, we describe the process of developing regional resources aimed at accelerating the GICC implementation in LAC. In March 2021, PAHO formed regional working groups to develop core projects aligned with CureAll pillars and enablers. Seven working groups emerged from regional dialogues: early detection, nursing, psychosocial, nutrition, supportive care, treatment abandonment, and palliative care. PAHO arranged regular online meetings under the mentorship and support of St. Jude regional/transversal programs and international mentors. Between April and December 2021, 202 multidisciplinary experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots, four technical documents, two virtual courses, one set of epidemiological country profiles, one educational content series for parents/caregivers, and two communication campaigns. The ongoing dialogue and commitment of PAHO, St. Jude, LAC working committees, and international collaborators are essential foundations to successfully accelerate GICC implementation. This is achievable through the development of materials of regional and global relevance. Further research and evaluation are needed to determine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

RESUMEN La Iniciativa Mundial contra el Cáncer Infantil tiene como objetivo aumentar a nivel mundial la tasa de curación del cáncer infantil mediante la mejora del acceso a la atención de salud y de su calidad. La Organización Panamericana de la Salud (OPS), el St. Jude Children's Research Hospital y los colaboradores han aunado esfuerzos para mejorar los resultados en la población infantil con cáncer en América Latina y el Caribe valiéndose del marco CureAll. En este artículo describimos el proceso de elaboración de recursos regionales destinados a acelerar la aplicación de la Iniciativa Mundial en América Latina y el Caribe. En marzo del 2021, la OPS formó grupos de trabajo regionales para elaborar proyectos básicos que estuvieran en consonancia con los pilares y los elementos facilitadores del CureAll. De los diálogos regionales surgieron siete grupos de trabajo: detección temprana, enfermería, aspectos psicosociales, nutrición, tratamientos de apoyo, abandono del tratamiento y cuidados paliativos. La OPS organizó con regularidad reuniones virtuales en las que se contó con la tutoría y el apoyo de programas regionales o transversales del St. Jude Children's Research Hospital y de mentores internacionales. Entre abril y diciembre del 2021 hubo 43 reuniones virtuales a las que asistieron 202 expertos multidisciplinarios, con el objetivo de promover el diálogo entre las partes interesadas para mejorar los resultados en materia de cáncer infantil. Se elaboraron catorce productos técnicos: cuatro panoramas regionales, cuatro documentos técnicos, dos cursos virtuales, un conjunto de perfiles epidemiológicos de países, una serie con contenidos educativos para padres y cuidadores y dos campañas de comunicación. El diálogo y el compromiso constantes de la OPS, el St. Jude Children's Research Hospital, los comités de trabajo de América Latina y el Caribe y los colaboradores internacionales son las bases fundamentales para conseguir que se acelere la aplicación de la Iniciativa Mundial. Esto se puede lograr mediante la elaboración de materiales que resulten pertinentes a nivel regional y mundial. Son necesarias más investigaciones y evaluaciones para determinar el impacto que tienen estas estrategias y recursos en los resultados que se obtienen en el cáncer infantil en América Latina y el Caribe y en otras subregiones.

RESUMO A Iniciativa Global para o Câncer Infantil tem como objetivo aumentar a taxa de cura de crianças com câncer no mundo todo, melhorando o acesso a cuidados e a qualidade da assistência médica. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital (St. Jude) e colaboradores uniram esforços para melhorar o desfecho de crianças com câncer na América Latina e no Caribe (ALC) no âmbito do marco CureAll. Neste artigo, descrevemos o processo de desenvolvimento de recursos regionais com o objetivo de acelerar a implementação da Iniciativa na ALC. Em março de 2021, a OPAS formou grupos de trabalho regionais para desenvolver projetos centrais alinhados com os pilares e facilitadores do CureAll. A partir das reuniões de diálogo regionais, foram criados sete grupos de trabalho: detecção precoce, enfermagem, atenção psicossocial, nutrição, cuidados de suporte, abandono do tratamento e cuidados paliativos. A OPAS organizou reuniões virtuais regulares sob a orientação e o apoio dos programas regionais e transversais do St. Jude e de mentores internacionais. Entre abril e dezembro de 2021, 202 especialistas multidisciplinares participaram de 43 reuniões virtuais para promover o diálogo entre as partes interessadas a fim de melhorar os desfechos do câncer infantil. Foram produzidos 14 materiais técnicos: quatro panoramas regionais, quatro documentos técnicos, dois cursos virtuais, um conjunto de perfis epidemiológicos nacionais, uma série de conteúdo educacional para pais e cuidadores e duas campanhas de comunicação. O diálogo e o compromisso contínuos da OPAS, do St. Jude, dos comitês de trabalho da ALC e dos colaboradores internacionais são bases essenciais para acelerar com sucesso a implementação da Iniciativa Global para o Câncer Infantil. Isso é possível por meio do desenvolvimento de materiais de relevância regional e mundial. São necessárias mais pesquisas e avaliações para determinar o impacto dessas estratégias e recursos nos resultados do câncer infantil na ALC e em outras regiões.

