Table 3.

Adherence vs. Adaptation—Sample Participant Quotes

Uncertainty regarding recommendations	So I think it’s just a gripping fear “Can I do this? Can I do that?” And of course you don’t want to call your doctor even at 2:00 in the afternoon, can I take a five-mile hike? But I don’t think it’s ever been clearly defined to me what they mean. That would be very helpful because I probably did what they didn’t want me to do. (female, post-index admission)
	Don’t do anything strenuous to me might be very different than it is for someone else. For me it’s don’t go shovel snow. I’m hoping that’s what they mean... And I understand that varies from patient to patient, but just maybe knowing can I do this or should I ask you before I do it. (female, post-index admission)
	I don’t want to push too much. So I don’t know what, based on my condition, what is too much. (female, post-index admission)
Temporal incongruence between behaviors and symptom onset	Well, if I say boy, I really feel like a piece of cheese and I shouldn’t eat that because it’s very bad, and then I say hell with it and I eat it. Do I feel the effects? No, if I did, I wouldn’t eat it. (male, readmission)
	I can hold 15 or 20 pounds of fluid and you can’t even tell. You know, some people right away, their ankles get fat and they start to be able to tell… when I came in, I was 16 pounds overweight with carrying fluid. I didn’t notice that. (male, readmission)
	Sometimes it’s three or four weeks before I realize what’s going on. You don’t realize what’s going on at first, it kind of sneaks up on you. Why the hell am I feeling like this, you know? I’m taking all my meds. I’m doing what I’m supposed to be doing medically and I do all my follow-ups. (male, readmission)
	Heart-wise I don’t feel the effects of falling off the wagon. The water retention, I don’t know it until I look and see. And then I said something I’ve done wrong. (female, readmission)
Comorbidities	When I got home, I went two days without taking insulin. I can say that was the Lord that kept me. Two days, and I didn’t think of it until the nurse said, did you take your insulin, and I’m like insulin, insulin, I was on insulin before my heart got bad. (female, readmission)
	I miss my medications when I’m sick. When the gastroparesis start and I’m throwing up, I can’t take anything down. Everything will come up, so I’m not taking medicine. (female, readmission)
	Originally, I wouldn’t address my heart failure and diabetes. I found myself being in distress, at least one of them. But I address all of them now. I address the diabetes, can’t have the sugar, so I drink diet stuff. That’s new for me. I address the salt issue and what I intake. Sometimes I fall off the wagon because I want cheese curls or hot chips. But if I do that, then I eliminate something at dinnertime or I’ll switch something out so that I can have it. (female, readmission)
Socio-economic factors	If I went and ate the foods that they want you to eat, they’re expensive. I go for whatever the cheapest thing is out there to buy. Between me and you, I have to squeeze every penny I can. (male, post-index admission)
	It really just comes down to if I can afford to pay the copayment at the time, I can; and if I can’t, then it is what it is. (female, readmission)
	My earnings are not what they used to be and I have some small savings and we’re doing okay. Hey, if I hurry up and die, everything will be perfect. If I live for another ten years, I don’t know what we’re going to do about it. (male, readmission)
Hopelessness from treatment failure despite good adherence	I’m comfortable taking care of myself at home, but I’m not happy because at the end of the day, the end result is I’m still full of fluid. (female, post-index admission)
	I like to know how to manage CHF better but I don’t know if there’s a better way of managing it. I don’t know because I’ve tried to take my fluids and not eat salt and all that and I still ended up in the hospital. (female, post-index admission)
Emotional response to limitations	You’re not happy. You’re not smiling. You’re not finding anything to smile about. Life becomes difficult. Life isn’t what it used to be. You wish you could put the clock back 20, 30 years. Each day becomes non eventful. A chore. You’re going through motions. One day blends into the next. You’re not looking forward to anything because you don’t see a rainbow at the end of the tunnel. (female, post-index admission)
	The psychological impact I’m talking about is the kind of existential blues that come with this kind of chronic disease where someone isn’t in pain, but life gets a little bit etched away, etched away, etched away and the impact it has on the individual and the people in that person’s life is just not acknowledged. (male, readmission)