Table 2.

Themes and subthemes with illustrative quotes

Themes and SubthemesIllustrative Quotes
Theme 1: Avoiding harms of medication
 Fear of addiction and damage to bodies“I don’t like (pills). For how bad I am, from my kidneys. Like, my mom also died from diabetes. She took a lot of pills, and she died. I think that stayed on my mind a lot, so now I fear pills”
“I went through this (discussion about medications) with my dad and I’m not interested in taking medications … I won’t take them”
“I’m hard on taking pills, I don’t like taking pills. I never have. I’m not a pill person … I think they’ll do something to me, like have a bad reaction to ‘em”
“My son says, ‘that no medications are better mom because that way you’re not drugged or anything with so many medications,’ and that’s the way I live”
“I don’t care for the pain meds because I don’t like how they make you feel, like that groggy”
“They have offered me medicines for nausea … but I have refused them. I don’t like them. Since childhood, I haven’t liked them. I prefer injections. You use, in Mexico, they give you lots of injections and for that reason, I’m used to that”
“I don’t want to take too many pills … I hear too many people saying that it (taking pills) is bad for your health. That taking too many pills affects your body, your liver … I try to not ask for anything … you can never be sure of what can hurt you”
 Effective distractions“I don’t have time to feel sad. Since this baby came into our lives, I don’t feel sad or depressed. I look forward to hearing his voice and playing with him”
“I love to practice the piano because it has notes that can reflect the sentiment one has. It is like finding the right words that reflect your feelings and once you say those words, you feel so much better”
“I just read and find a poem that expresses how I feel and that makes me feel better. I think that through sadness, you can feel better”
 Reliance on traditional remedies“When my grandmother was alive, she would always say, ‘well, if you have this plant, I can make you some tea, or we can get ingredients and drink this,’ and she was 90-something when she passed away. I wish I could remember what grandma said I should take”
“My wife has to rub some ointment on my back which helps the pain and then I go to sleep”
“I like to take the Mexican medicine, it has ginger, cinnamon, stuff for breathing, it helps my cough”
“When I feel my BP is low, I put salt under my tongue and I just lay down”
 Fatalism: the sense that one’s illness is deserved punishment“(My feeling this pain) is God’s will. I hardly get sad, you see, because I’ve resigned and accepted God’s will”
“Let it be, let it be, whatever symptoms going to happen, let it happen. Can’t say well, you don’t want to do this or I want to do that”
“I do believe that everything happens for a reason. I have no choice. This is it. This is as good as it gets”
“You try to survive and then everyday living. I can’t do nothing, go with the flow. That’s all you can do”
Theme 2: Barriers and facilitators to ACP: faith, family, and home
 Family group decision-making“It’s the whole family that would make decisions because they’re the ones who care for one and are looking out for their health”
“I imagine that the children have to know what’s going to happen with me. I know that the time will come and I imagine that my children are going to know what to do with me”
“I’d need to gather my children and ask them to talk amongst themselves as to who should be the decision-maker”
“(ACP) is important because that way the (family) won’t feel bad, they won’t feel, I mean, like depressed because they didn’t provide the care I needed. So I talk to them and I let them know … my decisions”
“I told my sister … and my dad that if I have a cardiac arrest, they should look at me and if they want to, disconnect me … its their choice”
 Family reluctance to have ACP conversations“My daughter would not be comfortable discussing (ACP) … they don’t want to talk about that even if they are aware that (death) might come. But I think they prefer not knowing and when that happens, they’ll decide what to do … its important to have the conversation before the person can longer talk or walk … on the other hand, I don’t want to bother them with my illness”
“My wife doesn’t want to touch the subject (of ACP), but I think it does help me because one is worried about the family and what’s going to happen and this and that. My wife tells me, ‘no, don’t worry’”
“Well, they listen to what I have to say and sometimes we talk about my kidney failure. They often say that they don’t want to talk about what is going on with me and my illness, and they say ‘because I can see that you get sad,’ but I tell them that there’s nothing we can do about it, I already have it and nobody is going to take it away”
 Flexible decision-making conversations at home with family“Conversations should happen at home … I won’t have the courage to tell (family) about (ACP) issues … because I’m going to see them sad … so it’s better to have someone else talk about it”
