O saber do paciente chagásico sobre a sua doença: construção compartilhada de um instrumento para a pesquisa e teste de sua aplicabilidade

Ballester-Gil, Lucia Maria; Stotz, Eduardo Navarro; Hasslocher‐Moreno, Alejandro Marcel; Azevedo, Belarmino Alves de; Araújo-Jorge, Tânia C.

doi:10.1590/s1413-81232008000900025

Cited by 5 publications

(19 citation statements)

References 25 publications

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“…Studies that addressed experiences of Chagas disease from the sufferer's perspective showed how social groups described a variety of conceptions about the disease [21], [24], [35]–[37]: local communities do not only have knowledge and specific ways of thinking about “Chagas”, but people also syncretize different kinds of knowledge, producing new hybridized understandings.…”

Section: Resultsmentioning

confidence: 99%

“…People are not merely recipients of information and, although social groups handle Chagas-related knowledge and meanings based on their socio-cultural worldviews [16], [21], [24], [35]–[37], [44]–[45], these models are not closed and pure. Instead they are syncretic: for example in Brazil [37], where during early prevention programs, new conceptions of Chagas disease were formed based on pre-existing knowledge and the information disseminated. Chagas-related meanings can also change during migration, when they are re-orientated according to the new situation and possibilities [44]–[45].…”

Section: Discussionmentioning

confidence: 99%

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Socio-Cultural Aspects of Chagas Disease: A Systematic Review of Qualitative Research

et al. 2013

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BackgroundGlobally, more than 10 million people are infected with Trypanosoma cruzi, which causes about 20 000 annual deaths. Although Chagas disease is endemic to certain regions of Latin America, migratory flows have enabled its expansion into areas where it was previously unknown. Economic, social and cultural factors play a significant role in its presence and perpetuation. This systematic review aims to provide a comprehensive overview of qualitative research on Chagas disease, both in endemic and non-endemic countries.Methodology/Principal FindingsSearches were carried out in ten databases, and the bibliographies of retrieved studies were examined. Data from thirty-three identified studies were extracted, and findings were analyzed and synthesized along key themes. Themes identified for endemic countries included: socio-structural determinants of Chagas disease; health practices; biomedical conceptions of Chagas disease; patient's experience; and institutional strategies adopted. Concerning non-endemic countries, identified issues related to access to health services and health seeking.ConclusionsThe emergence and perpetuation of Chagas disease depends largely on socio-cultural aspects influencing health. As most interventions do not address the clinical, environmental, social and cultural aspects jointly, an explicitly multidimensional approach, incorporating the experiences of those affected is a potential tool for the development of long-term successful programs. Further research is needed to evaluate this approach.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Socio-Cultural Aspects of Chagas Disease: A Systematic Review of Qualitative Research

et al. 2013

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“… Magnani, Oliveira, Gontijo, 2007 28 It presents a theory about the symbology of Chagas disease in the lives of patients who are infected. Ballester-Gil et al , 2008 29 It presents the patient’s perceptions and knowledge about Chagas disease, which refer to the form of diagnosis; the feeling at the time of diagnosis; perceptions about the disease; perceptions about life in recent years; and perceptions about the forms of consultation and treatment. Oliveira et al , 2010 30 It presents information based on the patient’s perspective of the disease vector and on how they live and how they face the symptoms of the pathology.…”

Section: Resultsmentioning

confidence: 99%

“… 10) How valuable is the research? Araújo et al, 2000 27 yes Can’t tell no yes no no yes no no yes Magnani, Oliveira, Gontijo, 2007 28 yes yes yes no yes no yes yes no yes Ballester-Gil et al , 2008 29 yes yes yes no yes yes yes yes no yes Oliveira et al , 2010 30 yes yes yes yes yes no yes yes no yes Forsyth et al, 2021 31 …”

Section: Resultsmentioning

confidence: 99%

Health-Related Quality of Life Reported by Patients With Chagas Disease: A Systematic Review of Qualitative Evidence With GRADE Recommendations

Silva

Oliveira

Xavier

et al. 2022

Rev. Soc. Bras. Med. Trop.

