Table 2.
Supporting quotes about “Communication between healthcare providers and probands”.
| Themes | Quotes | Supporting Quotes |
|---|---|---|
| Variability in the approach to family communication | 1 | “In the department they told me: “You have to communicate with your family …”. But it was a bit abstract. I mean, I would have left from there and I might have done nothing too …” (Anna, 48 y.o., cancer diagnosis)—FG * |
| 2 | “Actually, the communication to the family was delegated to me. (…) Perhaps it was implied, they spoke more in the feminine, then for the offspring, they spoke in the masculine. (…) This thought made me think that there was no need to tell to my uncles. I understood so … but then it is the perception.” (Carla, 48 y.o., cancer diagnosis)—I ** | |
| 3 | “No, that communication on her side (the genetic counsellor) was just too soft. And that applies to the family clarification as well, exactly the same. It shouldn’t be “it would be best to inform your relatives”, but: “We request you to clarify your family status.” Clearly and unambiguously described. Not “you could”. But: “Go there! Do it!” (Penny, 52 y.o., no cancer diagnosis)—I | |
| 4 | “(The physician) was absolutely available afterwards. I didn’t feel the need to see him again. Anyway, he’s a great person, I really found him to be totally adequate.” (Katarina, 33 y.o., no cancer diagnosis)—FG | |
| 5 | “I received a letter from the hospital explaining what it was and that I could possibly have the gene mutation and that I should contact Dr… And that’s what we did, together with the sister. Afterwards we had all the genetic meetings with her. She (the physician) explained it very well. So, for me it was never the case that I was somehow all alone and badly informed.” (Rose, 50 y.o, no cancer diagnosis)—FG | |
| Difficulty in receiving information about family communication | 6 | “The oncologist, I can’t tell you right now if she’s been talking to me about the mutation running in the family, I don’t know. (…) When I was with her for the first time, I wasn’t doing so well psychologically.” (Antonia, 33 y.o., no cancer diagnosis)—I |
| 7 | “Because of the speed with which everything happened, it (the topic of family communication) was touched on but not explored. It was said that there was a possibility to communicate to the boys and close family members, as there was heredity. This was communicated. (…) It was probably enough at that moment. Because you’re in a situation of turmoil (…) Maybe it would have been different, if illness happened afterwards.” (Carla, 48 y.o., cancer diagnosis)—I | |
| 8 | “So, for me the shock of finding out that I had this mutation was even greater than finding out to have a cancer. I did the test, and I got the results. It was terrible for me because it meant that I could have passed on this mutation to my daughter, and I felt guilt.” (Luise, 45 y.o., no cancer diagnosis)—FG | |
| Inconsistency in the follow-up of the issue of family communication | 9 | “I’m really starting to get into it (communication to children) now. Before I was more about saving my own skin, that’s done, for now anyway, and now I want to save my kids.” (Mari, 42 y.o., cancer diagnosis)—I |
| 10 | “No, let’s say they gave me a lot of information all at once at the beginning, so understanding and remembering everything was a bit of a struggle. (…) So, I remembered this thing, I told them (family members), but I didn’t remember it specifically. Today I came, I spoke again about this thing here (with the physician) because I had not well understood it (…) I could resume some aspects that I had not understood, because it is not obvious on so many things to understand them all obviously.” (Sabina, 52 y.o, no cancer diagnosis)—I | |
| 11 | “He (the physician) did talk to me about all of this, but it was rather at the beginning. So sometimes I think it would have been necessary to take up the subject again later on. Because I was just informed by him once I had gotten the result, and I didn’t really have any questions until later.” (Gisela, 46 y.o., no cancer diagnosis)—FG | |
| 12 | “It was mainly the geneticist who encouraged me to talk to the family. Then when I went back to my gynecologist, he asked me if I had other family members, how they had taken it. Just out of interest. But...more than out of medical concern.” (Christine, 47 y.o., no cancer diagnosis)—FG | |
| 13 | “I might have been able to go to him again, but somehow I looked for (information) then in other places.” (Gisela, 46 y.o., no cancer diagnosis)—FG |
* (FG) Focus Group; ** (I) Interview.