A qualitative study on decision‐making about
            <i>BRCA1/2</i>
            testing in Italian women

Battistuzzi, Linda; Franiuk, Marzena; Kasparian, Nadine A.; Rania, Nadia; María, Laura; Varesco, Liliana

doi:10.1111/ecc.13083

Cited by 11 publications

(7 citation statements)

References 34 publications

(74 reference statements)

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“…The focus on a diagnosis, which is a central theme of the present study, becomes even more important if it is connected to the theme of health innovation and to new possibilities introduced by genetic and scientific advances as well as new technologies to have more sensible and timely diagnoses. This change urges a deep understanding of the psychological effects of genetic diagnosis on individuals and their families (Rania and Migliorini, 2015; Alby et al, 2017; Battistuzzi et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

2019

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Family caregiving is a growing phenomenon with the increased prevalence of chronic illness and shorter hospitalizations. Rare diseases pose significant challenges not only to patients living with these kinds of pathologies but also to those who care for these patients. The caregiving role has specific characteristics. The present work aims to increase knowledge of the challenges that are common or specific to fathers and mothers of children diagnosed with a rare disease. Moreover, the paper analyses the kinds of social support they experience according to gender. A descriptive study was conducted using grounded theory methodology. A semi-structured interview with open-ended questions was conducted with 15 parents of children with a rare disease. The interview was organized into three main areas: personal experiences in caring for a child with a rare disease, family changes and perceived social support. The transcriptions were analyzed using NVivo 11 software. From data analysis, themes emerged regarding the challenges shared by fathers and mothers, but some aspects also emerged that were gender-specific. The analyses of differences between mothers’ and fathers’ narratives showed that there is a specific experience of the impact that caregiving has on parents’ relationships with their jobs and on their worries. Self-help group is the main source of social support for all respondents. We discuss these findings in relation to possible appropriate specific interventions and support for family caregiving.

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Section: Discussionmentioning

confidence: 99%

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

2019

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“…However, there is limited awareness of genetic counselling, especially among young adults (Godino, Turchetti, Jackson, Hennessy, & Skirton, 2019). The decision to perform genetic testing often precedes counselling (Battistuzzi et al, 2019). The patients in this study seemed to be worried about hereditary cancer risk and most of them reported a high level of interest in the topic.…”

Section: Discussionmentioning

confidence: 99%

How to improve the identification of patients with cancer eligible for genetic counselling?

et al. 2020

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In the last few decades, more than 50 cancer syndromes have been described. The most commonly studied hereditary mutations are in the BRCA1 and BRCA2 genes, which are associated with hereditary breast and ovarian cancer syndrome (HBOC syndrome), and the mismatch repair genes (e.g. MLH1, MSH2, MSH6, PMS2, EPCAM), which are responsible for hereditary non-polyposis colorectal cancer syndrome (HNPCC syndrome or Lynch syndrome). Harmful mutations in the BRCA1 and BRCA2 genes increase the risk of breast and ovarian cancer, fallopian tube and peritoneal cancer, breast and prostate cancer in men, and pancreatic cancer

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“…In order to ask for more attention and reflection and promote policy interventions for health and to consider the contribution of women to the health of the community (50). Moreover, the importance of attention to the involvement of people in their own health choices is now known (51, 52) and how the changes introduced by new health technologies make the relationship with health more predictable, which in this pandemic situation, on the other hand, seems to waver but, at the same time, require the person to internalize the idea of inevitable risk (53,54), which in this context becomes even more pervasive.…”

Section: A Gender Perspective: Women and The Covid-19 Pandemicmentioning

confidence: 99%

Women Face to Fear and Safety Devices During the COVID-19 Pandemic in Italy: Impact of Physical Distancing on Individual Responsibility, Intimate, and Social Relationship

Parisi

Lagomarsino

Rania

et al. 2021

Front. Public Health

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The COVID-19 pandemic of 2020 in Italy had its first epidemic manifestations on January 31, 2020. The socio-sanitary rules imposed by the government concerned the social distance and management of intimate relationships, the sense of individual responsibility toward public health. Physical distancing and housing isolation have produced new representations of intrafamily, generational, neighborhood, community responsibility, bringing out a new “medicalized dimension” of society. In light of this contextual framework, the research aims are to analyze how: the perception of individual responsibility for public and familial health and physical distancing has redrawn the relation between subjects-family-community; the State's technical-health intervention has reformulated the idea of social closeness, but also how the pandemic fear and social confinement has re-evaluated a desire for community, neighborhood, proximity; during the lockdown families, friends, neighbors have reconstructed feelings of closeness and forms of belonging. The methodology used is quanti-qualitative and involved 300 women through an online questionnaire. The data collected highlight how the house during the lockdown is perceived as a safe place and how women implement both the recommendations and the behaviors aimed at preventing contagion, but also ways that allow coping with the situation from a perspective of well-being. Furthermore, the data show how the dimension of distancing has loosened the relational dimension outside the family unit, with a greater distancing compared to pre-pandemic data. However, the majority of women report that they have joined solidarity initiatives, demonstrating that they want to maintain ties and participate actively in community life.

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A qualitative study on decision‐making about BRCA1/2 testing in Italian women

Cited by 11 publications

References 34 publications

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions

How to improve the identification of patients with cancer eligible for genetic counselling?

Women Face to Fear and Safety Devices During the COVID-19 Pandemic in Italy: Impact of Physical Distancing on Individual Responsibility, Intimate, and Social Relationship

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