Cultural Aspects of Healthy BRCA Carriers From Two Ethnocultural Groups

Souza, Alicia Navarro de; Groleau, Danielle; Loiselle, Carmen G.; Foulkes, William D.; Wong, Nora

doi:10.1177/1049732314528756

Cited by 19 publications

(11 citation statements)

References 59 publications

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“…All studies included only Caucasians women who were welleducated had high incomes, and had good access to healthcare. Hence, intermediate-and long-term psychological impact also depends on the insurance system, access to the medical system, surveillance options, income, and cultural aspects (Cukier et al 2013;de Souza et al 2014) this should be considered in future studies.…”

Section: Limitations Of the Included Studies And Further Considerationmentioning

confidence: 99%

Psychological Distress, Anxiety, and Depression of Cancer‐Affected BRCA1/2 Mutation Carriers: a Systematic Review

Graf¹,

Wochnowski²,

Bosse³

et al. 2016

Journal of Genetic Counseling

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Understanding the intermediate- and long-term psychological consequences of genetic testing for cancer patients has led to encouraging research, but a clear consensus of the psychosocial impact and clinical routine for cancer-affected BRCA1 and BRCA2 mutation carriers is still missing. We performed a systematic review of intermediate- and long-term studies investigating the psychological impact like psychological distress, anxiety, and depression in cancer-affected BRCA mutation carriers compared to unaffected mutation carriers. This review included the screening of 1243 studies. Eight intermediate- and long-term studies focusing on distress, anxiety, and depression symptoms among cancer-affected mutation carriers at least six months after the disclosure of genetic testing results were included. Studies reported a great variety of designs, methods, and patient outcomes. We found evidence indicating that cancer-affected mutation carriers experienced a negative effect in relation to psychological well-being in terms of an increase in symptoms of distress, anxiety, and depression in the first months after test disclosure. In the intermediate- and long-term, no significant clinical relevant symptoms occurred. However, none of the included studies used specific measurements, which can clearly identify psychological burdens of cancer-affected mutation carriers. We concluded that current well-implemented distress screening instruments are not sufficient for precisely identifying the psychological burden of genetic testing. Therefore, future studies should implement coping strategies, specific personality structures, the impact of genetic testing, supportive care needs and disease management behaviour to clearly screen for the possible intermediate- and long-term psychological impact of a positive test disclosure.

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Section: Limitations Of the Included Studies And Further Considerationmentioning

confidence: 99%

Psychological Distress, Anxiety, and Depression of Cancer‐Affected BRCA1/2 Mutation Carriers: a Systematic Review

Graf¹,

Wochnowski²,

Bosse³

et al. 2016

Journal of Genetic Counseling

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“…Quando indagados sobre como se sentiam em relação ao seu problema de saúde, em especial ao saber do diagnóstico, praticamente todos relataram que sentiram-se "tristes" ou "desanimados", e quase metade deles disseram que se sentiram "com depressão". O nervosismo e a depressão aparecem com frequência nas narrativas de portadores de hipertensão e diabetes, sendo associados a causalidade, e a maneira como enfrentam a doença 24,26 .…”

Section: Resultsunclassified

“…Seu roteiro semiestruturado é composto por cinco seções: narrativa sobre a experiência inicial do adoecimento; narrativa de protótipo; narrativa de modelo explicativo; serviços e resposta ao tratamento; e impacto sobre a vida. Esta entrevista foi utilizada em estudos voltados para a narrativa de pessoas em diversas situações clínicas [24][25][26] , mas em nenhum deles o entrevistador era um estudante de medicina.…”

Section: Introductionunclassified

A experiência de alunos do internato em medicina de família e comunidade na condução de entrevistas McGill MINI narrativa de adoecimento com pacientes crônicos com dificuldades de adesão ao tratamento

Bastos

Cunha

Souza

2018

Rev. bras. educ. med.

