Table 2.
Domains | Themes | Illustrative quotes |
---|---|---|
Domain 1: Individual | 1) Older adults with complex care needs | |
1a) Multimorbidity |
- There’s degenerative joint disease, osteoarthritis with the elevated BMI hypertension, diabetes, coronary artery disease, strokes occasionally, diabetic amputations, quite complicated. (Staff) - I’ve been a diabetic […] 29 years now, and I’m thinking I’m going to lose my leg. They’re going to take my leg and what I’m going to do…if they take both my legs and I’m going to be in a wheelchair and then I’m not going to be able to live on my own…I’m getting all depressed (Patient) |
|
1b) Multiple life stressors | I deal with stress. My wife just passed away and my daughter just passed away. And it makes more pain on me but I don’t go nowhere or do anything. I just stay here. I don’t want it to be put on anybody else either. So the stress is really – it gets so emotional and it’s like you cried every day and you still have pain and you don’t take your medicine for the pain or nothing. (Patient) | |
1c) Low health literacy | I think their health literacy is hard to get a sense of where they’re at with that. I think this group struggles more than others as far as just even kind of managing their general healthcare. (Staff) | |
2) Impact of pain | ||
2a) Physical functioning |
- I’ve been having this injury over 4 years, and I got to tell you, it changed my life completely because I used to be an active man. I’ve 4 kids…We play soccer. We play basketball, football. Name it. They love sport. So it was so hard for me missing all that. (Patient) - I have a hard time walking, I can’t get around to meet people. I just can’t do it. (Patient) |
|
2b) Emotional functioning |
- Again, it ties in with the psychiatric comorbidity. So a lot of times the pain will drive anxiety and depression, anxiety about, “When’s my pain going to be better?” depression that “it isn’t getting better”. (Staff) - When you have pain, you’re in such misery, you don’t want to do anything. (Patient) |
|
2c) Work participation |
- On top of the financial difficulty. And right now it’s a little bit – I got help from my kids because they graduated from college but it’s still…I never ask anyone for help, even my family. They help me. Still that stress me out…I want to go back to work but it’s so hard for me. This injury has really destroyed me. (Patient) - I’m not working. I’m unemployed. I’m disabled, so scratch that off. Most of the thing this pain costs me is [my] ability to walk, sometimes even function. (Patient) |
|
2d) Identity | Honestly, it took my life away. That’s how I feel. I’m not able to work. I’m no longer the person that I used to be. The activities that I used to do, I’m unable to do or very limited in what I’m able to do. Socially, it does, the pain eventually isolates you from the rest of the world because you don’t have the energy. You’re in constant pain. You don’t have the concentration to keep up a conversation with someone and be out… I say that it took that previous life away. This is a new life now because I’m no longer that person. (Patient) | |
3) Coping with pain | ||
3a) Adaptive coping |
- I think that for me, I have pain a lot all the time within my neck and my back and my shoulders and so forth. But I think that at this point I’m just so used to it. I just live with it and I’m not going to let it stop me from trying to continue doing what I do. (Patient) - It’s not the same activity that we could do, it’s refocusing what we can do and just – if [someone would] walk three and five miles a day, whatever, you might only be able to walk whatever steps…our lives have changed, and sometimes it’s not easy but I’m [Patient’s name] 2.0. (Patient) |
|
3b) Maladaptive coping |
- You have to be fighter to get past that, you have to have the ability to say, “I’m going to go on”. “Cause if you’re a quitter, you’re gonna just dissolve with the pain. You can’t do that. (Patient) - I don’t overstep myself where I push myself to make my pain any worse than what it is. (Patient) |
|
Domain 2: Interpersonal | 1) Complex relationships with social supports |
