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In Latin America (LA), 40-50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.

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Resumen Objetivo: Describir la percepción que tienen sobre su calidad de vida las personas en situación de enfermedad crónica: diabetes e hipertensión arterial, en una institución de segundo nivel en el Programa de Promoción de la salud y Prevención de la enfermedad, en Barranquilla (Colombia). Materiales y métodos: Estudio descriptivo. Los informantes fueron en total 6 personas, conformados por 2 hombres con diagnóstico de diabetes mellitus y 4 mujeres, 2 de ellas con hipertensión arterial y 2 con diabetes mellitus. Para el análisis de los datos se empleó la técnica análisis de contenido. Los datos fueron sistematizados y procesados, mediante la herramienta Atlas T. Y los resultados se contrastaron con el modelo de calidad de vida en sobrevivientes del cáncer, propuesto por Betty Ferrell. Resultados: Las personas en situación de enfermedad crónica no trasmisibles, diabetes e hipertensión arterial, perciben su calidad de vida en las siguientes dimensiones: física: descrita con limitaciones y malestar; en la social: aislamiento, dependencia, alteración función sexual; en la psicológica: ansiedad, depresión desesperanza e incertidumbre; espiritual: fortaleza, fe, Dios sana. Conclusión: El profesional de enfermería y quienes lideran los programa de promoción de la salud y prevención de la enfermedad deben brindar un cuidado de manera holística, en el que tengan en cuenta todas las dimensiones de las personas que conviven con una enfermedad crónica no trasmisible, lo cual redundará en una mejor calidad de vida.

Abstract Objective: to describe the perception of people with chronic disease: diabetes and high blood pressure, compared to their quality of life, in a second-tier institution, the program of Health Promotion and Disease Prevention, in Barranquilla (Colombia). Materials and methods: A descriptive approach. The informants were a total of 6 people, made up of two men diagnosed with diabetes mellitus and 4 women, 2 of them with hypertension, 2 diabetes mellitus. For data analysis, content analysis technique (14) was used. The data were systematized and processed through the Atlas tool T. The theoretical basis of is research is the model of health as expanding consciousness for the care of people in chronic disease, proposed by the nurse Margaret Newman and model results with quality of life in cancer survivors, proposed by Betty Ferrell were contrasted. Results: People in situation of chronic non-communicable disease, diabetes and hypertension, perceive their quality of life dimensions: physical: limitations and discomfort described; in the social: isolation, dependency, impaired sexual function; psychological: anxiety, hopelessness, depression and uncertainty; spiritual dimension: strength, faith, God heals. Conclusion: It is important that the nurse and the multidisciplinary team led Programs Health Promotion and Prevention disease, provide care where holistically taking into account all dimensions of people living with a disease chronic non transmissible, which will result in a better quality of life.

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Objetivo: Describir y comparar el soporte social percibido por las personas con enfermedad crónica y sus cuidadores familiares. Materiales y métodos: Estudio de tipo descriptivo, comparativo, de corte transversal desarrollado con una muestra de 1.257 personas con enfermedad crónica y 1.184 cuidadores familiares en las cinco macro regiones geográficas de Colombia entre los años 2012 - 2014. Resultados: Las condiciones de las personas con enfermedad crónica y de los cuidadores familiares participantes en el estudio, reflejan predominio femenino con niveles de escolaridad medio-bajo, y con residencia en la zona urbana. La mitad de los participantes tienen pareja estable y trabajo remunerado. La situación de enfermedad crónica se presenta para la mayoría, por más de un año. La familia es la principal fuente de apoyo social y a pesar de ello, la cuarta parte de personas con enfermedad crónica perciben que son una carga para sus familias y la tercera parte de los cuidadores familiares, percibe sobrecarga intensa con el cuidado. Se reporta un nivel adecuado de soporte social, en especial en las regiones Amazonía y Orinoquía. Conclusiones: Las personas con enfermedad crónica y sus cuidadores familiares tienen niveles de soporte social percibido heterogéneos en las diferentes macro regiones geográficas de Colombia. El soporte social percibido es insuficiente para respaldar la experiencia del cuidado de la salud de estas personas.

