Related Papers
We're living in an era of facebook and blogs. It's a familiar and comfortable space" : exploring the use of virtual support groups by women diagnosed with breast cance
2012 •
Lesego Kgatit*we
Frontiers in Oncology
Social Media Listening to Understand the Lived Experience of Individuals in Europe With Metastatic Breast Cancer: A Systematic Search and Content Analysis Study
Claudia Vieira
BackgroundDespite a wealth of real-world data on metastatic breast cancer (mBC), insights into the lived experience are lacking. This study aimed to explore how the lived experience of mBC is described on social media.MethodsA predefined search string identified posts relevant to the lived experience of mBC from Twitter, patient forums, and blogs across 14 European countries. The final data set was analyzed using content analysis.ResultsA total of 76,456 conversations were identified between November 1, 2018, and November 30, 2020. Twitter was the most commonly used social media platform across all 76,456 conversations from the raw data set (n = 61,165; 80%). Automated and manual relevancy checks followed by a final random sampling filter identified 820 conversations for content analysis. The majority of data from the raw data set was generated from the United Kingdom (n = 31,346; 41%). From this final data set, 61% of posts were authored by patients, 15% by friends and/or family me...
Catalyst: Feminism, Theory, Technoscience
Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients
Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to profile four women living with metastatic breast cancer who turn to social media to tell their stories: Sally, a former civil rights attorney turned breast cancer activist, who uses social media platforms to organize and mobilize Stage IV patients to advocate on their own behalf; Jane, who plows through databases of dense medical research to find treatments to save her own life; Jenny, a young mother dying of metastatic breast cancer who shares her experiences on a YouTube channel; and Grace, who participates in an early-stage clinical trial that she believes “cured” her, a term eschewed by both the medical establishment a...
Women & Health
Communicating Breast Cancer On-Line: Support and Empowerment on the Internet
1997 •
Barbara Sharf
Using participant-observation and discourse analysis, this study explores the communication occurring on the Breast Cancer List, an on-line discussion group which continues to grow in membership and activity. Issues discussed include the evolution of the List, who participates, what topics are discussed. Three major dimensions are identified: exchange of information, social support, and personal empowerment. Social support via computer is compared with face-to-face groups. Empowerment centers on enhanced decision-making and preparation for new illness-related experiences. The influence of gender is considered in terms of communicative style and limitations of access. It is concluded that the List fulfills the functions of a community, with future concerns about information control and the potential to enhance patient-provider understanding.
Global Perspectives on Health Communication in the Age of Social Media
Social Support Through Digital Media? Breast Cancer Groups at Facebook
2018 •
Aslıhan Ardıç Çobaner
This chapter aims to analyze the use of online support groups for breast cancer in Turkey. After describing the general characteristics of such groups, the authors closely analyze the two Facebook groups on breast cancer. The analysis focuses on how the patients read the illness and their struggle to cope with the illness; how social support mechanisms are used; and which aims and motivations are foregrounded. Both quantitative and qualitative techniques are used in the research. Informed by the international research literature, the chapter also tries to underline the similarities and differences of online social media in the Turkish context. Although the main purpose of the groups is to share information, emotional empathy and shared personal experience are also obvious.
Women's Studies International Forum
Blogging and Breast Cancer. Narrating one's life, body and self on the internet.
2014 •
Marjolein de Boer
Journal of Media and Communication Studies
Social media as a means to overcome stress and depression among women
2018 •
Dr I Arul Aram
Healthcare
Can Social Media Be Used as a Community-Building and Support Tool among Jewish Women Impacted by Breast and Ovarian Cancer? An Evidence-Based Observational Report
Nikoleta Marku
About 1 in 40 Ashkenazi Jewish women carry a deleterious mutation in BRCA1/2 genes, predisposing them to hereditary breast/ovarian cancer (HBOC). Thus, efforts to prevent and control HBOC in the US must include sufficient outreach and education campaigns within and across the Jewish community. Social media (SM) is utilized in public health campaigns focused on cancer, but very little is known about the efficacy of those efforts when directed toward Jewish women at risk for (“previvors”) and affected by (“survivors”) HBOC. Here, we report on outcomes of a targeted SM campaign for this population, as led by a national not-for-profit HBOC advocacy organization. Mixed-methods data were obtained from n = 393 members of the community, including n = 20 key informants, and analyzed for engagement and satisfaction with its SM campaign and HBOC resources. Message recipients identified the SM campaign as helpful/meaningful (82%), of ‘newsworthy’ value (78%), and actionable/navigable (71%): int...
Health Communication
Previvorship posting: Why breast cancer previvors share their stories on social media
2022 •
Avery Holton
Research on previvors, individuals with a genetic predisposition to develop hereditary breast and ovarian cancer but who have not yet been diagnosed with breast or other cancers, examines online information gathering and community support to alleviate uncertainty. However, research exploring online content published by previvors themselves is limited. We examined content published to Instagram and TikTok to explore how breast cancer previvors discussed their lived experience which included, but was not limited to, genetic testing, diagnosis with a BRCA1/2 pathogenic (i.e. risk-increasing) variant, the decision to undergo preventative measures like surgery and/or reconstruction, and how they cope after diagnosis and surgical procedures. In the findings, we explicate how many previvors feel a responsibility to share their authentic experience on social media in order to help others and mitigate their own feelings of uncertainty. This study offers a snapshot of how women are sharing breast cancer previvorship and building social connections with each other online.
PLOS ONE
Clicks, likes, shares and comments" a systematic review of breast cancer screening discourse in social media
2020 •
Bence Döbrössy
BackgroundUnsatisfactory participation rate at population based organised breast cancer screening is a long standing problem. Social media, with 3.2 billion users in 2019, is potentially an important site of breast cancer related discourse. Determining whether these platforms might be used as channels by screening providers to reach under-screened women may have considerable public health significance.ObjectivesBy systematically reviewing original research studies on breast cancer related social media discourse, we had two aims: first, to assess the volume, participants and content of breast screening social media communication and second, to find out whether social media can be used by screening organisers as a channel of patient education.MethodsWe followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). After searching PubMed, ScienceDirect, Web of Science, Springer and Ebsco, 17 studies were found that met our criteria. A systematic narrative framework was used for data synthesis. Owing to the high degree of heterogeneity in social media channels, outcomes and measurement included in this study, a meta-analytic approach was not appropriate.ResultsThe volume of breast cancer related social media discourse is considerable. The majority of participants are lay individuals as opposed to healthcare professionals or advocacy groups. The lay misunderstandings surrounding the harms and benefits of mammography is well mirrored in the content of social media discourse. Although there is criticism, breast cancer screening sentiment on the social media ranges from the neutral to the positive. Social media is suitable for offering peer emotional support for potential participants.ConclusionDedicated breast screening websites operated by screening organisers would ensure much needed quality controlled information and also provide space for reliable question and answer forums, the sharing of personal experience and the provision of peer and professional support.
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