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INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.
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Lepra , Investigación Cualitativa , Humanos , Lepra/psicología , Lepra/terapia , Lepra/diagnóstico , Colombia , Femenino , Masculino , Adulto , Persona de Mediana Edad , Anciano , Adulto Joven , Diagnóstico Tardío/psicología , Grupo Paritario , Personas con Discapacidad/psicologíaRESUMEN
BACKGROUND: Existing research on the impacts of adversity on young children's psychological well-being has largely focused on household-level risk factors using observational methods in high-income countries. This study leverages natural variation in the timing and location of community homicides to estimate their acute effects on the regulatory, behavioral, and developmental outcomes of Brazilian 3-year-olds. METHODS: We compared the outcomes of children who were assessed soon after a recent neighborhood homicide to those of children from the same residential neighborhoods who had not recently experienced community violence. Our sample included 3,241 3-year-olds (Mage = 41.05 months; 53% female; 45% caregiver education less than middle school; 26% receiving a public assistance program) from seven neighborhoods in São Paulo, Brazil. Child outcome measures included parent reports of effortful control and behavior problems as well as direct assessments of children's developmental (cognitive, language, and motor) skills. Community homicides were measured using police records. RESULTS: Recent exposure to community homicides was associated with lower effortful control, higher behavior problems, and lower overall developmental performance for children (d = .05-.20 standard deviations; p = ns - <.001). Effects were consistent across subgroups based on sociodemographic characteristics and environmental supports, but generally largest when community violence exposure was geographically proximal (within 600 m of home) and recent (within 2 weeks prior to assessment). CONCLUSIONS: Results highlight the pervasive effects that community violence can have on young children as well as the need to expand support to mitigate these effects and prevent inequities early in life.
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Pobreza , Violencia , Niño , Humanos , Femenino , Preescolar , Masculino , Brasil , Violencia/psicología , Destreza Motora , Factores de RiesgoRESUMEN
O Transtorno do Espectro Autista (TEA) surge nos primeiros anos de vida, mas sua trajetória inicial não é homogênea. Serviços de saúde pública e privada enfrentam desafios no que diz respeito ao diagnóstico e tratamento deste público, assim como no cuidado e orientação das famílias. Diante disso, esta dissertação possui como objetivo analisar a percepção das mães de pessoas com Transtorno do Espectro Autista sobre as práticas de cuidado direcionado ao bem estar das próprias mães que acompanham seus filhos nas unidades de atenção secundária do Sistema Único de Saúde (SUS), assim como as condições de acesso ao diagnóstico e o processo inicial do tratamento. Para tanto, optou-se realizar dois tipos de desenhos metodológicos, sendo um a revisão sistemática (registrado na plataforma PROSPERO sob o código de registro CRD42023394779) e o outro a abordagem qualitativa-descritiva realizada através de entrevistas semiestruturadas com quinze mães de pessoas com TEA registrado sob número de parecer 6.466.061 no Comitê de Ética do Hospital Universitário Onofre Lopes e que resultou em cinco artigos. Todos os artigos foram escritos entre janeiro de 2023 à junho de 2024. Os resultados da revisão sistemática (artigo 1) destacaram os desafios emocionais, sociais e econômicos dos pais de filhos com TEA e a importância do suporte emocional e comunitário para sua resiliência; o artigo 2 identificou barreiras significativas no SUS para o diagnóstico precoce de TEA, como a falta de profissionais especializados e a burocracia, sugerindo melhorias nas políticas públicas; o artigo 3 revelou a diversidade e inconsistência nos tratamentos de TEA disponíveis no SUS, enfatizando a necessidade de integração entre diferentes serviços de saúde para eficácia terapêutica; o artigo 4 constatou variações significativas nas práticas de cuidado na atenção secundária direcionado às mães que acompanham seus filhos nas consultas, destacando a importância da formação continuada dos profissionais de saúde e a padronização dos cuidados; já o artigo 5 abordou as experiências únicas das mães solteiras de pessoas com TEA, enfatizando a sobrecarga emocional e financeira e a necessidade de redes de suporte específicas; por fim o artigo 6 mostrou que o conhecimento das mães sobre TEA evolui ao longo do tempo, influenciando a eficácia do tratamento e ressaltando a importância de programas educacionais contínuos para os pais. Conclui-se então que esta dissertação oferece uma contribuição significativa ao aprofundar o entendimento das experiências das mães de pessoas com TEA a respeito da busca do diagnóstico e processo terapêutico dos seus filhos, assim como as práticas de cuidado nas unidades de atenção secundária do SUS. Os resultados obtidos sublinham a necessidade urgente de melhorar o acesso ao diagnóstico precoce, facilitar o início dos tratamentos, padronizar as práticas de cuidado e oferecer suporte contínuo às famílias. Para avanços futuros, sugere-se a realização de estudos longitudinais que acompanhem as famílias ao longo do tempo para entender melhor as mudanças nas percepções e nas necessidades de cuidado. É importante investigar a realidade de diferentes regiões do Brasil para obter uma visão mais abrangente das condições de acesso e tratamento. Também seria benéfico incluir perspectivas de outros cuidadores para uma compreensão mais completa do impacto do TEA. Por fim, é fundamental informar a criação de políticas públicas que abordem as lacunas identificadas na pesquisa, promovendo uma melhor integração e qualidade dos serviços de saúde oferecidos pelo SUS (AU).