Objective: To describe and compare the social support perceived by people with chronic disease (CD) and their family caregivers (FC) in Colombia. Materials and methods: This is a descriptive, comparative cross-sectional study developed with a sample of 1257 people with CD and 1184 FC in the five macro geographical regions of Colombia between 2012 and 2014. Results: The conditions of participants with CD and their FC reflects female predominance with medium-low levels of schooling who live in the urban area. Half of the participants have a regular partner as well as a paid job. The situation of chronic disease occurs mostly for over a year. The family is the main source of social support and yet a quarter of people with CD perceive to be a burden to their families and the third of the FC perceived intense care overload. An adequate level of social support is reported, especially in the Amazon and Orinoco regions. Conclusions: People with chronic illness and their family caregivers have heterogeneous levels of perceived social support in the different macro geographical regions of Colombia. The perceived social support is insufficient to support the experience of health care of these people.

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Objetivo: describir las características socio demográficas y la sobrecarga en cuidadoras colombianas, y explorar la asociación existente entre la sobrecarga, con las variables de edad, escolaridad, estrato, tiempo como cuidadora y número de horas que cuida al día. Materiales y Métodos: estudio descriptivo y de asociación con 1.183 cuidadoras de las cinco regiones de Colombia. Se midieron las variables sociodemográficas y la sobrecarga con el cuidado a partir de la aplicación de la Encuesta para la Caracterización del Cuidador Familiar de una Persona con Enfermedad Crónica y la Escala de Sobrecarga del Cuidador de Zarit. Resultados: el rango de edad de las cuidadoras que predomina está entre los 36 a 59 años, el nivel educativo es heterogéneo, la mitad de las cuidadoras se dedica al hogar como ocupación principal, religión predominante es católica. El 80 % cuida a la persona con enfermedad crónica desde el momento de su diagnóstico. Más de la mitad del grupo de participantes presentó ausencia de sobrecarga con el cuidado. La edad, el tiempo como cuidadora y el estrato socioeconómico, tienen una asociación estadísticamente significativa pero de magnitud débil con la sobrecarga de cuidado. No se encontró una asociación significativa entre la escolaridad de las cuidadoras. Conclusiones: se encontraron asociaciones de magnitud leve entre la edad, el estrato socioeconómico, el tiempo como cuidadora y la sobrecarga del cuidado; es vital consolidar un modelo que explique las variables que inciden en la sobrecarga de cuidadoras de personas con enfermedad crónica en el país.

Objective: to describe the sociodemographic characteristics and overload on Colombian female caregivers, and to explore the association between overload, with the variables of age, education, stratus, time as a caregiver and number of hours care per day. Materials and Methods: adescriptive study and association with 1183 caregivers from five regions of Colombia. Sociodemographic and care overload variables were measured through the administration of the Encuesta para la Caracterización del Cuidador Familiar de una Persona con Enfermedad Crónica and Escala de Sobrecarga del Cuidador de Zarit. Results: the age range of predominant caregivers is between 36 to 59 years, the educational level is heterogeneous, half of the caregivers is dedicated to the home as their main occupation, the predominant religion is Catholic. 80% care for the person with chronic illness from the time of diagnosis. More than half the group of participants presented absence of overload with care. Age, time as a caregiver and socioeconomic status, have a statistically significant but weak magnitude care overload association. No significant association between schooling of caregivers found. Conclusions: mild magnitude associations between age, socioeconomic stratum, time as a caregiver and care overload found, It is vital to consolidate a model that explains the variables that affect the overload of caregivers of persons with chronic diseases in the country.

