Finding myself as a cervical cancer survivor: A qualitative study.

PURPOSE: To determine the process and meaning of the experience of women with cervical cancer who had completed treatment within less than 5 years. METHODS: Qualitative study that included 13 women with cervical cancer, who participated after receiving a year of treatment. The data was collected by conducting 16 in-depth interviews that took place in participants' domiciles. Grounded theory procedures were used to conduct the analysis. RESULTS: "Finding myself as a cervical cancer survivor" was identified as the central dimension on the present study, confirmed by 5 subcategories: entering an unknown path, facing what no one can imagine, living with the disease, moving on regardless of the tiredness, and stop suffering for a new opportunity. CONCLUSION: Gaining an understanding of the reality that women with cervical cancer face reveals their strength and capacity to deal with difficulties and late side effects that need to be recognized by health professionals in the face of a disease categorized as deadly and dangerous.

Concepto carga en los modelos teóricos sobre enfermedad crónica: revisión sistemática / Charging concept theoretical models diseasechronic: a systematic review

RESUMEN Objetivo Describir el abordaje de carga que tienen los modelos teóricos sobre enfermedad crónica no trasmisible (ECNT) Metodología La búsqueda de los estudios se realizó definiendo la ventana de observación bajo criterios establecidos para los descriptores modelos teóricos, enfermedad crónica y costo de la enfermedad, en 14 bases de datos como Scielo, Medline, Science direct, Infotrac Health Reference Center Academic, teniendo en cuenta publicaciones arbitradas e incluyendo publicaciones cuantitativas, cualitativas y de revisión, tiempo e idioma de las publicaciones y tipo de estdio tal como se presentan a contiuación. Resultados Las 20 publicaciones registradas van desde el 2005 al 2012. Dentro de ellas aparecen tres grupos para el abordaje de la carga que incluyen el que se basa en un paradigma de cuidado, el que la entiende como un paradigma económico conjunto de la enfermedad y su impacto financiero y los paradigmas eclécticos que admiten la suma de miradas de algunos matices económicos junto con otros propios de la experiencia de vivir o cuidar en situaciones de ECNT. Conclusiones Los modelos teóricos sobre enfermedad crónica evidenciados indican que el concepto se agrupa en tres: la carga vista desde el abordaje del cuidado; el abordaje económico centrado en la enfermedad y su impacto financiero y el abordaje mixto que retoma parcialmente aspectos de los dos anteriores. La comparación de estos hallazgos con la literatura ratifica los grupos encontrados y sugiere la necesidad de hacer explícito el concepto de carga de la ECNT desde el paradigma empleado.(AU)

ABSTRACT Objective To describe the approach of cost of illness within the theoretical models of chronic non communicable disease (NCD) Methodology A systematic literature review was carried by defining observational parameters guided by the key words "theoretical, models" , "chronic disease" and "cost of illness" in 14 databases as Scielo, Medline, Science direct, Infotrac Health Reference Center Academic, including indexed publications of quantitative, qualitative, analysis and review articles, their publication language with an open time definition. Results 20 registered publications were found ranging from 2005 to 2012. Within these publications three groups emerged in the way they approach the burden or illness cost. They include: a group based on a caring paradigm, a group based on an economic paradigm understood as a set of the disease appear and their financial impact and a third group that with an eclectic approach that combined some of the economic aspects as well as some of the experiences of living and caring in situations of NCDs. Conclusions The theoretical models of chronic disease evidenced by this systematic search indicates that the concept of cost of illness is grouped into three: the view from the approach of burden of care; the economic approach focused on the disease and its financial impact and the mixed approach that takes aspects of the previous two. Comparing these findings with the literature confirms the groups founded and suggested the need to make explicit the utilized paradigm within in the conceptualization of the cost of illness while approaching NCDs.(AU)

Carga de la enfermedad crónica para los sujetos implicados en el cuidado / The burden of chronic disease for the subjects involved in the care / Carga da enfermidade crônica para os sujeitos implicados no cuidado

RESUMEN Objetivo: determinar el significado que se ha dado al concepto de carga de la enfermedad crónica no transmisible en pacientes, cuidadores familiares, profesionales del área de la salud e instituciones prestadoras de servicios de salud. Metodología: revisión realizada mediante las bases de datos LILACS, Sage, Willey online Library, Scopus, Bireme, Scielo, ScienceDirect, PubMed, Cuiden y Proquest. Resultados: Se encontraron 538 artículos relacionados de los cuales se seleccionaron 58 para el análisis agrupados en tres categorías: esfuerzo físico, esfuerzo psicosocial y esfuerzo económico adicional. Conclusiones: el significado de carga de la enfermedad crónica es construida entre pacientes y cuidadores desde la vivencia y los impactos en su ámbito privado, es decir en lo personal y familiar. Los profesionales de salud y las instituciones, reconocen la importancia de la vivencia de la enfermedad en el paciente y la familia, sin embargo dan prioridad al impacto económico que la carga tiene sobre las mismas instituciones y los sistemas de salud.

