Table 3.
Theme | Exemplar quote |
---|---|
Themes Related to Intervention Participation | |
Enhanced problem-solving | “I think the steps in...decision making and communication...it was most helpful dealing with my husband and the problem I was having with, you know, juggling between him and an oncologist, and what my needs were and how needy he was....” (P14 Intervention; GI) |
Better coping | “I thought, number one, there's a listing in the back (of “Charting your Course”) that gives you a lot of outside organizations that can help or give you information....Also, some of the things to help you think through, for example, if you're diagnosed with an end stage illness, what should you be thinking about, what do you think you ought to be doing right now in preparation?” (P23 Intervention; Lung) |
Feeling empowered | “She's (nurse educator) given me that nudge when I've had some problems. I'll go back to the doctor and talk with him or something like that. “(P24 Intervention; GU) |
Feeling supported, reassured, and hopeful | “It's been a supportive mechanism, you know, because, for example, when the nurse and I would talk on the phone, she knew what was going on with me. It wasn't like I had to explain everything, so that was very supportive.” (P23 Intervention; Lung) |
Themes Related to Trial Participation | |
Helping future patients and contributing to science (altruism) | “I believe that when somebody, for example in my situation, finds out you have a terminal disease, yeah, it's rocky and it's emotional, but my thought was, if the study would help other people, that's a good thing.”P23 Intervention; Lung “Well, I guess my attitude is that, um, knowledge is power. The more that the scientists and the doctors know, the sooner there is going to be a cure, or there is going to be a treatment that is going to prolong somebody's life.” (P3 Intervention; Breast) |
Completing questionnaires provided insights into condition and emotions | “I felt in some way, like somebody was hearing my individual situation. It, it was interesting to fill it out. It was sort of like, you know, instead of keeping a diary... ‘How has your last week actually been?’ Well, it's sort of nice to sit down and think about it.” (P14 Intervention; GI) |
Trial/Intervention Aspects to Improve | Control patient disappointment: “I was hoping that it would give me some support and, uh, I don't really feel that it has.” (P28 Control; Breast) Shared medical appointment not well-attended: “I was the only one there though...I'm interested in joining groups like that, or participating in groups like that, it tends to, particularly the groups in around here, a lot of people don't show up...If it doesn't seem like there's enough people, it doesn't really make sense to me to, you know, to participate” (P5 Intervention; Breast) Didn't apply to me: “Actually up until a couple of months ago, a lot of the stuff that was in the book that I was given, it wasn't even appropriate. I mean, it wasn't necessary for me...at first I couldn't relate to a lot of the stuff.” (P17 Intervention; GI) Reminded me about illness “I did sort of let go for a while on participation, and it was more because I was having too much fun, and I didn't want to be a patient that day. I don't want to be a patient every day of my life. And, so the less time I have with the medical profession, the more I feel like a normal person.” (P14 Intervention; GI) |