Potência e cuidado cotidiano por famílias de crianças com adoecimento raro congênito

Detalhes bibliográficos
Autor(a) principal: Androlage, Juliana Soares
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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spelling 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.
url http://ri.ufmt.br/handle/1/5710
dc.language.iso.fl_str_mv por
language por
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv 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
dc.source.none.fl_str_mv reponame:Repositório Institucional da UFMT
instname:Universidade Federal de Mato Grosso (UFMT)
instacron:UFMT
instname_str Universidade Federal de Mato Grosso (UFMT)
instacron_str UFMT
institution UFMT
reponame_str Repositório Institucional da UFMT
collection Repositório Institucional da UFMT
repository.name.fl_str_mv Repositório Institucional da UFMT - Universidade Federal de Mato Grosso (UFMT)
repository.mail.fl_str_mv jordanbiblio@gmail.com
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