ABSTRACT Objective: to determine the meaning given to the concept of burden of chronic non-communicable disease among patients, family caregivers, health care professionals and health service institutions. Methodology: a systematic review conducted using the following databases: LILACS, Sage, Willey Online Library, Scopus, Bireme, Scielo, ScienceDirect, PubMed, Proquest and Cuiden. Results: a total of 538 papers were found, 58 of which were selected for analysis. These papers formed three categories: physical burden, psychosocial burden and additional financial effort. Conclusions: the meaning of the burden of chronic disease is built by patients and their caregivers on the basis of their experience and the effects of the illness on their private life, i.e. the impact at the personal or family levels. Health professionals and institutions acknowledge the importance of the experience of the disease for the patient and family, but they both give priority to its economic impact at an institutional and health system level.

RESUMO Objetivo: Determinar o significado que se tem dado ao conceito: a carga da enfermidade crónica não transmissível em pacientes, cuidadores familiares, profissionais da área da saúde e instituições prestadoras de serviços de saúde. Materiais e métodos: Revisão realizada mediante as bases de dados LILACS, Sage, Willey online Library, Scopus, Bireme, Scielo, ScienceDirect, PubMed, Cuidem y Proquest. Resultados: Se encontraram 538 artigos relacionados dos quais se selecionaram 58 para o análise agrupados em três categorias: esforço físico, esforço psicossocial e esforço económico adicional. Conclusões: O significado de carga da enfermidade crônica é construída entre pacientes e cuidadores desde a vivencia os impactos no seu âmbito privado, é dizer no pessoal e familiar. Os profissionais de saúde e as instituições reconhecem a importância da vivencia da enfermidade no paciente e a família, mas dando prioridade ao impacto econômico que a carga tem sobre as mesmas instituições e os sistemas de saúde.

Carga del cuidado y calidad de vida en cuidadores familiares de personas con enfermedad respiratoria crónica / Burden load and quality of life in family caregivers of people with chronic respiratory disease / A carga do cuidado e a qualidade de vida em cuidadores familiares de pessoas com doença respiratória crônica

Objetivo: establecer la relación entre la carga del cuidado y la calidad de vida en cuidadores familiares de personas con enfermedades respiratorias crónicas. Método: estudio de abordaje cuantitativo descriptivo, de correlación, y corte transversal. Participaron 55 cuidadores familiares que asisten a una institución de tercer nivel de atención en salud de la ciudad de Bucaramanga. Se utilizaron los instrumentos: encuesta de caracterización del cuidador familiar de persona con enfermedad crónica GCPCC-UNC, calidad de vida versión familiar de persona con enfermedad crónica y Carga del cuidado de Zarit. El análisis se realizó mediante estadística descriptiva con medidas de tendencia central y de dispersión y la determinación del coeficiente de correlación de Spearman. Resultados: los cuidadores familiares son en su mayoría mujeres, de estratos socioeconómicos bajos, ocupación hogar, una mediana de 18 horas día a la asistencia y cuidado; presentan una calidad de vida global percibida media. En cuanto a la carga del cuidado el 23,7% de los cuidadores presenta una sobrecarga severa, el 27,3% sobrecarga leve y el 49%, no presentan sobrecarga de acuerdo con la clasificación establecida por Zarit. El coeficiente de correlación de Spearman obtenido fue de -0,783 estadísticamente significativo (p=0,00) Conclusión: existe una correlación inversa entre la calidad de vida y la carga de cuidado de los cuidadores familiares de personas con enfermedad respiratoria crónica.

Objective: to establish the relationship between the care burden and quality of life of family caregivers of patients with chronic respiratory diseases. Method: a quantitative, descriptive, correlation, and cross sectional study performed with 55 family caregivers attending a tertiary health care institution in the city of Bucaramanga. The following instruments were used: characterization survey of the family caregivers of people with chronic conditions, quality of life family version of chronically ill patients and Zarit Burden Interview. The analysis was performed using descriptive statistical measures of central tendency and dispersion and determining the Spearman correlation coefficient. Results: family caregivers are mostly housewives from low social classes performing a median of 18 hours of day assistance and care. Likewise, their overall perceived quality of life is medium. As for the burden of caring, 23.7% of caregivers have severe overload, 27.3% have mild overload and 49% have no overload according to the classification established by Zarit. In addition, the Spearman correlation coefficient obtained was -0.783 and statistically significant (p = 0,00). Conclusion: there is an inverse correlation between quality of life and burden of care for the family caregivers of patients with chronic respiratory diseases.

