The perception of subjective burden for family caregivers of cancer patients in palliative care
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Data de Publicação: | 2021 |
Outros Autores: | |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Revista Brasileira de Qualidade de Vida |
Texto Completo: | https://periodicos.utfpr.edu.br/rbqv/article/view/11636 |
Resumo: | OBJECTIVE: Understand how family caregivers of cancer patients in palliative care perceive the subjective burden and its impacts on daily life.METHODS: The study is descriptive research, with a qualitative approach, using Laurence Bardin's Content Analysis as a method of data analysis. Data were collected at the Palliative Care Oncology Clinic at Ophir Loyola Hospital, located in Belém do Pará. The study interviewed four participants over 18 years old, all of whom were primary caregivers and family members of the patients. Data collection used a semi-structured interview. The interviews were transcribed in full and analyzed to formulate thematic categories related to the caregivers' perception of subjective burden.RESULTS: Three descriptive categories were developed: in the first category, difficulties emerged in sharing patient care with other family members; in the second, the caregivers' highlighted changes that occurred in their lives; and in the third, coping strategies were approached through religiosity/spirituality in the face of subjective overload and the context of terminality.CONCLUSIONS: Subjective overload appears discreetly, not directly observable. Demands related to it may not be identified and addressed, creating a feeling of helplessness and/or neglects of the main caregiver's suffering. Attention to subjective overload is essential in palliative care considering the patient-family binomial and should be a study object in the area. |
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The perception of subjective burden for family caregivers of cancer patients in palliative careA percepção da sobrecarga subjetiva para cuidadores familiares de pacientes em cuidados paliativos oncológicos7.07.02.04-7 Estados Subjetivos e EmoçãoCuidadores; Familiares; Cuidados paliativos; Sobrecarga subjetiva.Caregivers; Relatives; Palliative care; Subjective burden.OBJECTIVE: Understand how family caregivers of cancer patients in palliative care perceive the subjective burden and its impacts on daily life.METHODS: The study is descriptive research, with a qualitative approach, using Laurence Bardin's Content Analysis as a method of data analysis. Data were collected at the Palliative Care Oncology Clinic at Ophir Loyola Hospital, located in Belém do Pará. The study interviewed four participants over 18 years old, all of whom were primary caregivers and family members of the patients. Data collection used a semi-structured interview. The interviews were transcribed in full and analyzed to formulate thematic categories related to the caregivers' perception of subjective burden.RESULTS: Three descriptive categories were developed: in the first category, difficulties emerged in sharing patient care with other family members; in the second, the caregivers' highlighted changes that occurred in their lives; and in the third, coping strategies were approached through religiosity/spirituality in the face of subjective overload and the context of terminality.CONCLUSIONS: Subjective overload appears discreetly, not directly observable. Demands related to it may not be identified and addressed, creating a feeling of helplessness and/or neglects of the main caregiver's suffering. Attention to subjective overload is essential in palliative care considering the patient-family binomial and should be a study object in the area.OBJETIVO: Compreender como os cuidadores familiares de pacientes oncológicos em cuidados paliativos percebem a sobrecarga subjetiva e seus impactos no cotidiano.MÉTODOS: O estudo é uma pesquisa descritiva, de abordagem qualitativa, tendo como método de análise de dados a análise de conteúdo, de Laurence Bardin. O local de coleta de dados foi a Clínica de Cuidados Paliativos Oncológicos do Hospital Ophir Loyola, localizado em Belém do Pará. Foram entrevistados quatro participantes maiores de 18 anos, todos cuidadores principais e familiares dos pacientes. Para a coleta de dados, foi utilizada a entrevista semiestruturada. As entrevistas foram transcritas na íntegra e analisadas para a formulação das categorias temáticas relacionadas à percepção dos cuidadores familiares sobre a sobrecarga subjetiva.RESULTADOS: Foram desenvolvidas três categorias descritivas: na primeira categoria, emergiram dificuldades de dividir os cuidados dos pacientes com outros familiares; na segunda, destacaram-se as mudanças ocorridas na vida dos cuidadores; e, na terceira, abordaram-se estratégias de enfrentamento por meio da religiosidade/espiritualidade frente à sobrecarga subjetiva e ao contexto de terminalidade.CONCLUSÕES: A sobrecarga subjetiva aparece de forma discreta, não diretamente observável. As demandas relativas a ela podem não ser identificadas e abordadas, gerando sensação de desamparo e/ou de negligência com o sofrimento do cuidador principal. A atenção à sobrecarga subjetiva é essencial no cuidado paliativo considerando o binômio paciente-família e deve ser objeto de estudo na área.Universidade Tecnológica Federal do Paraná (UTFPR)Conceição, Nathalia Brenda Diniz Soares daGama, Elvira Silvestre Chaves2021-11-02info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://periodicos.utfpr.edu.br/rbqv/article/view/1163610.3895/rbqv.v13n0.11636Revista Brasileira de Qualidade de Vida; v. 13 (2021)2175-085810.3895/rbqv.v1n0reponame:Revista Brasileira de Qualidade de Vidainstname:Universidade Tecnológica Federal do Paraná (UTFPR)instacron:UTFPRporhttps://periodicos.utfpr.edu.br/rbqv/article/view/11636/pdfDireitos autorais 2021 CC-BYhttp://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccess2024-05-01T10:37:41Zoai:periodicos.utfpr:article/11636Revistahttps://periodicos.utfpr.edu.br/rbqvPUBhttp://periodicos.utfpr.edu.br/rbqv/oai||rbqv-pg@utfpr.edu.br2175-08582175-0858opendoar:2024-05-01T10:37:41Revista Brasileira de Qualidade de Vida - Universidade Tecnológica Federal do Paraná (UTFPR)false |
