Table 2.

Illustrative quotes

Theme and Subtheme	Quote
1) Accommodating and adapting to frailty are acts of frailty resilience
Equipment and technology	Like, I use the stick vacuum. I can’t use the pull-along one because…It’s too heavy. Also, it gets muddled up with my oxygen [tubing]. (Patient 1) It’s a good flat area [around the house] … There are no steps or anything. Steps are the thing that worry me, unless they’ve got good rails on them that I can hang on to, I can’t walk down steps. I can walk up them, not real well, but I can get up a step. But not down. The place I bought was perfect. It’s a two-storey place. I’ve had a chair lift put in, and I’ve got a bed – the bed cost $8,000. It’s an adjustable bed, do you know the ones that you have in hospital? I keep the place clean. (Patient 2)
Acceptance of limitations	Patient 1: I mean I know my limitations… when I get really puffy… you know, breathing [difficulties] and… sometimes I get a bit wobbling on my feet… You know, then I think maybe it’s time to have a rest for 10 min before I start again. Caregiver 1: I think that’s the biggest thing that – that [she] has been doing, is – is um – she accepts her limitations, gradually. She sets – sets goals to try and get ahead and tries to stay positive. Because of her multiple problems, she could take to her bed and say that’s it. Patient 1: I think you’ve just got to – you’ve really got to help yourself. And only you can do whatever you want to do… no-one else is going to do it for you. So anyway, I just rested, and my daughter was marvellous, and my son and his family were marvellous, and they just carried me along and I’ve slowly just got better. I didn’t feel stressed about it, I just accepted that, you know, what will be will be, and I’ll just keep doing my best. And, um, so here we are today. (Patient 3)
2) Exercise is endorsed for frailty rehabilitation
Relationship between frailty and inactivity	You know… we’ve got some friends and they think I should sit and not do anything because you’re not well. But I mean I’m not, not well. I feel I’m okay [laughs]… I think you’ve just got to get on with life. But I think the [chair] yoga and walking particularly is really – is really good for you. (Patient 1) And with a sore back, you know, things like that, she is more comfortable sitting at home inside. But I am forcing her. I am trying to get her to go out and do a bit more. (Caregiver 2)
Risk of progression without intervention	I had the stroke 23 years ago and I’m getting worse now than I - I’ve ever been. (Patient 2)
Motivation and internal resources	I need to put myself out and do what I’m asked. Whether it’s diet, exercise, or whatever. (Patient 3) And I really got to get back into it again [laughs]. I think it – I will, yes… you know [the walking] will improve, I’m sure. (Patient 1)
3) Experiences of exercise for rehabilitation: identifying unmet needs
Non-professional recommendations and self-prescribed programs	I do some exercises. I – I was doing chair yoga but I know how to do that now so I don’t need to put the television on to do it. And I – I do that, you know. It’s… mainly my feet and legs and arms and upper body. It’s not lying down on the floor doing any of [that] [laughs]. If I got down there, I’d never get back up again. A friend of mine that I was having a cup of coffee with, said about it. And she said, have you ever thought about this chair yoga? And I didn’t know anything about it, so I looked on YouTube and there’s about 30 of them on there. So, I picked one that I thought I could do…and then I done it like looking at the television for about two weeks and now I know what to do. I don’t need to sit in front of the television. You know, they have different levels of it there. (Patient 1) Oh, I got one of them cubii things, you know, you pedal. (Patient 12) Well, I got the little pedalling machine here that I do exercise [with]. I’ve got that electric, what do you call it, circulation [machine]. No pain then because I sit down. (Patient 4)
Formal rehabilitation programs are acceptable but have barriers to participation	They were things like, um, walking backwards and forwards. Like the things you asked me to do that day…sitting up, standing and sitting and, you know, and all of that, and weightlifting, and doing - there was a range of things to do that help your muscles. (Patient 3) You only do what you can manage and the nurse or the physiotherapists are monitoring. You learn to take your pulse….the walking might be as far as the person can go. And then it’s measured each time to see if they can go a bit further. So there’s feedback there. (Patient 3) [I went to] the cardiac rehabilitation type thing… with graded exercises to help improve your fitness…. The exercise program itself gets a bit boring after a while…. But the physiotherapists are there to encourage you. They keep making sure that you’re, um… what’s the word? Motivated. You get that positive reinforcement that, um, you’re