Table 2.

Primary Themes and Exemplary Quotes

Major Theme: The opioid epidemic, stigma, guilt, and influences on processes of pain self-management
Subtheme 1: The influence of stigma on opioid use and pain self-management behaviors
1a. The negative media coverage and personal experiences of the opioid epidemic
• “I did have the word oxy in my brain from news reports, so when OxyContin came into my life, I was a little like, aah [referring to feeling afraid]– you know?” (Grace, 52, breast cancer)    • “Just what I read and hear, addiction is not a lot of fun. Yeah…and coming off addiction probably can be even less fun. So obviously in the back of my mind I’m concerned about that down the road.” (Joe, 76, pancreas cancer)    • “I read the paper and I watch the news, so I certainly knew that there was a crisis and that there were many deaths from inappropriate use. I was alarmed by it as everybody has been. I was shocked at what we learned about the pharmaceutical company and how they had promoted it inappropriately and doctors that had been giving out prescriptions indiscriminately.” (Hannah, 68, breast cancer)    • “Well, it killed my brother so – I don’t like them.” (Ellie, 31, gastrointestinal cancer)
1b. Fear, guilt, and shame related to opioid use
• “Cause you know, I do feel guilty… I don’t even smoke, I never smoked, I was not a drinker, so for me taking the pills, it’s like wow” (Frances, 65, ovarian cancer)    • “The fear of addiction…I just watch too much television where it’s always like someone gets in an accident and it starts off as oxys, and then when the oxys run out, they run to other drugs to make up for – they just need the drug – they go to crack… I’m not a needle person. I don’t really have an addictive personality.” (Kaitlin, 55, gastrointestinal cancer)    • “Not knowing if my body would become addicted. I had no idea because, again, it was my first experience ever with anything like this. And so, I had no experience and all I had was nervousness about potential…I could become addicted.” (Rose, 73, pancreas cancer)
1.c. Opioids restricting behaviors
• “I probably could have benefited from it a lot sooner if I wasn’t so afraid” (Lilly, 59, ovarian cancer)    • “I’m sort of paranoid about that [addiction]…that’s perhaps why I’m not as eager to take multiple amounts of them [short-acting dose].” (Esther, 67, breast cancer)    • “Even now I’m trying to gear more towards Advil so I can get rid of the opioids… I don’t want to get hooked.” (Dylan, 69, lung cancer)
1d. Rationalizing opioid use and externalizing blame
• “I don’t take them for fun, obviously…I take them because I have cancer…I have pancreatic cancer, it’s painful, versus people who take it for pleasure.” (Edna, 64, pancreas cancer)    • “I believe it is a different situation. I believe…you have these junkies, sorry to call, it the way it is. They let themselves get hooked on it, you know?” (George, 51, lung cancer).
Subtheme 2: Communication challenges stemming from opioid stigma
2a. Avoiding conversations about opioids
• “I didn’t want my doctor to think I was looking for pills, either” (Grace, 52, breast cancer).    • “I have never done that [ask provider questions about opioids] because I’m afraid of being judged.” (Tamera, 48, uterus cancer)
2b. Provider reassurances regarding opioids
• “I have to take it, because I’m sick and I have pain. And so, what he [physician] explained to me was I’m not the typical candidate that they’re talking about on TV. I’m taking it because I have pancreatic cancer, it’s painful, versus people who take it for pleasure,” (Edna, 64, pancreas cancer)    • “They had to re-assure me 2–3 times, listen you have cancer, you have a legitimate reason, no one is going to be judging you, this is something you need,” (Mary, 51, ovary cancer)
Subtheme 3: Logistical barriers to filling opioid prescriptions: reinforcing stigma, and impeding pain control
• “I feel really bad for people that really need it because they’re a lot of people out there… abusing it, and it makes… it hard for them, for us, to get our medications…it’s ridiculous how hard it is to get the medications now. “ (Frances, 65, ovary cancer).    • “Instead of the long-acting, I keep – I have some – a smaller dose for short-acting, and so a couple of times I’ve had to kind of piece it together until I can get it delivered.” (Asma, 65, breast cancer)    • “This pharmacy had asked if I could get a letter from my doctor just stating that I was her patient and cancer, stage four, and that I would be prescribed these medications. So I got that letter …So just talking with them and trying to make a partner with them so that they weren’t concerned about why I was getting them on such a routine basis, or why I was getting as many as I was… My doctor wasn’t happy and she said it’s none of their business. But she wrote the letter. But she thought it was inappropriate. They didn’t by regulation need it. They just - I don’t know… - they are so punishing. You just feel like you’ve done something wrong. It was just really hard…And I didn’t want them looking scant at me when I walked in… because they are so misused and we’ve got this horrible epidemic, just there’s a certain initial stigma in taking these drugs, and I didn’t want to feel that.” (Hannah, 68, breast cancer)