Participant quotes that illustrate each theme that was identified as a barrier to living donor kidney transplantation in British Columbia
| Theme | Illustrative quote |
|---|---|
| Divided accountability structures | The other challenge, though, with doing that collaboration — you know, we would see it as being a spectrum of care. And as a clinician, I see kidney transplant as just being a spectrum of care for [a] kidney patient. Right? It’s part of their trajectory. But when [BC Transplant and BC Renal Agency] are different groups … there can be a predisposition to, kind of silo things. Which is trying to break apart, whose dollar is it that’s paid for which task, as opposed to just say, well, it’s a patient, it needs to get done and just get on with it. (Representative from BC Renal Agency 1) There are processes at BCT [BC Transplant] over which we at BC Renal [Agency] do not have authority. But some of the processes are a little bit inefficient, but part of that is because they don’t have the funding. But I can’t give them the funding because that’s not how it works. (Representative from BC Renal Agency 1) |
| Disconnected care processes | … a big challenge for us is — from the recipient side — is making sure that all the tasks that need to be done for them to get approved, worked up and approved, get done. It’s challenging just making sure that it’s clear who’s doing what, because the way it works here, a lot of it is done regionally and then they get referred to the transplant centre downtown. Sometimes there is a bit of confusion of who’s doing what and when things are being done. You’re sitting around waiting for tests and nobody knows if it’s done or not. (Representative from BC Renal Agency 2) Like, 3 years of me saying he’s failing and — anyways, that’s the problem, right? The system is clunky and doesn’t have a way to prioritize. (Representative from BC Renal Agency 1) [The pretransplant process] can be very disjointed and pieces go missing. (Dialysis centre social worker) I know that there is donor fatigue. There’s definitely donor fatigue there. (Transplant centre nurse) There is a lack of consistency between VGH [Vancouver General Hospital] and St. Paul’s, in terms of multiple areas actually, which is a problem. (Kidney Care Clinic nephrologist) |
| Missed training opportunities | I see other social workers that are new to the area who don’t understand because they just haven’t been through it, they haven’t learned about it. They don’t understand the transplant process and therefore they can’t support patients with that transplant process. (Dialysis centre social worker) I don’t really see a lot of trained transplant people. It’s basically on-the-job training — the people are here, let me show you what to do. (Pretransplant clinic nurse 2) I’m just frustrated that the people that are actually in the positions, aren’t trained in the positions. And the fact that administration seems to think that, well, everything works, so we’ll just continue on as it is. You know, we’ll bring one person in and we’ll train them and then we’ll bring another one and we’ll train them. And it doesn’t work. I mean, we can see it doesn’t work. (Pretransplant clinic nurse 2) |
| Inequitable access by region | The bad thing is if you live not within driving range of Vancouver, your incentive to get a living donor is potentially marred by the notion, a. you’ve got to be away from home for 3 months, b. your donor has to come from a way. (Representative from BC Renal Agency 1) [Kidney Care Clinics in Vancouver] have access to all that knowledge and education and processes, whereas in the regions it’s a bit different. We don’t have immediate access to that. (Pretransplant clinic nurse 1) |
| Financial burden on donors and recipients | I mean, I think everybody understands the financial benefits of living donor transplant. So, you know, this is a resource we are getting for free. So let’s put some money into it, for God’s sakes. It’s ridiculous. (Transplant nephrologist) But the hardest part for [my donor] was all of that time off and just the financial end of it, you know. Like she doesn’t have a husband, like I say, and 2 kids, and she has to pay rent and — or mortgage, I guess — and it was very hard on her. (Living donor recipient) My challenge is always that we don’t — the health care system and, you know, the clinicians, everybody who works to do transplant — we don’t want transplant or finances to be a barrier to transplant. But the reality is, is that it is. (Kidney Care Clinic social worker) |