Table 4 – Quotes on “Communication with the physicians in the context of follow-up care” and “Psychosocial needs during follow-up care”
Communication with the physicians in the context of follow-up care | ||
|---|---|---|
Survivors | Caregivers | |
Positive aspects of communication with physicians | Survivor 13: “I had the feeling that this is a doctor who knows a lot. I put a lot of trust in him … and over the years … it … has become a bond. A connection has grown out of it. I trusted him enormously and that strengthened me.“ Survivor 6: “He’s really good. He responds to you, is human, has understanding. So yes, you realize that you are in good hands. And that’s really important.“ Survivor 12: “He really encourages me. … and you can tell he’s happy with me, too, because I’ve come so far, right? “ | Interviewer: “What do you find so good about it [the conversation with the doctor, the authors]?“ Caregiver 11: “That you are seen as a human being. Not only … the illness … And just the feeling that the doctor has a moment for me now. That is always … very important to me. Whether it concerns me or also the other person.“ Caregiver 7: “Well, when I have a question, I always get it answered, always. But I also don’t rest until I know what I want to know.“ Interviewer: “And how do you feel involved in your wife’s follow-up care as a caregiver?“ Caregiver 1: “As long as I can be present at the consultations if I want to, and the doctors also talk to me. Or I can also talk to the doctors and ask questions, which has been quite good so far, so I feel quite well included.“ |
Negative aspects of communication with physicians | Survivor 17: “I’ve had so many changes now in the last year and a half. Really, almost every time a different doctor. That’s not so pleasant.“ Survivor 22: “Somehow it was about smoking. I was just a heavy smoker and then he kind of barked at me (disguised voice): ‘Look at you, you look twenty years older.‘ So, the whole tone, the way he … has. That’s not my thing at all. I don’t think patients in a situation like this should be insulted like that. I thought that was harsh.“ Survivor 13: “And in the beginning, he never looked at me. He only ever talked to my husband, not me. And then I said, ‘I’m actually the patient, you can look at me, can’t you?‘” | Caregiver 12: “I would like to ask more questions sometimes. But I just have the feeling … that it goes too far.“ |
Psychosocial needs during follow-up care | ||
Survivors | Caregivers | |
No expectations of addressing psychosocial issues | Interviewer: “And do you feel that you have received holistic care? […]” Survivor 18: “Oh boy. I mean, they just want to look at my lungs, otherwise I’m fine. Otherwise I don’t have anything… I actually don’t want to be cared for anymore. I (laughing) want to be left in peace and be healthy.“ | Interviewer: “And do you have the feeling that you can also talk to doctors about the topic of quality of life? Caregiver 14: “I haven’t thought about that yet (laughs).“ Interviewer: “So, is that also an issue in follow-up, quality of life? Or questions you have about that?“ Caregiver 13: “Actually no, no … that’s never been an issue …. Your own common sense tells you that it can’t be the same as it used to be … I think many doctors simply ignore it. … The doctor would have to have a lot of time to get to grips with that.“ |
Wish for psychosocial support | Survivor 15: “Well, it really got me down sometimes, and every now and then I would have liked to have a contact person. A psychologist or something. But you don’t get one. I tried once to get an appointment. You can’t get one. Waiting time: half a year, three quarters of a year. Yeah, that doesn’t help me either if I’m in a bad way at the moment.“ | Caregiver 7: “What I would recommend to anyone in such cases is a psychologist … but she [cancer survivor, the authors] herself refused …. I would recommend it to anyone … because today she really struggles. It doesn’t matter what it is, she immediately thinks that she has cancer, regardless of what she has.“ Caregiver 13: “And then I … found a [psychologist, the authors] and the first thing he said to me was, ‘But you know that costs a lot of money’. And I thought that was the most stupid expression possible for a psychologist … So I didn’t take him, but I didn’t find a second one and we needed one … very very much.“ |