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Table 3 Intervention themes and quotes from qualitative analyses

From: Development of a tailored, telehealth intervention to address chronic pain and heavy drinking among people with HIV infection: integrating perspectives of patients in HIV care

Intervention themes

Quote

1. Resilience in coping with HIV may serve as a basis for self-efficacy for new behavioral change

“Five or six of those [post-diagnosis] years was a struggle with doing things I wouldn’t normally do like drinking, smoking and carrying on… as if nobody gonna treat me the same anymore.” [Participant 28, Black male in his 40’s]

“So I didn’t let it define me. It was a moment that I needed to make…do you want to get better or do you just want to call it quits?” [Participant 11, Black Hispanic male in his 40’s]

“I mean to me like, my experience was really heavy, heavy stuff. I don’t know how I was able to get through it, you know? I mean, I guess my faith in God and prayers from my mom and my family.” [Participant 51, White Hispanic male in his 60’s]

“…So I have to deal with it the best that I can…I don’t let it stop me from doing what I need to do….Just ride the bus until you can’t anymore and they can’t do anything for you.” [Participant 5, Black female in her 60’s]

2. Importance of autonomy in health care decision-making

“She asked me do you want to go to AA classes or whatever, or be checked in somewhere and I told her no, I can handle it…I’m trying to get to the point where I could just stop, really. But I want to do it on my own.” [Participant 46, Black female in her 60’s]

“Bless her heart she tries it because she’s my doctor….What she doesn’t get is these are things that I want to do.” [Participant 32, Black male in his 40’s]

“Everything has to be after 3 pm because I work. And I can’t like take a day off here.” [Participant 44, Black male in his 60’s]

“I’d try it. Like everything, I try. I couldn’t say if I would keep going or not keep going.” [Participant 28, Black male in his 40’s]

“Sometimes people don’t want to leave the house or come for help.” [Participant 11, Black Hispanic male in his 40’s]

3. Importance of clarifying the rationale for the intervention approach

“And they started asking about my father. And I got to told them I’m not here for my father, I’m here for myself.” [Participant 5, Black female in her 60’s]

“I was going and I just stopped. My doctor always say, “We’re going to set you up with physical therapy.” And I go “okay.” I go for a couple of times and… then that’s it.” [Participant 28, Black male in his 40’s]

“I tried once but I think I didn’t have, maybe it’s the person. I didn’t have a positive- I didn’t receive it positively.” [Participant 42, Black female in her 40’s]

“I just didn’t get it.”; “They have ideas to remove (pain), but it’s not working. Like example. She asking me to close my eyes, and … put all bad memories inside the jar and close it. Go to ocean and throw it. And open your eyes. I opened my eyes. She said, “How do you feel?” and I told her “terrible.” [Participant 21, White male in his 50’s]

“I’ve never heard of a lot of pain management. I’ve always thought, “What are they talking about?” No idea what they mean by pain management.” [Participant 13, Black male in his 40’s]

4. Depression and behavioral withdrawal

“It’s okay. You know I’m not doing nothing really. It’s just appointments and I don’t work nowhere. I’m disabled.” [Participant 46, Black female in her 60’s]

“And you just want to crawl in a dark place and no, you don’t want to be bothered.” Participant 11, Black Hispanic male in his 40’s]

“I’m not from here so I don’t know a lot of people here. And all the people here that I did know, either have died or have moved out of town. So I’m pretty basically in the house.” [Participant 32, Black male in his 40’s]

HIV prevents me from being around certain people or crowds. Because I know what their minds thinking, you know what I mean….And I wanted to see people treat me the same when after I say that [that I am HIV positive].” [Participant 28, Black male in his 40’s]

“There are times when I just don’t have the energy to do things…I just don’t want to be a part of society.” [Participant 32, Black male in his 40’s]

“I don’t have friends. I have acquaintances, I have associates, I don’t have friends.” [Participant 32, Black male in his 40’s]

5. Pain, stress and emotion coping

“So I’m tired about the situation. If I will call my doctor, she will tell me this is age or take ibuprofen or Tylenol. Or do exercise… When I get more depressed I have more pain.” [Participant 21, White male in his 50’s]

“Sometimes I feel I am responsible about this [family health problems]. …This is why [I have] this pain, pain from deep inside and pain in my shoulder and in my head… And so sometimes I drink to forget.” [Participant 21, White male in his 50’s]

“If I don’t, sometimes the [pain] will trigger and aggravate me. Then I think about the HIV.” [Participant 46, Black female in her 60’s]

“Because I couldn’t take, I couldn’t face the reality of anything. I was in pain emotionally. I was physically in pain.” [Participant 44, Black male in his 60’s]

“But you know I got off that [Percocets]. But I still didn’t let my drinking go….Well, maybe I do [drink to cope with pain]. I’m not realizing it.” [Participant 5, Black female in her 60’s]

“With feelings, my anxiety, my depression, if I feel I’m getting very depressed I drink more. And it helps me, a lot if I think about the HIV, which I try not to think about it.” [Participant 46, Black female in her 60’s]

“Because of pain I just want to be numb. Sometimes I’m so defeated. A whiskey drink can take the pain away…I just drink not to think.” [Participant 42, Black female in her 40’s]

“Marijuana helps me manage my depression from the pain.” [Participant 28, Black male in his 40’s]