achieving something. It’s not just sweating for sweating’s sake. (Patient 5) I did have the lady from XX Hospital – must have been last year sometime – ring up. She was the physio from up there – you know, the exercise lady from up there. It was after I went in [to hospital] – after I had all the fluid. But every time she sort of rang up, I was either in hospital or we were going out or something so we never got round to going. (Patient 1) I’ve been to a couple of, uh, exercise places… But it – it – then – it really hurts, like, not hurts me physically, but – but it sort of hurts me, like, doing the exercise, it - it’s so strenuous, you know what I mean? It knocks me up and it’s so uncomfortable, and I hate doing it. (Patient 2) I did go and get a consult…with a, with a physical therapist. And she gave me a list of exercise to do, but I’ve lost it. (Patient 3) I’m not good with being…target’s the wrong word… with being one-on-one. (Patient 5)
4) Rehabilitation goals in frailty are couched in normative behaviours
Activities of daily living	I look after the pots that I have in the backyard. And I water those normally once a day, but sometimes, if it’s hot, it’s twice a day. I haven’t up to this stage done a lot of extra walking than what I do if I have to go shopping. (Patient 3)
Participation in social spaces	Patient 6: Just like to get fitter. I’d like to get rid of the shakes. I’d like to get stronger again. I’d like to be able to dress myself without having to stop and take a break. Caregiver 3: Take a walk. Patient 6: Visit the park…Socialise with people. Caregiver 3: To be able to be out, living his life again, I think…dealing with everyday life again. We go out for lunch and we go out for dinner sometimes and a bit of shopping – I went and got my hair cut this morning… I just use the wheelie walker for that. I haven’t had to use the motorised scooter. I was walking a lot better than I am now, but I think that will improve as well if I keep doing these things. (Patient 1)
Getting or staying at home	I didn’t want to push myself until I felt confident [that] I could get back home… [Once there] I would get up and do small tasks. I would sit, I would walk outside in the sun. And also, my daughter got a cat, she got a kitten, which was great company. He was a real character. So, I just guess it’s lots of little things that you’re surrounded by that you take joy in… (Patient 3)
5) Frailty rehabilitation and the need to understand “people like us”
Camaraderie of shared experience	[We need] kind of weekly, um, like physical activity or you know, like group activity. You know, where people like us come together and, you know, help each other and… Look, I went back - I tried to go back to, um, water aerobics, right? But it was just too hard because I think… people don’t realise that you’ve got a medical problem, right, and they just push you - and then I just said to the swimming instructor, I said to her, please don’t push, you know. And she’s like, oh. And after she realised that I had a problem, she’s like, oh, okay, because I had a chat with her after the class. If it was a group of participants of everyone who had kidney disease… See that would be better…we all understand. And I think because everyone’s - we are on dialysis… And people, you know, know each other’s limitations, we all have the same symptoms. (Patient 8) Patient 8: I think this is what we need. I think we need a group that you can chat, you know? And it doesn’t matter whether I’m on dialysis and you are not on dialysis, but you can tell us your experiences. Patient 10: I would really like to, to find out from someone who’s on the dialysis that I’m considering. Patient 7: That would, that would be probably more beneficial than exercise. It’s one thing to know about something, it’s another thing to live it. I’d rather have the group session myself. They [Aboriginal men’s health group] used to take us swimming once a week, you know. And just walking up and down the pool, that sort of stuff like that. But there was always a heap of us. But then they take you out and do these exercises and then give you a big feed after that. (Patient 12) It’s no use doing [rehabilitation] with people that don’t get it. (Patient 9)
Addressing psycho-emotional-social needs	That was what I found was the most positive aspect, apart from the developing your skills and becoming stronger…and you stopped being so fragile-minded, you know. And… really it was the camaraderie of the situation. Some were really scared, and you know. (Patient 3) Patient 8: It needs a social thing as well. Because the physical becomes a social thing. It’s really good because you can connect with each other. Patient 10: And you being on dialysis could give information to others. Researcher: If you were to design a program for someone with frailty how would you do that? Patient 3: I think I would first find out how that person is and what they know… and be like a buddy in some ways for them.
