Table 2.

Themes Identified From Patients and Caregivers’ Experience and Perception of Sleep Disturbance With Exemplary Quotations

Themes	Sub-themes	Exemplar quotes
Description and patterns of sleep disturbance	Patterns of sleep (poor, good, changed)	I can’t sleep in the nights [ . . . ] I don’t have too much trouble falling asleep at night but I wake up at midnight, two o’clock and I often spend a long time trying to get back to sleep. [ . . . ] I’d wake up too early as well. (Pt 4) I stay up for an hour or two and then lay down and I’ll be in sleep again five minutes and then I’m awake again in five minutes, sort of thing. (Cr 8) Ah, a lot of times I’d love to sleep in little bit later, but I can’t, my body just doesn’t want to sleep in, I just wake up because I’ve headache and I want to stay in bed, and sometimes I just do have to because I’m not feeling 100%, but generally, nah . . . I wake up tired. (Pt 17) well, much the same as normal, except that I do go to bed a little bit earlier, because I get tired a little earlier. (Pt 18)
	Sleep was influenced by multiple factors	I’d still go to sleep because I was exhausted from doing everything during the day. [ . . . ] sometimes when you get into bed at night-time, your legs just constantly ache. So sometimes that will keep me awake. (Cr 10) I always just try to make myself as tired as I can, and then hopefully when I do go to bed, I get maybe 4 or 5 hours during the whole night. If I’m lucky. (Pt 9) I have had tingling feet, extremities really, that has a time if you wake at night, getting quite strong cramps in my leg and hands. (Pt 22)
	Caregiver burden affecting sleep	I’m constantly on the job looking after him so it’s very tiring, and sometimes I get very tired and cranky in the evening, so sometimes that affects my sleep pattern. (Cr 20) Only in that I have to be alert to what’s going on, particularly when he used to have seizures quite frequently, so I used to listen out for any movements in the bed, while we were sleeping. (Cr 20) I’m back to how I used to be when my children were young—you sort of sleep with one ear open. [ . . . ] because I’ve got to do everything, like he used to share all the household chores and things like that, so usually by the end of the day I’m really, really tired. (Cr 18)
Secondary SD due to psychological distress or anxiety	Underlying worry about cancer	The fact that I am dying, I found it a bit confronting at times, you know. So, there’s always a level of anxiety and worry and which is better on some days and worse on others. (Pt 22) I never, never ever had trouble sleeping. And since all this happened, I just I can’t sleep because I’m concerned. [ . . . ] When I start thinking about it again, it pulls me down again . . . it’s a big burden that we’re carrying both of us. (Cr 5) So I’m constantly on a level where I’m thinking—what’s going to happen next? And this sickness, this cancer, causes that too, because you don’t know what’s around the corner. (Cr 17)
	Stress	You’re paying for parking, medications, and private health cover. You always seem to be paying for things and it all adds up to stress and stops you from sleeping [ . . . ] Medicare don’t cover most of that, [ . . . ] I mean she got $1000 worth of bills, which was unexpected, all because of the reaction to the treatment. [ . . . ] And in the background, it’s always there. (Cr 17) Because work could be a bit stressful at time. You have things like that in your mind, which of course doesn’t help when you try to rest [ . . . ] it just keeps you awake at night. (Pt 2)
	Overthinking at night; “overactive brain”	I’ve just got an overactive brain, and I think of everything else. Trying to solve the world and it doesn’t help. You can’t relax. [ . . . ] And I don’t know how to switch it off. You know, they don’t have a light switch that you can flick off (laughs). (Pt 24) Mostly if I can’t sleep at night and I am anxious then obviously I think the worst about everything and I get depressed, you know [ . . . ] if you are lying there thinking all night, then you start to imagine worst. (Pt 22) Everything starts going through my mind about the next day [ . . . ] then I have trouble switching off. It’s the planning, [ . . . ] that starts from the time I’m making sure he[patient]’s organised with what he needs to take, [ . . . ] transport for him to some things. [ . . . ] Like foreboding, like something is going to happen. (Cr 16)
