Assessment of Psychosocial and Functional Effects of Metastatic Breast Cancer in Tarnow Region of Poland and Among the Social Media Polish Group—Results from the Survey from Patients

2020 ◽  
Author(s):  
Justyna Bochenek-Cibor ◽  
Katarzyna Zawisza ◽  
Filip Georgiew ◽  
Małgorzata M. Bała
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Polish Group ◽  
The Social

Can Twitter social media be an effective tool for breast cancer survivor support and education?

2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 130-130
Author(s):  
Deanna J. Attai ◽  
Jeffrey Landercasper ◽  
Jody M Schoger ◽  
Alicia C Staley ◽  
Michael S Cowher
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Metastatic Breast Cancer ◽  
Breast Imaging ◽  
Survey Methods ◽  
Metastatic Breast ◽  
The United States ◽  
Breast Cancer Patients ◽  
Cancer Support ◽  
Patient Resources

130 Background: Despite reported benefits, approximately 60% of women do not attend breast cancer support groups. Many online resources for support exist, but information regarding the effects of participation is lacking. We report the results of a Twitter breast cancer support community participant survey. Methods: The Breast Cancer Social Media (#BCSM) Twitter support community began in July 2011. IRB approval with waiver of informed consent was obtained for a de-identified survey which was posted for two weeks on Twitter and on the #BCSM blog and Facebook page. Results: There were 206 respondents, with a median age of 45-54 and 93% being female. 74% were from the United States. 92% were Caucasian. 83% completed a 4-year college degree. 69% had been treated for breast cancer. 14% reported living with metastatic breast cancer. 72% became aware of #BCSM through Twitter. 45% had been participating in the chats for > 12 months. 81% of respondents reported increased overall knowledge about breast cancer. Increased knowledge through #BCSM was reported in all the following specific domains: 86% survivorship, 80% metastatic breast cancer, 70% cancer types and biology, 66% clinical trials and research, 56% treatment options, 56% breast imaging, 54% genetic testing and risk assessment, and 43% radiotherapy. 31% reported that participation led them to seek a second opinion or bring additional information to the attention of their treatment team. 73% percent reported plans to increase their outreach and advocacy efforts as a result of participation. Levels of reported anxiety before and after participation were analyzed. 29 of 43 patients (67%) who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation (p < 0.001). Also, no patients initially reporting “low or no” anxiety prior to participation reported an increase to “high or extreme anxiety” after participation. Conclusions: While many online breast cancer patient resources exist, data documenting patient educational benefits of participation are lacking. This study demonstrates that breast cancer patients’ perceived knowledge can be increased and that their anxiety can be decreased by participation in a Twitter social media support group.

scholarly journals Quality of life of women with locally advanced or metastatic breast cancer

2020 ◽  
Vol 41 ◽  
Author(s):  
Eunice de Oliveira Lacerda Lima ◽  
Marcelle Miranda da Silva
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Metastatic Breast Cancer ◽  
Health Status ◽  
Global Health ◽  
Locally Advanced ◽  
Metastatic Breast ◽  
Global Health Status ◽  
The Social

ABSTRACT Objectives: To identify the main affected domains of quality of life of hospitalized women with locally advanced or metastatic breast cancer; and to analyze the association between the level of quality of life and stage of cancer. Method: This was a cross-sectional quantitative, study conducted in Rio de Janeiro, Brazil, between March and July 2017. Interviews were performed with 199 women. The researchers administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, with analysis using the Statistical Package for the Social Sciences software and the Kruskal-Wallis test. Results: Mean global health status was 32.04. On the functional scales, cognitive functioning scored the highest (60.47), while role functioning scored the lowest (12.48). Fatigue presented the highest mean (69.57). The scores for global health status and the functional scales (with the exception of the social functioning) decreased as staging progressed. Conclusion: The stage of cancer affects the quality of life of the studied sample of women.

scholarly journals Building Community-Based Awareness and Navigating Breast Cancer and Palliative Care Programme in Kumasi, Ghana

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 151s-151s
Author(s):  
C. Asoogo ◽  
F. Aitpilla ◽  
F.M. Hoyte-Williams ◽  
F. Awittor ◽  
B. Awuah ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Social Media ◽  
Palliative Care ◽  
Metastatic Breast Cancer ◽  
Patient Navigation ◽  
Metastatic Breast ◽  
Community Based ◽  
Structured Program

