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“Fight, live, keep smiling” the first Italian blog about metastatic breast cancer A semantic analysis of all the comments posted online since the blog has been created, in January 2014 Francesca Balena¹, Tiziana Moriconi², Ilaria Vacca¹, Mimma Panaccione¹, Barbara Bragato¹, Ivana Policiti¹, Sabrina Franci¹, Tiziana Farci¹ 1 Europa Donna Italia, MBC Working Group, Milano, Italy - 2 Galileo servizi editoriali; Salute Seno – D la Repubblica, Milano, Italy Background Talking about advanced cancer is still a taboo in Italy, and little is said about it in the media. In order to overcome this situation, five women with metastatic breast cancer have created the first Italian blog about MBC, published by one of the most popular women’s web magazines in the country, “D la Repubblica”. Methods and objective We conducted a quali-quantitative analysis and a semantic analysis of all the comments posted online from January 2014 to April 2015: 28 posts and 618 comments were analyzed. The main goals To draw attention to the problems the MBC Italian patients face everyday. To understand how the blog can be supportive. To draw up guidelines for the Europa Donna Italia advocacy activities in the MBC field. The blog FIGHT, LIVE, KEEP SMILING Link: lottare-vivere-sorridere-d.blogautore.repubblica.it 9.576 pageviews per month 5.751 unique visitors per month (source: Webtrekk, April 2015) The growth of the community What do women talk about in the blog?* The 5 main issues in the medical sphere The 5 main issues in the sphere of family and friends The 5 main needs The 5 main issues in the daily life sphere What feelings arise in the blog?* The 5 main positive feelings The 5 main negative feelings Word link The word “blog” is tied to Positive: Exchange of information Hope Comfort • Strength • Sharing Enthusiasm Relationship Negative: • none The word “oncologist” is tied to Positive: Confidence Hope Reference point Good relationship Negative: • Lack of time Lack of support Lack of confidence • Lack of communication skills Understaffed hospitals The word “therapy” is tied to Positive: Confidence Hope Moral support Negative: • Struggle • Irritation • Pain Anxiety The word “cancer” is predominant and it is tied to a lot of words: as the very common one, “shame” is worthy of attention. Conclusion The blog has highlighted some important needs of Italian women with metastatic breast cancer: being given consideration, getting and giving information, sharing experiences. The blog is not “just” a self-help community, but it is a powerful tool of communication, and a new advocacy movement is arising thanks to it. Marika’s comment, 13 May 2014 “The most beautiful and the most important thing you have emphasized is this: we die because of cancer, but we can also live with it. Cancer is not a death sentence as it is always seen, but it is a different way of living. If today I see this terrible disease as curable, it is thanks to your concrete example: a positive life is possible. You were able to go beyond the pain, the fear, and starting from this point, I have improved my way of taking the disease. You are, indeed, the warriors that we should be and could be. I told friends and relatives about you, and I hope they are reading this blog, because your journey is full of hope, but it is also real. A reality that may be scaring, but it is not dark. I believe that as you have helped me, you can help many other women”. 02/2014 01/2014 3078 2430 3150 2466 1674 1368 1359 963 1341 2250 2862 2790 3852 4698 5742 5751 03/2014 04/2014 05/2014 06/2014 07/2014 08/2014 09/2014 10/2014 11/2014 12/2014 01/2015 02/2015 03/2015 04/2015 Relationship with the doctors Therapy and drugs Follow up and medical analysis Metastasis Clinical trial 292 234 209 117 30 Children Friendship Family Partner Maternity/maternity desire 80 69 33 31 30 More information about metastatic breast cancer More support by doctors More time and space during the doctor’s meeting More information about clinical trials More information about the rights of metastatic patients 256 100 62 30 29 How to face life/quality of life Support by the blog Women’s life Death Rights and working life 175 98 81 40 39 Gratitude Strength Hope Will to live Love 171 149 59 50 35 Fear Struggle Pain Loneliness Anger 143 42 22 14 8 * The numbers represent the comments in which each issue compares ITALIA Member: EUROPA DONNA The European Breast Cancer Coalition @ Elena Datrino ITALIA Member: EUROPA DONNA The European Breast Cancer Coalition This project is supported by an unrestricted educational grant by in collaboration with The analysis was promoted by conducted by Europa Donna Italia’s MBC Group and lisbona70x100.indd 1 04/11/15 10.33

