Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2021 |
| Outros Autores: | , , , , , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | por |
| Título da fonte: | Research, Society and Development |
| Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/20885 |
Resumo: | The aim was to analyse the psychosocial and clinical aspects related to hemophilia and its impact on the quality of life of patients with hemophilia treated in a specialised service in the municipality of Mossoró, Rio Grande do Norte, Brazil. This is a qualitative, exploratory and cross-sectional study, carried out with 11 patients of hemophilia submitted to interviews guided by a semi-structured questionnaire, recorded with permission and transcribed in full. The data collected were subjected to thematic content analysis proposed by Bardin and resulted in three categories: (1) Self-knowledge of people living with hemophilia, (2) Comprehensive Health Care for Hemophilia patients, (3) Relationship between sociability, mental health and denouement of prejudice and stigmatisation experienced by hemophiliacs. The data also allowed a synthesis on socio-demographic data and an analysis on strategies for maintaining the quality of life of hemophiliacs. It is concluded that it is of fundamental importance to invest in health care services, including the training of the multiprofessional team, the financing of research and technology for therapeutic advances, the encouragement of psychological follow-up and the inclusion of Complementary and Integrative Health Practices (CIHP), as well as the dissemination of knowledge about this hematological dysfunction in society, as tools for maintaining and improving the quality of life of hemophilia patients. |
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Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of lifeAspectos clínicos y psicosociales desde la perspectiva de los portadores de hemofilia: un análisis del proceso salud-enfermedad y de la calidad de vidaAspectos clínicos e psicossociais na perspectiva de portadores da hemofilia: uma análise sobre o processo saúde-doença e qualidade de vidaPatient care teamQuality of lifeBlood coagulation disordersHemophilia AHemophilia B.Grupo de atención al pacienteCalidad de vidaTrastornos de la coagulación sanguíneaHemofilia AHemofilia B.Equipe de assistência ao pacienteQualidade de vidaTranstornos de coagulação sanguíneaHemofilia AHemofilia B.The aim was to analyse the psychosocial and clinical aspects related to hemophilia and its impact on the quality of life of patients with hemophilia treated in a specialised service in the municipality of Mossoró, Rio Grande do Norte, Brazil. This is a qualitative, exploratory and cross-sectional study, carried out with 11 patients of hemophilia submitted to interviews guided by a semi-structured questionnaire, recorded with permission and transcribed in full. The data collected were subjected to thematic content analysis proposed by Bardin and resulted in three categories: (1) Self-knowledge of people living with hemophilia, (2) Comprehensive Health Care for Hemophilia patients, (3) Relationship between sociability, mental health and denouement of prejudice and stigmatisation experienced by hemophiliacs. The data also allowed a synthesis on socio-demographic data and an analysis on strategies for maintaining the quality of life of hemophiliacs. It is concluded that it is of fundamental importance to invest in health care services, including the training of the multiprofessional team, the financing of research and technology for therapeutic advances, the encouragement of psychological follow-up and the inclusion of Complementary and Integrative Health Practices (CIHP), as well as the dissemination of knowledge about this hematological dysfunction in society, as tools for maintaining and improving the quality of life of hemophilia patients.Se buscó analizar los aspectos psicosociales y clínicos relacionados con la hemofilia y sus impactos en la calidad de vida de los pacientes hemofílicos, atendidos en un servicio especializado del municipio de Mossoró del Estado de Río Grande del Norte, Brasil. Se trata de un estudio cualitativo, exploratorio y transversal, realizado con 11 pacientes con hemofilia que se sometieron a entrevistas guiadas por un cuestionario semiestructurado, grabadas con permiso y transcritas en su totalidad. Los datos recogidos se sometieron al análisis temático de contenido propuesto por Bardin y dieron lugar a tres categorías: (1) Autoconocimiento de las personas que viven con hemofilia, (2) Atención sanitaria integral a las personas con hemofilia, (3) Relación entre la sociabilidad, la salud mental y la denudación de los prejuicios y la estigmatización que sufren los hemofílicos. Los datos también permiten una síntesis sobre los datos sociodemográficos y un análisis sobre las estrategias