Table 3

Supporting quotes from participants about environmental-level factors

Family and social circlesFamily environmentNegative: “I’m just not very close to them, so it was quite strange to have bring them to something and they don’t talk to each other. They said that I needed to bring them both, and at the time it was almost extra stressful having to bring them.”
Positive: “I would say, out of everything, it’s brought us closer. The impact has been far more positive than negative, because I think everyone just values life a bit more now.”
Peers and friendsNegative: “I feel a slight disconnect with my friends, and it’s hard because you can’t just kind of slot back in…. It’s just a sense of feeling so disconnected because my problems are just different and it’s not relatable.(…)It’s hard for my friends to see me sick, and it’s hard for them to see me really suffering.”
Positive: “Quite a few of my mates had all arranged a big charity bike ride for me and they’d arranged it at this time because that was when it was going to fit in with my surgery, you see, and before I started my chemo again.”
Medical team and caretakersLearning the diagnosisNegative: “I actually got told over the phone. I found it just really shocking…. Yes, to have it through a phone call, it was a bit, I don't know, strange to be told that through a phone call, really.”
Ambivalent: “It was a bit conflicting because obviously it’s not something that you expect to hear, and it’s not something you want to hear, but at the same time it was kind of nice to know that I wasn’t crazy.”
Relationship with the medical team “I do have quite a good relationship with Dr.(…)I trust that he’ll tell me what he thinks is the best thing for me to do.”
Interim feedback “There’s actually been a small reduction in size in my largest mass and everything else has stayed perfectly stable. There’s nothing else in my body so really, really pleased. My consultant’s very, very pleased with how everything’s working so it’s very, very positive.”
Specialty sarcoma and/or AYA care “I hear about people who don’t have a clinical nurse specialist and they don’t understand how important it is until you have one. You realise she does so much for us. She makes it easy. She knows when you don’t understand something. She’ll stay behind and explain things. When I had surgery, she travelled to the different hospitals, she came to see us. She looks after your family, friends, everything. Everyone knows her, but it’s the fact that she takes time to explain. She listens to you.”
Counselling or psychotherapyNegative: “One of the hospices arranged for some therapy, but I didn’t really get on with it very well, so I only went a couple of times… I just didn’t really like it, I found it made me feel more worried than less worried.”
Positive: “I did have some professional support at the very beginning. I had four or five sessions with a counsellor. Again, that was all done privately because I wasn’t offered anything on the NHS,(…). It was really useful to go and talk to somebody and just open up and explain everything to them. She gave me lots of advice and tips on how to deal with the days when I feel down.”
Healthcare system at largeProlonged route to diagnosis “So, I went to my GP about 1000 times, and they said I had growing pains and prescribed me diclofenac, which I took for a long time. Then because I couldn’t sleep because the pain was so bad, and I was trying to do my exams, my mum decided to send me privately.”
“Every time I went to the GP, they, kind of, still said, ‘Oh, look, you’re just doing a lot of overtime. You’re just standing on your legs a lot. It’s just, you’ve probably got a shin splint.”
Health system and treatment logistics “Travel can be quite hectic.(…)Yes, the thing is on the travel days it is about muscling through it, you know.”
Cancer support groupsNegative: “I did look on some sarcoma websites, but I found them quite depressing. A lot of people were sort of-, some people were not as successful as I’d been and I felt that I couldn’t relate to them because they were in a different situation to me, so I found that those forums didn’t really help because they were people offloading because they’d been dealt a bad card.”
Positive: “Yes, these support groups are fantastic because you can communicate with people the same age as you at any time.(…)They may have a very different cancer and be at a very different stage in their treatment or their journey but they understand because they’re the same and they have the same feelings and the same thoughts and the same worries. Those groups are priceless.”
  • AYA, adolescents and young adults; GP, general practitioner.