“Fight, live, keep smiling” · FIGHT, LIVE, KEEP SMILING Link: lottare-vivere-sorridere-d.blogautore.repubblica.it 9.576 pageviews per month 5.751 unique visitors per month (source:

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Page 1: “Fight, live, keep smiling” · FIGHT, LIVE, KEEP SMILING Link: lottare-vivere-sorridere-d.blogautore.repubblica.it 9.576 pageviews per month 5.751 unique visitors per month (source:

“Fight, live, keep smiling” the first Italian blog about metastatic breast cancer

A semantic analysis of all the comments posted online since the blog has been created, in January 2014Francesca Balena¹, Tiziana Moriconi², Ilaria Vacca¹, Mimma Panaccione¹, Barbara Bragato¹, Ivana Policiti¹, Sabrina Franci¹, Tiziana Farci¹ 1 Europa Donna Italia, MBC Working Group, Milano, Italy - 2 Galileo servizi editoriali; Salute Seno – D la Repubblica, Milano, Italy

Background Talking about advanced cancer is still a taboo in Italy, and little is said about it in the media. In order to overcome this situation, five women with metastatic breast cancer have created the first Italian blog about MBC, published by one of the most popular women’s web magazines in the country, “D la Repubblica”.

Methods and objectiveWe conducted a quali-quantitative analysis and a semantic analysis of all the comments posted online from January 2014 to April 2015: 28 posts and 618 comments were analyzed.

The main goals • To draw attention to the problems the MBC Italian

patients face everyday.• To understand how the blog can be supportive.• To draw up guidelines for the Europa Donna Italia

advocacy activities in the MBC field.

The blogFIGHT, LIVE, KEEP SMILINGLink: lottare-vivere-sorridere-d.blogautore.repubblica.it9.576 pageviews per month5.751 unique visitors per month (source: Webtrekk, April 2015)

The growth of thecommunity

What do women talk about in the blog?*

The 5 main issues in the medical sphere

The 5 main issues in the sphere of family and friends

The 5 main needs

The 5 main issues in the daily life sphere

What feelings arise in the blog?*

The 5 main positive feelings

The 5 main negative feelings

Word linkThe word “blog” is tied toPositive:• Exchange of information• Hope• Comfort• Strength• Sharing• Enthusiasm• RelationshipNegative: • none

The word “oncologist” is tied toPositive:• Confidence• Hope• Reference point• Good relationship

Negative:• Lack of time• Lack of support• Lack of confidence• Lack of communication skills• Understaffed hospitals

The word “therapy” is tied toPositive:• Confidence• Hope• Moral supportNegative:• Struggle• Irritation• Pain• Anxiety

The word “cancer” is predominant and it is tied to a lot of words: as the very common one, “shame” is worthy of attention.

ConclusionThe blog has highlighted some important needs of Italian women with metastatic breast cancer: being given consideration, getting and giving information, sharing experiences. The blog is not “just” a self-help community, but it is a powerful tool of communication, and a new advocacy movement is arising thanks to it.

Marika’s comment, 13 May 2014“The most beautiful and the most important thing you have emphasized is this: we die because of cancer, but we can also live with it. Cancer is not a death sentence as it is always seen, but it is a different way of living. If today I see this terrible disease as curable, it is thanks to your concrete example: a positive life is possible. You were able to go beyond the pain, the fear, and starting from this point, I have improved my way of taking the disease. You are, indeed, the warriors that we should be and could be. I told friends and relatives about you, and I hope they are reading this blog, because your journey is full of hope, but it is also real. A reality that may be scaring, but it is not dark. I believe that as you have helped me, you can help many other women”.02

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* The numbers represent the comments in which each issue compares

ITALIA

Member: EUROPA DONNAThe European Breast Cancer Coalition

@ E

lena

Dat

rino

ITALIA

Member: EUROPA DONNAThe European Breast Cancer Coalition

This project is supported by an unrestricted educational grant by in collaboration withThe analysis was promoted by conducted by Europa Donna Italia’s MBC Group and

lisbona70x100.indd 1 04/11/15 10.33