Table 3 Thematic categories with themes, subthemes, representative quotes, and relevant SEM framework construct
Theme | Subtheme | Quotes | SEM Framework |
|---|---|---|---|
Social Support | Knowing a live donor who was a match | “I have a very, very, very healthy wife, so we had talked about if she was a match, which fortunately, she was a very good match.” | Interpersonal |
Social and financial support | “I got a lot of cooperation and assistance from our friends and work and the community in general.” | Interpersonal | |
Social connections to healthcare field | “We used our medical contacts because my brother-in-law, I have two brother-in-laws who are doctors, one of them that has nephrology as a… So, they gave us a little hint about what was coming so we could ask, is this coming?” | Interpersonal | |
Access to insurance and/or financial means | “So, I had excellent insurance, and I never had any issue with any of my payments or getting treatment approved or anything.” | System | |
Patient Agency | Knowledge of paired exchange donation | “But by the time we got to me actually needing the transplant, paired exchange was a system that was running like a well-oiled machine, and we just dropped into it.” | Individual, Interpersonal |
Being proactive in care | “I was always very inquisitive and active in my care. Maybe that helps, in that I was always proactive.” | Individual | |
Educated in navigating healthcare system | “When you have a disease like PKD, I don’t think people know it, including my mom, but the only reason I have a general understanding is because of my minimum education in medicine” | Individual, Interpersonal | |
Inadequate Social Support | Lacking access to insurance/financial means | “When I first got diagnosed, I wasn’t with [insurance] yet. In fact, I was just a cash customer at that time, and I was without health insurance. And this is prior to the [Affordable Care Act], so right away it was very expensive to get the necessary tests done, to find out that I had this.” | System |
Difficulty navigating donor evaluation and scheduling | “Finding a donor, getting through the process of donor evaluation, and just general evaluation. It’s a lot to deal with.” | Interpersonal, Institutional | |
Gaps in Knowledge | Lacking knowledge of the transplant process | “I don’t feel anybody ever checked in beforehand because I feel… I can’t say it’d have been prevented because I feel like my age… I still feel I had a hard head. But at the same time, I don’t feel that it was explained to me what’s going on and what’s going to happen.” | Individual, Institutional |
False information on kidney transplant in popular culture | “There’s so much mythology, and some of it is meant to just be entertainment…And even in a recent TV show…there was a scene where they’re all in the dialysis room and somebody brings up the illegal harvest of a random kidney and nobody stomps it down and points out that that’s nonsense.” | Institutional, System | |
Poor communication / use of medical jargon | “There’s a difference between a person who’s medically trained writing something for the lay person to read than if you had a lay person go and learn it and then write the literature… even though they read the literature, I don’t think it was informative enough” | Institutional, System | |
Institutional and Systemic Policies | Waiting to be put on organ recipient list | “Although I was under pain and sickness a lot. But yeah. Not to a point where it had to get to… I’m going to say a 2.0 creatinine or something like that to get on the waiting list.” | Institutional, System |
Chance events | “But they also noticed some spots on my lung, just secondary to the CT scan…So we canceled the transplant.” | Individual, Institutional | |
Lack of deceased organ donor availability | “I mean just the wait, you know, that three to five years it can be, I guess the average wait…So I would say, I don’t know, that’s not anyone’s fault, that’s just the system” | System |