Skip to main content

Table 4 Anchor examples for “decision-making and agreement”

From: Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice

Identified Items

Anchor Examples

Paternalistic communication

“He knew [the disease], but I think […] he wanted to protect me. I had this feeling. He said, ‘Okay, we will first look at this.’ So first of all, [he] very slowly introduced the disease, and I had that feeling. And there was no malevolence, rather the contrary, he did know the disease very well, I have to admit. As I said, I cannot say ‘I think,’ but rather protection, so he rather wanted to protect the parents. No pessimism with such a disease and no giving up of hope, but rather, he said, ‘Let’s first of all wait and to the contrary care for it. First of all, you move on with your life as it is, you keep working and everything, not giving up anything.’” (Family member, female, A09)

Informed (individual) decision-making

“Therefore, I actually see my task in keeping the strings together during a transfer on my own, and I’d like to be invited to fill out one or another transfer form from somebody with a lot of knowledge. But to just nod something through in retrospect, that I have some reluctance with.” (Physician, male, GP09)

Shared decision-making

“[…] It really helped me, and if I listened to my physician, I would have taken Hydrea since 2009. These are chemo tablets, which have a lot of side effects. Where one asks himself or herself, ‘What is really the benefit? And what’s actually the best way to go?’ And that’s what Professor [NAME] does and that’s what he confirmed as unambiguous: that I can […] decide as a patient on my own as well. That I feel it on my own, and that I rather know what’s good for me. But that does not mean that he only speaks according to his audience, or that he tells me only what he thinks I want to hear. On the contrary, […] I can say that after this conversation I have gotten so far to say, if Professor [NAME] says that it’s time for therapy, […] it’s time for therapy.” (Patient, female, P28)