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Looking for different levels and patterns of responsibilities, Factors…

- - - - (Minas' brother) My brother told me he'll go if he has the time, and he’ll probably get tested if I drag him there, but since he works in the countryside, it would be hard for me to take him to the hospital. (...) I’ve been thinking I should talk about it once more. I’m sure he’ll go if I edge him on one more time
        
        BENEFIT will come : Mina is confident that if she repeats, information will be transmitted and taken serious (= until undergoing GT)
        
        RISK: to overpass the autonomy of the relatives or his/her choice = the right not know
    - - So we are very open. My...my family back in Virginia on the other hand, like a closed book. Boom. If you don't talk about it it'll go away. And kind of the same thing with my husband's family. So, it's a lot harder to...to talk to them. And I really tried to talk to my family especially when I found out that...you know I was BRCA2 positive in 2016. And my two brothers...and my one brother has no children but my younger brother has a son. And his wife actually just had breast cancer so [rire]....so this kid's got ...potential for a genetic mutation one the one side and his mother's got breast cancer. So...you know... So I started out, of course being very passionate. “You know you need to get tested. You need to go and get tested. I am positive. There is a 50% chance you are. There is a 50% chance, if you are, a 50% chance you've passed it on to your son. Same for me”. And ...they really don't want to hear it. It's interesting
      - So that's when I tested positive then, in 2016. So it wasn't that long ago. So yes I did...yes I did. I immediately sent emails to...to my cousins...and like I said it was not...it was not the response I expected. I got more of response from my cousins daughters. That younger generation was... :”Ok ok now we need to be tested. And thank you so much for letting us know. And we are not surprised given the...you know...the family history”. (...) And my cousins children they were all in their 20s as well. So they were at an age where they needed....to hear, I felt anyway, they needed to hear it. They need to know. I think everyone has a right to know their family history
    - - I hope the doctors would tell us something like this. If we know this sooner, we can take some actions between families. This is my wish. I: What do you mean by action? S: I have my children, and they can also have genes. If we knew about it, we could keep checking about ovarian cancer, or breast cancer. But now it’s like that, and also my son took a genetic test. I’ve heard that many men are diagnosed with breast cancer
        
        BENEFIT: Thanks to having desconstruct misconceptions, she pass information to her son
      - RISK: She is trying to transmit but not being listened or relatives do not take it serious
        
        Somi: Oh, your two brothers have kidney cancer? S: Yes, I heard that men usually develop cancer in their breasts and kidneys. I told them to test it, but they didn’t. I: Oh, you told them about BRCA, but they didn’t want the test? S: Yes. I also told to all my nephews, but they didn’t take it. I: What about your younger brothers and their children? S: I told them too, but they didn’t think about doing it. I: Why? Why didn’t they take it? S: Well, I don’t know. I kept telling them to get a test, but I couldn’t help them, because they didn’t listen to me. There was nothing I could do. I: Hmm…. How many times have you told them? S: Several times.
        
        Somi: It’s just that everyone, even my husband, doesn’t seem to feel anything serious. It seems like everyone doesn’t consider this a serious problem. I recommended my son to get tested, and he said he wouldn’t. But I just forced him to get it. But fortunately, it’s a relief that there’s no problem with him.
        
        BENEFIT: Thanks to having desconstruct misconceptions, she pass information to her son and is feeling "relief"
    - - Gender attitude or misunderstanding about male's risk
      - misunderstanding with medical information
        
        (Mina) My aunt didn't even get tested since the doctors said that if the daughter wasn't positive, my mother didn't have to get an examination. This was at SMC Hospital. I: Oh, you did it in SMC. They said the mother didn’t have to take it? MINA: Yes, I guess so. I think it was because the mother had no reason to receive it if the daughter didn’t have a mutation. But as she’s my mom’s sister, I want my aunt to get tested. But, she has different thoughts from us. I guess her thought process is why do I have to get tested for something that’s not going to affect me? Even though I think she should, we can’t force her to get tested.
- - - - BENEFIT: better late than never
      - RISK : if it comes to late..
    - - RISK : the anonymous and cold letter coming from Hospital can be disturbing (future publication with P. Chappuis)
      - BENEFIT : Strategy allowing to overcome comunication difficulties or problem of relationship between relatives
  - - - RISK: not to receive the expected attention / support
        
        Somi: It’s just that everyone, even my husband, doesn’t seem to feel anything serious. It seems like everyone doesn’t consider this a serious problem.
      - BENEFIT: support
  - - - "My mum has three sisters and two of them have the same genetic defect. And they went through the same thing as my mom, they also got breast cancer several times. And they are always there as soon as I say I have an appointment or I feel unwell or something is wrong, they are always there immediately and advise me. And of course they also have a lot of experience with doctors and the whole thing and are always there to strengthen my back"
        
        BENEFIT : support from relatives, genetic familial solidariety
- - - - “With my...extended family you just...you give the information and if they have questions that I can answer, I answer them. If I can't I say: “Look you need to talk to your doctor... And find out more”. I did get...I gave them... actually copies of my report. So that they could show it to their doctors. So whether they did or not...what they did with it I don't know.” (...) I backed off and said of you do with this information as you wish...but here's the situation.
- - - - It would be nice for me (Antonia) to have him (her brother) arround
  - - - "my family doesn’t even think about testing because it's too expensive".
  - - - Somi; But when I went to conference or something like that, I heard about that there may be a genetic factor, so I tried to take the test by myself. The doctor didn’t tell me about it.
    - - "Cancer to me now is just another disease. Don’t make it out to be this huge, big problem. Just relax and don’t do things that the hospital says you shouldn't do. And when the hospital asks you to do something, I think it'll be okay to follow their instructions. If I get diagnosed, I just need to work hard to recover. It'll all be okay, that time will pass by
- - - - Mina the mentality changer had difficulty to speak about cancer at the very beginning : "How are we going to open up about this? was first, while me having cancer wasn’t as important to me. My health was second. How do I tell my mom about this? My greatest worry was my mom after all."
        
        "However, since I was diagnosed, it was hardest for me to tell my parents and the people around me. It was hard for me to physically say that I had cancer, but I don't think I was worried much about anything else."
        
        Second, opening the discussion in close family, her mum opened the discussion in a kind way
        
        Mina closed her shop a while and did the chemio and all therapy
        
        Mina's family showed sickness acceptance: " Everyone just kind of accepted the fact that I was sick. There’s nothing we could do about it so there was no use being negative about it. My mom spoke of it in a very comfortable manner, but she must have been more heartbroken than when she herself got cancer haha.
        
        Third, sharing the experience about gene and cancer all around (to customers, on TV show) and trying to change mentality/representation about gene
        
        1 more item...
    - - Somi the active learner is willing to speak openly with close relatives but not with strangers (people outside the family, e.g. neighboors) because of gossiping : Yes, but I can talk it to my family very comfortably, but I don’t want to talk to my neighbors about BRCA.
        S: It’s because this is about the history of the family? My biggest concern is my grandchild. I’m afraid that people are prejudiced against the child. I hate the look of people who think that my grandchild must also have the BRCA gene.
        
        Somi is an active learner, interested into genetic and looking for information. In 2010, no doctors told her anything, but she went on her own to a conference and learned about genetic transmission
        
        but her interest for prevention and genetic literacy is not shared in her family. See family tree. No cousin, no brothers are listening