. 2022 Dec 6;8(3):478–488. doi: 10.1016/j.ekir.2022.11.012

Table 4.

Illustrative quotations for themes identified in the workshop discussions

Unpreparedness, shock, and pressure to adapt
The great unknown	It was just very, very overwhelming because we hadn’t had any time to prepare. It was just, “Here you go. You’re starting dialysis tomorrow”–patient (W2B3) When you first start, if it’s your first time ever, you don’t know what to expect and the doctors don’t really explain to you what’s going to happen. They just basically say, “Oh, come in at this time, and you’re going to start dialysis.” If you’ve never experienced it… you don’t know what to expect”–patient (W2B1) People felt thrown in the deep end, and a lack of education or schooling of what was going to happen. A lack of information–patient (W2B1)
	The thing that I found hardest about dialysis was not so much the physical stuff… but the notion of what’s going to happen to me, who’s going to do it, how’s it going to work. I got quite anxious–patient (W1B2)
Shocked by the harsh reality	Dialysis is my hardest thing–patient (W1B1) Dialysis itself as a treatment is a tiring one–patient (W1B1) … [the] burden of being on dialysis 3 times a wk and spending the next day recovering–patient (W1B2) I found it exhausting…I know I was benefiting, but I didn’t feel it–patient (W2B2) Yeah, I find my only really good day is Monday–patient (W2B3) The dialysis machine started and my blood pressure fell through the floor–patient (W2B2)
	…realizing that without those machines you’re going to die–patient (W1B2)
No choice and no control	It was just so much pressure. Learning a new way of life, learning new restrictions on your life. Losing that control over your life. What you can do. It sort of strips you as a person, as well–patient (W1B2)
	Everything fits around my dialysis–patient (W1B1) What you can and can’t eat and what you can and can’t do–patient (W1B2) Yep, you don’t have much of a choice–patient (W2B3) It was a big toll on my family as well, because I am the only child. My dad worked full time, my mum worked full time. She had to go and get a job [at] night… because we weren’t given a choice of what time you can come into dialysis, you were just given that time–patient (W2B1)
	They start moving you to and from different centers, and different times. You might do a morning 1 day, then an afternoon, then a twilight. And you can’t get into a proper routine doing that–patient (W2B1) You’re expected, by the doctors, to drop everything–patient (W2B1)

Disruption to daily living
Loss of lifestyle and livelihood	I’m quite active myself, and have lots of other hobbies that I don’t want to give up on or stopping that way. I want to be able to do everything that I do now–patient (W1B1) I had to quit my job because I wasn’t able to work 2 days and work wasn’t able to take me on for those 2 days–patient (W2B2) I didn’t fully understand how this redefined my whole life–patient (W1B2) If I could do it 2 times a week, that’d be great. I work full-time and that’s my biggest concern in starting dialysis. Will I have time to work?–patient (W1B1) I ended up leaving school, because I just found it too hard to do school and to do dialysis–patient (W2B1) I’ve had to retire from work, I’ve had to stop doing some stuff, lifestyle wise–patient (W2B2)
Time stolen by dialysis days	.. you’ll miss out on things because the only days off that other people would have are your dialysis days. You’ve got to work your social life around dialysis–patient (W2B3) .. 85% of the time, if I’m not at the renal unit here or at home, I’m in hospital getting checked up and seen–patient (W2B2) We had so many appointments. If we weren’t at the hospital dialyzing, we were at appointments the other 2 days because Mum does it Monday, Wednesday, Friday. The other Tuesday and Thursday, we were at appointments. We had absolutely no days free. It was just really exhausting, so only doing it 2 days, I think would have given us an extra day to just do our thing…–caregiver (W2B3)
Struggling to protect quality of life	Mortality, I’m not worried about that. I’ve been dealing with this for too long to worry about it, but it’s what I live with daily that I’m more concerned about–patient (W2B3) Quality of life is very important to me. In fact, I don’t think I’d go on dialysis again if I had to–patient (W2B2) In terms of quality of life, my hemodialysis most certainly has eaten into that big time. It would be wonderful to only have 2 days a week of hemo and therefore have 3 days during the week when you’ve got more life to consider as being quality.–patient (W1B2) I think 99% of the people would choose the 2 days a week knowing the fact that having an extra day of dialysis would take away from their living, from their quality of life.–patient (W2B2) But day by day, quality of life is very low because I have to go to in-center.–patient (W1B1) It’s very difficult to maintain a good quality of life with your 2 days off per week–patient (W1B2) If you don’t have quality of life, you really don’t have anything–patient (W2B1)

