| | Theme | Subtheme | Illustrative quotes |
| | Emotional support | Opportunities to talk | (i) “I think just to be able to talk it out, reassurance. I think people need to talk” –IC3 (aged 78, mother)
(ii) “I’m quite an open person that would rather speak about it than bottle it up, but [patient] is the opposite. She’s quite deep and we didn’t talk about it too much, so I just tried to get it off my chest with folk that was closest to me.” –IC22 (aged 57, Husband)
(iii) “[My friends] couldn’t physically help me, but they would just listen. Sometimes you just want to talk about it and get it off your chest.” –IC6 (aged 50, sister)
(iv) “It’s the people who will just let me talk and not try and fix me. That’s who I want… I’ve got a friend who’s really good and she just says, “That’s crap,” which is great but most people don’t so it’s just not worth it.” –IC7 (aged 53, wife)
(v) “I’m sure it helped to have friends and neighbours to talk to and just go over things with…that allowed me to be calmer and more supportive” –IC13 (aged 51, husband)
(vi) “There is just one person that used to be my line manager and I have to tell him that my wife had cancer and that developed into a very good friendship. He’s one of the few that I actually can sit down, have a beer and say, “Look, this is what I’m going through right now”” –IC21 (aged 36, husband)
(vii) “You can do that on the carers’ group, but unfortunately, about that, you end up reading too much about the bad stuff that’s happening to people who are, you know, three months from death, or a day from death. Because, obviously, they need to vent and it comes out.” –IC10 (aged 59, wife) | | Understanding from others | (i) “We started going back out having a drink and it wasn’t the focus of the conversation. It was a known thing. It wasn’t an elephant in the room.” –IC12 (aged 66, wife)
(ii) “The small number of friends that I have they understand and they are very supportive and a few of them work in the medical field, so they know what’s going on anyway, which helps, yes.” –IC23 (aged 56, husband)
(iii) “I think people assume that he’s fine now and it’s really infuriating. Even close friends think he’s fine and he’s not. It’s not like somebody has a broken leg and they get a pin put in. It’s never going to go away.” –IC14 (aged 37, wife)
(iv) “I don’t think they realise how much he’s impacted by his condition. And because I think it’s like an invisible disability” –IC15 (aged 44, wife) | | Being there | (i) “I think with the support of her family and her friends and also for us with our family and friends you pick up and get on with life.” –IC3 (aged 78, mother)
(ii) “I’ve got a really good group of friends here, a lot to do with having kids and taking them to nursery, you get hooked in with a group of women that are really supportive.” –IC18 (aged 48, wife)
(iii) “My work were texting me all the time, “how are things? are you okay? do you want somebody there with you?” just that caring.” –IC2 (aged 55, wife)
(iv) “They’d send me texts in the week or something. I occasionally have phone calls with one or two of them that I’m maybe the closest to. So there’s one particular person. It was an outlet for me” –IC8 (aged 68, mother) |
| | Instrumental support | Opportunities for relief | (i) “They would take [child] and [child] overnight…his mum will take a load of ironing away and come back and have it all done. So, that’s lovely.” –IC15 (aged 44, wife)
(ii) “Various friends have offered, “look, if you ever need somebody to sit with [patient] and you go out for the afternoon, just pick up the phone,” which is lovely.” –IC24 (aged 67, husband)
(iii) “My mum paid our rent for three months and [patient]’s mum didn’t offer but it was put to her to help and she did which we’re forever grateful for that. We didn’t have to worry about rent for six months.” –IC14 (aged 37, wife)
(iv) “I’ve got a friend who lives in Scotland and a friend who moved to Italy a few years ago. They’re my best care. They’re where i go to escape and i just go and stay there for a few days and I get completely looked after.” –IC7 (aged 53, wife)
(v) “Socialisation i suppose, just getting out and being able to talk about something different and just having a break from that. It sounds awful but just having a break away from [patient] and the house and just being able to go and be normal” –IC19 (aged 54, wife) |
