Background
Methods
Design
Participants
Recruitment
Data collection
Experiences with HIV and HIV care | |
HIV history | To start, would you mind talking with me a little bit about your experience with HIV? When did you receive your diagnosis? (Probe: When were you told by a health care provider that you had HIV?) |
HIV current status | What is your understanding of your HIV status currently? (Probe: How well is your HIV being managed medically?) How do you cope with and manage your symptoms? |
HIV management for future | When you think about the future, how do you imagine you will be managing your HIV? What do you see as the main challenges for managing your HIV symptoms in the future? |
Understanding pain experience and treatment | |
Description of pain and interference | Could you tell me a little bit about the sort of chronic pain you have had? What is it like? When does it get better? What makes it worse? How does the pain interfere with your life? How would your life be different if your pain was reduced or better managed? |
Pain treatment and coping | What do you do to cope with or manage your pain? (Probe: How do you get through the bad times with your pain?) Are you taking any medications for your pain? Is there anything else that you are currently doing to help deal with your pain? (Probe: How does that work for you?) |
Social support | Do other people in your life know about your pain? Have they helped you cope or made it more difficult? (Probe: In what way?) |
Alcohol and substance use | |
Patterns of use and contexts | I would like to get a sense from you about how alcohol fits in with your life. When do you drink? How many days per week? How much do you typically drink? What are the main reasons why you drink? (Probe: If you think back over the last week, what things happened or what were you feeling just before you picked up a drink?) |
Drinking and pain | How, if it all, is your drinking related to your pain? (Probe: Do you use alcohol to help your pain? How so?) |
Alcohol and medication | How is drinking related to your use of medications: HIV meds, pain meds, other medications? (Probe: Do you tend to drink with medications? What about forgetting to take them?) |
Alcohol-related consequences | Are there any negative effects of drinking for you? [Probe: Any not so good things, like effects on either your health in general or HIV?) |
Experiences with treatment | |
Treatment for pain | Have you talked to your doctor about your pain? What have they recommended for you? Have you faced any difficulties getting treatment for your pain? (Probe: If so, what have they been?) Have you ever had anyone talk to you about ways to manage your pain? (Probe: If so, can you tell me about it?) If yes: What did you like and what did you dislike about counseling to help you manage pain? If no: What do you think about having someone to talk to you about things you could do in addition to medication to help you or deal with your pain? |
Treatment for alcohol use or other substances | Have you ever had treatment/counseling for drinking? (Probe: Can you tell me about it?) What did you like and what did you dislike about this kind of treatment/counseling? (Probe: What did you get out of your treatment/counseling?) Have you ever had treatment or any help for drug use? What about your treatment for alcohol or substances has been most helpful? (Probe: How were you able to use it to improve your health?) |
Technology use and access | |
Smartphone access | Do you have a smartphone: a phone that has access to the internet? What kind of phone is it? Do you have a data plan that you use? Do you have unlimited data? For what activities do you usually use your phone? |
Internet access | Do you have access to the internet? If yes: How often do you use the internet? Can you use it in a private space? (Probe: Can you be alone when you use it?) If no: Where could you get access to the internet if you wanted to? How difficult/easy would it be to access the internet in this way? |
Overview of the program and modalities | |
Smartphone and videoconferencing | What do you think of using the video/phone approach to deliver an intervention? What do you see as the main advantages and disadvantages of doing an intervention for your pain and alcohol use by phone or video in this way? |
Duration | What do you see as a reasonable number of sessions for working with a counselor on ways to better manage your pain and alcohol use? What do you see as a reasonable amount of time for a session with a counselor to talk about your pain and alcohol use? |
Ways to improve | Are there any other ideas that you have about how we could make the intervention better: more useful to you, more interesting for you, more likely that you would want to use it? (Probe: This could mean the content, ways of delivering it, other uses of technology [e.g., text messaging, web]) If you were designing a way to help other people living with HIV who had pain and consumed alcohol, what sorts of things would you want to do? |
Analytic measures
Results
Sample characteristics
Characteristics | n (%) |
---|---|
Age (year), mean (SD) | 53.3 (8.83) |
Gender | |
Male | 7 (70) |
Female | 3 (30) |
Race | |
Black or African American | 8 (80) |
White | 2 (20) |
Ethnicity | |
Non-Hispanic or Latino | 8 (80) |
Hispanic or Latino | 2 (20) |
Avg. weekly pain (0–10), mean (SD) | 7.33 (2.06) |
Drinks per week | 19.4 (12.6) |
Heavy drinking episodes past month, mean (SD) | 8.00 (7.17) |
Intervention themes from qualitative analysis
Intervention themes | Quote |
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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]
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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]
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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]
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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]
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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]
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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 can—it 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]
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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]
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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]
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Resilience in coping with HIV may serve as a foundation 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]
Summary These comments highlight how HIV has challenged participants’ identities and their resources.“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]
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]
Summary Comments highlighted the importance of flexibility, and participant participation about decisions regarding treatment.“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]
Importance of clarifying the rationale for the intervention approach
“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]
“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. 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]
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]
Coping with pain, stress and emotion
“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]
“Marijuana helps me manage my depression from the pain.” [Participant 28, Black male in his 40’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]
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]
“So I had to dumb it down a little bit and go to my beers and leave the hard alcohol alone […] I don’t think my body could take that anymore.” [Participant 28, Black male in his 40’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 can—it feels funny and I said, ‘my blood pressure has to be up.’” [Participant 5, Black female in her 60’s]
Summary There were a number of comments in the interviews that provided insight into the goals and values that participants identified as incongruent with alcohol use. Participants identified medication adherence, HIV progression, and health more generally as factors that may contribute to readiness to change drinking.“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]
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.” [Participant 11, Black Hispanic male in his 40’s]
Summary Videoconferencing appears to be a feasible and well-received modality that could be supplemented with additional media such as video segments to reinforce learning. This is a modality that is familiar to participants and readily accessible.“I like it in a video, yeah, Something that you could sort of go back to.” [Participant 13, Black male in his 40’s]
Interest and experience with intervention components
Comments ranged from: “It’s a good idea”; “I would be interested because I need to find ways to improve myself”; “I think it would be awesome”; I would give it a try, why not”; “Nice to open your mind to other things”; to “Depends on how useful it is.”
Regarding psychoeducation about pain, alcohol, HIV associations: “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]
Regarding the use of adjunct video materials: “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]
Summary The comments suggested that the participants were receptive to the content and modalities proposed including adjuncts to the intervention such as video clips to help them learn skills. Comments suggested particular interest in learning more about the association between alcohol, pain, and HIV and a recognition of the importance of addressing depressed mood as part of the intervention.Regarding intervention features to keep in mind: “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]
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]
Summary Participants were very responsive to health care workers who exhibited high empathy and concern, including following up on missed appointments.“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]