Autism Spectrum Disorder (ASD) appears in the first years of life, but its initial trajectory is not homogeneous. Public and private health services face challenges when it comes to diagnosing and treating this population, as well as caring for and guiding families. Therefore, this dissertation aims to analyze the perception of mothers of people with Autism Spectrum Disorder regarding care practices aimed at the well-being of the mothers themselves who accompany their children in the secondary care units of the Unified Health System (SUS), as well as the conditions for access to diagnosis and the initial treatment process. To this end, it was decided to carry out two types of methodological designs, one being a systematic review (registered on the PROSPERO platform under the registration code CRD42023394779) and the other a qualitative-descriptive approach carried out through semi-structured interviews with fifteen mothers of people with ASD registered under opinion number 6.466.061 with the Ethics Committee of the Onofre Lopes University Hospital and which resulted in five articles. All articles were written between January 2023 and June 2024. The results of the systematic review (article 1) highlighted the emotional, social and economic challenges faced by parents of children with ASD and the importance of emotional and community support for their resilience; article 2 identified significant barriers in the SUS for the early diagnosis of ASD, such as the lack of specialized professionals and bureaucracy, suggesting improvements in public policies; article 3 revealed the diversity and inconsistency in ASD treatments available in the SUS, emphasizing the need for integration between different health services for therapeutic effectiveness; article 4 found significant variations in care practices in secondary care aimed at mothers who accompany their children to consultations, highlighting the importance of continued training for health professionals and the standardization of care; Article 5 addressed the unique experiences of single mothers of people with ASD, emphasizing the emotional and financial burden and the need for specific support networks; Finally, article 6 showed that mothers' knowledge about ASD evolves over time, influencing the effectiveness of treatment and highlighting the importance of ongoing educational programs for parents. It is therefore concluded that this dissertation offers a significant contribution by deepening the understanding of the experiences of mothers of people with ASD regarding the search for diagnosis and the therapeutic process of their children, as well as care practices in SUS secondary care units. The results obtained highlight the urgent need to improve access to early diagnosis, facilitate the initiation of treatments, standardize care practices and offer continuous support to families. For future advances, it is suggested that longitudinal studies be carried out that follow families over time to better understand changes in perceptions and care needs. It is important to investigate the reality of different regions of Brazil to obtain a more comprehensive view of access and treatment conditions. It would also be beneficial to include perspectives from other caregivers for a more complete understanding of the impact of ASD. Finally, it is essential to inform the creation of public policies that address the gaps identified in the research, promoting better integration and quality of health services offered by the SUS (AU).
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Humanos , Femenino , Adulto , Trastorno Autístico/diagnóstico , Sistema Único de Salud , Trastorno del Espectro Autista/patología , Política de Salud , Madres , Atención Secundaria de Salud , Trastornos de la ComunicaciónRESUMEN
Introducción: La Organización Panamericana de la Salud refiere que a nivel mundial pocos son los países que aplican el contacto piel con piel cuando lo realizan es por un tiempo inadecuado a pesar de los múltiples beneficios para la madre y el recién nacido. Objetivo: Describir la aplicación del contacto piel con piel desde la experiencia del equipo de salud en un centro materno infantil del sector público en Perú. Métodos: Investigación cualitativa con diseño descriptivo, de tipo estudio de caso, en una muestra no probabilística de 10 integrantes del equipo de salud, elegidos por conveniencia y determinado por saturación y redundancia. Los datos se recolectaron a través de la entrevista semiestructurada en línea. La información se procesó de manera manual, mediante el análisis de contenido temático. Resultados: Se obtuvieron tres categorías: a) aplicación del contacto piel con piel en la atención inmediata del recién nacido, b) estrategias implementadas para la aplicación del contacto piel con piel y c) barreras afrontadas por el equipo de salud para aplicar el contacto piel con piel. Conclusiones: Desde la experiencia del personal de salud, es posible aplicar el contacto pial a piel previa capacitación y sensibilización al equipo de salud, y acondicionamiento del ambiente, a fin de implementarlo como política del establecimiento de salud(AU)
Introduction: The Pan American Health Organization reports that few countries worldwide apply skin-to-skin contact and when they use it is during an inadequate amount of time despite the multiple benefits for the mother and the newborn. Objective: To describe the application of skin-to-skin contact from the experience of the health team in a public maternal and child center in Peru. Methods: A qualitative research with a descriptive design, case study, was carried out in a non-probabilistic sample of 10 members of the health team, chosen by convenience and determined by saturation and redundancy. Data were collected through semi-structured online interviews. The information was processed manually, through thematic content analysis. Results: Three categories were obtained: a) application of skin-to-skin contact in the immediate care of the newborn, b) strategies implemented for the application of skin-to-skin contact, and c) barriers faced by the health team to apply skin-to-skin contact. Conclusions: From the experience of health personnel, it is possible to apply skin-to-skin contact after training and sensitization to the health team and conditioning of the environment, in order to implement it as a policy of the health facility(AU)
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Humanos , Recién Nacido , Piel , Recién Nacido/crecimiento & desarrollo , Acontecimientos que Cambian la Vida , Epidemiología Descriptiva , Investigación Cualitativa , Relaciones Familiares , Centros de Salud Materno-Infantil , Madres/educaciónRESUMEN
PURPOSE: To present our real-life experience with dabrafenib and trametinib (D-T) treatment in patients with BRAF V600E-mutated ATC in Argentina. PATIENTS Y METHODS: We included five patients from four different hospitals. The median age was 70 years, and 60% were male. The performance status at diagnosis was grade 0 in 60% and grade 2 in 40% of patients. Four patients could undergo total thyroidectomy; in one of them, surgical treatment was amenable due to the indication of D-T as neoadjuvant therapy. From the total cohort, the best response to treatment was complete response in 40%, partial response in 20%, and stable disease in 20%. The median duration of response was 20 weeks, ranging from 16 to 92 weeks. All patients experienced at least one adverse event (AE). Grade ≥3 AEs were observed in two (40%) patients. They were upper gastrointestinal bleeding and subclavian vein thrombosis. The median follow-up was 20 weeks (range: 16 to 92). CONCLUSION: This report contributes to illustrate the feasibility and effectiveness of D-T treatment in five patients with loco-regionally advanced and metastatic BRAF V600E-mutated ATC in a real-life setting. A multidisciplinary approach and rapid molecular-tailored testing are essential to begin this therapeutic option.
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Carcinoma Anaplásico de Tiroides , Neoplasias de la Tiroides , Humanos , Masculino , Anciano , Femenino , Carcinoma Anaplásico de Tiroides/tratamiento farmacológico , Carcinoma Anaplásico de Tiroides/patología , Proteínas Proto-Oncogénicas B-raf/genética , Argentina , Piridonas/uso terapéutico , Piridonas/efectos adversos , Neoplasias de la Tiroides/tratamiento farmacológico , MutaciónRESUMEN
Resumo Neste estudo tivemos como objetivo investigar experiências racializadas com docentes e/ou pesquisadoras/es que atuam ou atuaram com Psicologia Social. O enfoque metodológico foi colaborativo com o apoio de elementos da pesquisa narrativa, o que implica um tipo de relação de pesquisa em que as pessoas entrevistadas e a pesquisadora se tornam cocontadoras de histórias em busca de compreender como construíram a experiência racial. Foram realizadas 15 entrevistas narrativas sem restrições de gênero, raça/etnia, idade, com o objetivo de alcançar maior diversidade de histórias. A análise dialógico-performativa foi utilizada como ferramenta para interpretação do material empírico das entrevistas. As experiências narradas são racializadas, entretanto, existem nuances, que se relacionam à singularidade da vida das/os participantes. As narrativas expuseram que aspectos como território, classe, gênero, idade refletem na experiência com a raça. A mestiçagem ainda é um território em construção, ambíguo, mas com potencial de expansão para além da binaridade negro/branco.
