Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Tipo de documento: | Tese |
Idioma: | por |
Título da fonte: | Repositório Institucional da UFMT |
Texto Completo: | http://ri.ufmt.br/handle/1/5710 |
Resumo: | In this thesis, I approach the concept of Potency, proposed by the philosopher Baruch Espinosa, articulated to the care provided by two families of children diagnosed with a rare congenital illness, one with a microdeletion of the 3q29 gene and the other with a rare lymphatic vascular malformation. The objective of the research was to understand the power involved in the care provided by families of children with a rare congenital illness. The concept of Potency refers to the variable and flexible strength/intensity, which leads the human to persevere in his own being and oscillates according to the affections-affections. Affection refers to the effect of one body on another, affection translates into the mixing of two bodies, a body that acts on another and collects traces of the first. I started from the assumption that people have power to care, which oscillates increasing, decreasing or remaining constant according to the elements and contextual situations that influence actions to build/rebuild care strategies. Based on a qualitative approach and on experience studies that privilege the perspective of people who experience the illness-care process firsthand, the data were produced from January to November 2022 with the reference caregivers in the families (two mothers and a grandmother ), based on comprehensive interviews in a virtual environment, WhatsApp conversations and follow-up on the social network Instagram. Through a careful reading of the empirical material, I searched for the nuclei of meanings by the striking aspects of the experience, following the construction of themes related to the analytical power-care axis, which composed the results. The families' power of care proved to be oscillating due to the internal and external affections of the family that influenced the way they responded to the care demands. I identified people and institutions that families accessed to provide care, as well as what circulated in the flow of social networks. Familist logic permeates public policies and institutions, and making women accountable has proven to reduce power, given the historical, moral and naturally imposed overload that constrains the various ways in which they could fully exercise their lives, restricting them to the destiny of caring. Daily and prolonged care, given the chronicity of the cases, improves knowledge through experience, which overflowed from the particular case to collective care through the activism of mothers in social media, translating into potency for solidary care. Affections revealed themselves in multiple possibilities to influence the power of families of children with rare illnesses, however, they were not determinants in the construction of care, being necessary to consider the force of Desire, the complexity involved in the process of the affection and all the contextual contingency where these phenomena occur. This study is relevant for the practice of Health and Nursing and can contribute to the construction of relational, sensitive, collective and ethical care that considers the child and caregivers in democratic societies that defend/promote health and care as rights. |
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Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênitoPotência de cuidadoDoenças rarasSíndrome congênita raraCuidado da criançaCuidadores familiaresCNPQ::CIENCIAS DA SAUDE::ENFERMAGEMPotency to careRare diseasesRare congenital syndromeChild careFamily caregiversIn this thesis, I approach the concept of Potency, proposed by the philosopher Baruch Espinosa, articulated to the care provided by two families of children diagnosed with a rare congenital illness, one with a microdeletion of the 3q29 gene and the other with a rare lymphatic vascular malformation. The objective of the research was to understand the power involved in the care provided by families of children with a rare congenital illness. The concept of Potency refers to the variable and flexible strength/intensity, which leads the human to persevere in his own being and oscillates according to the affections-affections. Affection refers to the effect of one body on another, affection translates into the mixing of two bodies, a body that acts on another and collects traces of the first. I started from the assumption that people have power to care, which oscillates increasing, decreasing or remaining constant according to the elements and contextual situations that influence actions to build/rebuild care strategies. Based on a qualitative approach and on experience studies that privilege the perspective of people who experience the illness-care process firsthand, the data were produced from January to November 2022 with the reference caregivers in the families (two mothers and a grandmother ), based on comprehensive interviews in a virtual environment, WhatsApp conversations and follow-up on the social network Instagram. Through a careful reading of the empirical material, I searched for the nuclei of meanings by the striking aspects of the experience, following the construction of themes related to the analytical power-care axis, which composed the results. The families' power of care proved to be oscillating due to the internal and external affections of the family that influenced the way they responded to the care demands. I identified people and institutions that families accessed to provide care, as well as what circulated in the flow of social networks. Familist logic permeates public policies and institutions, and making women accountable has proven to reduce power, given the historical, moral and naturally imposed overload that constrains the various ways in which they could fully exercise their lives, restricting them to the destiny of caring. Daily and prolonged care, given the chronicity of the cases, improves knowledge through experience, which