para el mantenimiento de la calidad de vida de los hemofílicos. Se concluye que es fundamental la inversión en los servicios de asistencia en salud, incluyendo la capacitación del equipo multiprofesional, la financiación de la investigación y la tecnología para los avances terapéuticos, el incentivo al acompañamiento psicológico y la inclusión de Prácticas de Salud Integradas y Complementarias (PSIC), además de la difusión del conocimiento sobre esta disfunción hematológica en la sociedad, como herramientas para el mantenimiento y la mejora de la calidad de vida de los portadores de hemofilia.Buscou-se analisar os aspectos psicossociais e clínicos atrelados à hemofilia e seus impactos na qualidade de vida de pacientes hemofílicos, atendidos em um serviço especializado do município de Mossoró do Estado do Rio Grande do Norte, Brasil. Trata-se de um estudo qualitativo, do tipo exploratório e de corte transversal, realizado com 11 portadores de hemofilia submetidos a entrevistas guiadas por questionário semiestruturado, gravadas mediante autorização e transcritas na íntegra. Os dados coletados foram submetidos à análise temática de conteúdo proposta por Bardin e resultaram em três categorias: (1) Autoconhecimento das pessoas que vivem com a hemofilia, (2) Assistência Integral em Saúde aos Portadores de Hemofilia, (3) Relação entre a sociabilidade, saúde mental e desnudamento de preconceitos e estigmatizações vivenciada pelos hemofílicos. Os dados ainda permitiram uma síntese sobre dados sociodemográficos e uma análise sobre estratégias para manutenção da qualidade de vida dos hemofílicos. Conclui-se que é de fundamental o investimento nos serviços de assistência em saúde, incluindo a capacitação da equipe multiprofissional, o financiamento de pesquisa e tecnologia para avanços terapêuticos, o incentivo ao acompanhamento psicológico e a inclusão de Praticas Integrativas e Complementares em Saúde (PICS), além da disseminação de conhecimento sobre essa disfunção hematológica na sociedade, como ferramentas para manutenção e melhoria da qualidade de vida dos portadores de hemofilia.Research, Society and Development2021-10-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/2088510.33448/rsd-v10i12.20885Research, Society and Development; Vol. 10 No. 12; e566101220885Research, Society and Development; Vol. 10 Núm. 12; e566101220885Research, Society and Development; v. 10 n. 12; e5661012208852525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/20885/18559Copyright (c) 2021 Isabella Bueno dos Santos; Natanias Macson da Silva; Tassio Danilo Rego de Queiroz; Bruna Baioni do Nascimento; Larysy Raquelly Vidal de Souza; Gabriela Zanotto Della Giustina; Letícia Amanda Elsenbach; Jaqueline Pegoraro; Bianca Valente de Medeiros; Cristianny Cardoso de Souza; Allyssandra Maria Lima Rodrigues Maiahttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessSantos, Isabella Bueno dosSilva, Natanias Macson da Queiroz, Tassio Danilo Rego de Nascimento, Bruna Baioni doSouza, Larysy Raquelly Vidal deGiustina, Gabriela Zanotto Della Elsenbach, Letícia Amanda Pegoraro, Jaqueline Medeiros, Bianca Valente de Souza, Cristianny Cardoso de Maia, Allyssandra Maria Lima Rodrigues 2021-11-14T20:26:51Zoai:ojs.pkp.sfu.ca:article/20885Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:40:24.171592Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
| dc.title.none.fl_str_mv |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life Aspectos clínicos y psicosociales desde la perspectiva de los portadores de hemofilia: un análisis del proceso salud-enfermedad y de la calidad de vida Aspectos clínicos e psicossociais na perspectiva de portadores da hemofilia: uma análise sobre o processo saúde-doença e qualidade de vida |
| title |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| spellingShingle |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life Santos, Isabella Bueno dos Patient care team Quality of life Blood coagulation disorders Hemophilia A Hemophilia B. Grupo de atención al paciente Calidad de vida Trastornos de la coagulación sanguínea Hemofilia A Hemofilia B. Equipe de assistência ao paciente Qualidade de vida Transtornos de coagulação sanguínea Hemofilia A Hemofilia B. |
| title_short |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| title_full |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| title_fullStr |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| title_full_unstemmed |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| title_sort |
Clinical and psychosocial aspects from the perspective of carriers of hemophilia: an analysis of the health-disease process and quality of life |
| author |
Santos, Isabella Bueno dos |
| author_facet |
