The perception of subjective burden for family caregivers of cancer patients in palliative care

Detalhes bibliográficos
Autor(a) principal: Conceição, Nathalia Brenda Diniz Soares da
Data de Publicação: 2021
Outros Autores: Gama, Elvira Silvestre Chaves
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.
id UTFPR-9_4702d6b59e99936cc4205f201bb53888
oai_identifier_str oai:periodicos.utfpr:article/11636
network_acronym_str UTFPR-9
network_name_str Revista Brasileira de Qualidade de Vida
repository_id_str
spelling 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
_version_ 1809282493506912256