Table 6 Thematic analysis themes and subthemes

Experiences of the CMR programme that facilitated subjective benefit

Interest in Mindfulness and previous experience

“I’ve done some yoga, and yoga nidra in particular, where you think your way around your body… when my kidneys first failed, whilst I was still on dialysis, I had some counselling and part of that was learning breathing techniques. So I’ve done similar things, but nothing actually called mindfulness.”

“It was an opportunity to help me become more at peace with myself and my thoughts.”

Integrating Mindfulness using techniques and practices to enhance awareness and compassion

“Mindfulness has really consolidated the fact that my feelings are valid. And that I can learn to understand them and ‘control them’. Meaning, my feelings and/or my thoughts are not necessarily… they are just that. They are things that pass through me.”

“The practices, I have been doing ones that I found beneficial. The one that I keep going back to is the body scan, because the likes of, with the anxiety I find it’s either in my chest, with tight chest or fast beating heart, or in my stomach, it goes into knots. And that helps me calm the physical sensations of that down, and then because of that, then mentally I am calmer as well.”

Continuing Mindfulness practice

“It’s really switching off from what’s going on around me. I come down to my shed in the garden, where I’ve got my office. So I can shut out the world and that’s really good. And it’s making me do it. Because I’m thinking, I’ve got to do it. Not because I have to do it, but because I want to do it.”

“I would love refreshers. You know like you go to see the consultant every six months or something, it would be lovely to have a wee quick session just to focus your mind. Even if it was away in the distance, you would know it’s coming. I think it keeps you mindful. “

Participants lived and shared experiences

Psychological impact of kidney disease and continuing impact of COVID-19

“I was diagnosed and then three weeks from diagnosis I was getting dialysed. So when it’s kind of traumatic that way, and you spend all that time on dialysis away from your family, that’s a struggle.”

“I’m still… very much so feeling the effects of COVID. Because I’ve been shielding. And I’m still semi-shielding now, so it’s been about three years. And when I feel very vulnerable… I feel like a quarter of the person I used to be.”

Shared experiences with other study participants

“I would say is that the benefit we got through talking with each other in the groups, was so beneficial. So beneficial. We need more of that. Absolutely more of that. Getting that connection. Getting an understanding. That feeling that you’re not on your own.”

“They want to talk to each other about their kidney disease. They are doing it anyway. So use those spaces. They’ve told us that’s what they are doing in the breakout rooms.”

Need for wellbeing support for people living with kidney disease

“You are dealing with something at that stage, that you know your kidney is going to eventually give up, very soon probably. How do you deal with that? You’ve got a major body part that keeps your body functioning, that doesn’t work. How do you cope with that in your mind? If you can be given a key to help that along, then yeah, for sure it’s going to benefit.”

“I felt as if I was falling at that stage, I was coming down one of them big circular slides. I just felt I was sliding and I had nothing to hold on to… mindfulness might have been better if I had it before I got an acute phase, if that makes any sense. I might have had those tools in place before, that it might have prevented those feelings of falling.”

Practicalities of CMR programme participation

Challenges and barriers to participation

“Life happens to these people. They become ill or they need to go into hospital. So I think it’s just anticipating that that will happen and having a plan for that.”

“I felt that I couldn’t really say any of the bad things that I’ve experienced, because I was this sort of golden shining thing, having a successful transplant for lots of years.”

Experience of online delivery

“You’re very safe in your own home. And you can mute or you can turn off the camera if you’re feeling a wee bit emotional.”

“What I would suggest with Kidney Care UK is, they may want to provide people with iPads, that those iPads are loaned for the duration of the programme. And that person doesn’t need to do anything but just click ‘join’ and everything is there for them.”

Adaptations for future delivery for people living with kidney disease

“I would have thought some sort of website with all these materials and stuff like that, and short presentations on some of the themes that the course has given, would give people an opportunity to refresh their minds.”

“I think if you use their lived experience, experts by experience, particularly around managing, like shaky leg, managing fatigue, managing a whole host of interesting symptoms that are medicine related. Managing machines that keep you awake. I think there maybe is in some of the sessions, where you could actually just give it over to that. Because I was learning from their enquiry. So I’d say if you look at the enquiry points and tailor the questions.”