Intersections of health and gender imperatives: stratified decision-making among women with a BRCA mutation

Arguedas, Amy A. Ross; Scherr, Courtney L.; Dean, Marleah; Getachew-Smith, Hannah; Clements, Meredith L.

doi:10.1057/s41292-019-00154-8

Cited by 3 publications

(14 citation statements)

References 40 publications

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“…Well supported women were more willing to proceed with risk‐reducing surgery (Puski et al, 2018). Family members who were against women having testing or surgery believed it to be “ really extreme” (Reilly, 2014, p. 81) and failed to understand why they would “ cut off healthy tissue?” (Ross Arguedas et al, 2020, p. 255). Fathers, in particular, were concerned for daughters having risk‐reducing surgery at such a young age and the effect it would have on their bodies and relationships (Reilly, 2014; West, 2016).…”

Section: Resultsmentioning

confidence: 97%

Section: Resultsmentioning

confidence: 99%

“…Anxiety was felt by many women who expressed feeling like “lesser women” due to a distorted sense of self (Getachew‐Smith et al, 2020; Ross Arguedas et al, 2020) and making decisions about risk‐reducing surgery involved a grieving process (Puski et al, 2018). Women's anxiety was also fuelled by a fear of removing everything made them a woman (Ross Arguedas et al, 2020). Some were not ready to let go of their femininity and struggled with the impending loss of fertility (Becker, 2017; Dean & Fisher, 2019; Dean & Rauscher, 2017; Puski et al, 2018; Rauscher & Dean, 2017).…”

Section: Resultsmentioning

confidence: 99%

“…The “emotional struggle after the mastectomy” was highlighted as the most difficult aspect of surgery (Becker, 2017, p. 66). Moreover, fear of rejection from men for lacking “ real” breasts was voiced (Ross Arguedas et al, 2020 p. 262). Risk‐reducing surgery caused feelings of anxiety and a drastic change to women's bodies which affected sexual relationships:

“…He doesn't even touch me.…”

Section: Resultsmentioning

confidence: 99%

“…Women's anxiety was also fuelled by a fear of removing everything made them a woman (Ross Arguedas et al, 2020). Some were not ready to let go of their femininity and struggled with the impending loss of fertility (Becker, 2017;Dean & Fisher, 2019;Puski et al, 2018;.…”

Section: Anxietymentioning

confidence: 99%

See 4 more Smart Citations

Breast cancer genetic mutation: Synthesis of women's experience

McNamara

Feeney

Giltenane

et al. 2022

Journal of Clinical Nursing

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Testing positive for a BRCA genetic mutation puts women at an increased risk for breast and ovarian cancer .It is estimated that women with BRCA1 gene mutation have a 40% to 87% lifetime risk of developing breast cancer and a 22% to 65% lifetime risk of developing ovarian cancer. For women who have a BRCA2 mutation, the risk is estimated in the region of 18% to 87% lifetime risk for breast cancer and a 10% to 35% lifetime risk of ovarian cancer (Mavaddat et al., 2013). Furthermore, these women have a 50% chance of passing the mutation to their children (National Cancer Institute, 2022).Following confirmation of a BRCA gene mutation, women engage in complex and emotional decision-making regarding risk management. Risk management includes risk-reducing surgery, chemoprevention or ongoing continuous intensive screening (Becker, 2017).

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Section: Resultsmentioning

confidence: 97%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…He doesn't even touch me.…”

Section: Resultsmentioning

confidence: 99%

Section: Anxietymentioning

confidence: 99%

See 3 more Smart Citations

Breast cancer genetic mutation: Synthesis of women's experience

McNamara

Feeney

Giltenane

et al. 2022

Journal of Clinical Nursing

View full text Add to dashboard Cite

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Links between gender norms and the intergenerational transmission of health information in parents carrying BRCA1/2 pathogenic variants

Gauna,

Carof,

Mouret‐Fourme

et al. 2023

Journal of Genetic Counseling

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Understanding how gender norms affect parents' communication of genetic and cancer risk information to their children can enable healthcare professionals to better facilitate cascade genetic testing. We conducted a qualitative study with semi‐structured interviews to determine social factors associated with parents carrying the BRCA1/2 pathogenic variants who communicated cancer prevention practices to their children. Thirty adult carriers (23 women, 7 men) participated in the interviews. All had at least one child aged over 8 years old. Interview topics included their discovery of the variants, their relationship to their body and to the risk of cancer, as well as disclosure to and subsequent communication with their children after testing positive for BRCA1/2. The interviews were analyzed qualitatively, and the major themes identified were identified and compared. We described the roles played by the BRCA1/2 carriers and their partners in communicating cancer prevention practices to their children, from how they managed their own risk of cancer after testing positive, to how they disclosed the risks linked to these pathogenic variants to their children. We also described their involvement in the process of their children going for professional genetic consultation. Gender norms lead women to be more attentive than men to their own health and that of their loved ones. In the context of the transmission of genetic information to children, gender differences in behavior are reinforced by perceptions of the risks of BRCA1/2 variants and women's related health management practices. Cancer prevention is shaped by complex links between gender norms and health management practices.

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You definitely need a mastectomy if you are mutated! Experiencing breast cancer among genetic responsibilities and risk-reducing practices

Morsello¹

2023

Salute E Società

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Genetics and predictive tests are changing breast cancer prevention, both in terms of subjective experience and risk reducing practices. The aim of the article is to address two main research questions: What does the genetic information mean for subjects? How does prevention and risk-reducing practice change in relation to genetic information? Through qualitative research on breast cancer experience conducted in Italy at the National Cancer Institute of Rome, it was possible to answer these questions by including women who received a genetic response for the BRCA mutation. What emerges is that the genetic information shapes risk-reducing prac-tice, fostering genetic responsibilities within the family. This seems to encourage woman to perceive radical risk-reducing strategies such, as a mastectomy or oophorectomy, as the main - and often mandatory - solution to face breast cancer risk thereby underestimating the health risks and psychological burden involved in preventive surgery.

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Intersections of health and gender imperatives: stratified decision-making among women with a BRCA mutation

Cited by 3 publications

References 40 publications

Breast cancer genetic mutation: Synthesis of women's experience

Breast cancer genetic mutation: Synthesis of women's experience

Links between gender norms and the intergenerational transmission of health information in parents carrying BRCA1/2 pathogenic variants

You definitely need a mastectomy if you are mutated! Experiencing breast cancer among genetic responsibilities and risk-reducing practices

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