dc.title.none.fl_str_mv |
The perception of subjective burden for family caregivers of cancer patients in palliative care A percepção da sobrecarga subjetiva para cuidadores familiares de pacientes em cuidados paliativos oncológicos |
title |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
spellingShingle |
The perception of subjective burden for family caregivers of cancer patients in palliative care Conceição, Nathalia Brenda Diniz Soares da 7.07.02.04-7 Estados Subjetivos e Emoção Cuidadores; Familiares; Cuidados paliativos; Sobrecarga subjetiva. Caregivers; Relatives; Palliative care; Subjective burden. |
title_short |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
title_full |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
title_fullStr |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
title_full_unstemmed |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
title_sort |
The perception of subjective burden for family caregivers of cancer patients in palliative care |
author |
Conceição, Nathalia Brenda Diniz Soares da |
author_facet |
Conceição, Nathalia Brenda Diniz Soares da Gama, Elvira Silvestre Chaves |
author_role |
author |
author2 |
Gama, Elvira Silvestre Chaves |
author2_role |
author |
dc.contributor.none.fl_str_mv |
|
dc.contributor.author.fl_str_mv |
Conceição, Nathalia Brenda Diniz Soares da Gama, Elvira Silvestre Chaves |
dc.subject.por.fl_str_mv |
7.07.02.04-7 Estados Subjetivos e Emoção Cuidadores; Familiares; Cuidados paliativos; Sobrecarga subjetiva. Caregivers; Relatives; Palliative care; Subjective burden. |
topic |
7.07.02.04-7 Estados Subjetivos e Emoção Cuidadores; Familiares; Cuidados paliativos; Sobrecarga subjetiva. Caregivers; Relatives; Palliative care; Subjective burden. |
description |
OBJECTIVE: Understand how family caregivers of cancer patients in palliative care perceive the subjective burden and its impacts on daily life.METHODS: The study is descriptive research, with a qualitative approach, using Laurence Bardin's Content Analysis as a method of data analysis. Data were collected at the Palliative Care Oncology Clinic at Ophir Loyola Hospital, located in Belém do Pará. The study interviewed four participants over 18 years old, all of whom were primary caregivers and family members of the patients. Data collection used a semi-structured interview. The interviews were transcribed in full and analyzed to formulate thematic categories related to the caregivers' perception of subjective burden.RESULTS: Three descriptive categories were developed: in the first category, difficulties emerged in sharing patient care with other family members; in the second, the caregivers' highlighted changes that occurred in their lives; and in the third, coping strategies were approached through religiosity/spirituality in the face of subjective overload and the context of terminality.CONCLUSIONS: Subjective overload appears discreetly, not directly observable. Demands related to it may not be identified and addressed, creating a feeling of helplessness and/or neglects of the main caregiver's suffering. Attention to subjective overload is essential in palliative care considering the patient-family binomial and should be a study object in the area. |
publishDate |
2021 |
dc.date.none.fl_str_mv |
2021-11-02 |
dc.type.none.fl_str_mv |
|
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://periodicos.utfpr.edu.br/rbqv/article/view/11636 10.3895/rbqv.v13n0.11636 |
url |
https://periodicos.utfpr.edu.br/rbqv/article/view/11636 |
identifier_str_mv |
10.3895/rbqv.v13n0.11636 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
https://periodicos.utfpr.edu.br/rbqv/article/view/11636/pdf |
dc.rights.driver.fl_str_mv |
Direitos autorais 2021 CC-BY http://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
Direitos autorais 2021 CC-BY http://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Universidade Tecnológica Federal do Paraná (UTFPR) |
publisher.none.fl_str_mv |
Universidade Tecnológica Federal do Paraná (UTFPR) |
dc.source.none.fl_str_mv |
Revista Brasileira de Qualidade de Vida; v. 13 (2021) 2175-0858 10.3895/rbqv.v1n0 reponame:Revista Brasileira de Qualidade de Vida instname:Universidade Tecnológica Federal do Paraná (UTFPR) instacron:UTFPR |
instname_str |
Universidade Tecnológica Federal do Paraná (UTFPR) |
instacron_str |
UTFPR |
institution |
UTFPR |
reponame_str |
Revista Brasileira de Qualidade de Vida |
collection |
Revista Brasileira de Qualidade de Vida |
repository.name.fl_str_mv |
Revista Brasileira de Qualidade de Vida - Universidade Tecnológica Federal do Paraná (UTFPR) |
repository.mail.fl_str_mv |
||rbqv-pg@utfpr.edu.br |
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1809282493506912256 |