Estomias gastrointestinais em crianças e adolescentes: experiência da família

Detalhes bibliográficos
Ano de defesa: 2014
Autor(a) principal: Zacarin, Clara Ferraz Lazarini
Orientador(a): Dupas, Giselle lattes
Banca de defesa: Não Informado pela instituição
Tipo de documento: Dissertação
Tipo de acesso: Acesso aberto
Idioma: por
Instituição de defesa: Universidade Federal de São Carlos
Programa de Pós-Graduação: Programa de Pós-Graduação em Enfermagem - PPGEnf
Departamento: Não Informado pela instituição
País: BR
Palavras-chave em Português:
Palavras-chave em Inglês:
Área do conhecimento CNPq:
Link de acesso: https://repositorio.ufscar.br/handle/ufscar/3274
Resumo: Gastrointestinal stoma are openings in the skin that enable the extracorporeal communication of the stomach or intestine to gain access to the body when there is need to divert traffic from the normal supply or disposal. The ostomy of the gastrointestinal tract in children are part of malignancies, benign, inflammatory, congenital or traumatic treatments. Having a stoma in childhood and/or adolescence makes physical and psychological changes, because of organic immaturity, and affects the body integrity, social interaction and quality of life. Caring for a child with ostomy brings impacts to the family and generates hard demand of permanent and specific care. This study aimed to understand the experience of families with children and adolescents who have gastrointestinal stomas. Qualitative approach was used, in light of Symbolic Interactionism as a theoretical framework and the methodological framework of Narrative Analysis. For data collection, were used conducted interviews by guiding questions and during the same interviews were made the construction of the genogram and ecomap to characterize the family . Interviews were conducted with 16 families, 12 with children and 4 with adolescents with gastrointestinal stoma using outpatient nutritional or ostomy services. In six families the children had intestinal stomas and ten had gastrostomy. The analysis process has resulted in 6 themes and categories: 1. Impact of unexpected illness (Facing the stoma as a consequence / Senso undergone a many procedures); 2 Acceptation of the ostomy (having difficulty accepting the stoma / Leaving reach the limit); 3 - Changes in family life (Adapting to the managements of the devices / Leaving aside the social life); 4 - Helplessness on the walk (having superficial support / Living with prejudice); 5 - Benefits of ostomy; 6 - Search the social reintegration (Seeing the power social interaction / Waiting for reversal). The results of this study allowed us to understand that the family of the child or adolescent with gastrointestinal stoma goes through a process of progressive experience and acceptance of the condition of the child, which starts with the impact of the diagnosis of unexpected illness. Feelings like fear and insecurity are evidenced by distancing and denial of the need to make the stoma. After the acceptance and learning period, the family notice the clinical and health improves of the child, but goes through prejudice situations and alienation of the extended family, difficulties in maintaining employment, and maternal burden in the care of the ostomy´s son. The support network is reduced and there is only strengthened ties among members of the nuclear family. Even before the difficulties the family has a positive view of the stoma, but crave reenter the child/adolescente in society through the stoma reversal in the case of intestinal and through oral feeding, at the gastrostomy, even when it is permanent. The results of this study make it possible to broaden our understanding of the experience, which in turn improves the care of these families, Being a breakthrough for the field of nursing.
