Category/ subcategory | Excerpt (patient participants are italicized) |
---|---|
1. NOTHING TO LOSE (core category) | ‘I didn’t want to say too much. I told them (family) I’m going on a drug trial. But that’s where it stops. I said, “They offered me a drug trial. I have nothing to lose.” And they says, “Well that’s all right, go ahead, do what you need to do.” (P06) ‘I’m not gonna commit to 2 years of the rest of my life to that.’ (P07 – trail decliner) ‘I think if people didn’t think, or didn’t hope that they would get life extension, no matter how well we brief them, I doubt they would actually take part in Phase I trials.’ (HcP01) |
1.a Just want to live (subcategory) | ‘When it comes to dying or anything there’s no way, like my own view is I’m too miserable to die. I’ve too much to do and I’ve a whole lot of things more that I haven’t had any time for dying.’ (P10) |
1.b Maintaining hope (Subcategory) | ‘We ourselves are going to be hopeful that it is [the trial] going to bring some benefit. Even for Phase I studies, it is highly unlikely that you would be in a situation and caring for somebody and just thinking ...you know, you do feel that there is a possibility of individual benefit. You want that to work for them. We are delivering this in a caring therapeutic setting.’ (HcP18) |
2. TRUSTING RELATIONSHIP (Category) | “It’s all mind games in this disease, it feels like he is a friend in a sense because he is the one who is going to treat me for this disease … he’s the one that is working to make things better for me.” (P01) ‘We didn’t know really whether it would be a good or bad thing. We just wanted to talk to [GP] - somebody with more experience about it.’ (P03 - trail decliner) ‘I know that it is sometimes a scary position to be in, to be the trusted doctor, especially if you have been looking after them for a number of years, they will do anything you ask them.’ (HcP10) |
2.a Feel lucky (Subcategory) | ‘She [clinical research nurse] says, “You will be coming up more often”, which is what I want. I want to get a bit more attention. “You’ll be treated like a VIP” she says. I went, “That’s fine.” (P06) |
2.b Personalised Care (Subcategory) | ‘My view is that the best quality care that I can provide for a patient is through consideration for clinical trials. They drive high quality care. They may not provide the answer but in the process of doing it, they provide a very strong methodological framework to carry out high quality clinical care. So my commitment to patients is to carry out the best care I possibly can.’ (HcP06) |
3. FIGHTING CANCER (Category) | ‘Now it’s just a matter of ‘here we go again’. It’s just the circle of life. It’s part of my life and cancer is a big part of my life. But dying is not part of my life... So, fighting the cancer is just what I have to do.’ (P15) “These patients would grab anything to fight this disease.” (HcP02) |
3a.Self concern (Subcategory) | ‘Well I am being totally selfish in my trial... Because the part of the trial that might help people in the future, I don’t really care at this stage, I just want to live myself. I’m not in a situation to start thinking about other people’s cures in the future. I need my own treatment now.’ (P14) |
3b. Altruistic Motivation (Subcategory) | ‘Most people still ultimately – they may tell themselves they are only doing it for altruistic reasons, but I think ultimately most people are doing it because they think it is the best thing for them. But the altruism still weighs very, very highly for them. I think there are a few individuals who just say, “Well I’ve got two options. I can have treatment, or I can have treatment which is going to help other people more, so I am going to do that.” (HcP06) |