Resumen En este estudio tuvimos como objetivo investigar experiencias racializadas con profesoras e investigadoras que trabajan o han trabajado con Psicología Social. El enfoque metodológico fue colaborativo, apoyado en elementos de investigación narrativa, o que implica un tipo de relación de investigación en la que las personas entrevistadas y el investigador se convierten en co-narradores de historias. Se realizaron quince entrevistas narrativas sin restricción de género, raza/etnia, edad, para lograr una mayor diversidad de relatos. Se utilizó como herramienta de interpretación del material empírico de las entrevistas el análisis dialógico-performativo. Las experiencias narradas son racializadas, sin embargo, existen matices, que se relacionan con la singularidad de la vida de los participantes. Las narrativas expusieron que aspectos como el territorio, la clase, el género, la edad reflexionan sobre la experiencia con la raza. El mestizaje es todavía un territorio ambiguo en construcción, pero con el potencial de expandirse más allá del binario blanco/negro.
Abstract In this study we aimed to investigate racialized experiences with professors and/or researchers who work or have worked with Social Psychology. The methodological approach was collaborative, supported by elements of narrative research, which implies a type of research relationship in which the people interviewed and the researcher become co-tellers of stories, seeking to understand how they built the racial experience. Fifteen narrative interviews were carried out with no restriction on gender, race/ethnicity, age, to achieve greater diversity of stories. Dialogic-performative analysis was used as a tool for interpreting the empirical material of the interviews. The narrated experiences are racialized, however, there are nuances, which are related to the singularity of the participants' life. The narratives exposed that aspects such as territory, class, gender, age reflect on the experience with race. Moreover, miscegenation is an ambiguous territory under construction, but with the potential to expand beyond the black/white binary.
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Resumo: A pesquisa refere-se à experiência de famílias com a obesidade infantil, pois trata-se de uma doença de causa multifatorial e de alta prevalência com impactos na família. Diante da problemática, questionou-se sobre a experiência da família com a doença e a contribuição deste fenômeno como evidência para fundamentar a prática profissional resolutiva. Assim, a pesquisa teve como objetivos compreender a experiência de famílias que convivem com a obesidade infantil e construir uma teoria substantiva que representasse a compreensão dessa experiência. Foi realizado um estudo qualitativo com referencial metodológico da Teoria Fundamentada nos Dados Construtivista de Katy Charmaz e Referencial Teórico da Complexidade segundo Frijot Capra. A amostra do estudo foi constituída por 18 famílias e 26 participantes que integraram dois grupos amostrais, sendo 20 familiares e 6 crianças em tratamento para obesidade. Os dados foram coletados em um ambulatório de atendimento pediátrico, no município de Curitiba, Estado do Paraná, Brasil, nos anos 2019 e 2020, por meio de entrevista intensiva com uso de roteiro semiestruturado, e apoio de história em quadrinho e quadro de feltro para entrevistar as crianças, seguindo-se os princípios da amostragem e saturação teórica. A análise realizou-se em 3 etapas: codificação inicial, focalizada e teórica, sustentada no método comparativo constante, com registro de memorandos, apoio do Software WebQDA, e elaboração de diagramas. Os resultados foram representados nas 4 categorias conceituais a seguir: DISCORRENDO SOBRE A ESTRUTURA FAMILIAR que descreveu as características estruturais da família, a composição, história de doenças e os relacionamentos entre os membros; ANALISANDO O FUNCIONAMENTO FAMILIAR que referiu-se aos comportamentos e organização da família para o desempenho das suas atividades de vida diária, tendo em vista suas características, recursos e necessidades; A OBESIDADE INFANTIL REPERCUTINDO NO SISTEMA FAMILIAR revelou que na família repercute com sentimentos de preocupação, sofrimento, preconceito; a criança é impactada biologicamente, experimenta sentimentos negativos e impactos sociais. As famílias percebem a obesidade como natural e difícil. O SISTEMA FAMILIAR MOVIMENTANDO-SE NO TRATAMENTO que explorou o modo como a família enfrenta o tratamento e o processo de mudança de comportamento e de reorganização da rotina a partir do momento que a criança recebe o diagnóstico da obesidade. Emergiu dos dados o fenômeno central "A OBESIDADE INFANTIL REVERBERANDO NO SISTEMA FAMILIAR" permeando e relacionando todas as categorias conceituais, compreendido como efeito, consequência e resposta da família à problemática da obesidade. A abstração dos dados resultou na construção da teoria substantiva "O sistema familiar transformandose diante da complexidade da obesidade infantil" no qual família foi compreendida como um sistema adaptativo complexo e autopoiético. A teoria pressupõe que a avaliação da estrutura familiar e de seu padrão de organização possibilita o reconhecimento de suas instabilidades e dificuldades. E como um sistema capaz de regular a si próprio consegue transformar-se para funcionar de modo saudável diante de situações complexas, utilizando seus recursos e desenvolvendo estratégias de adaptação. Assim, essa pesquisa contribui substancialmente para a prática da enfermagem familiar indicando ampliação da abordagem da obesidade infantil para a família como fonte de apoio.