- Some patients have wonderful family support. So if you’re a geriatric patient, what you need most often instead of me is a daughter. So if you have a daughter or a granddaughter or a daughter-in-law and you’re geriatric patient with chronic pain or osteoarthritis, you’re going to do a lot better than the patient that has a daughter in California or might have a son locally who’s less caring or less attentive. (Staff) - I have to say I no longer go out socially as much as I do. And if I do, it’s just with my daughter. I have not seen friends. It makes it very difficult to travel. I was supposed to go to a wedding. Just the ride alone would have killed me, never mind being at a wedding for hours. (Patient) - No one can see it on the outside. And that’s, I find, very difficult…if someone looks at you, they don’t see it. And I think if you have a broken leg, you get sympathy. I’m not saying I want sympathy, I’m just saying if you have a broken leg or a broken arm or a prosthetic or something, people see it, but they don’t see our pain. (Patient) -Yeah, everybody knows the circumstances, everybody knows how many surgeries I had, everybody knows that if I’m in pain I can’t go and do anything. They already know. They know I have limited mobility, so some things they don’t ask me to do because they know that I can’t. (Patient) |
2) Complex relationships with medical staff |
- I have a physical therapist for that and she tried to push me and I had told her, “You know what, you don’t tell me – you don’t have my body, you don’t know the pain.” I will try to work through it as much – but you’re going to force me to do something that I can’t. (Patient) - Folks have been told by somebody that they have to learn to live with their pain, and that’s a really big issue. They tend to think that that means that their providers are just giving up on them, that they’ve decided there’s nothing – that they aren’t trying hard enough. There’s nothing else that we can do. It makes them feel very hopeless. (Staff) - Our interpreters, a lot of them know the patients personally. They live in the community, and so sometimes, patients say things to the interpreters that they don’t admit to us. (Staff) |
|
Domain 3: Community | 1) Need for community resources |
- This time of year, it’s hard to find dry level ground to walk on, and gyms cost a few bucks. (Staff) - I mean in the good weather the beach is fabulous because…it’s a very flat, safe walking path – but there aren’t a lot of indoor rec centers that the senior group might have access to. (Staff) - [City name] does not have a lot of those sort of resources, unfortunately, so finding a safe space to walk will be a little bit of a challenge I think. (Staff) |
2) Need for culturally-informed care |
- The generational differences, cultural differences, to have them try to contextualize things and realizing this is where we are today isn’t always necessarily going to be like this and always. We may not get to be pain-free, right, but we can probably improve your function… It’s a hard sell. (Staff) - Trying to do any sort of pain measurement, I think, is really tough, it’s still a large barrier. (Staff) -So in some cultures, there is this level of extra respect for their seniors in a way that they’d want to do everything for them instead of helping them to improve their function. (Staff) - And some of the folks that we see, like to understand their past experiences, some of them are very traumatic before they come to this country. And I don’t think that I’m well equipped or have a full understanding of how their past also continues to play a role in their current state. (Staff) |
|
Domain 4: Societal | Socioeconomic and immigration status impact availability of resources for managing chronic pain | - …One of my upper middle-class patients has access to a wonderful swimming pool, has chronic pain, swims every day, has access to yoga classes, does yoga three days a week…the patient that is unemployed, is living in difficult housing in the inner city of [town names], has no access, of course, to a swimming pool, has limited financial ability to eat a healthy diet, is most likely overweight or even further elevated BMI, obese. (Staff) - I’m telling you, you work your whole life, and you get nothing. It’s not right, I’ll be 72 in March. No, I mean it’s... I think it’s wrong... but the government should do something for the elderly more than what they’re doing. I think I’m going to start a petition. (Patient) -We call it a squished generation. Because usually, if they are old enough not to work, they are taking care of little kids. So they are working, but not being paid… And so sometimes we have to call the kids to see when they can bring them in. It’s more work. (Staff) - A lot of the patients have been physical workers, construction workers and have taken a heavy toll on their body and so have had work-related injuries that have turned chronic or just plain old severe DJD, osteoarthritis from hard physical work. (Staff) |
Note: Italicized language indicates a direct participant quote.