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Patients with Chagas disease have reduced health-related quality of life (HRQoL). Hence, we aimed to identify the factors that mostly affected their HRQoL. This was a systematic review of qualitative studies. The Latin American and Caribbean Health Sciences Literature, Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Web of Science, and SciVerse Scopus databases were searched for relevant studies without language or date restrictions. The search and data analysis were performed by independent reviewers; all qualitative studies that reported the factors that had an impact on the HRQoL of patients with Chagas disease were included. The risk of bias was assessed using the Critical Appraisal Skills Program Qualitative Study Checklist; confidence in the evidence was evaluated using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative approach. Five studies were included in this review: four in Brazil and one in California, United States, with immigrants from Central and South America. The sample consisted of 207 patients with chronic Chagas disease. Stigma, physical limitations, work absenteeism, emotional or mental aspects, fear of treatment, and fear of the future had the strongest impact on the HRQoL. All items showed moderate confidence except for fear of treatment (low confidence). The physical, emotional, mental, and cultural aspects affected the HRQoL of patients with chronic Chagas disease. Identification of these factors is important in the development of strategies aimed at improving the HRQoL of this population.

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“…A narrativa terapêutica procedente do campo da antropologia médica é expressa por alguns pesquisadores como pertencente ao campo das narrativas sobre doença. Alguns autores trabalham esse conceito a partir do significado da doença, da polissemia da experiência da doença, e da doença como processo 38 . Partindo do significado da doença e da polissemia da experiência de vida, o participante 06 relatou problemas com álcool e drogas; o fato dele não apresentar recaída foi mais importante do que a Doença de Chagas em si:…”

Section: Não Sabia O Que a Doença Provocaria Não Sabia Os Efeitos Não...unclassified

Doença de Chagas: enfrentando a invisibilidade pela análise de histórias de vida de portadores crônicos

Pereira-Silva

Mello

Araujo-Jorge

2022

Ciênc. saúde coletiva

Self Cite

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Resumo O artigo tem por objetivo analisar as histórias de vida de portadores de doença de Chagas (DC), para evidenciar em suas narrativas elementos e possibilidades de enfrentamento dessa problemática. Causada pelo protozoário Trypanosoma cruzi, a DC combina condições de infecção assintomática e/ou de progressão para doença de acordo com determinantes biológicos e sociais e afeta 6 a 7 milhões de pessoas infectadas. No mundo anualmente 6 mil pessoas em consequência das complicações na fase crônica da DC. Realizamos um estudo qualitativo com uso da técnica de história de vida coletadas em entrevistas abertas, coletando um material riquíssimo para trabalhar o contexto da doença em múltiplas dimensões. Associamos uma escuta sensível com a necessidade das pessoas vivendo com a DC darem força à sua voz, valorizando sua própria história de vida, transformando-as em detendoras de sua história e de seu conhecimento. A visibilidade emergiu e prevaleceu, expondo a própria doença como tema central e dois subtemas gerais: suas percepções sobre a doença e a sua própria vida, no contexto da doença. Identificamos a necessidade de (re)pensar a problemática da doença de Chagas como algo visível e presente.

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O saber do paciente chagásico sobre a sua doença: construção compartilhada de um instrumento para a pesquisa e teste de sua aplicabilidade

Abstract: This article describes the collective construction of a research instrument (interview

Cited by 5 publications

References 25 publications

Socio-Cultural Aspects of Chagas Disease: A Systematic Review of Qualitative Research

Socio-Cultural Aspects of Chagas Disease: A Systematic Review of Qualitative Research

Health-Related Quality of Life Reported by Patients With Chagas Disease: A Systematic Review of Qualitative Evidence With GRADE Recommendations

Doença de Chagas: enfrentando a invisibilidade pela análise de histórias de vida de portadores crônicos

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