“At home, that way the family can understand what’s going on, what you feel when you go to dialysis, what it’s like for you here … and educate them … to let them know, this is what I go through every day … especially if you have kids that end up with diabetes”
“At the house because its more private … there’s not so many people around like here”
“Have these conversations when one is good, good and healthy … because when one is too sick, when you can’t anymore, you’re not going to be able to make (decisions)”
“If you’re sick, you’re not going to have the right mindset on (ACP conversations). Probably when you don’t even have a problem is when you should talk about end-of-life”
 ACP conversations incorporating trust and linguistic congruency“A person like you, very prepared that gets the topic really well and you give us trust to open our feelings”
“That first year is too early to have this conversation. You need to first figure out if you want to live instead of die and if you’re going to go ahead and accept the dialysis treatment and get through that day and then go ahead … help them live with (dialysis), cope with it first, that first year is critical”
“It’s good that when one is already sick, when one is older, it’s good to be helped with (ACP) … but at the same time, to think positive. It would be good for me to talk but at the same time be positive about oneself”
“Someone that can be careful and sensitive with how they communicate because they can say, ‘we need to talk to you because your family member is very fragile and sick.’ That can worry the family … Instead saying, ‘don’t alarm yourself, we need to talk about certain things.’”
 Family-first and faith-based decisions“I’ve never thought about advance directives. Maybe, 
my wishes are just that my family wouldn’t suffer so 
much”
“Receiving CPR would be prolonging the suffering of my family … why make my family suffer more if one’s heart already stopped? It’s better to give them the bad news so that they do not live with the hope that one might wake up”
“They asked me if I wanted to be intubated. I don’t want anything like that because why would I do something that is against the will of God? The day that God wants to take me, he will take me. I was born and I know that I will die”
Theme 3: Means to improve wellbeing
 Sources of support“(The dialysis team) reassured me, told me not to be afraid; they said that there are people who’ve been on dialysis for over 20 years and they’re still here, so that encouraged me”
“I was told I was a good (kidney transplant) candidate cause I’m taking care of myself and that’s because of my wife. She’s the one that makes sure I’m taking my pills and she fixes me the right meals … everything is my wife’s doing”
“Just like I watched over them, so they’d make a career and have a profession, now they say, ‘now it’s our turn to take care of you’”
“When I found out about my illness, I thought about many negative things. I thought I was going to die but I took comfort in God. God, who’s so big … I prayed and asked him to give me courage”
“Sometimes I do feel low, but I surrender to God and he gives me peace”
“I think that talking to others with ESRD helps … I have been doing (dialysis) over three years now … people come to me because they don’t know ... concerns. I’m sure everybody has different concerns, some of them are going to be alike. I think that talking (to other ESRD patients) will be a good idea.”
“Advice from someone who has been through this that can say, ‘take this or don’t take that … this is what I take when I feel nauseated or tired’”
 Improved understanding of illness leads to adherence“Actually, I’m not obligated (to have dialysis) … I want the symptoms to improve, to be better, because if I don’t come (to dialysis), I know I’m going to feel worse. I’m going to feel worse because the liquid stuff affects me”
“The education on the transplant is when I decided okay, ‘I need to get on the list for the transplant and do the tests and stuff like that,’ which I just did it this year”
“Many people think that it’s boring to come here for 3–4 hours, I think that they’re extending my lifespan. I see it as something positive to increase the duration of my life … I think without dialysis, I would have been suffering even more”
“Well perhaps having hope of getting a kidney, that would help … I told them ‘put a kidney in me, it doesn’t matter if it’s from a dog’”
“I stopped eating salt, and now my legs don’t swell up anymore. They’re almost normal now”
 Recognizing new self-value“I’m doing my Licensed Practical Nurse right now. That’s what I’m doing because … I want to end up in a dialysis clinic so I think I can offer something to the dialysis community”
“I use the computer … this has benefited me, I’ve had a better quality of life”
“What’s nice is, I can help around the house, I can do dishes, but afterwards, I got to sit down.”