| | Information support | Information from network contacts | (i) “My sister’s a [job role], and it’s her job to help people in [patient]’s situation…so if I needed knowledge I’d get it from her.” –IC10 (aged 59, wife)
(ii) “One of my sons is very good at looking up… information. He suggested a couple of things to [patient]… to do with new treatments that are available for treating brain tumours.” –IC12 (aged 66, wife)
(iii) “I do the leg work of the research along with his family actually because they are very keen on being involved in that side.” –IC18 (aged 48, wife)
(iv) “[Patient] started doing walk and football. And it was actually his mum and dad that got him into that. And he really loved that because they were going as well” –IC15 (aged 44, wife)
(v) “It was a friend’s husband was senior person in a union and he stepped in. Only then we wrote to the employer with all the things they hadn’t done…at that point [patient] changed line managers and changed roles and things settled down.” –IC2 (aged 55, wife) | | Information from support groups | (i) “We actually met at the Maggie’s centre. We were both doing the stress group on how to relieve your stress…there was about six of us in the group and we’ve all stayed in touch” –IC19 (aged 54, wife)
(ii) “[One support group was] really good… because we got a lot of support or just you could ask questions. And we would get a response and support around that. So, that was a good source of support when he was first diagnosed.” –IC15 (aged 44, wife)
(iii) “A conference for people with [patient]’s type of brain tumours. That was really excellent. So we went along to that. Only by meeting people with the same issues as [patient] and [patient] was talking about the fact that he had a bus pass that he could get access to work and all the people there that we were talking to had no idea about that.” –IC2 (aged 55, wife) |
| | Appraisal support | Comparisons with similar others | (i) “But I think one of my friends, her mum had cancer and she just passed away this year and my other friend, she lost her dad. So, we’ve had quite a few good conversations over the last couple of months. But it’s just hard.” –IC15 (aged 44, wife)
(ii) “My dad had an aneurism that burst and he nearly died… My mum has got a habit of saying… “I know exactly what you’re going through.” I had to sit her down and say, “Mum, you don’t because what happened with my dad… He’s lived to tell the tale. That’s not going to happen with [patient]. This is going to take his life.”” –IC14 (aged 37, wife)
(iii) “To be able to see… that he has come off quite well… by comparison to other people” –IC5 (aged 64, wife)
(iv) “I feel quite jealous of those people. I’ve met a couple of them in the hospital with [patient]… The impact [on us] is so significant, where life has changed so much that you are thinking, “why us?” you know, you’re thinking, “how did this happen so badly?”” –IC1 (aged 38, wife)
(v) “Sometimes, when it pings up on my phone, I don’t look, because I don’t want to hear any more negatives today. Other days, when I feel a bit stronger, I read it and then I’ll try and put some supportive things on, and help them.” –IC10 (aged 59, wife)
(vi) “Meeting up with a load of people whose partners are all about to die would potentially be pretty depressing and that’s maybe not the best thing.” –IC13 (aged 51, husband) | | Health surveillance | (i) “My dad is often here helping to look after him, pretending he’s doing a bit of work in the house but he’s really keeping an eye on him for me if I’m at work.” –IC14 (aged 37, wife)
(ii) “I think I’ve coped okay. Well my friends tell me that I have coped okay with it. Yes, I’d say that really.” –IC12 (aged 66, wife)
(iii) “The argumentative bit where it’s his sister who will let me know because his friends normally tell his sister and she’ll let me know. She will quite often be there and has witnessed it…It’s not that often but yes, so she’s raised that with me in the past. She’s aware of it so she will tell him now herself as well.” –IC2 (aged 55, wife)
(iv) “I’d be managing toddler, baby, and supporting [patient]…I was, like, sort of hyper and ahead of everybody. I can’t explain that properly. But my mum was like, “You need to calm down. What’s going on with you?”… It made me realise, actually, this isn’t all [patient], this is me as well.” –IC15 (aged 44, wife) |
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