Objetivo: descrever as características sociodemográficas e sobrecarregar cuidadores colombianos, e explorar a associação entre a sobrecarga, com as variáveis idade, escolaridade, estrato, o tempo como um cuidador e do número de horas de cuidados por dia. Materiais e Métodos: estudo descritivo e de associação com os cuidadores 1183 uma das cinco regiões da Colômbia. variáveis sociodemográficas foram medidos e sobrecarga com cuidado a partir da aplicação do Encuesta para la Caracterización del Cuidador Familiar de una Persona con Enfermedad Crónica e do Escala de Sobrecarga del Cuidador de Zarit. Resultados: a faixa etária dos cuidadores predomina é entre 36 a 59 anos, o nível educacional é heterogêneo, metade dos cuidadores é dedicado à casa como sua principal ocupação, religião predominante é a católica. 80% de cuidados para a pessoa com doença crónica a partir do momento do diagnóstico. Mais da metade do grupo de participantes apresentaram ausência de sobrecarga com cuidado. Idade, tempo como um cuidador e nível socioeconômico, têm uma associação estatisticamente significativa, porém fraca sobrecarga de cuidados de magnitude. Nenhuma associação significativa entre a escolaridade dos cuidadores encontrados. Conclusões: associações leves magnitude entre idade, nível socioeconômico, o tempo como uma sobrecarga do cuidador e cuidados encontrado; É vital para consolidar um modelo que explica as variáveis que afetam cuidadores sobrecarregar as pessoas com doença crônica no país.

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El abordaje de la enfermedad crónica implica contar con un esquema de mediciones objetivas, pertinentes, precisas, confiables y costo efectivas. Objetivo. Establecer el sistema de indicadores requeridos para medir la carga familiar del cuidado de personas con enfermedad crónica. Metodología. Reflexión derivada de investigación a partir del ôModelo para la Disminución de la Carga del Cuidado de la Enfermedad Crónicaõ (MDCC- EC) y con base en la Guía Universidad Nacional de Colombia -Sistema de Mejor Gestión (UN SIMEGE), en la que se construyen y formulan los indicadores para la medición y seguimiento de los procesos tendientes a disminuir la carga familiar del cuidado de la enfermedad crónica. Resultados: La metodología planteada en la Guía UN SIMEGE permitió presentar indicadores para medir cinco características asociadas con la carga familiar del cuidado de la enfermedad crónica que estßn descritas como parte fundamental del MDCC-EC. Estas incluyen el acceso, la continuidad, la seguridad, el fortalecimiento de la propia capacidad y el soporte social con el uso de las tecnologías de información y comunicación (TIC) Conclusiones: Los 19 indicadores establecidos permiten en conjunto medir la carga familiar del cuidado de la enfermedad crónica. Esta medición es necesaria e indispensable para conocer, entender, orientar y corregir la ejecución de las estrategias, acciones y resultados de la aplicación del MDCC-EC en lo referente a las personas con enfermedad crónica y sus familias. Comunicar los resultados de la consecución de las metas para saber cómo se plasman los planteamientos teórico conceptuales del MDCC-EC, dando cumplimiento a los requisitos de los usuarios con el servicio permite, de una parte, evaluar y de otra, continuar agregando valor al sistema de salud...

Addressing chronic illness implies having an outline of objective, pertinent, accurate, reliable, and cost-effective measures. Objective: This paperÆs objective is to establish a system of indicators required to measure the relative cost of family care of people with chronic disease. Metodology: Starting with the ôModel for the Reduction of Care Burden of Chronic Diseaseõ MDCC- EC, and based on the UN SIMEGE Guide, for the development of indicators in order to measure and monitor the processes aimed at reducing the cost of family care of chronic disease. Results: The methodology proposed in the UN SIMEGE Guide allowed the construction of indicators for five characteristics associated with family care for people with chronic disease. These characteristics are described as a fundamental component of the MDCC-EC and they include:The care access, care continuity, care safety, the self-care capacity and the social support with the use of Information and Communication Technologies (ICTs). Conclusions: The 19 indicators established allow the measurement of the cost of family care for people with chronic disease. This measurement is necessary and indispensable to know, understand, guide and correct implementation of strategies, actions and results of the implementation of MDCC-EC in relation to ill people and their families. These indicators are essential in order to communicate the results of the fulfillment of the goals for how the conceptual theoretical approaches of the MDCC-EC are met in compliance with the requirements of users of services and to continue improving the given services adding value to them...