Introduction: Breast cancer is the leading cancer in Ghana and most patients report with advanced disease. Patients face many challenges in trying to access health care and support; these are particularly relevant in the case of metastatic diseases. A structured program would provide a means of rapid referral for definitive diagnosis, treatment and palliative care, where necessary. Aim: To establish community-based structured patient network, navigation and breast health awareness programs that will reduce delays in accessing care, improve the quality of end-of-life care among patients with metastatic breast cancer. Strategy: We established a community-based patient network program comprising 15 community-based patient navigators in the Kumasi metropolis and a social media networking and navigation platform made up of a team of experts and community navigators, breast cancer survivors and patients with advanced breast cancer to share experiences and express/address concerns. We assessed the breast cancer database of Komfo Anokye Teaching Hospital to establish the number, location and density of patients. Community navigator's established direct in-person contacts with the patients to offer support explain and enroll them into the social media network and navigation platform. The project team carried out various awareness campaigns including talks to organized groups, house-to-house and media campaigns. Program/Policy process: We engaged with the Ghana Health Service, local government authorities as well as traditional and community leadership in the design and implementation of the program, to encourage community ownership from the onset. These key stakeholders were also pivotal in organizing durbars, talks to organized groups and community meetings to reach out to the people. Recruitment of volunteers within the communities will ensure that patient navigation has the best chance to continue within these communities beyond the grant period. The project coordinator and her team were available for consultation and also paid periodic visits to the communities. Outcomes: A structured program to enhance referral and access to care; a community-based patient navigation system to recruit and provide support to patients with advanced breast cancer; a social media platform to provide guide and immediate support to patients with metastatic breast cancer; and improved awareness of breast cancer and its prevention in the communities. Conclusions: The program improved the health care system in the communities and also expands outreach to persons living with metastatic breast cancer to provide support and improve treatment outcomes and quality of life. It also encourages patients to visit hospitals for treatment through ease of access to medical care and informed treatment choices and palliative care.

Social Media Storytelling as an Advocacy and Support Tool for People Living with Metastatic Breast Cancer

The Breast ◽  
2017 ◽  
Vol 36 ◽  
pp. S35-S36
Author(s):  
Janine Guglielmino ◽  
Catherine Ormerod ◽  
Arin Ahlum Hanson
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Support Tool

scholarly journals Palliative Care Initiative for Cameroonian Women With Metastatic Breast Cancer

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 171s-171s
Author(s):  
B. Nkegoum ◽  
L. Mboumtou ◽  
A. Nguedia ◽  
L.H. Ndjangueli ◽  
L. Tiaya ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Palliative Care ◽  
Metastatic Breast Cancer ◽  
Health Professionals ◽  
Metastatic Breast ◽  
Care Program ◽  
Traditional Healers ◽  
Breast Cancers ◽  
Advanced Stages

Background and context: Among the 1.6 million women diagnosed with breast cancer each year worldwide, 1500 cases occur in Cameroonian women, 99% of which arise at advanced stage as there is no organized screening program in the country. Most of the women die because of lack of good diagnostic technique, lack of good treatment and medical insurance. 99% of Cameroonian women with breast cancer probably need palliative care and this is only well established in three medical centers. Most of these women are abandoned and will die in rural areas where they are managed by marabous and traditional healers. Our team has 22 years of experience in cancer screening, diagnosis, treatment and research in Cameroon. This year, SPARC METASTATIC BREAST CANCER CHALLENGE (SPARC MBC) is offering a unique opportunity to enhance our skills, particularly for women with metastatic breast cancer through this pilot initiative. Aim: To establish a pilot palliative care initiative for Cameroonian women with metastatic breast cancer and improve their quality of life. Strategy/Tactics: Using social media and an ambulatory patient care program, we plan to: 1) Establish a holistic palliative care pilot program; establish home visits and perform regular telephone calls to patients. 2) Introduce collaborations with traditional healers 3) Initiate training for health professionals. 4) Develop communication strategies for patients and provide them with psychosocial support. 5) Implement strategies for the provision of pain relieve drugs such as morphine. Program/Policy process: Advocacy visits to communities, hospitals and universities; training of community health professionals, social workers and traditional healers; and mobilization of breast cancers patients. Outcomes: It is expected that through this project, we will improve number of breast cancers detected, increase accessibility to treatment and palliative care for women diagnosed with breast cancer, reduce progression to advanced stages and mortality due to breast cancer, improve treatment outcome particularly among women with advanced stages of breast cancer, trained health professionals on palliative care and breast cancer control. What was learned: SPARC MBC is now offering a unique opportunity for Cameroonian women. We have started a sustainable palliative care program. Health professionals and social workers are now following training, mostly using social media for long distance training, or onsite in our institution. Unfortunately, we overadvertised during the first phase of this program and we are afraid we may not be able to cover the whole country and this may be discriminating or frustrating for some patients. On the other hand, some patients are now coming to our center from some neighboring countries with other cancer subtypes like prostate, cervix, liver, etc. as advertisement with WhatsApp and other social media is widespread and we are afraid we will be unable to cover this epidemic.

scholarly journals Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

2018 ◽  
Vol 4 (1) ◽  
pp. 1-24
Author(s):  
Susan Jacobson
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Metastatic Breast Cancer ◽  
Civil Rights ◽  
Early Stage ◽  
Metastatic Breast ◽  
Stage Iv ◽  
Breast Cancer Patients ◽  
Early Stage Disease ◽  
Stage Iv Breast Cancer

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 and fellow metavivors.

scholarly journals Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

2018 ◽  
Vol 4 (1) ◽  
pp. 1-24
Author(s):  
Susan Jacobson
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Metastatic Breast Cancer ◽  
Civil Rights ◽  
Early Stage ◽  
Metastatic Breast ◽  
Stage Iv ◽  
Breast Cancer Patients ◽  
Early Stage Disease ◽  
Stage Iv Breast Cancer

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 and fellow metavivors.

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