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Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.

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BACKGROUND: Monitoring clients' experiences with contraceptive care is vital to inform quality improvement efforts and ensure fulfillment of individuals' human rights. The Quality of Contraceptive Counseling (QCC) Scale is a previously validated scale that comprehensively measures individuals' experiences receiving counseling in three subscales: Information Exchange, Interpersonal Relationship, and Disrespect and Abuse. We sought to better understand the correlation of client, provider, and visit factors with client-reported quality of contraceptive counseling in the public sector in two Mexican states using the QCC Scale. METHODS: This cross-sectional survey study used the QCC Scale total score and subscale scores as outcome variables. Explanatory variables included clients' age, LGBTTTIQ status, relationship status, number of children, education, and occupation; providers' gender and type of provider; and the reason for visit. Linear and logistic regression models assessed bivariate associations. Multivariable, multilevel mixed-effects models with clinic as a random effect were fit. All models used complete cases (n = 470). RESULTS: In the multilevel mixed-effects analyses, patients aged 35+ years reported worse Information Exchange (coefficient - 0.29, p = 0.01). Clients receiving care post-partum reported worse Information Exchange (coefficient - 0.25, p = 0.02) and worse total scores (coefficient - 0.15, p = 0.04) compared to clients seeking contraceptive information or methods. Clients who had 1+ children reported better Information Exchange (coefficient 0.21, p = 0.01) than those with no children. Though Disrespect and Abuse subscale scores were overall high (indicating high quality of care), we found a significant association between age and report of such negative experiences: clients in increasing age categories had increasingly higher adjusted odds of reporting no disrespect and abuse (aORs compared to the youngest group were 2.50 for those aged 19-24 years, p = 0.04; 4.53 for those 25-34 years, p = 0.01; and 6.11 for those 35+ years, p = 0.01.) CONCLUSIONS: Our findings align with previous results that younger clients have lower adjusted odds of reporting high-quality services in Mexico. There is a need for continued work supporting youth-friendly services in Mexico, and efforts should aim to ensure zero tolerance for disrespectful or coercive provider behaviors, such as pressuring or scolding clients. Improvements are also needed to ensure quality in counseling for post-partum clients, those aged 35+ years, and those without children.

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Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.

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La posturografía permite evaluar la integración de los tres sistemas sensoriales que intervienen en el control postural y del equilibrio: el vestibular, el visual y el somatosensorial (Ronda, 2002). La presente investigación describe y analiza los resultados de la posturografía en niños entre seis y once años con pérdida auditiva quienes no han compensado su edad auditiva con respecto a su edad cronológica. Fueron evaluados dos grupos: el grupo control conformado por 32 niños con sensibilidad auditiva periférica normal y el grupo de estudio, conformado por 16 niños con pérdida auditiva, quienes usan amplificación auditiva y asisten a la Fundación CINDA para terapia auditiva con el fin de cerrar el GAP existente entre su edad cronológica y su edad auditiva. En la evaluación audiológica se aplicó anamnesis, revisión de historia clínica, audiometría tonal para la verificación de la sensibilidad auditiva periférica y posturografía, con un equipo de la marca NeuroCom, se realizaron las siguientes pruebas: Integración sensorial en balance-modificado (CTSIB), límites de estabilidad (LOS) y distribución de peso (WHT). En los resultados se encontraron diferencias estadísticamente significativas entre los dos grupos de estudio para las tres pruebas en distintas variables. Como conclusión se pudo determinar que existen diferencias estadísticamente significativas entre el grupo control y el grupo de estudio. La intervención con terapia ocupacional influenció positivamente los resultados en la posturografía, sobre todo en el grupo de 10 a 11 años. Se observaron diferencias sucesivas en los tres grupos de edad, indicando un componente de neuromaduración.

