shows the themes discussed by the participants.
Themes Discussed During Focus Groups, Overall and By Group (N = 67)
Participants in nearly all of the focus groups described attributes of sleep, such as onset or falling asleep (8/10 groups), duration and timing of sleep (9/10 groups), continuity or staying asleep (9/10 groups), offset or waking in the morning (6/10 groups), and napping (10/10 groups). A main consideration with regard to napping was the demand of one’s daily schedule. For example, several participants in active treatment observed that on a busy day they did not feel fatigued, but on a day off with nothing to do they collapsed and had to take a nap. Others described how being retired or on disability-related leave allowed them to nap whenever they felt tired, which made a lack of continuous nighttime sleep less bothersome.
Causes of Poor Sleep
Contributors to poor sleep were a prominent theme of the focus group discussions. Among the many symptoms participants described as causes of poor sleep, a major theme mentioned in all 10 groups was difficulty with temperature regulation, usually hot flashes or night sweats. As one participant in treatment for a hematological cancer described,
My sleep was affected a great deal by night sweats. In fact, in a lot of ways, I think of that as being the worst part of it…. When I was told after my 3-month check that my bone marrow biopsy revealed some cancer still and that I may have to do other things associated with getting better again, all I could think about was if I was going to get those night sweats again. Those are really terrible. I would wake up sometimes 3 times a night… [with my] shirt completely soaking wet—it’s just the worst. Sheets soaking wet, pillowcase wet. So that really affected my sleep.
Constraints on sleep positioning were mentioned frequently (7/10 groups). Problems with sleep positioning were related to medical devices (e.g., ostomies and ports as reported in the breast, colorectal, and other groups), surgical scars or radiation burns (reported in the breast group), and difficulty breathing (reported in the lung group). Two participants with lung cancer (1 in treatment, 1 in follow-up) described frustration with having to remain in an upright position and thus not being able to get comfortable enough to sleep well.
Worry or fear related to diagnosis, prognosis, or recurrence was another major theme (9/10 groups). Participants described being unable to fall asleep because of these concerns. One participant said, “I think at the beginning it just haunted me, and I wasn't able to sleep at all. I was very worried and up all night.” Others found themselves waking repeatedly during the night, such as a participant with prostate cancer who said, “I would say that maybe once a week I’d wake up at 1:00 [a.m.] or 3:00 [a.m.], thinking, ‘I have cancer.’” A participant with lung cancer shared,
I think it was more psychological, ‘cause I haven’t had to take any chemo or radiation so I don’t know what the effects of that would be. This psychological thing, once they tell you you’ve got cancer, it is like a death sentence. Your mind goes to playing tricks on you, and it is devastating, and it is hard to overcome.
Another component was worry related to upcoming doctor appointments and whether a recurrence would be discovered.
Changes in dreams (i.e., increased number, more vivid dreams, nightmares) were attributed to cancer or its treatments and blamed for disrupting sleep by participants in 6 of the 10 focus groups. Apnea and periodic limb movements were also discussed in 4 of the 10 groups. Two participants in treatment for breast cancer described problems with movement suggestive of restless leg syndrome. One said, “You have an urge to move. So when you are trying to go to sleep and you are always having an urge to move, you are not going to go to sleep.”
Impairment in daytime functioning as a consequence of poor sleep was a universal theme. Daytime sleepiness was discussed in all 10 groups and fatigue (by name) in 9 of the 10 groups. The concepts overlapped for many participants, though not all. Some participants described daytime sleepiness and feeling tired. A participant in treatment for breast cancer said, “I find that I’m just being tired generally, even if I slept for 12 hours. I still wake up and I’m tired. I’m kind of sleepy all the time.” Other participants described impairment in daytime function as fatigue: “Fatigue is the big thing. I’m tired all the time…. I take naps during the day, you know, I just don’t have the energy not to take them.” A few participants distinguished fatigue from daytime sleepiness, linking fatigue with anemia, such as a participant with breast cancer who said, “I find fatigue and sleepiness are different. I don’t find them to be the same. I can sleep all I want and still be fatigued because my red blood cells were down.”