“I pick up my wife from work. I take her and I pick her up because she doesn’t drive … I make an effort and I get up and I go get her”
“It also helps me to work because when I work I feel useful”
“I’m satisfied the way I’m living, the way I live, the things I do. Like I said, that’s parts of life”
 Maintaining a positive outlook“I’m getting used to it (hemodialysis) … I’m not gonna let nothing get me down or nothing”
“Illness made me look different at life ... the way I was living, well, I was doing things different … now I praise the Lord every day. Feel pretty good”
“(Hemodialysis) is the best thing for me … this is what gives us every day, everybody here a second chance at life, to keep holding on”
“I appreciate time quite a bit now and I try to use it as best as I can because you only have certain hours in a day and you have to try to make the best out of those hours … I always believe that if you live with no purpose, then what is the purpose of living?”
Theme 4: Challenges of illness
 Dietary restriction is culturally isolating and challenging for families“One of the hardest things about dialysis is the diet. I don’t eat bananas, I don’t eat oranges”
“And (my wife) gets mad because I ask her for food. She says, ‘well, you can’t eat that.’ I tell her, ‘I’m hungry!’”
“When I had to change my eating habits, that change was the most difficult because like I’ve told the doctor here, ‘when you have diabetes, you want to eat everything’”
“My diet has been the most difficult thing … I’ve asked my daughters, if you want me to stop drinking soda, don’t bring it over for me. I’m blind. I just listen. I hear the popping sound when they open a bottle or a can and I’ll ask my daughters to bring me a soda”
“The saddest part is that I cannot drink. The doctor told me that I was only allowed to drink four glasses of water per day. It’s sad that you are thirsty and you can’t drink … you even seem to get thirstier”
 Logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers; communication problems“I’ve missed dialysis because I don’t have someone to bring me over for dialysis … because I no longer have any aid … I arranged for a ride that brings me but the problem is that they always speak English”
“A lot of the times, they (dialysis transportation) don’t do the schedule the way it should be … sometimes it gets there late”
“(The transportation driver) didn’t tie the wheelchair and I went back and I hit myself. So, we fired him … then I got this one guy that was working good, he played the radio in Spanish and then one day, the (dialysis facility) reported that he was picking me up late … so I don’t know what happened. He’s out of the picture”
“Sometimes I come here with not enough food because of the financial problems that I have”
“I told them, ‘you guys don’t explain what’s going on with me,’ and then when they come to see me, they have an attitude like, ‘Aw, I gotta be here?’”
“I don’t know what’s going on because when they see me, they talk amongst themselves. I don’t understand what they say because I only understand some words … I don’t understand English”
“Nurse Barbarita is the only one who talks to me. She speaks Spanish but the rest (providers), they hardly do, they hardly ever speak to me”
“I’m not going to see that doctor anymore … he just didn’t even give me (information about my kidneys) or anything. He says, ‘if you don’t take this, your kidneys aren’t gonna work.’ That was it! I never heard the word dialysis until I was already on dialysis”
 Required rapid adjustments to chronic illness“At the beginning, everything was off. I was getting cramps … I feel better now. That first year was awful”
“I feel like it’s the same for a lot of people, it takes about a year to get used to it (dialysis). I think your body is fighting it, fighting it”
“It was a lot of things to get used to, going to the doctor all the time and the medications … a lot of changes … I don’t think there’s anything you can do to prepare for that kind of news. You just have to take it one day at a time and figure it out”
“The first year, when I got home, I didn’t want to do nothing, I was tired, the headaches and everything”
 Demanding hemodialysis schedule“It’s very little work I get because dialysis affected me a lot. In my work, sometimes I look for work in a shop but they don’t want to give it to me because of my schedule”
“(Dialysis) changed me completely because I don’t like to be on dialysis, because it can be crazy, you know ... you can’t do nothing because you have to spend time in here … like 4 hours”
“I hated (dialysis) I hated that I’m having to do this forever … it’s really troublesome to be getting up early and come here for dialysis three times a week, this is very hard for me. It seems very hard for me, more so because my knees are bad, because of my arthritis they hurt a lot when I walk. My legs hurt a lot and the pain sometimes doesn’t let me (attend dialysis).”
“While sitting in this chair for four hours straight, I have to be asleep when I do it, or I get anxious … I never felt anxious till I started doing this (dialysis)”
  • ACP, advance care planning; CPR, cardiopulmonary resuscitation; LPN, licensed practical nurse.