Posturography allows evaluating the integration of the three sensory systems involved in postural and balance control: vestibular, visual and somatosensory (Ronda, 2002). This research describes and analyzes the results of posturography in children between six and eleven years old with hearing loss who have not compensated their hearing age with respect to their chronological age. Two groups were evaluated: the control group made up of 32 children with normal peripheral hearing sensitivity and the study group, made up of 16 children with hearing loss, who use hearing amplification and attend the CINDA Foundation for hearing therapy in order to close the hearing loss. GAP between your chronological age and your hearing age. In the audiological evaluation, anamnesis, review of clinical history, tonal audiometry were applied to verify peripheral hearing sensitivity and posturography, with a NeuroCom brand equipment, the following tests were performed: Modified-balance sensory integration (CTSIB), stability limits (LOS) and weight distribution (WHT). In the results, statistically significant differences were found between the two study groups for the three tests in different variables. In conclusion, it was possible to determine that there are statistically significant differences between the control group and the study group. The occupational therapy intervention positively influenced the results in posturography, especially in the 10 to 11-year-old group. Successive differences were observed in the three age groups, indicating a neuromaturation component.

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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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Hutchinson-Gilford progeria syndrome (HGPS) is a rare congenital disease caused by mutations in the LMNA gene. Children with HGPS are phenotypically characterized by lipodystrophy, short height, low body weight, scleroderma, reduced joint mobility, osteolysis, senile facial features, and cardiovascular compromise that usually lead to death. We aimed to describe the case of a patient who reached above-average age expectancy for children with HGPS in Latin America and describe the clinical and molecular characteristics of the patient. A 14-year-old female patient was presented with progeria-compatible phenotypic characteristics. HGPS was confirmed via LMNA gene sequencing that detected a heterozygous c.1824C>T (p.Gly608Gly) mutation. The primary aim is to describe the HGPS case, the molecular gene mutation finding, and make a short review of the limited available treatment options for children with HGPS. Such as the farnesyl transferase inhibitors in conjunction with other pharmacological therapies that have insinuated improvement in health, and survival rate.

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BACKGROUND: Client-centered contraceptive counseling is critical to meeting demand for contraception and protecting human rights. However, despite various efforts to optimize counseling, little is known outside of the United States about what individuals themselves value in counseling. In the present study we investigate women's preferences for contraceptive counseling in Mexico to inform efforts to improve service quality. METHODS: We conducted applied qualitative research, using six focus group discussions with 43 women in two cities in Mexico with distinct sizes and sociocultural contexts (Mexico City and Tepeji del Río, Hidalgo) to assess contraceptive counseling preferences. We used a framework approach to thematically code and analyze the transcriptions from focus groups. RESULTS: Consistent with quality of care and human rights frameworks for family planning service delivery, participants expressed a desire for privacy, confidentiality, informed choice, and respectful treatment. They expanded on usual concepts of respectful care within family planning to include avoidance of sexual assault or harassment-in line with definitions of respectful care in maternal health. In contrast to counseling approaches with method effectiveness as the organizing principle, participants preferred counseling centered on personalized assessments of needs and preferences. Many, particularly older, less educated women, highly valued hearing provider opinions about what method they should use, based on those personalized assessments. Participants highlighted the necessity of clinical assessments or physical exams to inform provider recommendations for appropriate methods. This desire was largely due to beliefs that more exhaustive medical exams could help prevent negative contraceptive outcomes perceived to be common, in particular expulsion of intra-uterine devices (IUDs), by identifying methods compatible with a woman's body. Trust in provider, built in various ways, was seen as essential to women's contraceptive needs being met. CONCLUSIONS: Findings shed light on under-represented perspectives of clients related to counseling preferences. They highlight specific avenues for service delivery improvement in Mexico to ensure clients experience privacy, confidentiality, informed choice, respectful treatment, and personalized counseling-including around reasons for higher IUD expulsion rates postpartum-during contraceptive visits. Findings suggest interventions to improve provider counseling should prioritize a focus on relationship-building to foster trust, and needs assessment skills to facilitate personalization of decision-making support without imposition of a provider's personal opinions. Trust is particularly important to address in family planning given historical abuses against women's autonomy that may still influence perspectives on contraceptive programs. Findings can also be used to improve quantitative client experience measures.

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