Other types of daytime impairment, including social, functional, and mood-related consequences of poor sleep, were also mentioned frequently (7 of 10 groups). For example, some participants had to become more flexible with their social engagements, such as a participant in treatment for breast cancer who said, “I find that I have to cancel things a lot or rearrange my schedule…because I’m too tired or I sleep too late.” Changes in relationships with friends and family were also described, “we go to visit friends, and sometimes I’ll sit in the chair and go to sleep, so I think it’s made a big change in relationships.”
Changes in the capacity for activities that involve sustained mental concentration, such as driving and working, were also identified as themes of altered sleep-wake functioning. One participant in treatment for colorectal cancer said, “When I take that pain medication, I could be sitting at a stop light and go to sleep.” Problems with work were mentioned. A participant in treatment for breast cancer said, “Ativan [lorazepam, a sedative] almost got me fired though. Because I finally took it about 3:00 [a.m.]… then at 3:00 p.m., I’m waking up. I’m like, ‘Oh, my God. I haven’t called work.’”
Finally, mood disturbance as a result of altered sleep-wake functioning was another theme. One participant in posttreatment follow-up said she gets “pouty” after inadequate sleep. She asked, “Does anyone else get pouty if you only get 3 or 4 hours?” Another participant responded, “I get crabby,” and a third said, “I think my judgments aren’t as good.”
Other themes included beliefs about sleep, variations in sleep problems related to particular treatment cycles, the persistence of sleep problems after treatment has ended, and managing problems with sleep.
Belief in the importance of sleep in controlling cancer and recovery from treatment was common (9/10 groups). A participant in treatment for lung cancer described sleep as important because “if you’re not getting your rest, your body’s going to be more and more run down, the more run down your body is, the more disease is going to be able to function and root.” A participant with breast cancer said, “You have to find some way to make us sleep so that we can heal…. You probably won’t beat the disease unless you get the required amount of sleep.”
Many participants in treatment discussed variations in sleep problems related to their treatments. Participants undergoing chemotherapy reported that their sleep cycle and energy level followed a pattern that varied with the chemotherapy cycle, such as a cycle of hypersomnia and then insomnia after chemotherapy. Patients reported being unable to sleep while taking steroids. Night sweats, hot flashes, and vivid dreams were attributed to medications by some (e.g., participants on hormonal therapy for breast or prostate cancer). Patients with breast cancer who were treated with aromatase inhibitors and those treated for anemia or neutropenia reported difficulty falling asleep due to joint, muscle, or bone pain and waking with pain.
Participants reported that sleep problems at diagnosis and during treatment made it difficult to maintain a healthy sleep cycle, which leads to later sleep difficulties. Although sleep returned to normal for many after treatment, others found that sleep problems did not go away. They reported needing more sleep, napping more, having greater difficulty if sleep was missed, having more disrupted sleep, and experiencing more vivid dreams since treatment. One patient said, “I have not, since diagnosis, slept—not like I did prior to, even without the chemo.” Another said, “I still probably, after years off [treatment], sleep about an hour or 2 more than I used to.” Participants also discussed difficulty reading body signals, making it more difficult to know when rest is needed. Even after being “cancer-free,” participants reported sleep disturbances related to emotions and thoughts prior to follow-up tests, before doctor appointments, after experiencing a new unexplained physical symptom, and when hearing or thinking about a friend or family member with cancer. As one participant described,
But on the nights that I wake up, or I can’t get back to sleep, my mind just—it starts rolling. And the more it rolls, the more I’m convinced that the reason I can’t sleep is because cancer is coming back, and so I have to just—I have to find some way to shut off my mind, because the more I think about it, the more I’m convinced that, you know, it’s coming back.
Discussions of ways to manage sleep problems were frequent and included prescription medications (7/10 groups), over-the-counter medications (2/10 groups), and other strategies (9/10 groups), such as watching television, daily exercise, dietary adjustments (e.g., low sodium), reading, prayer or meditation, making a list before bed of what needs to be done the next day, or using special pillows to aid sleep positioning.