Perception of impact of cancer and treatment on sleep	Caregiver’s sleep is affected during the early stage of diagnosis	At the earlier stages of his illness it was very disturbing. But we’ve sort of grown into this new lifestyle, and come to accept that this is the way we live now, and that’s calmed me down quite a bit, so I sleep better now. (Cr 20) when PATIENT first became ill, my sleep patterns did change a bit when he was in hospital [ . . . ] initially, trying to work out what the problem was [ . . . ] Like there was new information every day [ . . . ] I’d say the first few weeks it did affect my sleep because you were worrying, what’s going on, what is it, something’s causing it. (Cr 10)
	Impact of cancer treatment causing or worsening sleep disturbance	The only sleep difficulties I have had, is when I’ve been on steroids for my brain tumor, and then I couldn’t sleep. That’s the only time. During the day, I’d try to have a sleep, but I couldn’t, I was so high all the time. (Pt 8) Oh it’s just harder to go to sleep. [ . . . ] I always wake up, I wake up, I lay there for a while, just thinking. Because my mind, my body is tired, but my mind is wide awake. [ . . . ] just with all the medications that I’ve been on, because I’m taking medications for pain and then steroids and anti-seizure drugs, there’s just something to relieve the pain and then there’s something to keep you awake, so the body’s just fighting itself. (Pt 9) I’m sleeping alright, especially when I stopped the chemo. Now for two or three weeks I’m off these things, I’m fine. (Pt 15)
	Indirect effects of cancer treatment on sleep	I try and have a nap, well, I don’t always have a nap, but I do get very tired in the afternoon and I’d say it’s due to the chemo, because that makes you unwell. [ . . . ] and it lingers afterwards as well like sleep wise. I just feel really um . . . tired a lot. (Pt 5) when I haven’t quite got the balance of dexamethasone right, I was extremely, extremely irritable, like unreasonable to [caregiver], unreasonable to the dog and basically ready to lose my temper at moment’s notice, but [caregiver] tells me that I improved since then. (Pt 22)
Perception or experience with seeking medical help for sleep disturbance	Participant not actively seeking help for sleep	I probably should go and talk to somebody about it, but I have a different GP to [patient], so I probably need to go and see my GP, but it’s time factors and things. (Cr 16) I think I sort of shrugged it off. I suppose [ . . . ] occasionally I used to mention it, and they weren’t really concerned about it. (Pt 24)
	Unwilling to take supportive care medications	I didn’t want it, I didn’t want to become reliant on them, I wanted to be able to sleep on my own. (Pt 13) I’ve been to the doctor and he has given me, what’s it called, melatonin is it? [ . . . ] which I think helps me fall asleep faster, but it doesn’t seem to let me sleep all the way through. I’ve been unable to sleep all the way through now for some years. (Cr 8) No, I don’t want the tablets to sleep. I got enough, enough with the treatment at the moment. (Pt 11)
	Willing to seek help from health professionals for sleep problem in the future	If it was affecting my life long term, like day after day, week-in week-out, month-in month-out, I think it would get to a point where I’d look into what the problem was or something to help me sleep. [ . . . ] Just the GP I suppose. (Pt 12) if I sort of had an ongoing thing that was really stopping me from sleeping, I would talk to my GP about it. [ . . . ] I guess if it created a pattern [ . . . ] gone through a week without a good sleep . . . (Cr 18)
	Interventions provided by health professionals	Looking at the dosage of dexamethasone has been the main, has been the main thing, so getting that balance right. (Pt 22)