Abstract: The research refers to the experience of families with childhood obesity, because it is a multifactorial and highly prevalent disease with impacts on the family. Faced with the problem, questions were asked about the family's experience with the disease and the contribution of this phenomenon as evidence to support resolving professional practice. Thus, the research aimed to understand the experience of families living with childhood obesity and build a substantive theory that would represent the understanding of this experience. A qualitative study was carried out with the methodological framework of the Grounded Theory Constructivist based on Katy Charmaz's Data and the Theoretical Framework of Complexity according to Frijot Capra. The study sample consisted of 18 families and 26 participants who integrated two sample groups, 20 family members and 6 children being treated for obesity. Data were collected in a pediatric outpatient clinic in the city of Curitiba, State of Paraná, Brazil, in the years 2019 and 2020, through intensive interviews using a semistructured script, and support of comic books and felt board for interview the children, following the principles of sampling and theoretical saturation. The analysis was carried out in 3 stages: initial, focused and theoretical coding, supported by the constant comparative method, with recording of memos, support from the WebQDA Software, and elaboration of diagrams. The results were represented in the following 4 conceptual categories: DISCOURSE ABOUT THE FAMILY STRUCTURE which described the structural characteristics of the family, the composition, history of diseases and the relationships between the members; ANALYZING FAMILY FUNCTIONING which referred to the behavior and organization of the family for the performance of its daily activities, considering its characteristics, resources and needs; CHILDREN'S OBESITY REFLECTING IN THE FAMILY SYSTEM revealed that it affects the family with feelings of concern, suffering, prejudice; the child is biologically impacted, experiences negative feelings and social impacts. Families perceive obesity as natural and difficult. THE FAMILY SYSTEM MOVING INTO TREATMENT which explored how the family faces the treatment and the process of behavior change and routine reorganization from the moment the child receives the diagnosis of obesity. The central phenomenon "CHILDREN OBESITY REVERSING IN THE FAMILY SYSTEM" emerged from the data, permeating and relating all conceptual categories, understood as effect, consequence and family response to the problem of obesity. The abstraction of data resulted in the construction of the substantive theory "The family system transforming itself in the face of the complexity of childhood obesity", in which the family was understood as a complex adaptive and autopoietic system. The theory assumes that the assessment of the family structure and its pattern of organization makes it possible to recognize its instabilities and difficulties. And how a system capable of regulating itself manages to transform itself to function healthily in complex situations, using its resources and developing adaptation strategies. Thus, this research substantially contributes to the practice of family nursing, indicating an expansion of the approach to childhood obesity for the family as a source of support.
Resumen: La investigación se refiere a la experiencia de familias con obesidad infantil, por ser una enfermedad multifactorial y de alta prevalencia con impactos en la familia. Ante el problema, se preguntaron sobre la vivencia de la familia con la enfermedad y el aporte de este fenómeno como evidencia para sustentar la resolución de la práctica profesional. Así, la investigación tuvo como objetivo comprender la experiencia de las familias que viven con obesidad infantil y construir una teoría sustantiva que represente la comprensión de esta experiencia. Se realizó un estudio cualitativo con el marco metodológico de la Teoría Basada en los Datos Constructivistas de Katy Charmaz y el Marco Teórico de la Complejidad según Frijot Capra. La muestra del estudio consistió en 18 familias y 26 participantes que integraron dos grupos de muestra, 20 miembros de la familia y 6 niños en tratamiento por obesidad. Los datos fueron recolectados en un ambulatorio pediátrico en la ciudad de Curitiba, Estado de Paraná, Brasil, en los años 2019 y 2020, a través de entrevistas intensivas utilizando un guión semiestructurado, y soporte de cómics y cartulina para entrevista a los niños. siguiendo los principios de muestreo y saturación teórica. El análisis se realizó en 3 etapas: codificación inicial, focalizada y teórica, sustentado en el método comparativo constante, con registro de memos, soporte del Software WebQDA y elaboración de diagramas. Los resultados fueron representados en las siguientes 4 categorías conceptuales: DISCURSO SOBRE LA ESTRUCTURA FAMILIAR que describió las características estructurales de la familia, la composición, historia de enfermedades y las relaciones entre los miembros; ANALIZAR EL FUNCIONAMIENTO FAMILIAR que se refiera al comportamiento y organización de la familia para el desempeño de sus actividades diarias, considerando sus características, recursos y necesidades; LA OBESIDAD INFANTIL QUE SE REFLEJA EN EL SISTEMA FAMILIAR reveló que afecta a la familia con sentimientos de preocupación, sufrimiento, prejuicio; el niño se ve afectado biológicamente, experimenta sentimientos negativos e impactos sociales. Las familias perciben la obesidad como algo natural y difícil. EL SISTEMA FAMILIAR HACIA EL TRATAMIENTO que exploró cómo la familia enfrenta el tratamiento y el proceso de cambio de comportamiento y reorganización de la rutina desde el momento en que el niño recibe el diagnóstico de obesidad. El fenómeno central "LA OBESIDAD INFANTIL REVERTIRSE EN EL SISTEMA FAMILIAR" surgió de los datos, permeando y relacionando todas las categorías conceptuales, entendidas como efecto, consecuencia y respuesta familiar al problema de la obesidad. La abstracción de los datos dio lugar a la construcción de la teoría sustantiva "El sistema familiar transformándose ante la complejidad de la obesidad infantil", en la que se entendía a la familia como un sistema complejo adaptativo y autopoyético. La teoría asume que la evaluación de la estructura familiar y su patrón de organización permite reconocer sus inestabilidades y dificultades. Y cómo un sistema capaz de regularse a sí mismo logra transformarse para funcionar de manera saludable en situaciones complejas, utilizando sus recursos y desarrollando estrategias de adaptación. Así, esta investigación contribuye sustancialmente a la práctica de la enfermería familiar, indicando una ampliación del abordaje de la obesidad infantil para la familia como fuente de apoyo.