Na abordagem da doença crônica é necesario utilizar o esquema de medidas objetivas, relevantes, precisas, confißveis e custo efetivo. Objetivo. Estabelecer o sistema de indicadores necessßrios para medir o peso familiar relacinado com o cuidado das pessoas com doenças crônicas. Metodologia. A reflexão é decorrente do "Modelo de Custo Reduzido Chronic Disease Cuidado" (MDCC- CE) além de ter como base a Guia da Universidade Nacional da Colômbia Melhor -Sistema de Gestão (SIMEGE ONU), na qual são construídos os indicadores para medir e observar os processos que visam a redução dos encargos famíliares no cuidado da doença crónica. Resultados: A metodologia proposta na Guia Um SIMEGE possibilitou mostrar indicadores para medir cinco características que permitem medir a sobrecarga familiar de cuidados para doenças crônicas que são descritos como uma parte fundamental do MDCC-CE. Estes incluem o acesso, continuidade, segurança, capacitação e apoio social em si com o uso de tecnologias de informação e comunicação (TIC). Conclusões: Os 19 indicadores estabelecidos permitem medir a carga familiar nos cuidados da doença crónica. Esta medida é necessßria e indispensßvel para conhecer, compreender, orientar e corrigir a implementação de estratégias, ações e resultados na pratica do MDCC-CE em relação às pessoas com doenças crônicas e suas famílias. Comunicar os resultados da aquisição das metas permite conhecer como as abordagens teóricas conceituais do MDCC-CE responde às exigências dos usußrios com o serviço, permitindo tanto a avaliação como adicionar valor ao sistema de saúde...

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Objetivo Determinar la habilidad de cuidado de cuidadores familiares de niños con cáncer. Métodos Estudio descriptivo exploratorio de abordaje cuantitativo. Se tomó una muestra de 85 cuidadores que una vez caracterizados respondieron el inventario de habilidad de cuidado adaptado para el cuidador familiar de personas con enfermedad crónica no trasmisible. Resultados Se caracterizan los cuidadores familiares por edad, género, nivel socioeconómico, escolaridad, relación con el familiar cuidado, elementos de soporte social, tiempo de experiencia y carga del cuidado generada por la discapacidad del receptor. Se revisó el nivel total de habilidad de cuidado y el de cada una de sus dimensiones: conocimiento, valor y paciencia. Conclusiones Los cuidadores principales son en su mayoría mujeres, madres de los niños con cáncer. El 70,6 % de ellas carece de la habilidad suficiente para cuidar a sus hijos con cáncer, y 31,8 % tienen un nivel mínimo de habilidad lo que sumado a las demandas de afrontar la realidad de tener un hijo con cáncer, puede ser devastador para los cuidadores familiares y generar alto riesgo para los niños a su cargo.(AU)

Objective To describe the caring ability of family caregivers of children with cancer. Method This is a descriptive, exploratory study with a quantitative approach. A sample of 85 family caregivers of children with cancer was taken. After a characterization, they respondd to the Caring Ability Inventory adapted for family caregivers of people with chronic non-communicable disease. Results The family caregivers werecharacterized by age, gender, socioeconomic level, education level, family relationship with the care receiver, social support, time of experience, and burden of care generated by the degree of the receiver's illness. The overall caring ability was described, as well as the ability of each dimension, including knowledge, courage, and patience. Conclusions The principal family caregivers of children with cancer were mainly the mothers of the children with cancer. 70.6 % of them do not possess sufficient ability to take care of their children with cancer. 31.8 % of the group had a lower ability level. This finding, together with the demands of coping with the fact of having a child with cancer, can be a great burden to family caregivers and generate risk for the ill children under their care.(AU)

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Objective To describe the caring ability of family caregivers of children with cancer. Method This is a descriptive, exploratory study with a quantitative approach. A sample of 85 family caregivers of children with cancer was taken. After a characterization, they respondd to the Caring Ability Inventory adapted for family caregivers of people with chronic non-communicable disease. Results The family caregivers werecharacterized by age, gender, socioeconomic level, education level, family relationship with the care receiver, social support, time of experience, and burden of care generated by the degree of the receiver's illness. The overall caring ability was described, as well as the ability of each dimension, including knowledge, courage, and patience. Conclusions The principal family caregivers of children with cancer were mainly the mothers of the children with cancer. 70.6 % of them do not possess sufficient ability to take care of their children with cancer. 31.8 % of the group had a lower ability level. This finding, together with the demands of coping with the fact of having a child with cancer, can be a great burden to family caregivers and generate risk for the ill children under their care.