Multi-modal program design	Play chess. Exercise your brain… I do a lot of games on my laptop. Yeah, everyday I do my brain exercises. Exercising the brain…. State of mind…I think it’s a lot to do with the state of health. (Patient 4) I would find out what they wanted to know about their condition. I couldn’t get anyone to talk to me. Because we never had kidney disease in my family… we knew nothing about it. I found reading books and things didn’t help me at all because it didn’t mention all the things that I was having trouble with. I like to know and then I feel I’ve got choices about what I can do for myself. Because I believe that we’re as responsible for our health as our doctors are. (Patient 3) A set of exercises which are designed to help, designed for the individual so that they’re not all the same (Patient 5)
Value of consumer design	The person providing [the program] would understand the limitations that you have, especially the um, limitations around your kidney commitment to the dialysis and – and – and the other medical processes. Sometimes I feel that some people, they put together some physical therapy type thing, um, and they think you’re in the army or something. So it needs to come from the viewpoint of the person or persons who are participating in it and an understanding of what their limitations are… designed for the individual so that they – they’re not all the same. (Patient 5) It’s one thing to know about something, it’s another thing to live it. (Patient 10)
6) Barriers and disruptors to frailty rehabilitation in the CKD context
Unaddressed symptom clusters of fatigue, dyspnoea and pain	I just like to sit here in the afternoon and fall asleep [but when] I go and lie on the bed, I don’t – can’t go to sleep! I think I’m getting to that age now where I need the nana-nap in the afternoons [laughs]. (Patient 1) You know I think we might be twins. [Laughter] I tend to have, uh, a lot of similar issues… I’ve got very poor sleep habit, uh, habits. I can be lethargic, don’t quite have the same amount of energy as I used to… When I was quite young, I used to be quite athletic and quite fit, and used to live quite a [sic] active lifestyle, and I guess as I’ve gotten older, that’s, uh, started to diminish. (Patient 7) The pain that comes in et cetera, and the breathlessness that sort of like discourages you…from doing it [exercise]. (Patient 5) Your body doesn’t have energy. I don’t have energy like before. (Patient 8)
Successful program design should incorporate symptom management	The other thing I guess would be some sort of program to help manage the pain and make joints become more mobile…so, yeah, so that I actually get out and do more walking without actually being in pain all the time. (Patient 5)
Time and energy as a commodities	After dialysis, I come home, and I’m just wrecked… Because your body doesn’t have energy. I don’t have energy like before. (Patient 8) I used to have a bloke come around home and do exercises twice a week, because I only get two days. And you know, you haven’t got any time and that, you got to go to appointments and stuff. Oh, I was just, just having too many doctors’ appointments, so [shrugs shoulders]… Well, the time, you haven’t got that much time you know. (Patient 12) I’d probably do [rehabilitation] on the days that I’m not doing dialysis, right?… Or you know what? It wouldn’t even bother me if I did it in the mornings that, that I don’t do dialysis. I’ll tell you what, when you sit in that chair for four or five hours, you feel like, oh my god, I’ve wasted a whole day doing nothing. (Patient 8) You don’t feel like doing anything…[when] you’re tethered to a machine. (Patient 5) They gave me one of them things, those, you pedal at dialysis… And that was hopeless. I didn’t like that one bit…. Too hard… I said “Nah, I’ll do it at home”. (Patient 12) Because at the moment I’m stuck in the chair for four and half hours. (Patient 5)
Difficulty imagining recovery from frailty	Interviewer: And what sort of things could you do to try and fix frailty? Patient 2: Oh, that’s something that I wouldn’t have a clue… If I could think of something, I - I’d try it. Yeah, of course I would. If anything goes wrong at any time… a car, a motorbike, a lawnmower, or anything. I could fix anything during my life, but not now. (Patient 6) But there’s you know, there’s nothing I can do about it at the moment. I know that… Honestly, I don’t know what I could do to improve it (Patient 11)
Desire to maintain the status quo	Interviewer: if you were to design an exercise program for people like yourself, what would it look like? Patient 1: I think walking. Um. Maybe yoga? What I – what I’ve been doing. That’s been one of my hardest, um, challenges to overcome. The - the future, what does it look like? (Patient 11)