Table 5.
Phase 2 results
| Category/Sub-category | Representative Quotes & Participant Characteristics |
|---|---|
|
| |
| Pain-related catastrophizing is a pervasive phenomenon, often marked by… | |
| a. Spirals of mental stress and fear related to pain | “The mental stress [of pain] has been unbelievable.” -45 y.o., female, breast cancer, unknown religious/spiritual orientation |
| “[My doctor] says that he wanted me to be more and more focused on new pain. If my elbow starts to hurt and I haven’t done anything it’s reason to be concerned because that cancer cell could have split and gone to my elbow or the bone marrow there… that is probably the hardest part of the journey… I get into these pain spirals.” - Unknown age, male, prostate cancer, Christian | |
| “It’s, for me, very difficult to separate the pain from mental anguish from physical pain’cause when I’m in situations where I have a lotta stress, my body hurts. It’s really… all those things that go into what stress does to your body… Even just holding yourself too tight.” - 66 y.o., female, breast cancer, religious/spiritual orientation “N/A” | |
| b. Anger and frustration with pain and its impacts on quality of life | “The pain hurts, and it makes you angry. Sometimes it makes you sad. It’s just anger. Anger and fear. Fear comes from the anger, or anger comes from the fear. When is it gonna stop? Or is it ever gonna stop? Or am I gonna die before it stops? You know? I think that the most of all of it is just the fear.” - 60 y.o., female, breast cancer, Christian |
| “I just don’t have cancer. There’s so much pain affiliated with it. I try not to be a baby about it, but sometimes I just want to say, ‘Listen, people. I’m hurting today. Okay. I just can’t deal. I’m hurting.’”- 63 y.o. female, colorectal cancer, Christian | |
| c. Hopelessness in the face of pain | “Sometimes pain and other things can just be so bad that you just think—there was one point where I thought…’I think this is it for me’.” - 66 y.o., female, breast cancer, religious/spiritual orientation “N/A” |
| “I know pain, chronic pain especially… knowing that your disease is terminal and thinking you’re gonna live the rest of your life in this amount of pain or more, it’s just gonna get worse and worse, is terrible.” - 50 y.o., female, unknown cancer type, unknown religious/ spiritual orientation | |
| Spirituality can help patients transcend pain-related catastrophizing through… | |
| a. Inspiring faith and trust, serving as a motivation to continue amidst suffering | “When you have [pain] or anything like that, try and do whatever it is that makes you feel comfortable, but also realize that it’s not gonna be there forever. You just have to let go of it… let go and let God.”- 60 y.o., female, breast cancer, Christian |
| “It just takes so much mental toughness to say that I’m in pain, and I’m groggy, and I am backed up and bloated, and I’m still gonna get up, and I’m gonna walk. That I’m gonna walk up and down the hallway three times, this time. That’s the toughness it requires… [Tearfully]… Before I went into the surgery the second time, [my motivation] was family, and it was the number of things I had to live for. Better times… I am quite spiritual… To get up off the deck when every muscle in your body tells you to just lay back and chill… I believe that the spirituality will give you—will help motivate you.” - 62 y.o., male, stomach cancer, Christian | |
| “God’s always watching, and He’s always got his hand right there for you to reach out when you need it. That’s how that go, in my opinion.” - 60 y.o., male, prostate and bladder cancer, Christian | |
| “I’m a big control freak, not of other people but of my own self… This [cancer-related pain] has been an interesting journey into maybe you don’t have to know everything… It’s important to remember that there are things bigger than us in a very nonspecific way. I don’t have a God or a thing that I do to acknowledge that, but reminding myself periodically, ‘There are things that are bigger and smarter and more powerful than I am at play here’…. [Laughter] Like, “Okay, well this thing is here. This pain is here… Maybe I need to live with it for a little bit and see what that means for me.” - 47 y.o., female, “raised Christian, no current religious identity” | |
| b. Helping provide meaning and a wider perspective around pain | “There has been a lot of pain, but because I have tried so hard to be positive about everything, that God has kinda given me a gift of not emotionally feeling it as much as I could.” - 60 y.o., female, breast cancer, Christian |
| “When I’ve been in physical pain, I try not to focus on it. I try to focus on something that is brighter or sunnier… I recognize that it’s there… it hurt[s]… and I move on. I don’t let it be the [only] thing… I don’t let it control my day. I’ve been very fortunate.” - 63 y.o., female, breast cancer, “Earth Wisdom/spiritual” | |
| “This [cancer and pain] … as a spiritual journey… just feels like it’s just part of my life. My father died when he was 49. My mother died when she was 70. I’ve outlived both of my parents. I just feel very—mostly, I feel grateful that I have life… It’s great. I have medical insurance. I have enough money to live until I die. There are so many people who are just struggling for all that. I have physical pain. There’s times where I’m up half the night’cause I can’t get my legs to stop hurting. In the whole scheme of things, it’s manageable.” - 73 y.o, female, breast cancer, Quaker | |
| “Like when I went through the surgery… just to realize that I might be feeling the pain, but there’s other people in this world that feel a lot more pain that are a lot harder—a lot more hurtful than the pain that I’m feeling. I kind of try to turn it around.” - 60 y.o., female, breast cancer, Christian | |
| c. Offering emotional comfort through supportive beliefs and practices | “I don’t ‘meditate’ as a daily thing… One thing that I did do, I learned a technique called the release technique, which is basically whatever it is that you’re holding that is inside of you, that is bothering you, that is troubling you, annoying you, learning how to let those things go, release them, let ’em go…. That is the spirituality that I think has helped me deal with all of this stuff, deal with the pain.” - 72 y.o., male, bladder cancer, Agnostic/Atheist |
| “Well, if I have a bad night [with pain]… I pray that it’ll go away, but I pray His will be done, not mine… I just feel spiritually that He does help me through it… I pray, and I sort of meditate… They are helpful, and like at night, it’s wonderful because I can pray and go to sleep. And, you know, I don’t sleep real well.” - 90 y.o., female, lung, bone, and brain cancers, Christian | |
| “I believe that having that spirituality and the belief in that higher power helps me stay calm most of the time, helps me believe that there’s something more after this world. I find comfort in that and that everything somehow is gonna be okay in the end.” - 66 y.o., female, lung cancer, Christian | |
| “I try to get a sense of calm. It’s not as hard as it used to be when I used to get the panicky feeling… Thinking of things that are bigger than me and then just trying to remain calm, get through it, breathe through it, do what you can to make [the pain] better.” - 50 y.o., female, unknown cancer type, unknown religious/spiritual orientation | |
| Spirituality has real limitations in the context of certain pain experiences, such as when pain is… | |
| a. Chronic | “I have neck pain daily and I know spiritually there’s really nothing that can be done because it’s chronic pain. I can pray all I want, but the pain is still gonna be there.”- Unknown age, male, prostate cancer, Christian |
| b. Neuropathic | “I know this [neuropathy] is a crazy side-effect to deal with. I know many, many people deal with it for cancer, for diabetes, for all kinds of things. I know there’s a lot of research being done on what can people do, but nerves are nerves.” - 65 y.o., female, breast cancer, Christian |
| c. Especially intense/severe | “[It was] like 4 out of 10 pain-wise for a while. Now, I cruise at about a 5 or 6 constantly. At night, it can even be up to an 8 or a 9. I gave birth three times, so saying that it’s—and I have an incredible threshold for pain… I just keep hoping that maybe it’ll go away… I can’t expect miracles.” - 65 y.o., female, breast cancer, Christian |