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Humanos , Masculino , Femenino , Niño , Adulto , Persona de Mediana Edad , Prejuicio , Familia , Niño , Obesidad Infantil , Teoría Fundamentada , Acontecimientos que Cambian la VidaRESUMEN
RESUMEN Este trabajo investigó la transformación de la experiencia de las personas que padecen de cáncer avanzado. Objetivos I) describir y analizar la transformación del cuerpo de las personas con cáncer avanzado y II) describir y analizar la influencia de la religión en la transformación de dicha experiencia de vida. Métodos Se realizó una etnografía en un hospital público de la ciudad de México en la alcaldía de Iztacalco. Se empleó la narrativa como herramienta para explorar las emociones, el cuerpo y la experiencia. Discusión El análisis interpretativo se basó en las teorías de la fenomenología de la percepción, la teoría de la performatividad, el concepto de habitus y la noción de globalización. Conclusiones El cuerpo es un campo de transformación continuo desde el cual se construyen los significados sociales y globales en torno al cáncer que influyen en la atención médica.(AU)
ABSTRACT This work investigates the transformation of people experience with advanced cancer. Objectives I) describe and analyze the transformation of the body of people with advanced cancer and II) describe and analyze the influence of religion in the transformation of that experience. Methods An ethnography was carried out in a public hospital in Mexico City in Iztacalco city hall. Narrative was used as a tool to explore emotions, body and experience. Discussion The theoretical discussion was based on the theories of the phenomenology of perception, the theory of performativity, the concept of habitus and the notion of globalization. Conclusions The body is a continuous field of transformation from which the social and global meanings around cancer are constructed and influence the medical care.(AU)
Asunto(s)
Humanos , Religión y Medicina , Enfermedad Crítica/psicología , Acontecimientos que Cambian la Vida , Hospitales Públicos , Antropología Cultural/instrumentación , MéxicoRESUMEN
Resumen Objetivo: explorar qué se ha investigado sobre la experiencia de ser diagnosticado y el vivir con la infección por Virus del Papiloma Humano (VPH) en personas adultas. Metodología: se realizó una revisión de literatura basada en el diseño de scoping review de Arksey y O´Malley. Resultados: la experiencia de la persona adulta con la infección por VPH implica considerar principalmente cuatro áreas: la psicosocial, la sexual, la cognitiva y la atención a la salud. Discusión: aunque la mayoría de los hallazgos se centran en aspectos negativos del VPH, algunos muestran evidencia de beneficios o aspectos positivos a partir del diagnóstico. Conclusiones: el VPH conlleva un impacto considerable desde el momento de su detección hasta el tratamiento, lo que implica afecciones en las distintas áreas de la vida de las personas que van desde cuestiones emocionales hasta el seguimiento adecuado del proceso de atención.
Abstract Objetivo: Explore what has been investigated about the experience of being diagnosed and living with Human Papillomavirus (HPV) infection in adults. Metodología: A literature review was done based on the scoping review design of Arksey and O'Malley. Resultados: The experience of the adult with HPV infection involves mainly considering four areas: psychosocial, sexual, cognitive and health care. Discusión: Although most of the findings focus on negative aspects of HPV, some show evidence of benefits or positive aspects from the diagnosis. Conclusiones: HPV carries a considerable impact from the time of its detection until the treatment, which implies affections in the different areas of the life of patients ranging from emotional issues to the adequate follow-up of the care process.
Asunto(s)
Humanos , Masculino , Femenino , Anciano , Anciano de 80 o más Años , Alphapapillomavirus , MéxicoRESUMEN
Abstract Objective: to understand mothers' bereavement experiences regarding the loss of their newborn child in the Neonatal Intensive Care Unit of a Brazilian university hospital. Methods: the study was designed by the clinical-qualitative method to understand the meaning of the emerging relationships of health scenarios. Sample consisted of six mothers. The sufficiency of the sample was verified through the saturation of the data. The data collection instrument was a semistructured interview with script of open questions, the collected material was recorded and transcribed in full. Thematic analysis was performed by two independent authors. Results: feelings and perceptions of the grieving process gave rise to three categories: 1. Guilt and fantasy of bereavement related to the death and grief for their children; 2. Relationships and ambiguities - the relationship between internal concerns and perception of external relations; 3. Fear, disbelief, abandonment and loneliness - questions about perception of the external environment. Conclusions: mothers' bereavement experience is mainly permeated by loneliness and abandonment related to feelings of guilt for not being able to keep their children alive. The difficult and definitive separation in the postpartum period, caused by death, brings fantasies of reunion with their child. Women show the need to realize grief, especially by recognizing their baby's identity.
Resumo Objetivo: compreender experiências de luto das mães frente à perda do filho neonato na Unidade de Terapia Intensiva Neonatal de um hospital universitário brasileiro. Métodos: o estudo foi desenhado pelo método clínico-qualitativo que propõe a compreensão do sentido das relações emergentes nos cenários de saúde. A amostra foi composta por seis mães e sua suficiência foi verificada através da saturação de dados. O instrumento de coleta de dados foi uma entrevista semiestruturada com roteiro de questões abertas, o material coletado foi gravadoe transcrito na íntegra. A análise temática foi realizada por dois autores independentes. Resultados: os sentimentos e as percepções do processo de luto deram origem a três categorias: 1. Culpa e fantasia das mulheres enlutadas relacionadas com a morte e luto por seus filhos; 2. Relacionamentos e ambiguidades - a relação entre preocupações internas e a percepção de relações externas; 3. Medo, descrença, abandono e solidão - questões sobre a percepção do ambiente externo. Conclusões: a experiência de luto das mães é permeada sobretudo, por solidão e abandono relacionados com sentimento de culpa por não poder manter o filho vivo. A separação no período de puerpério, provocada pela morte, é difícil, definitiva e traz fantasias de reencontro com o filho. As mulheres mostram a necessidade de concretizar o luto especialmente através do reconhecimento da identidade de seu bebê.
Asunto(s)
Humanos , Femenino , Recién Nacido , Aflicción , Actitud Frente a la Muerte , Mortalidad Perinatal , Conducta Materna/psicología , Madres , Brasil , Pesar , Unidades de Cuidado Intensivo Neonatal , Depresión Posparto/psicologíaRESUMEN
INTRODUCTION: Sorafenib (SOR) has proved to be effective in patients with advanced hepatocellular carcinoma (HCC), since overall survival was higher in phase III clinical trials; however, disease progression can occur. OBJECTIVES: The study aimed to describe real-life experience in advanced HCC treatment with SOR at a university hospital in Brazil and to estimate the number of patients with indication of second-line therapy. METHODS: This is a retrospective study that included cases of HCC with prescription of SOR based on real-life practice between 2011 and 2016. Demographic, clinical, and laboratory data were collected. RESULTS: From 572 patients with HCC, SOR was prescribed in 103 cases. From them, 62.1% were classified as Child-Pugh (CP)-A, 54.4% as Barcelona Clinic Liver Cancer (BCLC)-C, and 74 (71.8%) started treatment. Overall survival was 25.5 (95% CI 17.0-34.1) months and 1-year survival was greater in patients who received SOR than in non-treated (88.7 vs. 44.4%, p < 0.001). There was no difference in survival between BCLC-B and C (p = 0.405), as well as CP-A and B (p = 0.919). In 21.6% of the patients, a second-line therapy with regorafenib was indicated. CONCLUSION: In this real-life study, SOR significantly increased the survival rate by 1 year in patients with advanced HCC regardless of BCLC staging and CP score. Second-line therapy would be indicated in 21.6% of cases.
