Is there a “right time” for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk

Derbez, Benjamin

doi:10.1016/j.socscimed.2018.02.022

Cited by 12 publications

(5 citation statements)

References 30 publications

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“…The results show the modest impact of this incentive, now enshrined in law, which was intended to solve an ethical problem. This confirms the importance of ‘practical ethics’ implemented routinely to address the problem of familial disclosure and balance the benefits and risks3 28 and shows that this also includes HCPs and their interactions with patients. What can be said about the use of the institutional familial disclosure letter?…”

Section: Conclusion/discussionsupporting

confidence: 60%

“…The familial disclosure of genetic information is a major ethical issue 1 21. Many studies have addressed this question from the patient’s point of view,4 21–23 and some have emphasised the significant amount of practical work involved for individuals who shoulder this responsibility 3 24–26. In France, the introduction of a legal provision enabling HCPs to inform relatives with their patients consent set out to resolve this problem.…”

Section: Conclusion/discussionmentioning

confidence: 99%

“…In such cases, disclosure of this information gives relatives the chance to have familial testing and to seek the relevant care, prevention or counselling services, especially for late-onset diseases. However, people sometimes find it difficult to pass on this sensitive information,2 3 even though the medical consequences of withholding it can be serious, thus giving this health issue an important ethical dimension. Since the 1990s, there have been many studies on raising awareness of the importance of familial disclosure and supporting individuals in this task 4 5.…”

Section: Introductionmentioning

confidence: 99%

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Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France

et al. 2019

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Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients’ relatives on their behalf leads them to use this option sparingly.

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Section: Conclusion/discussionsupporting

confidence: 60%

Section: Conclusion/discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France

et al. 2019

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“…Através do vínculo com a família, o enfermeiro pode ter maior habilidade em prever reações individuais diante de informações desagradáveis e deve considerar uma série de fatores como personalidade, religião, rede de apoio, experiências prévias, expectativa, forma e tempo adequado em que esta notícia pode ser transmitida. Significa prestar atenção na dimensão pragmática na gestão das temporalidades familiares (Benjamin, 2018).…”

Section: Discussionunclassified

O que falar para a família? A predisposição para o câncer infantil hereditário

Cebulski

Couto

2020

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Objetivo: Identificar o conhecimento de familiares sobre a doença infantil com predisposição hereditária ao câncer e analisar como a informação da doença é difundida no cenário intrafamiliar. Metodologia: Pesquisa qualitativa, exploratória. A coleta de dados foi desenvolvida com 16 familiares de crianças matriculadas no ambulatório de aconselhamento genético, através de entrevista individual, semi-estruturada com análise temática. Resultados: O desconhecimento sobre a doença com predisposição hereditária esteve presente no discurso dos familiares. Foram identificadas algumas estratégias de comunicação desenvolvida pelos familiares para a criança e familiares distantes. As informações obtidas no aconselhamento genético influenciaram na identificação de familiares de risco hereditário e cuidados com gerações futuras. Conclusões e implicações para a prática: A comunicação esteve presente no ambiente familiar com a criança e familiares diante da doença com predisposição hereditária ao câncer. Os profissionais de saúde necessitam se capacitar na área de oncologia genética para contribuir na identificação de crianças e famílias afetadas. As informações adquiridas no ambulatório de aconselhamento genético contribuem para o rastreamento de casos familiares, difusão da informação e na qualidade de vida dos afetados.

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“…Extant relational dynamics informed the context, timing, and content of women’s interactions with family members, highlighting the difference between chronological and kairological time in family interactions about inherited cancer risk. Chronological time is objective, measurable, predictable, linear, and discrete, whereas kairological time is subjective, capturing ambivalence, uncertainty, loyalty, and the personalization of experience (Derbez, 2018). Our analysis applies this orientation to the timing of women’s risk-reducing actions and cancer risk communication.…”

Section: Discussionmentioning

confidence: 99%

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions

et al. 2018

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In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants’ range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.

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Is there a “right time” for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk

Cited by 12 publications

References 30 publications

Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France

Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France

O que falar para a família? A predisposição para o câncer infantil hereditário

Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions

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