Table 4 Illustrative quotations of themes

Extensive LDKT education throughout treatment

I did have fears and questions about the process…What are the odds that the surgery will work and that my dad’s body will accept my kidney? (Donor)

[37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63]

Knowledge gaps and

misconceptions

And I just felt so helpless and it’s been so many times where, as a family member, I feel helpless because I think, if I could go on there as a family member and go okay, here’s information. [56]

I did want to know how that works…was everybody going to go on the table at the same time? Do they take out all the kidneys at once? How does that work? (Recipient) [59]

Person of trust as

educator

…I would love to get the information from a person that was getting dialysis and…from a renal doctor and my primary doctor. If I needed that type of information, I would contact that type of doctor first. (69-year‐old female, CKD Stage 3) [47]

Early delivery of LDKT

education

If someone offers, I’d certainly run with it, especially after being on dialysis for the time I’ve been on now…At the time I wouldn’t take one off that person because they’re a pain in the arse, but it’s got to the stage now where there was that discussion [in the media] about the paedophile or some guy that wanted to donate. Someone asked me, ‘‘Would you take it?’’ In a flash, yeah. They said, ‘‘Oh wouldn’t you feel…?’’ I said, ‘‘You haven’t been on dialysis for day after day, month after month, year after year. Because if you had, you wouldn’t think twice. [52]

Postoperative Support

Maybe it’s not sort of mandatory, I know every doctor’s gonna have their own opinion on things, but it just would be nice to know how you’re meant to look after yourself afterwards. (Woman, Donor, 40s) [58]

Get good support for yourself afterwards, cos there’ll be a lot of support for the recipient. Make sure you’ve got someone that will care for you. Because that’s important too. [51]

Shared Learning, Social Support, and Family Dynamics in LDKT

Now my family are talking about a transplant. They need some information. We need to talk together about this and we all need information about what donating a kidney involves. It is a bit hard to talk about it though because my family doesn’t get together that often. [38]

[37,38,39,40,41,42,43,44,45,46,47,48,49,50, 52,53,54,55,56,57,58,59,60,61,62,63]

Donor and recipient

relationship

As far as sex goes, I am frightened to have sex because I’m on the immunosuppressants, every time I have sex I get a urinary tract infection. And I just don’t want them there, they’re too horrible and so I always decline it. (Female; Spousal recipient) [42]

Involve family & friends

in LDKT education

I just tried to get fully educated on it, as did my family… It lessened all the concerns a lot to the point where there wasn’t a lot of concern going into it. [53]

Families with multiple

chronic illnesses

I mean especially when you’re talking years. Now not only is that one person affected, it’s affecting the whole family. And from you on down to your children or whatever. Everybody is affected, not just you and your spouse. It’s going to be everybody. (Female) [59]

Group education

I didn’t really listen to other people, but when I saw that fella [who’d had a transplant], I looked at him and said, ‘‘How long you had your kidney?’’ He said, ‘‘Eight years,’’ and he’s still going so that made me think again. [37]

Diversity and Inclusivity for Minorities

Let’s put the effort in, before we approach patients, to get them to engage we need to know how living donation sits within their culture” (Female, Specialist nurse). [40]

[38,39,40, 41, 44, 43,46,47, 51, 52, 54,55,56,58,59,60,61,63]

Health literacy

That would have been helpful. You know, videos and courses and things like that, you know the coordinators, to whom you‘re connected. I felt like they just did not have the bandwidth to be responsive to questions. So, if I could have found the answers myself, then that would have been easier. (Recipient) [52]

Cultural sensitivity

“things that most Hispanics do not know,”…“very important because, as Hispanics, we have many myths that are harmful… and they showed us that it is nothing like what people say.” [54]

Place-based

discrimination

I’m very lucky that we have a pathology department, or collection centre, in [nearby regional town]. For a population of only 1200 people, we’re truly gifted. Yeah, just go around the local medical centre when they want all these blood samples.[51]

Communication barriers

They [staff] don’t give it [information] the right way. Instead of like trying to teach them, they come across like they know everything and they don’t compromise on that, hey? When they come across like that everyone’s too scared to ask them questions why, so then they just shut up and think, “Well I’ve been told this, so that must be it. [38, 39]