Santos, Isabella Bueno dos Silva, Natanias Macson da Queiroz, Tassio Danilo Rego de Nascimento, Bruna Baioni do Souza, Larysy Raquelly Vidal de Giustina, Gabriela Zanotto Della Elsenbach, Letícia Amanda Pegoraro, Jaqueline Medeiros, Bianca Valente de Souza, Cristianny Cardoso de Maia, Allyssandra Maria Lima Rodrigues |
| author_role |
author |
| author2 |
Silva, Natanias Macson da Queiroz, Tassio Danilo Rego de Nascimento, Bruna Baioni do Souza, Larysy Raquelly Vidal de Giustina, Gabriela Zanotto Della Elsenbach, Letícia Amanda Pegoraro, Jaqueline Medeiros, Bianca Valente de Souza, Cristianny Cardoso de Maia, Allyssandra Maria Lima Rodrigues |
| author2_role |
author author author author author author author author author author |
| dc.contributor.author.fl_str_mv |
Santos, Isabella Bueno dos Silva, Natanias Macson da Queiroz, Tassio Danilo Rego de Nascimento, Bruna Baioni do Souza, Larysy Raquelly Vidal de Giustina, Gabriela Zanotto Della Elsenbach, Letícia Amanda Pegoraro, Jaqueline Medeiros, Bianca Valente de Souza, Cristianny Cardoso de Maia, Allyssandra Maria Lima Rodrigues |
| dc.subject.por.fl_str_mv |
Patient care team Quality of life Blood coagulation disorders Hemophilia A Hemophilia B. Grupo de atención al paciente Calidad de vida Trastornos de la coagulación sanguínea Hemofilia A Hemofilia B. Equipe de assistência ao paciente Qualidade de vida Transtornos de coagulação sanguínea Hemofilia A Hemofilia B. |
| topic |
Patient care team Quality of life Blood coagulation disorders Hemophilia A Hemophilia B. Grupo de atención al paciente Calidad de vida Trastornos de la coagulación sanguínea Hemofilia A Hemofilia B. Equipe de assistência ao paciente Qualidade de vida Transtornos de coagulação sanguínea Hemofilia A Hemofilia B. |
| description |
The aim was to analyse the psychosocial and clinical aspects related to hemophilia and its impact on the quality of life of patients with hemophilia treated in a specialised service in the municipality of Mossoró, Rio Grande do Norte, Brazil. This is a qualitative, exploratory and cross-sectional study, carried out with 11 patients of hemophilia submitted to interviews guided by a semi-structured questionnaire, recorded with permission and transcribed in full. The data collected were subjected to thematic content analysis proposed by Bardin and resulted in three categories: (1) Self-knowledge of people living with hemophilia, (2) Comprehensive Health Care for Hemophilia patients, (3) Relationship between sociability, mental health and denouement of prejudice and stigmatisation experienced by hemophiliacs. The data also allowed a synthesis on socio-demographic data and an analysis on strategies for maintaining the quality of life of hemophiliacs. It is concluded that it is of fundamental importance to invest in health care services, including the training of the multiprofessional team, the financing of research and technology for therapeutic advances, the encouragement of psychological follow-up and the inclusion of Complementary and Integrative Health Practices (CIHP), as well as the dissemination of knowledge about this hematological dysfunction in society, as tools for maintaining and improving the quality of life of hemophilia patients. |
| publishDate |
2021 |
| dc.date.none.fl_str_mv |
2021-10-01 |
| dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
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article |
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publishedVersion |
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https://rsdjournal.org/index.php/rsd/article/view/20885 10.33448/rsd-v10i12.20885 |
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https://rsdjournal.org/index.php/rsd/article/view/20885 |
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10.33448/rsd-v10i12.20885 |
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por |
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por |
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https://rsdjournal.org/index.php/rsd/article/view/20885/18559 |
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https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
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https://creativecommons.org/licenses/by/4.0 |
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openAccess |
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application/pdf |
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Research, Society and Development |
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Research, Society and Development |
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Research, Society and Development; Vol. 10 No. 12; e566101220885 Research, Society and Development; Vol. 10 Núm. 12; e566101220885 Research, Society and Development; v. 10 n. 12; e566101220885 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
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Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
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