overflowed from the particular case to collective care through the activism of mothers in social media, translating into potency for solidary care. Affections revealed themselves in multiple possibilities to influence the power of families of children with rare illnesses, however, they were not determinants in the construction of care, being necessary to consider the force of Desire, the complexity involved in the process of the affection and all the contextual contingency where these phenomena occur. This study is relevant for the practice of Health and Nursing and can contribute to the construction of relational, sensitive, collective and ethical care that considers the child and caregivers in democratic societies that defend/promote health and care as rights.Nesta tese me aproximo do conceito de Potência, proposto pelo filósofo Baruch Espinosa, articulado ao cuidado realizado por duas famílias de crianças com diagnóstico de adoecimento raro congênito, sendo uma de microdeleção do gene 3q29 e a outra de má-formação vascular linfática rara. O objetivo da pesquisa foi compreender a potência envolvida no cuidado realizado por famílias de crianças com adoecimento raro congênito. O conceito de Potência se refere à força/intensidade variável e flexível, que leva o humano a perseverar em seu próprio ser e oscila de acordo com os afetos-afecções. O afeto se refere ao efeito de um corpo sobre outro, a afecção se traduz na mistura de dois corpos, um corpo que age sobre outro e recolhe traços do primeiro. Parti do pressuposto de que as pessoas têm potência para cuidar, a qual oscila aumentando, diminuindo ou permanecendo constante conforme os elementos e situações contextuais influenciam nas ações para construir/reconstruir estratégias de cuidado. Embasada na abordagem qualitativa e nos estudos da experiência que privilegiam a perspectiva das pessoas que sentem na pele o processo de adoecimento-cuidado, os dados foram produzidos de janeiro a novembro de 2022 junto às pessoas cuidadoras de referência nas famílias (duas mães e uma avó), a partir de entrevistas compreensivas em ambiente virtual, conversas pelo Whatsapp e acompanhamento na rede social Instagram. Através da leitura atenta do material empírico, busquei os núcleos de sentidos pelos aspectos marcantes da experiência, seguindo à construção de temas referentes ao eixo analítico potência–cuidado, que compuseram os resultados. A potência de cuidado das famílias se revelou oscilante mediante os afetos internos e externos à família que exerceram influências sobre o modo como elas responderam às demandas de cuidado. Identifiquei pessoas e instituições que as famílias acessaram para prover o cuidado, bem como aquilo que circulou no fluxo das redes socias. A lógica familista permeia políticas públicas e instituições sendo que a responsabilização das mulheres se mostrou redutora da potência, visto a sobrecarga histórica, moral e naturalizadamente imposta que constrange os diversos modos pelos quais poderiam exercer plenamente suas vidas, restringindo-as ao destino de cuidar. O cuidado cotidiano e prolongado, dada a cronicidade dos casos, aperfeiçoa o saber pela experiência, que transbordou do caso particular para o cuidado coletivo pelo ativismo das mães nas mídias sociais, traduzindo-se em potência ao cuidado solidário. Os afetos se revelaram em múltiplas possibilidades de influenciar a potência das famílias de crianças com adoecimentos raros, porém, não se constituíram determinantes nas construções do cuidado, sendo necessário considerar a força do Desejo, a complexidade envolvida no processo da afecção e toda a contingência contextual em que esses fenômenos ocorrem. Esse estudo é revelante para prática de Saúde e Enfermagem podendo contribuir para a construção do cuidado relacional, sensível, coletivo e ético que considere a criança e as pessoas cuidadoras em sociedades democráticas que defendam/promovam a saúde e o cuidado como direitos.Universidade Federal de Mato GrossoBrasilFaculdade de Enfermagem (FAEN)UFMT CUC - CuiabáPrograma de Pós-Graduação em EnfermagemBarsaglini, Reni Aparecidahttp://lattes.cnpq.br/0107366713688433Nicolau, Karine Wlasenko877.133.579-04http://lattes.cnpq.br/7180650547115138Mufato, Leandro Felipe049.175.339-02http://lattes.cnpq.br/5307031392202449071.870.838-58Moreira, Martha Cristina Nunes012.388.967-74http://lattes.cnpq.br/8624031048576028Biato, Emília Carvalho Leitão081.548.867-07http://lattes.cnpq.br/1776414386448708Androlage, Juliana Soares2024-08-13T16:21:15Z2023-05-192024-08-13T16:21:15Z2023-03-17info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/doctoralThesisANDROLAGE, Juliana Soares. Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito. 2023. 137 f. Tese (Doutorado em Enfermagem) - Universidade Federal de Mato Grosso, Faculdade de Enfermagem, Cuiabá, 2023.http://ri.ufmt.br/handle/1/5710porinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFMTinstname:Universidade Federal de Mato Grosso (UFMT)instacron:UFMT2024-08-15T07:01:45Zoai:localhost:1/5710Repositório InstitucionalPUBhttp://ri.ufmt.br/oai/requestjordanbiblio@gmail.comopendoar:2024-08-15T07:01:45Repositório Institucional da UFMT - Universidade Federal de Mato Grosso (UFMT)false |
dc.title.none.fl_str_mv |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
title |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
spellingShingle |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito Androlage, Juliana Soares Potência de cuidado Doenças raras Síndrome congênita rara Cuidado da criança Cuidadores familiares CNPQ::CIENCIAS DA SAUDE::ENFERMAGEM Potency to care Rare diseases Rare congenital syndrome Child care Family caregivers |
title_short |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
title_full |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
title_fullStr |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
title_full_unstemmed |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
title_sort |
Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito |
author |
Androlage, Juliana Soares |
author_facet |
Androlage, Juliana Soares |