Threats to safety
Fear of life-threatening complications and concern for treatment adequacy	I’ve heard this saying before, that when you have that 2 days break on the weekend, whether it’s Saturday, Sunday, or Monday, it’s called "the death break"–patient (W2B1) And then the mortality. Well, with kidney failure, that’s one of the major things that you always think about. Like all the, “It’s not good for your heart. It’s not good for this. It’s not good for that. The fluid overload as well.” There’s so many things–patient (W2B1) If you have a high potassium, that can cause the pressure on the heart, fluid overload can put pressure on the heart so that comes back to the mortality–patient (W2B2)
Worried about vascular access complications The trauma of hemodialysis	There were a few of us who had issues around vascular access and we thought the less amount of times people have to access fistulas was good–patient (W1B1) Are they going to hit it today or not? How many times is it going to take? Am I going to have 2, 4, or 6 attempts today?” If you have a blow or all the other things that go along with it, it just can be a little bit of a pain, literally–patient (W2B3) Number one was looking after your fistula, that was my concern. For it to be needled correctly, and to be looked after, and not be infiltrated, which has happened–patient (W2B1) I think the most traumatic thing for me was it happened really suddenly and getting the catheter put in, it was very painful and it was just a horrible experience–patient (W2B2) One of the key things I was worried about was infection because the thought of being needled, 2 needles in your arm 2–3 times a week and just maintaining that and not having issues with an infection–patient (W2B3) There was a time when the dressings popped when I was driving and blood went everywhere–patient (W1B2) The thing I think is the biggest risk here, for me anyways, what I’ve seen [from] a lot of research around kidney disease and kidney health is a lack of acknowledgment of the psychological concerns–patient (W1B2) I went through a massive grief process when my transplant failed–patient (W2B1) I think one thing that hasn’t been mentioned... is the emotional and psychological issues that you obviously have when starting dialysis–patient (W2B2) …a lot of anxiety and stress. It can bring on a lot of depression if you concentrate on it too much–patient (W2B1) We’ve lost 3 of our people; and particularly our last person who passed away, that hit us very, very hard–patient (W1B2) …that grieving process again, of, “Oh, no, I’m...” And the depression would set in, of, “Now, this is... How long now do I have to... How much longer is this going to go on?”– patient (W2B1) [Incremental HD] It would make it not so daunting and help people ease into it so they’re not thinking, “Oh, this is going to take up this many days in my life,” and mentally help them prepare for it, if they ease into it–patient (W2B3)

Threats to safety

Fear of life-threatening complications and concern for treatment adequacy

I’ve heard this saying before, that when you have that 2 days break on the weekend, whether it’s Saturday, Sunday, or Monday, it’s called "the death break"–patient (W2B1)
And then the mortality. Well, with kidney failure, that’s one of the major things that you always think about. Like all the, “It’s not good for your heart. It’s not good for this. It’s not good for that. The fluid overload as well.” There’s so many things–patient (W2B1)
If you have a high potassium, that can cause the pressure on the heart, fluid overload can put pressure on the heart so that comes back to the mortality–patient (W2B2)

Worried about vascular access complications
The trauma of hemodialysis

There were a few of us who had issues around vascular access and we thought the less amount of times people have to access fistulas was good–patient (W1B1)
Are they going to hit it today or not? How many times is it going to take? Am I going to have 2, 4, or 6 attempts today?” If you have a blow or all the other things that go along with it, it just can be a little bit of a pain, literally–patient (W2B3)
Number one was looking after your fistula, that was my concern. For it to be needled correctly, and to be looked after, and not be infiltrated, which has happened–patient (W2B1)
I think the most traumatic thing for me was it happened really suddenly and getting the catheter put in, it was very painful and it was just a horrible experience–patient (W2B2)
One of the key things I was worried about was infection because the thought of being needled, 2 needles in your arm 2–3 times a week and just maintaining that and not having issues with an infection–patient (W2B3)
There was a time when the dressings popped when I was driving and blood went everywhere–patient (W1B2)
The thing I think is the biggest risk here, for me anyways, what I’ve seen [from] a lot of research around kidney disease and kidney health is a lack of acknowledgment of the psychological concerns–patient (W1B2)
I went through a massive grief process when my transplant failed–patient (W2B1)
I think one thing that hasn’t been mentioned... is the emotional and psychological issues that you obviously have when starting dialysis–patient (W2B2)
…a lot of anxiety and stress. It can bring on a lot of depression if you concentrate on it too much–patient (W2B1)
We’ve lost 3 of our people; and particularly our last person who passed away, that hit us very, very hard–patient (W1B2)
…that grieving process again, of, “Oh, no, I’m...” And the depression would set in, of, “Now, this is... How long now do I have to... How much longer is this going to go on?”– patient (W2B1)
[Incremental HD] It would make it not so daunting and help people ease into it so they’re not thinking, “Oh, this is going to take up this many days in my life,” and mentally help them prepare for it, if they ease into it–patient (W2B3)