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RESUMO A formação médica no Brasil, apesar das várias políticas indutoras governamentais objetivando sua mudança é, ainda, predominantemente hospitalocêntrica, sendo o processo de aprendizagem centrado na doença. Em uma escola médica tradicional, realizamos uma pesquisa na qual o aluno do Internato conduziu uma entrevista voltada para experiência de adoecimento com pacientes crônicos com dificuldades de adesão ao tratamento de hipertensão e/ou diabetes na Atenção Primária. Quatorze Internos em Medicina de Família e Comunidade da Universidade Federal do Rio de Janeiro foram treinados a aplicar a Entrevista McGill MINI Narrativa de Adoecimento para identificar os modos de compreensão e atribuição de sentidos da experiência de adoecimento e tratamento. Antes e depois da realização do conjunto de 35 entrevistas McGill MINI, os alunos foram individualmente ouvidos quanto a sua compreensão do fenômeno adesão e à experiência com a entrevista McGill MINI. As 35 entrevistas realizadas pelos alunos foram analisadas quanto ao alcance dos objetivos de cada seção da entrevista McGill MINI, além do objetivo geral do entrevistador ser capaz de ofertar um lugar de expertise ao paciente no relato de sua experiência de adoecimento. Buscamos investigar a consistência da experiência do aluno com este roteiro para a obtenção da narrativa de adoecimento, utilizando para tal os temas conceituais desta entrevista – protótipos e modelos explicativos – e os temas emergentes identificados através da análise de conteúdo realizada conforme a técnica descrita por Bardin. Na análise das entrevistas realizadas pela pesquisadora com os Internos ao início e final do Internato, a análise temática foi feita a partir de dois grandes temas: compreensão e experiência clínica com o fenômeno da adesão, e apreciação da experiência de realização da entrevista McGill MINI no contexto da formação médica. Os alunos reconheceram a entrevista McGill MINI como útil para compreender e explorar a experiência de adoecimento e tratamento de um indivíduo no seu contexto socioeconômico e cultural. Ao reconhecerem esta importância da entrevista McGill MINI, os Internos frequentemente referiam as poucas oportunidades de aprendizagem na abordagem de pacientes em geral. Apesar de previamente reconhecerem a importância da escuta e do desenvolvimento do vínculo, desconheciam como isto poderia ser construído, e a experiência aumentou a autoconfiança no cuidado às pessoas no cotidiano médico. Os alunos perceberam que a não-adesão envolve múltiplos fatores, que normalmente não aparecem durante uma consulta médica habitual, e houve de fato uma ampliação na compreensão do fenômeno da adesão.

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“…When asked about how they felt in relation to their health problem, especially when they first learning of their diagnosis, practically all of them said they felt "sad" or "upset", and almost half of them said they felt "depressed". Feeling angry and depressed appear frequently in the narratives of patients with hypertension and diabetes, in relation to both the causality and the way in which they face the disease 24,26 .…”

Section: Don't Take My Medication On Saturdays and Sundays Because mentioning

confidence: 99%

“…Its semi-structured script is made up of five sections: a narrative about the initial illness experience; a prototypes narrative; the explanatory models narrative; help seeking and service utilization and impact of illness on life. This interview was used in studies focused on the narrative of people in several clinical situations [24][25][26] , but in none of them was the interviewer a medical student. This paper has the purpose of analyzing the potential of the MINI in medical education, providing a better understanding of the illness experience of chronic patients with difficulties in complying with treatment in Primary Care.…”

Section: Introductionmentioning

confidence: 99%

The Experience of Family Medicine Interns Conducting McGill ILLNESS Narrative Interview with Non-Compliant Chronic Patients

Bastos

Cunha

Souza

2018

Rev. bras. educ. med.

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Despite several governmental policies with the purpose of changing medical training in Brazil, it is still predominantly hospital-centered, and the learning process is focused on diseases. We conducted a study in a traditional medical school, in which the students carried out an interview focused on the illness experience assessing chronic patients with compliance difficulties in the treatment of hypertension and/or diabetes in primary care. Fourteen medical students during the Family Medicine Internship at the Federal University of Rio de Janeiro were trained to carry out the McGill Illness Narrative Interview (MINI) and identify the modes of understanding and attribution of meaning to the illness and treatment experience. Before and after the completion of the set of 35 interviews, the students were listened to individually regarding their understanding of the compliance phenomenon and the experience with the MINI. The 35 interviews conducted by the students were analyzed with respect to the objectives of each section, in addition to interviewer’s general objective of offering a position of expertise to the patient in their report of the case. We sought to investigate the consistency of the student’s experience with this script to obtain the narrative of illness using conceptual topics – prototypes and explanatory models – and the emerging topics identified according to the technique described by Bardin for content analysis. In the analysis of the interviews conducted by the researcher with the interns at the beginning and the end of their internship, the content analysis consisted of two main themes: clinical understanding and experience with the non-compliance phenomenon, and the appreciation of performing the MINI in the context of medical training. The students considered the MINI a useful tool for understanding and exploring the individuals’ illness and their treatment experiences in their socioeconomic and cultural context. By recognizing the importance of the MINI, the interns usually reported few learning opportunities while providing care for patients. Although the students had previously recognized the importance of listening and the development of bonds, they did not know how these issues could be built, and the experience increased their confidence in the healthcare provided to patients in their medical daily life. The students noticed that non-compliance involved multiple factors, which did not usually emerge during regular medical appointments. In fact, there was more understanding about the compliance phenomenon.

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Cultural Aspects of Healthy BRCA Carriers From Two Ethnocultural Groups

Cited by 19 publications

References 59 publications

Psychological Distress, Anxiety, and Depression of Cancer‐Affected BRCA1/2 Mutation Carriers: a Systematic Review

Psychological Distress, Anxiety, and Depression of Cancer‐Affected BRCA1/2 Mutation Carriers: a Systematic Review

A experiência de alunos do internato em medicina de família e comunidade na condução de entrevistas McGill MINI narrativa de adoecimento com pacientes crônicos com dificuldades de adesão ao tratamento

The Experience of Family Medicine Interns Conducting McGill ILLNESS Narrative Interview with Non-Compliant Chronic Patients

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