Table 3 Thematic analysis of end-of-study patient (n = 17) interviews

 Manageability

a) Normalized experience

“The nurse telephone support was crucial, because if I had a question or thought it was a weird symptom or something unusual I could talk to her’. I think the talking it out with her and realizing what I thought was maybe not manageable was manageable” (1-005).

“You do not know is this how I am supposed to be feeling? … Is it normal to feel this way? So by having confirmation, by speaking and reassurance from the study nurse, it did help” (2-054)

b) Confidence for self-care

“After talking to her, I was most confident, I felt so relieved, I feel so comfortable after talking to her”. (2-027).

“After the nurse talked to me, I was so sure of myself that I was going to be just fine, that I did not have to worry about anything.” (2-033).

c) Expert personalized advice

“I live alone. And you, here’s somebody who is concerned about you, who knows my disease, this nurse knew my disease. And, when she gave me any advice it was so helpful. It was like medicine, taking some medicine to relax, to relieve my problem. That’s so helpful, really.” (2-027)

“Having somebody that you can call to say, “Is this normal, I have got this problem, what should I do, who can also give you better advice than just, you know, on the back of a package’. This is not working for me. How am I going to make this work? She gave me really good suggestions. It makes you know you can deal with it. Otherwise you feel like you are flying blind. And that’s kind of scary when you do not feel so good” (2-004).

 Feeling safe

a) No need to panic

“She would assure you it was normal, so, you know, there is no need to panic over anything”. (2-040)

“So it feels like you are safe because somebody’s asking about you, like somebody from the hospital is calling and saying okay. So I knew … I knew that they were all taking care of me.” (2-033)

b) A lifeline, not on your own

“Just overall knowing that, like I said, that she was checking, that I could rely on her to call. If I had any questions or concerns that on a regular basis, I’d be talking to her.” (1-005)

“I think knowing that I had a nurse call coming gave me peace of mind.” (2-056).

“I could confidently talk to her about what really needed to be addressed, I guess … I found her almost like a lifeline to me some days. I just felt very confident”. (1-014)