Objetivo: estabelecer a relação entre a carga do cuidado e a qualidade de vida em cuidadores familiares de pessoas com doenças respiratórias crônicas. Metodologia: estudo de tipo quantitativo descritivo, transversal, de correlação. Participaram 55 cuidadores familiares que participam em uma instituição de saúde nível 3, na cidade de Bucaramanga. Os instrumentos utilizados foram: enquete de caracterização do cuidador familiar de pessoa com doença crônica, qualidade de vida versão familiar de pessoa com doença crônica e Carga do cuidado na escala Zarit. A análise realizou-se por meio da estatística descritiva com medidas de tendência central e de dispersão, e a determinação do coeficiente de correlação de Spearman. Resultados : a maioria dos cuidadores familiares é composta de mulheres, de classes socioeconômicas baixas, donas de casa, com mediana de 18 horas dia para assistência e cuidado, apresentam uma qualidade de vida global percebida média. Referente à carga do cuidado, 23,7% dos cuidadores está sobrecarregado severamente, 27,3 está sobrecarregado levemente, e 49% não está sobrecarregado, segundo a classificação estabelecida pela escala Zarit. O coeficiente de correlação de Spearman obtido foi de 0,783, estatisticamente significativo (p = 0,00) Conclusão: existe uma correlação inversa entre a qualidade de vida e a carga dos cuidadores familiares de pessoas com doença respiratória crônica.

[Charging concept theoretical models disease chronic: a systematic review]. / Concepto carga en los modelos teóricos sobre enfermedad crónica: revisión sistemática.

OBJECTIVE: To describe the approach of cost of illness within the theoretical models of chronic non communicable disease (NCD). METHODOLOGY: A systematic literature review was carried by defining observational parameters guided by the key words "theoretical, models" , "chronic disease" and "cost of illness" in 14 databases as Scielo, Medline, Science direct, Infotrac Health Reference Center Academic, including indexed publications of quantitative, qualitative, analysis and review articles, their publication language with an open time definition. RESULTS: 20 registered publications were found ranging from 2005 to 2012. Within these publications three groups emerged in the way they approach the burden or illness cost. They include: a group based on a caring paradigm, a group based on an economic paradigm understood as a set of the disease appear and their financial impact and a third group that with an eclectic approach that combined some of the economic aspects as well as some of the experiences of living and caring in situations of NCDs. CONCLUSIONS: The theoretical models of chronic disease evidenced by this systematic search indicates that the concept of cost of illness is grouped into three: the view from the approach of burden of care; the economic approach focused on the disease and its financial impact and the mixed approach that takes aspects of the previous two. Comparing these findings with the literature confirms the groups founded and suggested the need to make explicit the utilized paradigm within in the conceptualization of the cost of illness while approaching NCDs.

OBJETIVO: Describir el abordaje de carga que tienen los modelos teóricos sobre enfermedad crónica no trasmisible (ECNT). METODOLOGÍA: La búsqueda de los estudios se realizó definiendo la ventana de observación bajo criterios establecidos para los descriptores modelos teóricos, enfermedad crónica y costo de la enfermedad, en 14 bases de datos como Scielo, Medline, Science direct, Infotrac Health Reference Center Academic, teniendo en cuenta publicaciones arbitradas e incluyendo publicaciones cuantitativas, cualitativas y de revisión, tiempo e idioma de las publicaciones y tipo de estdio tal como se presentan a contiuación. RESULTADOS: Las 20 publicaciones registradas van desde el 2005 al 2012. Dentro de ellas aparecen tres grupos para el abordaje de la carga que incluyen el que se basa en un paradigma de cuidado, el que la entiende como un paradigma económico conjunto de la enfermedad y su impacto financiero y los paradigmas eclécticos que admiten la suma de miradas de algunos matices económicos junto con otros propios de la experiencia de vivir o cuidar en situaciones de ECNT. CONCLUSIONES: Los modelos teóricos sobre enfermedad crónica evidenciados indican que el concepto se agrupa en tres: la carga vista desde el abordaje del cuidado; el abordaje económico centrado en la enfermedad y su impacto financiero y el abordaje mixto que retoma parcialmente aspectos de los dos anteriores. La comparación de estos hallazgos con la literatura ratifica los grupos encontrados y sugiere la necesidad de hacer explícito el concepto de carga de la ECNT desde el paradigma empleado.