Table 2

Supporting quotes from participants about individual-level factors

Function—an individual’s physical or bodily functioning including psychological well-being and mental healthSide effects “I got the ulcers in my mouth a few times after my methotrexate, and the ulcers were quite bad. I’d probably go, like, 3 days without eating or drinking just because my mouth was so painful.”
Late effects “I found out a couple of months ago that the chemo has made me totally infertile, and so that has probably been the thing that I’ve struggle with the most out of everything.”
Mental health “I was on a lot of diazepam to try and help me sleep and just really get through those first few days(after diagnosis). I think I just cried probably for the first few weeks because I didn’t know what was going to happen. Nobody seemed to be giving me any indication as to what the next steps were…”
“I got put on the antidepressants. That was, kind of, the worst thing, how it affects you mentally. I just couldn’t even get out of bed.(…)Depression was that bad. That’s one of the worst side effects.”
Body imageNegative: “Losing my hair didn’t really bother me that much at the beginning. Towards the end it kind of did bother me. I got really tired of just looking like a cancer patient.”
Positive: “I think my physical condition, in terms of body, like, I’ve lost a lot of weight compared with, I think I’m 15 kg down pre-cancer, which I love and I take very much pride in the fact that I’m a lot fitter than I was…”
Guilt “The hardest thing is when you see how much pain and upset you caused other people(…). So that’s what I really struggle with today all the time. It’s horrible that you’ve ruined someone’s life for a year.”
Mortality “You’ve got your kids and your family, and you’ve got to work, because you need the money. In your head, you’re thinking, ‘I’m dying. I’m literally dying as I’m working.”
Activity—ability to carry out a task or an actionDependenceNegative: “I couldn’t do anything. So, during this time, my husband had to wash my feet, change my underwear and dress me.(…)I didn’t have a shower for 4 months, just stand-up washes because I didn’t want to get the dressings wet, and my husband had to wash my hair and do all the housework.”
Positive: “I had family around, but in terms of people helping me get dressed and everything, I didn’t need that.”
Participation—active engagement in one’s life and daily activities such as education or work, parenting, engagement in one’s care, and romantic relationships and intimacyPatient engagement in care “I think it’s still important to have an element of control and be involved in your decisions.(…)I’ve always had the final say, but I think it’s always important to feel as though you’re part of your treatment. So you know what’s going on, and you’re not, kind of, just letting it happen to you.”
Parent roleNegative: “It was really hard from things like-, so I had to stop breastfeeding.”
Positive:(interviewer): “Being able to see your daughter grow up as being something that has helped you throughout this period…”(participant): “Most definitely, yes.”
Romantic relationship and intimacyNegative: “(Partner) was essentially my carer throughout the whole treatment, because obviously she was there… and our relationship unfortunately fell apart after. We were made aware of this. They did say, ‘Look, after(cancer), people can change.”
Positive: “Sex life, basically that was non-existent for 9 months,(…)we’d have to spend quality time doing something else together, instead of duvet action, so we might watch a DVD or a TV programme, or play cards, and just make it a special quality time, doing something together.”
School and work disruption “I had a really good relationship with my manager, so it wasn’t hard to tell my manager about it. They were very supportive, you know, I obviously had to go for chemo almost immediately, so I had to leave work straight away, and I told them. They were very good, they offered to continue paying me until I come back, and stuff. They kept in touch with me, so that was really good.”
“I still did all my exams, and so I’ve had to work harder than anyone to make it up, and I feel really short changed that I’m only graduating with an ordinary degree, and I worry that it’s going to hold me back.”
Financial strainNegative: “I mean obviously when I got ill I was supporting myself via my student loans and my grant, and my part-time job, and that all ended obviously when I had to interrupt my studies, so they stopped paying me.”
Ambivalent: “Paying for taxis is not exactly cheap, so my friends help. My brothers help, obviously. They drive. My parents help and my colleagues help as well, so I wouldn’t say it’s dire if you know what I mean? It’s manageable.”
Lived experience—describes other factors that are pertinent in one’s participation and recoveryPrior experienceNegative: “Because my mum died of cancer, and having cancer now really kind of reopened a lot of my grief over that, because I just felt like I was reliving her history.”
Positive: “I have a genetic predisposition to cancer, and so it’s not my first cancer. In fact it’s not my first sarcoma. I know it might sound weird to say but to be honest since of(other medical condition) diagnosis I’ve kind of been waiting for osteosarcoma. Yes, I was just kind of-, well, kind of prepared.”
Illness triggersNegative: “Again, you get what I call shadowy pain where the tumour was, so I’ll get a sore shoulder or something and that, sort of, leans on your mind because it takes you back to the exact same symptom that gave away the fact that you had cancer originally.”
Positive: “Now my scar is extremely neat and tidy, even though it’s large. I think it reminds me that I’ve fought something and won, at the moment, and I’m still here.”
Information needs “(Interviewer) When you were with that first appointment where you received the diagnosis, she (Dr.) mentioned reconstructive surgery, at that time did you understand why she was talking about that? To be honest, I didn’t.(Interviewer): She just gave you the information? Yes. She didn’t really mention what it would entail. She just said, you know, they do great reconstructive surgery, so I’m, like, ‘Oh, okay. It sounds like I’m going to have to have surgery,’ but she didn’t go into detail about what the treatment would be.”
Obviously all the information’s bombarding, coming into you, so you can’t process it all.”
Added burden “I had moved to new jobs at the time. I was going through a break-up in a relationship at the time also which added to the problems, you see.”
“I mean, my mum used to be my best friend. Just after I got into remission, she had her cancer back again, and she passed.”