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spelling Zacarin, Clara Ferraz LazariniDupas, Gisellehttp://lattes.cnpq.br/9461883918498554http://lattes.cnpq.br/58347401725514222016-06-02T19:48:25Z2014-08-262016-06-02T19:48:25Z2014-06-18ZACARIN, Clara Ferraz Lazarini. Estomias gastrointestinais em crianças e adolescentes: experiência da família. 2014. 130 f. Dissertação (Mestrado em Ciências da Saúde) - Universidade Federal de São Carlos, São Carlos, 2014.https://repositorio.ufscar.br/handle/ufscar/3274Gastrointestinal stoma are openings in the skin that enable the extracorporeal communication of the stomach or intestine to gain access to the body when there is need to divert traffic from the normal supply or disposal. The ostomy of the gastrointestinal tract in children are part of malignancies, benign, inflammatory, congenital or traumatic treatments. Having a stoma in childhood and/or adolescence makes physical and psychological changes, because of organic immaturity, and affects the body integrity, social interaction and quality of life. Caring for a child with ostomy brings impacts to the family and generates hard demand of permanent and specific care. This study aimed to understand the experience of families with children and adolescents who have gastrointestinal stomas. Qualitative approach was used, in light of Symbolic Interactionism as a theoretical framework and the methodological framework of Narrative Analysis. For data collection, were used conducted interviews by guiding questions and during the same interviews were made the construction of the genogram and ecomap to characterize the family . Interviews were conducted with 16 families, 12 with children and 4 with adolescents with gastrointestinal stoma using outpatient nutritional or ostomy services. In six families the children had intestinal stomas and ten had gastrostomy. The analysis process has resulted in 6 themes and categories: 1. Impact of unexpected illness (Facing the stoma as a consequence / Senso undergone a many procedures); 2 Acceptation of the ostomy (having difficulty accepting the stoma / Leaving reach the limit); 3 - Changes in family life (Adapting to the managements of the devices / Leaving aside the social life); 4 - Helplessness on the walk (having superficial support / Living with prejudice); 5 - Benefits of ostomy; 6 - Search the social reintegration (Seeing the power social interaction / Waiting for reversal). The results of this study allowed us to understand that the family of the child or adolescent with gastrointestinal stoma goes through a process of progressive experience and acceptance of the condition of the child, which starts with the impact of the diagnosis of unexpected illness. Feelings like fear and insecurity are evidenced by distancing and denial of the need to make the stoma. After the acceptance and learning period, the family notice the clinical and health improves of the child, but goes through prejudice situations and alienation of the extended family, difficulties in maintaining employment, and maternal burden in the care of the ostomy´s son. The support network is reduced and there is only strengthened ties among members of the nuclear family. Even before the difficulties the family has a positive view of the stoma, but crave reenter the child/adolescente in society through the stoma reversal in the case of intestinal and through oral feeding, at the gastrostomy, even when it is permanent. The results of this study make it possible to broaden our understanding of the experience, which in turn improves the care of these families, Being a breakthrough for the field of nursing.Estomas gastrointestinais são aberturas na pele que possibilitam a comunicação do estomago ou intestino com o meio externo para se ter acesso ao órgão quando há necessidade de desviar o trânsito normal da alimentação ou eliminação. As estomias do trato gastrointestinal em crianças fazem parte de tratamentos de doenças malignas, benignas, inflamatórias, congênitas ou traumáticas. Ter um estoma na infância e/ou adolescência gera alterações físicas e psicológicas, principalmente devido à imaturidade orgânica, e afeta a integridade corporal, o convívio social e a qualidade de vida. Cuidar de um filho estomizado provoca impactos na família e gera grande demanda de cuidados permanentes e específicos. Este estudo teve como objetivo compreender a experiência da família de crianças e adolescentes que tem estomias gastrointestinais. Foi utilizada abordagem qualitativa, sob a