Asunto(s)
Carcinoma Hepatocelular/tratamiento farmacológico , Neoplasias Hepáticas/tratamiento farmacológico , Niacinamida/análogos & derivados , Compuestos de Fenilurea/uso terapéutico , Anciano , Antineoplásicos/uso terapéutico , Carcinoma Hepatocelular/patología , Femenino , Humanos , Estimación de Kaplan-Meier , Neoplasias Hepáticas/patología , Masculino , Persona de Mediana Edad , Niacinamida/administración & dosificación , Niacinamida/farmacología , Niacinamida/uso terapéutico , Compuestos de Fenilurea/administración & dosificación , Compuestos de Fenilurea/farmacología , Probabilidad , Piridinas/uso terapéutico , Estudios Retrospectivos , Sorafenib , Resultado del TratamientoRESUMEN
INTRODUCCIÓN. Diariamente en el mundo se dan 20 mil nacimientos de madres adolescentes, conllevando a repercusiones biológicas, psicológicas y sociales. México es el primer país con natalidad adolescente de los países que integran la Organización para la Cooperación y el Desarrollo Económicos. De acuerdo a evidencia científica, el cuidado familiar puede fungir como un factor protector para la vulnerabilidad y estigma social que representa la maternidad en condición de soltería. Sin embargo, son nulos los estudios encaminados a develar las voces de adolescentes gestantes solteras en la experiencia de cuidado familiar. Consiguiente se plantea la pregunta cómo es la experiencia de las adolescentes gestantes solteras (AGS) en cuidado familiar? OBJETIVO GENERAL. Interpretar la experiencia de AGS en cuidado familiar. METODOLOGÍA. Estudio cualitativo, fenomenológico hermenéutico. Selección de participantes por criterio de conveniencia y saturación de datos. Recolección de datos a través de cedula de datos sociodemográficos, diario de campo, visitas domiciliarias y entrevista en profundidad, duración promedio 80 minutos y dos sesiones, audio grabada previo consentimiento informado doble rubrica. Posterior transcripción fidedigna de datos, codificación, reducción y análisis. RESULTADOS. Del análisis emanan: Categoría 1. El mundo interior de la AGS, subcategorías: 1.1 El miedo, 1.2 La tristeza, 1.3 La alegría. Categoría 2. Experimentando el cuidado familiar, subcategorías: 2.1 Dinámicas familiares cambiantes, 2.2 Tipos de cuidado familiar. CONCLUSIÓN. La experiencia de gestación temprana en condición de soltería resulta un fenómeno complejo, social, transgeneracional y cultural que "multi-violenta" a las AGS. A pesar del cuidado familiar que perciben, son el rechazo, angustia y vergüenza los sentimientos que imperan en su experiencia. La ponderación social antes que personal del fenómeno, les ubica en el llamado "se dice" (Heidegger) resultando un Dasein inauténtico. Comprender la experiencia de las AGS en cuidado familiar, para enfermería, aproxima a un cuidado holístico.
INTRODUCTION. Every day in the world there are 20 thousand births of adolescent mothers, leading to biological, psychological and social repercussions. Mexico is the first country with an adolescent birth rate in the countries that make up the Organization for Economic Cooperation and Development. According to scientific evidence, family care can serve as a protective factor for the vulnerability and social stigma that represents single motherhood. However, studies aimed at revealing the voices of single pregnant teenagers in the family care experience are null. The question arises as to what is the experience of unmarried pregnant women (AGS) in family care? GENERAL OBJECTIVE. Interpret the AGS experience in family care METHODOLOGY. Qualitative, phenomenological hermeneutic study. Selection of participants by criterion of convenience and data saturation. Data collection through socio-demographic data, field diary, home visits and in-depth interview, average duration 80 minutes and two sessions, recorded audio prior double informed consent. Positive transcript of data, coding, reduction and analysis. RESULTS. From the analysis emanate: Category 1. The inner world of the AGS, subcategories: 1.1 The fear, 1.2 The sadness, 1.3 The joy. Category 2. Experiencing family care, subcategories: 2.1 Changing family dynamics, 2.2 Types of family care. CONCLUSION. The experience of early gestation in singles condition is a complex, social, transgenerational and cultural phenomenon that ""multi-violent"" to the AGS. Despite the family care they perceive, they are rejection, anguish and shame the feelings that prevail in their experience. The social rather than personal weighting of the phenomenon places them in the socalled ""is said"" (Heidegger) resulting in an inauthentic Dasein. Understanding the AGS experience in family care, for nursing, approximates holistic care.
Asunto(s)
Humanos , Mujeres Embarazadas , Persona Soltera , Adolescente , Cuidadores , Acontecimientos que Cambian la Vida , MéxicoRESUMEN
Resumen: El sentido de la vida, la razón profunda del anhelo de vivir y la motivación para actuar en consecuencia, es el antecedente del proyecto vital (PV). Se argumenta cómo la lucha por la dignidad es el verdadero derrotero de superación de la condición humana y el eje de PV que aspiran al bien vivir. El PV que se propone es una aventura cognitiva que trasciende el consumismo, el individualismo y la pasividad en la búsqueda de otro mundo hospitalario e incluyente, donde tenga viabilidad la superación espiritual, intelectual y moral de la dignidad humana. Este PV entraña: a) una necesidad primaria: vincularse con otras subjetividades afines; b) un núcleo: la lucha incesante por la dignidad sublimada; c) un desiderátum: el bien vivir de las mayorías y d) un propósito indeclinable: la edificación sobre otros basamentos éticos, políticos, jurídicos, cognitivos y ecológicos, de un mundo propicio para el bien vivir. Se arguye acerca de la superioridad de proyectos vitales altruistas en la consecución del bien vivir comunitario, sobre los afanes centrados en la preservación y el cuidado de la salud que favorecen el individualismo, la pasividad y el statu quo. La búsqueda del "bien morir" es el mejor ejemplo de la influencia benéfica de este tipo de proyectos en el cuidado de la salud.
Abstract: On the basis that life project as the driving force behind the life experience, the quest for human dignity is the way for true progress and the improvement of human condition. It's pointed out the need to be aware of the meaning of life understanding the motives behind our will to live that is the antecedent of life project. The proposed life project is a cognitive adventure, capable of transcending consumerism, individualism and passivity, toward the creation of a more inclusive world where the improvement spiritual, intellectual and moral can be viable. Said life project entails: a) A primary need: to link oneself with like-minded people that synergize against the prevailing order b) A core: The everlasting struggle for sublimated dignity c) A desideratum: The well-being of the majority d) An unavoidable purpose: The creation of a suitable world build on different ethical, political, lawful, cognitive and ecological foundations. In conclusion, this paper analyzes the influence of projects with an alternate proposal to the endeavors centered in healthcare that favor individualism, passivity and the current status quo. The best example of said alternate proposals is the commonly called "good death".