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Objetivo: Desarrollar la encuesta de caracterización para el cuidado de una persona con enfermedad crónica, a fin de utilizarla en el contexto colombiano. Método: Estudio metodológico que, a partir de la revisión de una propuesta de instrumento de caracterización anterior, y como parte del programa para la disminución de la carga de la enfermedad crónica en Colombia, determinó la información básica requerida para valorar a una persona con enfermedad crónica. Se desarrolló en tres fases: 1) revisión de la literatura relacionada con la provisión de cuidado a personas con enfermedad crónica; 2) definición de la encuesta de caracterización para el cuidado de una persona con enfermedad crónica, que se denominó GCPC-UN-P, y 3) validez aparente, que consistió en una prueba de campo con 1850 personas con enfermedad crónica, y una validez con expertos. Resultados: Se obtuvo la encuesta de caracterización GCPC-UN-P de 22 ítems que indagan acerca de tres dimensiones: las condiciones del paciente y su perfil sociodemográfico, la percepción de carga y apoyo, y los medios de información y comunicación. A la validez aparente la totalidad de los ítems son evaluados como comprensibles, claros, coherentes, suficientes, relevantes y esenciales. Conclusiones: La encuesta GCPC-UN-P cuenta con las variables necesarias para la caracterización de una persona con enfermedad crónica en el contexto colombiano.

Objective: To develop the characterization survey to define the care of a person with chronic disease, in order to use it in the Colombian context. Method: Methodological study that determined the basic information required to assess a person with chronic disease after reviewing a previous proposal of a characterization tool and as part of the program for reducing the burden of chronic disease in Colombia. It was developed in three phases: 1) Review of the literature related to the provision of care for people with chronic disease 2) definition of the characterization survey for the care of a person with chronic disease, which was named GCPC-UN-P, and 3) Apparent validity, which consisted of a field trial with 1850 people with chronic disease, and validity with experts. Results: It was obtained a characterization survey GCPC-UN-P of 22 items that ask about three dimensions: patient conditions and socio-demographic profile, perceived burden and support, and communication media. Regarding the apparent validity all items are evaluated as understandable, clear, coherent, adequate, relevant and essential. Conclusions: GCPC-UN-P has the necessary survey for the characterization of a person with chronic illness in the Colombian context variables.

Objetivo: Desenvolver o inquérito de caracterização para o cuidado de uma pessoa com doença crónica, a fim de utilizá-la no contexto colombiano. Método: Estudo metodológico que, a partir da revisão de proposta de instrumento de caracterização anterior, e como parte do programa para diminuição da carga da doença crónica na Colombia, determinou a informação básica requerida para valorar uma pessoa com doença crónica. Desenvolveu-se em tres fases: 1) revisão da literatura relacionada com a provisão de cuidado a pessoas com doença crónica; 2) definição do inquérito de caracterização para o cuidado de uma pessoa com doença crónica, nomeada GCPC-UN-P, e 3) validez aparente, que consistiu em um teste de campo com 1850 pessoas com doença crónica, e uma validez com peritos. Resultados: Obteve-se o inquérito de caracterização GCPC-UN-P de 22 itens que investigava acerca de tres dimensões: as condições do paciente e seu perfil sociodemográfico, a percepção de carga e apoio, e os meios de informação e comunicação. A validez aparente a totalidade dos itens são avaliados como compreensíveis, claros, coerentes, suficientes, relevantes e essen-ciais. Conclusões: O inquérito GCPC-UN-P conta com as variáveis necessárias para a caracterização de uma pessoa com doença crónica no contexto colombiano.