luz do Interacionismo Simbólico como referencial teórico e como referencial metodológico a Análise de Narrativa. Para a coleta de dados utilizou-se entrevistas conduzidas por questões norteadoras e durante as mesmas realizou-se a construção do genograma e ecomapa, para a caracterização familiar. Foram entrevistadas 16 famílias, sendo 12 com crianças e 04 com adolescentes com estomas gastrointestinais que utilizam um serviço ambulatorial de nutrição ou de ostomizados. Em seis famílias os filhos tinham estomias intestinais e dez tinham gastrostomias. O processo de análise resultou em 6 temas principais, e suas categorias: 1- Impacto da enfermidade inesperada (Encarando o estoma como consequência/ Senso submetido a muitos procedimentos); 2- Aceitação da estomia (Tendo dificuldade em aceitar o estoma/ Deixando chegar no limite); 3- Mudanças na vida familiar (Adaptando-se aos manejos dos dispositivos/ Deixando a vida social de lado); 4- Desamparo na caminhada (Tendo apoio superficial / Convivendo com o preconceito); 5- Benefícios da estomia; 6- Busca da integração social (Vendo na alimentação a interação social/ Esperando pela reversão). Com os resultados deste estudo foi possível compreender que a família da criança ou adolescente com estoma gastrointestinal passa por um processo de vivência e aceitação progressiva da condição do filho, que inicia com o impacto do diagnóstico da enfermidade inesperada. Sentimentos como medo e insegurança são evidenciados pelo distanciamento e negação da necessidade de fazer a estomia. Após o período de aceitação e aprendizados de como lidar, a família percebe a melhora clínica e de saúde do filho, mas passa por situações de preconceito e afastamento da família extensa, por dificuldades em manter o emprego, além da sobrecarga materna no cuidado ao filho estomizado. A rede de apoio é reduzida e só há laços fortalecidos entre os integrantes da família nuclear. Mesmo diante das dificuldades a família tem uma visão positiva da estomia, porém almeja reinserção da criança/adolescente na sociedade através da reversão da estomia, no caso das intestinais, e por meio da alimentação via oral, nas gastrostomias, mesmo quando é definitiva. Os resultados deste estudo possibilitam ampliar o entendimento da vivencia desta experiência, que por sua vez permite melhorar o atendimento a essas famílias, sendo este um avanço para a área da enfermagem.Financiadora de Estudos e Projetosapplication/pdfporUniversidade Federal de São CarlosPrograma de Pós-Graduação em Enfermagem - PPGEnfUFSCarBREnfermagem familiarPediatriaEstomaterapiaOstomizadosJovensEstomas cirúrgicosGastrostomiaFamíliaCriançaSurgical stomasGastrostomyFamilyChildAdolescentCIENCIAS DA SAUDE::ENFERMAGEMEstomias gastrointestinais em crianças e adolescentes: experiência da famíliainfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINAL6090.pdfapplication/pdf2352634https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/3274/1/6090.pdf8bc21eecdcdeb9c51a7b309812718f92MD51TEXT6090.pdf.txt6090.pdf.txtExtracted texttext/plain0https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/3274/2/6090.pdf.txtd41d8cd98f00b204e9800998ecf8427eMD52THUMBNAIL6090.pdf.jpg6090.pdf.jpgIM Thumbnailimage/jpeg7155https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/3274/3/6090.pdf.jpg24428883650a46204174c852d758c0b2MD53ufscar/32742019-09-11 04:11:01.693oai:repositorio.ufscar.br:ufscar/3274Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222023-05-25T12:47:03.587951Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Estomias gastrointestinais em crianças e adolescentes: experiência da família
title Estomias gastrointestinais em crianças e adolescentes: experiência da família
spellingShingle Estomias gastrointestinais em crianças e adolescentes: experiência da família
Zacarin, Clara Ferraz Lazarini
Enfermagem familiar
Pediatria
Estomaterapia
Ostomizados
Jovens
Estomas cirúrgicos
Gastrostomia
Família
Criança
Surgical stomas
Gastrostomy
Family
Child
Adolescent
CIENCIAS DA SAUDE::ENFERMAGEM
title_short Estomias gastrointestinais em crianças e adolescentes: experiência da família
title_full Estomias gastrointestinais em crianças e adolescentes: experiência da família
title_fullStr Estomias gastrointestinais em crianças e adolescentes: experiência da família
title_full_unstemmed Estomias gastrointestinais em crianças e adolescentes: experiência da família
title_sort Estomias gastrointestinais em crianças e adolescentes: experiência da família
author Zacarin, Clara Ferraz Lazarini