“I smoke marijuana. And it subsides everything. It calms the leg and everything. You know I’m just peachy. I just lay down and I’m ok.” [Participant 44, Black male in his 60’s]

6. Motives to drink and motives to refrain from drinking

“I don’t want to drink during the week. I don’t want to be an alcoholic and stuff like that….so that’s why…only Thursday Friday Saturday.” [Participant 13, Black male in his 40’s]

“But I take pain meds for it too. But I take them as needed, I try to take them as less as possible.” [Participant 5, Black female in her 60’s]

“Sometimes the alcohol you use is just to ease your mind…or you get upset and might get frustrated and you take that cold beer and then you don’t want to hear nothing now.” [Participant 5, Black female in her 60’s]

“I think people are just coping, trying to shut up that inner voice that’s crying for help and they drown themselves…Sometimes I get too bored, nothing to do.” [Participant 11, Black Hispanic male in his 40’s]

“You know I can change the beer drinking but at this point, I’m going to be honest, I don’t want to.” [Participant 5, Black female in her 60’s]

“Timewise, forgetful you know. Because I’m drinking beer and then I may fall out and I’m like, ‘Oh shoot! The medication.’ So yeah, it [drinking] has sort of affected it.” [Participant 44, Black male in his 60’s]

“I have my meds on top of the table and view in plain sight. So I’m like, ‘Oh yeah, I need to take my meds.’ So I take them right away.” [Participant 11, Black Hispanic male in his 40’s]

“Buying alcohol for $20, that’s a lot of money.” [Participant 42, Black female in her 40’s]

“I might drink too much. Too much beer and I can feel like I’m getting lightheaded. Okay, Or I canit feels funny and I said, ‘my blood pressure has to be up.’” [Participant 5, Black female in her 60’s]

“I’d rather be in my house where I know I can control the things that I do.” [Participant 32, Black male in his 40’s]

“Oh no, I’m drinking the right amount that a person should drink.” [Participant 11, Black Hispanic male in his 40’s]

“I’ve been on top of that from day one. They had the cap box.” [Participant 28, Black male in his 40’s]

“No matter where I am, no matter what I do, I will wake up out of sleep to take my medication.” [Participant 32, Black male in his 40’s]

“I have two or three friends who come to drink in my apartment. Mostly because I don’t get in trouble with anything after drinking.” [Participant 13, Black male in his 40’s]

7. Technology use and capacity

“I feel like that would be something to reach a lot of other people today. I think a lot of people would be willing to do something like this. Instead of coming to the office to meet with somebody like ‘can you just FaceTime me?’” [Participant 28, Black male in his 40’s]

“Sometimes people don’t want to leave the house or come for help. Why not have an app that the app can actually help you connect with that person. I like that.” [Participant 11, Black Hispanic male in his 40’s]

“I would love that… as long as they give me time to do it so I can be like at home, and to not do it in the streets… I’d have no problem with that… Schedule it.” [Participant 13, Black male in his 40’s]

“I always use YouTube when I am at home. I watch videos every day.” [Participant 21, White male in his 50’s]

“I like it in a video, yeah, something that you could sort of go back to.” [Participant 13, Black male in his 40’s]

8. Interest and experience with intervention components

“Sayin’ that it’s connected in some kind of way but I’m not looking at it connected in it that kind of way, maybe I can learn, well maybe it is connected and I never knew this. That would be very helpful to learn.” [Participant 5, Black female in her 60’s]

“I think if I would’ve known, like if there was stuff like that, more particularly like that, I would’ve been able to cope with a lot of things sooner than later.” [Participant 11, Black Hispanic male in his 40’s]

“Depression could be a problem. Depression is a big; it needs to be kept in tab, you know?” [Participant 13, Black male in his 40’s]

“You know. I- even though I’m dealing with my HIV problem or whatever but I never figured that it would be linked to something like that, you know. Not my HIV but my pain or whatever, I don’t know. You know it would be interesting to see.” [Participant 5, Black female in her 60’s]

9. Preference for intervention structure and style

“They (the caseworker, medical team and the interventionist) should be in close communication, not divulging everything, everything is confidential but keeping an eye on it.” [Participant 11, Black Hispanic male in his 40’s]

“I need motivation. I need someone to either remind me or call me or push me.” [Participant 44, Black male in his 60’s]

“We talk on the level where she understands my every part of the need…because she gives me all the right answers I want to hear.” [Participant 46, Black female in her 60’s]

I know that it’s our responsibility, like personal responsibility to get the help that we need but sometimes we need that extra help.” [Participant 11, Black Hispanic male in his 40’s]

“I’ll say something to the doctor and like I will leave the office and I completely forgot. I would get a phone call from the caseworkers saying…I have the paperwork you needed…..to help is to really make sure that everybody in the person’s team, the healthcare team, is informed about all of these things.” [Participant 11, Black Hispanic male in his 40’s]

“Well, I mean, having someone to… that you can really feel comfortable with them. Again and I, because I said this earlier, that I can talk to about any and everything of my personal well-being.” [Participant 44, Black male in his 60’s]

“They make me feel like they know me.” [Participant 28, Black male in his 40’s]

“And we were like family, It was so many years together.” [Participant 51, White Hispanic male in his 60’s]