Hope and future planning
Preserving kidney function for overall wellbeing	But the rationale behind the incremental dialysis in India is, no matter what stage you are in, they always start on 2 times a week to prevent or to protect the residual kidney function. Because I never lost my residual kidney function but I was still producing urine, half a liter a day even after or closer to my transplant–patient (W1B1) …residual kidney function and just with the capabilities of having less dialysis so I can fit in work and the activities, and symptoms–patient (W1B1) But if you can approach it more gently with less sessions and that is sufficient for you, then that preserves kidney function. That prevents complications coming in the future so I think that’s quite important–patient (W1B1) If you’re extending the life of your kidney for as long as possible, then that’s going to affect how well-nourished you are, and how ready you are feeling to participate in life events–patient (W2B1) I think incremental dialysis plays a crucial role in preserving the residual kidney function–patient (W1B1)
Being part of the family	And for me, pregnancy, and fertility. I’m 30, don’t have children, want to have children and how my kidney function will affect that in the future and all that is really important–patient (W1B1) When you’ve got people who are reliant on you…you want to let them know that things are going to be okay, for a least a little while–patient (W2B3) She comes into my room at 6 o’clock in the morning on the days I’m not doing hemodialysis. So that’s why it’s a bit of a priority because when I’m off dialysis, she wants to go on a bike ride and go to the beach–patient (W1B1) I had to go to Perth for a funeral for my mother-in-law, and the closest dialysis center they could get me in was 60 kms away from my dad's place and obviously the travel... I hired a car so I had to do dialysis and I had to travel back–patient (W2B2) I still have a little bit of anxiety thinking about that, what does the future hold for my son and I… I think that the incremental dialysis for a new patient, I think it’d be very beneficial for anyone starting–patient (W1B2) I missed a whole season of my son’s basketball because I was dialyzing on a Friday night when his games were. I’d finish just as his games were over. I missed an entire season–patient (W2B3)

Hope and future planning

Preserving kidney function for overall wellbeing

But the rationale behind the incremental dialysis in India is, no matter what stage you are in, they always start on 2 times a week to prevent or to protect the residual kidney function. Because I never lost my residual kidney function but I was still producing urine, half a liter a day even after or closer to my transplant–patient (W1B1)
…residual kidney function and just with the capabilities of having less dialysis so I can fit in work and the activities, and symptoms–patient (W1B1)
But if you can approach it more gently with less sessions and that is sufficient for you, then that preserves kidney function. That prevents complications coming in the future so I think that’s quite important–patient (W1B1)
If you’re extending the life of your kidney for as long as possible, then that’s going to affect how well-nourished you are, and how ready you are feeling to participate in life events–patient (W2B1)
I think incremental dialysis plays a crucial role in preserving the residual kidney function–patient (W1B1)

Being part of the family

And for me, pregnancy, and fertility. I’m 30, don’t have children, want to have children and how my kidney function will affect that in the future and all that is really important–patient (W1B1)
When you’ve got people who are reliant on you…you want to let them know that things are going to be okay, for a least a little while–patient (W2B3)
She comes into my room at 6 o’clock in the morning on the days I’m not doing hemodialysis. So that’s why it’s a bit of a priority because when I’m off dialysis, she wants to go on a bike ride and go to the beach–patient (W1B1)
I had to go to Perth for a funeral for my mother-in-law, and the closest dialysis center they could get me in was 60 kms away from my dad's place and obviously the travel... I hired a car so I had to do dialysis and I had to travel back–patient (W2B2)
I still have a little bit of anxiety thinking about that, what does the future hold for my son and I… I think that the incremental dialysis for a new patient, I think it’d be very beneficial for anyone starting–patient (W1B2)
I missed a whole season of my son’s basketball because I was dialyzing on a Friday night when his games were. I’d finish just as his games were over. I missed an entire season–patient (W2B3)