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Objetivo: identificar y responder a las necesidades de cuidadores familiares de personas con enfermedad crónica mediante el uso de tecnologías de información y comunicación. Materiales y Métodos: estudio cualitativo, realizado durante el primer semestre de 2014, bajo el método de investigación acción que permitió, de manera simultánea, conocer los problemas del cuidado que viven los cuidadores de personas con enfermedad crónica y generar una respuesta a las necesidades identificadas mediante el uso de una página Web. Resultados: los cuidadores familiares de personas con enfermedad crónica identificaron como sus problemas más sentidos la impotencia, el temor, la desesperanza y el aislamiento. A partir de ello, se generó una sección de preguntas frecuentes disponible vía página web, buscando generar con ello un mecanismo de soporte social. Conclusiones: la identificación de las necesidades de cuidadores familiares de personas con enfermedad crónica permitió dar una respuesta específica que, apoyada con las tecnologías de la información y la comunicación, se ofrece como fuente de acceso permanente para poder satisfacer sus inquietudes.

Objective: to identify and respond to the needs of family caregivers of people with chronic illness using information and communication technologies. Materials and Methods: qualitative study, it was carried out during the first semester of 2014, under the action research method that allowed simultaneously meet care problems experienced by caregivers of people with chronic illness and generate a response to the needs identified by using a page Web. Results: the family caregivers of people with chronic disease identified as their most sensitive problems of impotence, fear, hopelessness and isolation. Because of this, it was created a frequently asked questions section available via web page thereby seeking to generate a mechanism of social support. Conclusions: the identification of the needs of families of people with chronic disease caregivers allowed to give a specific answer supported by the information and communication technologies is offered as a source of permanent access to satisfy their concerns.

Objetivo: identificar e responder às necessidades de cuidadores familiares de pessoas com doenças crónicas, utilizando tecnologias de informação e comunicação. Materiais e Métodos: estudo qualitativo, realizado durante o primeiro semestre de 2014, sob o método de pesquisa-ação que permitiu simultaneamente atender problemas de cuidados vivenciados por cuidadores de pessoas com doença crônica e gerar uma resposta às necessidades identificadas usando uma página Rede. Resultados: os cuidadores familiares de pessoas com doença crônica identificados como seus problemas mais sensíveis da impotência, medo, desesperança e isolamento. A partir dele uma seção perguntas frequentes disponível através da página web gerado buscando gerar um mecanismo de apoio social. Conclusões. A identificação das necessidades das famílias de pessoas com cuidadores de doenças crônicas autorizados a dar uma resposta específica apoiada pela tecnologia da informação e das comunicações é oferecido como uma fonte de acesso permanente para satisfazer as suas preocupações.

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OBJECTIVE: To propose and validate a functional model that permits addressing, guiding, and qualifying nursing care in the Colombian National Cancer Institute. METHODOLOGY: Within the framework of the teaching-service work and as response to the priorities established by the National Cancer Institute, the need to have a model was determined to better understand the nursing work in the institution. For this purpose a study was conducted in three phases: 1) Analysis of the context, 2) Elaboration and analysis of the narratives of care, and 3) Development of the Functional Model of Nursing Care from the narratives. RESULTS: Based on the analysis of the context, we selected the theory of "Nursing as Caring" by Boykin and Schoenhofer and, as of such; a guide was developed and applied for the construction and analysis of the narratives of care. Lastly, through an analysis of the content of the narratives of care 143 nominal codes emerged along with eight central categories or concepts. The way these concepts are related in the content of the text gave way to the assumptions of the National Cancer Institute's model of nursing care whose dynamic was defined and diagramed for communication. Validation of the Model of Nursing Care ratified the positions expressed by the participants. CONCLUSION: Development of a sequential dynamics of contextual analysis, space and expression of a reflexive nursing practice and analysis of the contents of some narratives of nursing care product of such, permitted proposing and validating the National Cancer Institute's Model of Nursing Care that addresses, transmits, guides, and qualifies professional performance in the institution.

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