Table 5.
Qualitative Themes and Exemplar Quotes.
| Themes | Codes | Illustrative Quotations |
|---|---|---|
| Barriers | ||
| Caregiver self-efficacy and preparedness | Distress related to eating behaviors and weight loss | “But he’s eating. He’s getting calories in. So if I find out today that he’s back to 147, I think I’ll have a stroke because then I don’t know what we’re doing wrong. I worry about that. What am I doing wrong? Why isn’t he gaining? Why aren’t I getting more weight on him, and weight’s going on me, but it’s not going on him.” (Katie, pancreatic cancer caregiver, HEI score 42) |
| “But if he would just get the calories in… even milkshakes for a while, he was drinking. And I feel like sugar is something that just really does feed into cancer. And so I feel like when I’m giving it to him, I’m giving him stuff that just wants to feed that tumor, which makes me feel guilty. But he doesn’t have that belief. So, and he just wants nutrition and he wants to eat, and he’s really stubborn just to eat with me.” (Katie) | ||
| Caregiver needs are neglected | Caregiver stress management | When asked how she manages the stress of caregiving… “I don’t. I don’t, I just do a lot of smiling and I just don’t. I have a dog.” (Leah, esophageal cancer caregiver, HEI score 38) |
| “I used to work out and stuff. Now I don’t. I don’t mean that I’m frustrated…I just don’t feel like doing more than I’m already doing for everybody else. You know, it’s funny because I feel like I do feel stressed, but I don’t think anyone else thinks that I should be feeling stressed.” (Helen, colorectal cancer caregiver, HEI score 38) | ||
| Nutrition as a source of conflict | Conflict | On accommodating loved one’s food preferences… “I don’t know how to explain it. I’m still trying after 31 years to get over the five things that he likes…I feel like – I hate cooking now. I’ll put it that way.” (Helen) |
| “I find that I eat what he likes. I don’t eat much of what I like. I entered this marriage thrilled that I was going to be cooking all kinds of things, and I found myself limited because his diet was limited. And I wasn’t getting what I used to always have.” (Leah, esophageal cancer caregiver, HEI score 38) | ||
| Facilitators | ||
| Increased awareness and value of nutrition | Changes in shopping and meal preparation | “I watch the seasoning, what I’m putting in it, how much, you know. And the texture, I make sure it’s okay for her to take.” (Daniel, pancreatic cancer caregiver, HEI score 62) |
| “If I’m making a chicken cutlet for him, instead of frying it up all the time, what I try and do is bread and bake it. It might not taste as great but it’s still, it’s healthier. I don’t fry many foods anymore. So that’s probably changed.” (Helen, colorectal cancer caregiver, HEI score 38) | ||
| Misinformation about nutrition | “Well, so now I’m actually obviously more conscious of what I cook, how I cook it. We’ve added more vegetables…I don’t really cook red meat anymore, because he won’t eat it.” (Ruth, colorectal cancer caregiver, HEI score 40) | |
| “But you just get so much information. Just like, you know, uncles just [sent] me, “Oh. Try these pills. They're from a plant over in,” you know… “And they say this is going to stop cancer.” And it's like, “Thanks, uncle.” Like, take them and dump them in the trash.” (Matthew, esophageal cancer patient, HEI score 43) | ||
| “So - but, you know, you hear rumors that cancer patients shouldn’t eat anything with sugar in it. It’s bad for them, I’m like jeeze, then we won’t be eating, you know” (Josh, gallbladder cancer patient, HEI score 48) | ||
| Influential others | Influence of caregiver | “But more so my wife, she tries to put the stuff out there that I should have. And shame on me for not eating.” (Chris, colorectal cancer patient, HEI score 57) |
| “I mean I know it’s not like I’m getting big, gigantic steaks put in front of me every day. And I’m getting the right stuff to eat. I've just got to eat it. I mean so no, I would say for the most part, it’s my fault.” (Chris) | ||
| “She (wife) does a good job of buying the stuff that I should be eating…. You look at our refrigerator – there’s a gigantic bag of walnuts, so instead of eating that Kandy Kake or Jelly Crimpet, I eat walnuts. And I can tell you – they don’t taste anything like jelly crimpets, but I eat them.” (Chris, colorectal cancer patient, HEI score 57) | ||
| Family interactions and meal sharing | “Both of my kids and their spouses love to cook. And they love to eat healthy…So when we eat with them, I feel like – ‘Oh my gosh, we had a great, really healthy thing.’" (Katie) | |
| “I really like to go out, you know, with everybody. You know, and sit there and…as a family, we all go out a bunch of times a year. And it’s a big thing. You know? So I always like to eat – everybody in my family knows what I’m doing and everything. And they seem to get a kick, because I eat everything.” (Mike, pancreatic cancer patient) | ||
| Positive coping | Positive attitude | “I just take it day-by-day and just have fun.” (Mike, pancreatic cancer patient) |
| “I think your attitude’s probably a big part of it. You know? Keep a good attitude, strong- you know, fight the fight” (Matthew, esophageal cancer patient, HEI score 43) | ||
| “Well, I truly believe your attitude has a lot to do with it. And if you don’t try to help yourself, it’s not going to work. You just can’t give up.” (Gertrude, pancreatic cancer patient) | ||
| “The only thing…if I was just going to give a blanket of advice, I would just – keep your chin up, and keep eating.”(Mike) | ||
| Humor | (When asked about changes in appetite) “Probably my stubbornness to conform affects it -- because we don’t have tasty cakes. You got any on you in your bag?” (Chris, colorectal cancer patient, HEI score 57) | |
| (When asked about changes in appetite) “I used to eat – I could eat a whole hoagie. A whole 12-inch hoagie. Now, I’ll eat half of it, and put it in the refrigerator and hope my daughter doesn’t take it for lunch. And the next day, you go and get it out of the refrigerator and it’s gone and you’re depressed. So, there’s the depression. But no, it hasn’t affected me.” (Chris) | ||
| Focusing on the things you can control | “There's things you have no control over. There's things that you depend on your doctor for. There's support from your family and the love – but there are things that you have to be able to do yourself. So, I felt like nutrition and exercise were the two main things that I felt I, myself, could control. And that's where it led me to. Even before I started my chemotherapy the first time, I got in touch with a dietitian here.” (Rob, colorectal cancer patient, HEI score 60) | |
| “But the eating good is about the number one thing I can do to help myself to be healthy, is eating good food. It’s about the only thing I can do.” (Barry, pancreatic cancer patient, HEI score 26) | ||
| “But one of the comments doctors said – patting me on the back, he said, ‘Whatever you're doing, just keep doing it’ – that was probably one of the biggest encouragements that I felt… [Voice breaks]. That I can control – control...so it's sort of a psychological thing too. Like, help yourself to be able to – I can help things a little bit. So, I feel like every day when I wake up and I'm conscious of that when I'm eating, I'm saying to myself, ‘Well this is only going to help me.’” (Rob) | ||
| Adopting strategies to improve caregiving | “Keep chin up. Just patience, lot’s of it. Don’t give up. And you got to be the glass half-full person, because they’re definitely going to be the half-empty person.” (Leah, esophageal cancer caregiver, HEI score 38) | |
| “Patience. Be patient…Have patience. Just sit back and say ‘all right, it’s not that big of a deal what he’s asking me to do.” (Ruth, colorectal cancer caregiver, HEI score 40) | ||
| “Well, just being attentive to the patients… Making sure they get what they need, that’s the main thing. Have meetings with other doctors and be in communication… Make sure that the patient is getting what they need.” (Daniel, pancreatic cancer caregiver, HEI score 62) | ||