Tainá Maués Pelúcio Pizzignacco

A experiência da doença na fibrose cística: caminhos para o cuidado integral

Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of Sao Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and childs socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of São Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and childs socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.

Socialization of children and adolescents with cystic fibrosis: support for nursing care

O presente estudo tem por objetivo conhecer o dia-a-dia (escola, trabalho, atividades de lazer e interacoes com a familia e amigos) da crianca e do adolescente com Fibrose Cistica (FC), a partir de suas proprias vivencias, bem como identificar situacoes que possam interferir nesse cotidiano. Os sujeitos da pesquisa sao criancas e adolescentes portadores de Fibrose Cistica em acompanhamento num hospital-escola do interior do estado de Sao Paulo. Trata-se de pesquisa com abordagem qualitativa, com coleta de dados empiricos realizada mediante analise de prontuarios e entrevista aberta. Dos dados, emergiram os seguintes temas: conhecimento equivocado sobre a doenca; preocupacao com a auto-imagem; busca pelo autocuidado e esperanca de melhorias no futuro. Os resultados evidenciam as repercussoes da Fibrose Cistica no processo de socializacao desses pacientes, salientando a importância dos profissionais de saude conhecerem essas demandas e incorporarem-nas ao plano de cuidados, visando a intervencoes efetivas que promovam o crescimento e o desenvolvimento infanto-juvenil.La finalidad de este estudio es conocer el dia a dia (escuela, trabajo, actividades de ocio e interacciones con la familia y amigos) del nino y del adolescente con Fibrosis Quistica (FQ) a partir de sus propias vivencias e identificar situaciones que puedan interferir en esa cotidianidad. Los sujetos de la investigacion son ninos y adolescentes portadores de Fibrosis Quistica bajo seguimiento en un hospital-escuela del interior del Estado de Sao Paulo, Brasil, con edad entre 7 y 18 anos. Efectuamos una investigacion con aproximacion cualitativa. Los datos empiricos fueron recopilados mediante el analisis de registros medicos y entrevistas abiertas, revelando los siguientes temas: conocimiento equivocado sobre la enfermedad; preocupacion con el autoimagen; busqueda por autocuidado y esperanza de mejoras en el futuro. Los resultados evidencian las repercusiones de la Fibrosis Quistica en el proceso de socializacion de esos pacientes, es importante que los profesionales de salud conozcan esas demandas y las incorporen al plan de cuidados, con vistas a intervenciones efectivas que promuevan el crecimiento y desarrollo infanto-juvenil.

Criança dependente de tecnologia: a experiência do cuidado materno

The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.

The experience of disease in cystic fibrosis: the paths to comprehensive care

Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of Sao Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and childs socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of São Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and childs socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.

Technology-dependent children: the maternal care experience

The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.

O processo de socialização de crianças e adolescentes com fibrose cística: subsídios para o cuidado de enfermagem

O presente estudo tem por objetivo conhecer o dia-a-dia (escola, trabalho, atividades de lazer e interacoes com a familia e amigos) da crianca e do adolescente com Fibrose Cistica (FC), a partir de suas proprias vivencias, bem como identificar situacoes que possam interferir nesse cotidiano. Os sujeitos da pesquisa sao criancas e adolescentes portadores de Fibrose Cistica em acompanhamento num hospital-escola do interior do estado de Sao Paulo. Trata-se de pesquisa com abordagem qualitativa, com coleta de dados empiricos realizada mediante analise de prontuarios e entrevista aberta. Dos dados, emergiram os seguintes temas: conhecimento equivocado sobre a doenca; preocupacao com a auto-imagem; busca pelo autocuidado e esperanca de melhorias no futuro. Os resultados evidenciam as repercussoes da Fibrose Cistica no processo de socializacao desses pacientes, salientando a importância dos profissionais de saude conhecerem essas demandas e incorporarem-nas ao plano de cuidados, visando a intervencoes efetivas que promovam o crescimento e o desenvolvimento infanto-juvenil.La finalidad de este estudio es conocer el dia a dia (escuela, trabajo, actividades de ocio e interacciones con la familia y amigos) del nino y del adolescente con Fibrosis Quistica (FQ) a partir de sus propias vivencias e identificar situaciones que puedan interferir en esa cotidianidad. Los sujetos de la investigacion son ninos y adolescentes portadores de Fibrosis Quistica bajo seguimiento en un hospital-escuela del interior del Estado de Sao Paulo, Brasil, con edad entre 7 y 18 anos. Efectuamos una investigacion con aproximacion cualitativa. Los datos empiricos fueron recopilados mediante el analisis de registros medicos y entrevistas abiertas, revelando los siguientes temas: conocimiento equivocado sobre la enfermedad; preocupacion con el autoimagen; busqueda por autocuidado y esperanza de mejoras en el futuro. Los resultados evidencian las repercusiones de la Fibrosis Quistica en el proceso de socializacion de esos pacientes, es importante que los profesionales de salud conozcan esas demandas y las incorporen al plan de cuidados, con vistas a intervenciones efectivas que promuevan el crecimiento y desarrollo infanto-juvenil.

Lola tinha uma coisa: construção de um livro educativo para crianças com fibrose cística

This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.

Niños adictos a la tecnología: la experiencia del cuidado materno

The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.The objective of this study is to understand the maternal experience of caring for a technology-dependent child. We used the ethnographic case study approach, as well as the genogram, ecomap, open interview and observation methods as data collection instruments. The data were organized into three meaning units: the search for causes and culprits; hospital discharge and the demand for care; and the support networks. The study allowed for an understanding of the mothers experience of searching for explanations, as well as feelings of distrust, insecurity and dissatisfaction towards the health service provided. In addition, the mothers organization regarding the childs care and in terms of readying the home environment to receive the child, the use of support networks, and particularly the need for attachment with family and neighbors and the formal and informal search to assure the subsistence of her ill child as well as her other children were explored.

Lola tenía una cosa: construcción de un libro educativo para niños con fibrosis cística

This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.

Lola had one thing: building an educational book for children with cystic fibrosis

This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.This work describes the experience of constructing a story book with the objective of helping health professionals and families to share with children less than 5 years about their diagnosis of cystic fibrosis. The book tells the story of Lola, a child who discovers she has cystic fibrosis and creates an imaginary monster as a representation of the disease. The experience emerged out of professional practice in an outpatient multidisciplinary service for these patients, translating the importance of reconciling theory and practice, and interdisciplinarity for the construction of innovative and creative strategies in the development of comprehensive care.