Table 3.
Supporting quotes about “Probands’ decision-making regarding family communication”.
| Themes | Quotes | Supporting Quotes |
|---|---|---|
| Responsibility | 14 | “Communication is a due act, in the sense that (…) it is right and proper to talk about it. (…) I feel like I did the right thing. That I communicated. (…) in my opinion this (communication to relatives) is a right thing.” (Sabina, 52 y.o, no cancer diagnosis)—I * |
| 15 | “I did my part. I explained to them (my relatives) what had happened to me. What could possibly happen to them... Or not. I hope it never happens to them. But I thought it was important to communicate on the subject. (…) It has been a burden on me that. I mean it’s not easy, to take the step, to do that, it’s hyper personal anyway…” (Anna, 48 y.o, cancer diagnosis)—FG ** | |
| 16 | “Genetic risk is part of my life and our life. For me what was very important was that my family knew about it. I have a sister who tested positive (…) she’s much younger than me, she’s 13 years younger, so she was tested a few years ago. So, for me it’s very important that she knew that there was this risk.” (Perla, 50 y.o., no cancer diagnosis)—FG | |
| 17 | “To the people you care about, you want to say it despite this difficulty... with a person that you know and that you care about, it is more difficult to do because emotionally you are more taken... (I felt bad) for my sisters because they have children, they have nieces and nephews, so the more people you care about, in my opinion, the more difficult it is to say it.” (Sabina, 52 y.o, no cancer diagnosis)—I | |
| 18 | “The responsibility in the family is so needed. That’s not modern, nowadays people are no longer responsible for the cousins, grandparents, the widowed aunts, it’s not like it used to be. This is something (genetic risk) that I have to actively tell people, and I think it’s also something that should be emphasized by the authorities. This is a problem in our society.” (Penny, 52 y.o., no cancer diagnosis)—I | |
| 19 | “I almost felt a little responsible for bringing this to the public. (…) Simply when I got into a conversation with someone, I actually communicated it openly because I think the more we know about it, the better. And yes, the way we were actually badly informed, that doesn’t help anyone or anything.” (Gisela, 46 y.o, no cancer diagnosis)—FG | |
| 20 | “This is what I said to myself, I have this thing that is not good, how can I make it useful? Communicating it as my mother did with me, it came to my mind afterwards, as an information to have. Then everyone has their own time, and maybe like me you do it in stages. But it’s important to give the information so that everyone can decide what to do next. In a certain sense it’s not pleasant, it’s not easy, it’s not nice, but it’s useful information to know in order to make informed choices and not to say “if we had known about it before …” (Sonia, 34 y.o., no cancer diagnosis)—I | |
| 21 | “I saw the psychologist to help me deal with the situation. And then she told me about it (communication), saying: “Now you have to communicate, you have to talk about it”. … And so, it was she who … convinced me to do it.” (Anna, 48 y.o, cancer diagnosis)—FG | |
| Self-preservation | 22 | It’s not that I go to take all the relatives and “You know I had this”. ”I hang out with a lot of people but nobody knows about my illness.” (Bruna. 67 y.o., cancer diagnosis)—I |
| 23 | “It was difficult to communicate that I was ill. (…) So only my sister knew and I only decided to tell my parents when I got home. Also, because I spent 3–4 days crying all day long (…) It was clear that I was ill but I didn’t... I didn’t say it because I was mad as hell, honestly, I was mad at the world. I didn’t want to say it out loud so it became reality even if it was reality. (…) The looks of pity as if I were going to die at any moment. I won’t say... maybe because of those looks I never said it.” (Fiona, 32 y.o., cancer diagnosis)—I | |
| 24 | “After my chemo (I wrote to my relatives). It was not possible before, I was so weak that it was not possible. But I did it maybe a year and a half after the cancer was discovered … When I started to get better …” (Anna, 48 y.o., cancer diagnosis)—FG | |
| 25 | “So, it’s difficult to talk to someone who you do not have any kind of contact with—because I know I had some distant relatives in Italy somewhere. And we didn’t want to call them, since they are too far away. We tried to tell someone in the extended family who was closer to them, so that they could then transmit it. But really, with people who I barely know, I just do not feel comfortable to call them and confront them with something like that.” (Gisela, 46 y.o., no cancer diagnosis)—FG | |
| Protection of others | 26 | “I never talked to my sister, I don’t even know how she reacted (to my situation). She is scared (about cancer). She’s really scared. She’s always been afraid.” (Clara, 48 y.o., cancer diagnosis)—I |
| 27 | “I decided to inform only my cousins and not my uncles or aunts because of their age. I felt it would be “too much for them”. For the same reason, I did not ask my parents to take the test. I didn’t want to put them in a difficult position, also in relation to possible feelings of guilt for having transmitted me the mutation.” (Gaia, 42 y.o., cancer diagnosis)—I | |
| 28 | “Yes, I just think my dad has closed the chapter on that (cancer), that’s a story from the past that he’s certainly carrying it with himself, but he didn’t want it to be present anymore. It’s probably wrong (of him), it’s hard to describe, it’s just a very extreme story from the past. And for me it is just, that for me the genetic defect is more acute/present than for my father. But I think, as long as I’m healthy, it’s okay for my dad the way it is. And with my brother I find it very difficult (to talk to him) because he has a lot of trouble to find grip under his feet.” (Antonia, 33 y.o., no cancer diagnosis)—I | |
| 29 | “I think it makes a difference, because strangely enough I haven’t talked about it so much with my sister, because I’ve always been afraid of scaring her, about me or whatever. With my partner or with my circle of friends I could talk about it again very well. They took it in a completely different way.” (Rose, 50 y.o., no cancer diagnosis)—FG | |
| Respect of autonomy | 30 | “Each case is, I think, different. And it has to do with your own experience. I think the only thing I would like to say is that I think each of us … must do what is right for the person who is.” (Perla, 50 y.o., no cancer diagnosis)—FG |
| 31 | “And in the end, everyone has to decide for themselves whether they want to know or not and what to do about it. So, I am ready to act or not. That’s the thing, you have to think about it and make your mind up about it already before taking the test.” (Daniela, 50 y.o., no cancer diagnosis)—FG | |
| 32 | “He is in the field (of medicine) and he is not married (…) I don’t know if it is also related to the desire for children. If one knows that he can pass it on, one worries, if one has other plans, one does not. If one day he should have a daughter, he might change his mind. I had these stages, from something far away until it became too much, and I made decisions, it was indeed a path.” (Sonia, 34 y.o., no cancer diagnosis)—I | |
| 33 | “I struggle to understand and accept my cousins’ decision to ignore what was said (about the genetic risk) and to do nothing about it.” (Gaia, 42 y.o., cancer diagnosis)—I |
* I Interviews; ** FG Focus Groups.