RESUMEN
On the basis that life project as the driving force behind the life experience, the quest for human dignity is the way for true progress and the improvement of human condition. It's pointed out the need to be aware of the meaning of life understanding the motives behind our will to live that is the antecedent of life project. The proposed life project is a cognitive adventure, capable of transcending consumerism, individualism and passivity, toward the creation of a more inclusive world where the improvement spiritual, intellectual and moral can be viable. Said life project entails: a) A primary need: to link oneself with like-minded people that synergize against the prevailing order b) A core: The everlasting struggle for sublimated dignity c) A desideratum: The well-being of the majority d) An unavoidable purpose: The creation of a suitable world build on different ethical, political, lawful, cognitive and ecological foundations. In conclusion, this paper analyzes the influence of projects with an alternate proposal to the endeavors centered in healthcare that favor individualism, passivity and the current status quo. The best example of said alternate proposals is the commonly called "good death".
RESUMEN
Buscamos dar visibilidade às lutas cotidianas através das experiências de vida das comunidades pobres, uma diferença na cidade. Temos uma preocupação: criticar o ato de silenciar as diferenças, buscando responder a uma questão: como ressignificar a diferença vista como negativa? Apostamos num poder comum de agir, trabalho - arte das comunidades pobres que maquinam por um constante vir a ser da cidade. Este trabalho mostra submissões, mas também mostra resistência e liberdade como seus fundamentos materiais que implicam numa produção de subjetividades.
We seek to give visibility to the daily challenges through the life experiences of poor communities, a difference in the city. We have a concern: to criticize the act of silencing the diversity, trying to answer a question: how to reframe the difference, viewed as negative? We believe in a common power to act, working - the art of the poor communities that plot a constant state of "will be" of the city. This work shows subjections, but it also shows resistance and freedom as its material bases that imply a production of subjectivities.
Buscamos dar visibilidad a las luchas cotidianas a través de las experiencias de vida de las comunidades pobres, una diferencia en la ciudad. Tenemos una preocupación: criticar el acto de silenciar las diferencias, tratando de responder a una pregunta: ¿cómo replantear la diferencia, visto como algo negativo? Creemos en un poder común para actuar, trabajar - el arte de las comunidades pobres que conspiran por una ciudad-devenir. Este trabajo muestra el sometimiento, pero también muestra la resistencia y la libertad como sus materiales fundadores que implican una producción de subjetividades.
Asunto(s)
Ciudades , Estilo de Vida , Psicología Social , Áreas de Pobreza , Acontecimientos que Cambian la VidaRESUMEN
Esta investigación de corte cualitativo con diseño fenomenológico, buscó a través de los talleres lúdicos, la observación participante y la entrevista semiestructurada, comprender el significado de las vivencias de niños y niñas de 7 a 16 años de edad afectados por el VIH/SIDA, adscritos a un centro de atención y apoyo para el VIH/SIDA, entendiendo la vivencia como el resultado de la relación del sujeto con los diversos objetos y eventos que constituyen los aspectos dinámicos de su mundo y que componen su historia. Los significados de estos niños/as acerca de la vivencia de estar afectados por el VIH/SIDA giran en torno al señalamiento, la discriminación, el ser portador social del virus, miedo de revelar la condición en la escuela por el rechazo que puede causarles, la no satisfacción de sus demandas ontológicas por su institucionalización y la resignificación de sus vivencias que los lleva a tener conductas preventivas y ser educadores de la enfermedad.
This qualitative research with a phenomenological design, searched throughout playful workshops, partaker observation and semi-structured interview, understand the meaning of the experiences of children from 7 to 16 years old affected by HIV/AIDS, care for a support center for HIV/AIDS. Understanding the experience as the result of the subject's relationship with the different objects and events that constitute the dynamic aspects of their world and that comprise their story. The meanings of these children on the experience of being affected by HIV/AIDS revolve around tagging, discrimination, carrying the virus socially, fear to reveal the condition at school that can cause rejection, the failure to meet their ontological demands for their institutionalization and the significance of their experiences that leads to preventive behaviors and develop educators of the disease.
Asunto(s)
VIH , Investigación Cualitativa , MenoresRESUMEN
Onze pessoas com fibrose cística (FC) foram entrevistadas a respeito de suas experiências com a doença. Os seus testemunhos foram analisados em três etapas: descrição, redução e interpretação. A etapa de descrição apontou para a dificuldade de conciliar o tratamento da doença com demandas de escola e trabalho. Já a redução evidenciou um fenômeno central das experiências dos pacientes: o choque com o diagnóstico e a dificuldade de aceitação da doença. A análise crítica levou ao entendimento de que crescer com fibrose cística é uma experiência única, embuída de múltiplas aceitações e de desenvolvimento de estratégias de adaptação à doença. Diagnóstico tardio, apoio familiar, a revelação da doença e procura de trabalho são questões constantes na trajetória dos pacientes. Políticas de saúde pública direcionadas à real necessidade dos pacientes portadores de FC e seus familiares devem ser o centro das estratégias para a promoção da saúde e qualidade de vida.
Eleven persons with cystic fibrosis (CF) were interviewed about their experience of growing up with the disease. The testimonies were analyzed in three steps: description, reduction, and interpretation. The description pointed out the difficulty in performing the treatment in accordance to work and study demands. The reduction stressed that the shock with the diagnosis and the difficulty to disclose the disease are a central phenomena of the patients experience. Critical analysis led us to interpret that growing up with CF is a unique experience, reflected in multiple acceptance and adaptation strategies to the disease. Late diagnosis, family support, disease disclosure and the search for a job represent transversal issues in the patients experience. Public health policies should be the cornerstone of strategies promoting health and quality of life designed to meet the true needs of both patients and families.