author_facet Zacarin, Clara Ferraz Lazarini
author_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/5834740172551422
dc.contributor.author.fl_str_mv Zacarin, Clara Ferraz Lazarini
dc.contributor.advisor1.fl_str_mv Dupas, Giselle
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/9461883918498554
contributor_str_mv Dupas, Giselle
dc.subject.por.fl_str_mv Enfermagem familiar
Pediatria
Estomaterapia
Ostomizados
Jovens
Estomas cirúrgicos
Gastrostomia
Família
Criança
topic Enfermagem familiar
Pediatria
Estomaterapia
Ostomizados
Jovens
Estomas cirúrgicos
Gastrostomia
Família
Criança
Surgical stomas
Gastrostomy
Family
Child
Adolescent
CIENCIAS DA SAUDE::ENFERMAGEM
dc.subject.eng.fl_str_mv Surgical stomas
Gastrostomy
Family
Child
Adolescent
dc.subject.cnpq.fl_str_mv CIENCIAS DA SAUDE::ENFERMAGEM
description Gastrointestinal stoma are openings in the skin that enable the extracorporeal communication of the stomach or intestine to gain access to the body when there is need to divert traffic from the normal supply or disposal. The ostomy of the gastrointestinal tract in children are part of malignancies, benign, inflammatory, congenital or traumatic treatments. Having a stoma in childhood and/or adolescence makes physical and psychological changes, because of organic immaturity, and affects the body integrity, social interaction and quality of life. Caring for a child with ostomy brings impacts to the family and generates hard demand of permanent and specific care. This study aimed to understand the experience of families with children and adolescents who have gastrointestinal stomas. Qualitative approach was used, in light of Symbolic Interactionism as a theoretical framework and the methodological framework of Narrative Analysis. For data collection, were used conducted interviews by guiding questions and during the same interviews were made the construction of the genogram and ecomap to characterize the family . Interviews were conducted with 16 families, 12 with children and 4 with adolescents with gastrointestinal stoma using outpatient nutritional or ostomy services. In six families the children had intestinal stomas and ten had gastrostomy. The analysis process has resulted in 6 themes and categories: 1. Impact of unexpected illness (Facing the stoma as a consequence / Senso undergone a many procedures); 2 Acceptation of the ostomy (having difficulty accepting the stoma / Leaving reach the limit); 3 - Changes in family life (Adapting to the managements of the devices / Leaving aside the social life); 4 - Helplessness on the walk (having superficial support / Living with prejudice); 5 - Benefits of ostomy; 6 - Search the social reintegration (Seeing the power social interaction / Waiting for reversal). The results of this study allowed us to understand that the family of the child or adolescent with gastrointestinal stoma goes through a process of progressive experience and acceptance of the condition of the child, which starts with the impact of the diagnosis of unexpected illness. Feelings like fear and insecurity are evidenced by distancing and denial of the need to make the stoma. After the acceptance and learning period, the family notice the clinical and health improves of the child, but goes through prejudice situations and alienation of the extended family, difficulties in maintaining employment, and maternal burden in the care of the ostomy´s son. The support network is reduced and there is only strengthened ties among members of the nuclear family. Even before the difficulties the family has a positive view of the stoma, but crave reenter the child/adolescente in society through the stoma reversal in the case of intestinal and through oral feeding, at the gastrostomy, even when it is permanent. The results of this study make it possible to broaden our understanding of the experience, which in turn improves the care of these families, Being a breakthrough for the field of nursing.
publishDate 2014
dc.date.available.fl_str_mv 2014-08-26
2016-06-02T19:48:25Z
dc.date.issued.fl_str_mv 2014-06-18
dc.date.accessioned.fl_str_mv 2016-06-02T19:48:25Z
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dc.identifier.uri.fl_str_mv https://repositorio.ufscar.br/handle/ufscar/3274
identifier_str_mv ZACARIN, Clara Ferraz Lazarini. Estomias gastrointestinais em crianças e adolescentes: experiência da família. 2014. 130 f. Dissertação (Mestrado em Ciências da Saúde) - Universidade Federal de São Carlos, São Carlos, 2014.
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