author_role |
author |
dc.contributor.none.fl_str_mv |
Barsaglini, Reni Aparecida http://lattes.cnpq.br/0107366713688433 Nicolau, Karine Wlasenko 877.133.579-04 http://lattes.cnpq.br/7180650547115138 Mufato, Leandro Felipe 049.175.339-02 http://lattes.cnpq.br/5307031392202449 071.870.838-58 Moreira, Martha Cristina Nunes 012.388.967-74 http://lattes.cnpq.br/8624031048576028 Biato, Emília Carvalho Leitão 081.548.867-07 http://lattes.cnpq.br/1776414386448708 |
dc.contributor.author.fl_str_mv |
Androlage, Juliana Soares |
dc.subject.por.fl_str_mv |
Potência de cuidado Doenças raras Síndrome congênita rara Cuidado da criança Cuidadores familiares CNPQ::CIENCIAS DA SAUDE::ENFERMAGEM Potency to care Rare diseases Rare congenital syndrome Child care Family caregivers |
topic |
Potência de cuidado Doenças raras Síndrome congênita rara Cuidado da criança Cuidadores familiares CNPQ::CIENCIAS DA SAUDE::ENFERMAGEM Potency to care Rare diseases Rare congenital syndrome Child care Family caregivers |
description |
In this thesis, I approach the concept of Potency, proposed by the philosopher Baruch Espinosa, articulated to the care provided by two families of children diagnosed with a rare congenital illness, one with a microdeletion of the 3q29 gene and the other with a rare lymphatic vascular malformation. The objective of the research was to understand the power involved in the care provided by families of children with a rare congenital illness. The concept of Potency refers to the variable and flexible strength/intensity, which leads the human to persevere in his own being and oscillates according to the affections-affections. Affection refers to the effect of one body on another, affection translates into the mixing of two bodies, a body that acts on another and collects traces of the first. I started from the assumption that people have power to care, which oscillates increasing, decreasing or remaining constant according to the elements and contextual situations that influence actions to build/rebuild care strategies. Based on a qualitative approach and on experience studies that privilege the perspective of people who experience the illness-care process firsthand, the data were produced from January to November 2022 with the reference caregivers in the families (two mothers and a grandmother ), based on comprehensive interviews in a virtual environment, WhatsApp conversations and follow-up on the social network Instagram. Through a careful reading of the empirical material, I searched for the nuclei of meanings by the striking aspects of the experience, following the construction of themes related to the analytical power-care axis, which composed the results. The families' power of care proved to be oscillating due to the internal and external affections of the family that influenced the way they responded to the care demands. I identified people and institutions that families accessed to provide care, as well as what circulated in the flow of social networks. Familist logic permeates public policies and institutions, and making women accountable has proven to reduce power, given the historical, moral and naturally imposed overload that constrains the various ways in which they could fully exercise their lives, restricting them to the destiny of caring. Daily and prolonged care, given the chronicity of the cases, improves knowledge through experience, which overflowed from the particular case to collective care through the activism of mothers in social media, translating into potency for solidary care. Affections revealed themselves in multiple possibilities to influence the power of families of children with rare illnesses, however, they were not determinants in the construction of care, being necessary to consider the force of Desire, the complexity involved in the process of the affection and all the contextual contingency where these phenomena occur. This study is relevant for the practice of Health and Nursing and can contribute to the construction of relational, sensitive, collective and ethical care that considers the child and caregivers in democratic societies that defend/promote health and care as rights. |
publishDate |
2023 |
dc.date.none.fl_str_mv |
2023-05-19 2023-03-17 2024-08-13T16:21:15Z 2024-08-13T16:21:15Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/doctoralThesis |
format |
doctoralThesis |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
ANDROLAGE, Juliana Soares. Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito. 2023. 137 f. Tese (Doutorado em Enfermagem) - Universidade Federal de Mato Grosso, Faculdade de Enfermagem, Cuiabá, 2023. http://ri.ufmt.br/handle/1/5710 |
identifier_str_mv |
ANDROLAGE, Juliana Soares. Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito. 2023. 137 f. Tese (Doutorado em Enfermagem) - Universidade Federal de Mato Grosso, Faculdade de Enfermagem, Cuiabá, 2023. |
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http://ri.ufmt.br/handle/1/5710 |
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por |
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info:eu-repo/semantics/openAccess |
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openAccess |
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Universidade Federal de Mato Grosso Brasil Faculdade de Enfermagem (FAEN) UFMT CUC - Cuiabá Programa de Pós-Graduação em Enfermagem |
publisher.none.fl_str_mv |
Universidade Federal de Mato Grosso Brasil Faculdade de Enfermagem (FAEN) UFMT CUC - Cuiabá Programa de Pós-Graduação em Enfermagem |
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reponame:Repositório Institucional da UFMT instname:Universidade Federal de Mato Grosso (UFMT) instacron:UFMT |
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Universidade Federal de Mato Grosso (UFMT) |
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Repositório Institucional da UFMT - Universidade Federal de Mato Grosso (UFMT) |
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jordanbiblio@gmail.com |
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