Once personas con fibrosis quística (FQ) fueron entrevistadas sobre sus experiencias con la enfermedad. Sus testimonios fueron analizados en tres pasos: descripción, reducción e interpretación. Descripción paso señaló la dificultad de conciliar el tratamiento de la enfermedad con las exigencias de la escuela y el trabajo. La reducción mostró un fenómeno central de las experiencias de los pacientes: el impacto del diagnóstico y la dificultad en la aceptación de la enfermedad. La revisión dio lugar a la constatación de que crecer con la fibrosis quística es una experiencia única, imbuida de múltiples aceptaciones y de desarrollo de estrategias de adaptación a la enfermedad. El diagnóstico tardío, el apoyo familiar, la revelación de la enfermedad y la busca de trabajo son temas constantes en la trayectoria de los pacientes. Las políticas públicas de salud dirigidas a las necesidades reales de los pacientes con FQ y sus familias deben ser el centro de las estrategias para promover la salud y la calidad de vida.
Asunto(s)
Humanos , Masculino , Femenino , Enfermedad Crónica/tratamiento farmacológico , Fibrosis Quística/diagnóstico , Acontecimientos que Cambian la Vida , Atención Integral de Salud/métodos , Enfermedad Crónica/psicología , Fibrosis Quística/psicología , Humanización de la Atención , Encuestas y Cuestionarios , Factores SocioeconómicosRESUMEN
Este artigo apresenta a pesquisa na qual buscamos compreender a constituição das práticas pedagógicas através das teorias da ação. Nesse sentido, desenvolvemos um estudo de caso etnográfico em uma escola municipal de Porto Alegre. Obtivemos a colaboração de sete professores de educação física que se encontravam em momentos distintos da docência e observamos que as experiências vividas por eles influenciam fortemente sua prática pedagógica. Identificamos que os professores que problematizam suas práticas o fazem com o auxílio de teorias pedagógicas recentes. A pesquisa foi apresentada aos professores colaboradores como forma de validação do estudo e com o intuito de estabelecer um diálogo com os participantes, promovendo uma discussão sobre suas práticas.
In the present study we seek to comprehend the constitution of pedagogic practices through the theories of action. In this sense, we have developed an ethnographical case study in a district school of Porto Alegre. We had the collaboration of seven physical education teachers who were in distinct moments of their teaching career and we observed that their life experiences strongly influence their pedagogic practices. We found out that the teachers who problematize their practices do so with the help of recent pedagogic theories. The research was presented to the collaborative teachers as a means of validating the study and with the intent of establishing a dialogue with the participants to promote a discussion on their practices.
En este artículo presentamos una investigación en la cual intentamos comprender la constitución de las prácticas pedagógicas a través de las teorías de la acción. En este sentido, desarrollamos un estudio de caso etnográfico en una escuela municipal de Porto Alegre. Hemos tenido la colaboración de siete docentes de educación física que se encuentran en diferentes momentos de la carrera docente y observamos que las experiencias vividas por éstos influencian de manera significativa en su práctica pedagógica. Identificamos que los docentes que problematizan sus prácticas lo hacen con la ayuda de las teorías pedagógicas recientes. La investigación fue presentada a los profesores colaboradores como forma de validación del estudio y con el intuito de establecer un diálogo con los participantes.
RESUMEN
El cuidado de una persona en situación de enfermedad crónica es una realidad cada día más frecuente y afecta la cotidianeidad de muchas familias. Esto implica modificar el curso de la vida y las relaciones personales y familiares, pero es necesario explorar sus significados dentro de esta experiencia. Objetivo: Comprender el significado del cuidado para la diada cuidador familiarpersona con enfermedad crónica. Método: se usó un abordaje cualitativo, exploratorio y descriptivo junto con teoría fundamentada. Los participantes fueron 20 informantes que constituían 10 diadas de Bogotá, Colombia. Se tuvieron en cuenta las normas éticas internacionales y nacionales, fue revisado por un comité de ética institucional. Hallazgos: los resultados arrojaron la Teoría sustantiva: trascender en un 'vínculo especial' de cuidado: el paso de lo evidente a lo intangible. El proceso social básico contiene tres variables: la limitación y necesidad de ayuda, el paso del reto o compromiso al logro y la forma de trascender en un "vínculo especial". Discusión: los resultados se interpretaron a la luz de las teorías de vínculos humanos, el significado de la vida, la autotrascendencia y el desarrollo del concepto de cuidado en la enfermería y otras disciplinas. Conclusiones: el estudio concluye que el significado de cuidado que dan las diadas que viven una experiencia de enfermedad crónica se mueven a través de un eje que les permite reconocer menor funcionalidad física con respuestas instrumentales de cuidado y, al mismo tiempo, mayor reconocimiento del "vínculo especial" que los hace encontrar espacios de proyección y trascendencia necesarios para dar valor a la experiencia.
To care for someone with chronic illness is more frequent every day and this affects families. This involves altering the course of life as well as personal and family relationships. It is necessary to explore the meaning of family care within the experience. Aim: The aim of this study was to understand the meaning of caring for the Dyad: Family caregiver- person with chronic illness. Method: Using a qualitative approach with grounded theory, the author interviewed 20 persons in 10 dyads who were living in Colombia. The study considered the national and international ethical standards and was reviewed by the institutional ethics committee. Findings: The results showed a substantial theory: Transcending on caring a "special bond": that goes from the obvious to the intangible. The basic social process contains three variables: limitation and need of care, from the challenge or commitment to the achievement, and transcending a "special bond". Discussion: The results were interpreted with theories of human bonds, the meaning of life, self-transcendence and the caring concept development in nursing and other disciplines. Conclusions: The study concludes that the meaning for dyads living the experience of chronic illness is moved by a core that permits the recognition of the instrumental care when patient has deterioration physical and, at the same time, to recognize a "special bond" between the family caregiver and the patient. This mutual recognition permits to find a space projection and the required transcendence to value experience.
Asunto(s)
Humanos , Masculino , Femenino , Enfermedad Crónica , Cuidadores , Empatía , Enfermería , Investigación Cualitativa , Relaciones Familiares , Acontecimientos que Cambian la VidaRESUMEN
Relatar o que a mídia está produzindo ou reproduzindo sobre as pessoas velhas, principalmente o que elas fazem e o porquê de serem notícias nas categorias Valorização e Experiência de vida é o objetivo deste artigo, tendo os jornais impressos como focos de nossa análise.
To report what the media is producing or reproducing about elderly people, especially what they do and why they are news in the Valuation and Life Experience categories is the purpose of this article, with printed newspapers as the focus of our analysis.