Belief about sleep and impact on health and functioning	Sleep knowledge and sleep hygiene	it would be don’t take computer bed, don’t put the TV on when you go to bed, because it’s stimulating my mind and I should be winding down. Sleep harm, that’s what it’s called. (Pt 17) Whatever you call your body rhythms all that [ . . . ] you try to hopefully go to bed about the same time and get up about the same time so you’re in the regular pattern. (Pt 2) I think having a positive outlook to life—and even now I’ve still got a positive outlook, I’ve got no idea what my prognosis is. (Pt 18)
	Belief about impact of lack of sleep on health and functioning	Well it affects me, because like yesterday, I was tired. We went to the shops for little of walk, I said [CAREGIVER] I can’t. I’m way too tired, [ . . . ] So we went home. If I had, if it wasn’t something like that, I probably walked a bit longer. (Pt 5) I think it’s important as a caregiver that you do get sleep, because if the caregiver becomes ill themselves, who is going to look after the patient. So I think it’s very important that the caregiver gets enough sleep. [ . . . ] if you’re a caregiver and you’re not getting the amount of sleep you need, that can impact on your health, which then impacts upon the person you’re caring for. (Cr 10) I probably think, “oh I wish I could just lie down and go to sleep,” but it’s not something I do. I just sometimes think it’d be nice to have some quiet time, probably, even just to close the eyes for a while. Some self-time, I suppose. (Cr 16)
	Belief about quality sleep	I’d love eight hours uninterrupted straight sleep every night. (Pt 17) hopefully have a minimum seven or eight hours of resting sleep really. That would be my dream to be able to do that at least a few days a week anyway. (Pt 2)
	Participants talk about sleep disturbance but try to minimize its impact	Often, I must admit, these days I wake up and I feel “Oh is it the end of the night already?” that’s how I feel. [ . . . ] I’d like to not have to get out of bed and get up (laughs) but I’ve got stuff on, so most days I just get up and getting moving, get on with it. As you do. (Cr 16) I’m at that point where I cope, and I just get on with it. You do. I guess I probably out of a week I would have a couple of nights of fairly sound sleep, which gets me through the week. [ . . . ] Not like a major, major issue for me. It’s frustrating as much as anything. It’s still stressful, it’s still always there, but you learn to deal with it. (Pt 9) It’s expected I guess, obviously my wife’s not going to be normal so I’m just coping day to day trying the best I can. [ . . . ] I’m not complaining. PATIENT’s been tired obviously . . . But that’s okay at least well, she’s here. I’m not complaining, that’s okay. We are adjusting. (Cr 5) Yeah, it’s all part of it, I don’t have a good sleep. And the way my situation is at the moment, it probably doesn’t help. But I’m working with it. (Pt 24)
Coping and strategies to improve sleep	Helpful strategies	I believe in God, so I have faith and then I just say a few prayers and then hopefully fall asleep. (Pt 5) I just do like some breathing techniques to not worry about it. Or just try to think of something different that’s not actually that important. And then I tend to drift off. (Pt 6) when I’m feeling overwhelmed some days I practice some mindfulness and stop trying to think ahead and come back to the now and that’s calming, that really helps that. (Cr 16) No, just lay there and try to, I wouldn’t say meditate, but slow down, just try to slow down. (Pt 23) Sometimes, I’d have a Panadol and that would just calm me, or I could go to sleep. (Pt 8)
	Strategies not deemed helpful	I am thinking about trying to get back to sleep [ . . . ] I watch, tend to check that clock and see, how many hours do I have before . . . to get, actually wake up. (Pt 17) If I can’t sleep. If I get up and have a bowl of cereal, that tends to get me back to sleep. Like, if I ever have trouble sleeping because I’m thinking about something whatever, food tends to help me. A full tummy tends to help me get back to sleep, I find. (Pt 12)
	Distracting from thinking	Yeah, I’ve counted sheep or all sorts of things. I’ve tried all of that (Pt 17) I think about things that I like to do. Like travelling or being able to get my driver’s license back? Things like that. (Pt 2)

Abbreviations: Pt, patient; Cr, caregiver; Dex, dexamethasone.