Table 3 Selected Participant Quotations
1. Strong desire for transplant | ||
Seeking normality and freedom from dialysis | “I’m tired of being sick. I don’t want to be tied down for 4 h three times a week” [18] “I’d like any kidney, as long as it would keep me alive, I could get back to [home] then ... My family depends on me.” [12] “I can’t go [home] and I’m really missing my friends and my family … I really want to be able to go home” [14] “My brother in law is waiting for a kidney transplant …. He has that dialysis and it makes him weak. He can’t do much of anything anymore” [15] | |
Wanting to reduce burden of disease within community | “Four years ago I decided that I wanted to be an organ donor. Our elders are dying because of these things and we can do something about that” [15] “Organ and tissue donation is essential and we need it badly on the reservation. People are waiting for kidneys you know” [15] “From the time of first diagnosis, I had volunteered myself as a kidney donor and was very keen about a pre-emptive transplant” [20]. “It would make other people live … you’d be saving somebody’s life … they’d have their life back” [13] “Attitudes need to change, because your own people are needing these body parts” [17] | |
2. Lack of partnership in shared decision-making | ||
Receiving inadequate information | “We need information because I think some people don’t always understand how they would be helping other people. You need to talk to the tribal leaders and make videos and booklets that teach about these things. Our health committee should help too. We need to get the word out in meetings and on the local radio” [15] “There probably would be a little bit of fear just because there’s not enough education on it “ [14] “I didn’t really get much information at all. It could have been much better than it was … Now it’s two years later and I’m just starting to find out about transplant” [14] “They should come around and keep you informed, I think, I seem to be starved of information about what is happening inside.” [11] | |
Ineffective communication | “They [staff] don’t give it [information] the right way … 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” [14] “[The doctors] started telling me what’s going on and that. But they had a very funny way of communicating with people. When they talk to us they need to bring it down and explain it to us.” [11] “I don’t know how to talk to the nurse or doctor. He comes down here and just checks out how we’re looking after our body. It’s not enough time” [11] “There’s a whole lot of us who just don’t understand what’s ging on. They know though, the doctors and the nurses know, but they don’t tell us. They don’t talk with us and we’re oblivious” [11] | |
3. Barriers to live kidney donation | ||
Difficulty asking | “It’d be like asking for money, in a way. It’s not an easy thing for a donor to do – there is a risk to their health, there’s the surgery and recovery that they have to go through, so it’s not...it’s not a minor request, it’s...it’s pretty major” [17] “No-one’s offered...like I’m from a family of nine, and none of them have offered me a kidney. So if they’re not gonna offer, I’m sure as heck not gonna ask” [17] “I wouldn’t mind if it [LKD offer] was genuine - from the heart you know … that’d be fine. But I feel with the younger brother, maybe he’d be on my back.” [14] | |
Apprehension about impact on donor | “I also think that many families … do not want the other person to be harmed” [17] “If my Pa donates, and then he dies on the day, well then it’s all on me” [17] “I mean, who knows...In years down the [track], their kidneys might fail and [but for] that one kidney that you might take off them, they could be alive” [14] | |
Avoiding additional financial burden | “I was still employed on the island, but I had to miss a lot of work. Moreover, the expenses involved in transportation, accommodations, and meals were extremely distressing” [20] It was very tempting at times to feel desperate as if all odds were against going through the transplant, given the costs and geographical travelling challenges [20]. | |
Fear of complications | All I know is that when I was staying at the hostel here a lady came down from Alice Springs for a transplant and when she went back a couple of months ago, she passed away. Yeah that’s what I’m scared of” [14] “What if things went wrong, what if one of us dies during the surgery, what if the kidney fails …? My mind was in a spin” [20] “Like a double edged sword, there is health now, but also the fear of illness recurring and of transplant failure and rejection.” [17] | |
4. Cultural considerations | ||
Influence of traditional values and beliefs | “If there was any trouble, it would be a throw-back from that transplant … just as if a spirit had taken over an action” [12] “I was made with the parts I have and that’s the way I want to go and I wouldn’t donate my parts either because they’re mine not anybody else’s. You come into this world with your own parts and you leave with your own parts” [13] “Pacific Islanders and Māoris are probably the worst for actually giving up body parts...and yet we’ve probably got the biggest demand out there for it...a lot of that is our own cultural beliefs, you know, that you go into the earth all in one piece, and all that, but, yeah … probably need to do some more work around our people’s beliefs.” [17] “It is kinda taboo to take another person’s body part and put them in yours … A lot of elders don’t approve of it … why do you want to bring any kind of weirdness into your family, evil kind of thing.” [18] “Because God is in each of us then we are related and that’s why we call it mother earth and are all related in that way. We need to preserve that spirit and (organ donation) gives a true understanding of what kindness is all about, the miracle of healing.” [13] | |
Reconciling traditional values with pragmatic need | “No, some may have [reservations], but there is that many people with renal disease that that should overcome any cultural things.” [14] “If I’m gonna get well, I gotta get (a kidney) … I’ll do a karakia (prayer), and make use of the new one” [17] “Every Native American culture kinda frowns upon the fact that you are getting a kidney from a cadaver … For me it is a lifesaving procedure. It is giving you your life back and I’m very good if a get a cadaver.” [18] | |
5. Experiencing lack of cultural competence | ||
Struggling with prejudice and ignorance | “Awareness at the hospital is important. They don’t know much about our beliefs.” [15] “I think it’s a cultural thing too. They [renal staff] don’t know whether it’s culturally appropriate to even ask that sort of thing” [14] [Someone] should tell the doctor because some Aboriginal people who are dialysing, they are finding it very hard from our own family, because that’s what the ancestor say. They (family members) say, if they give us a kidney and we die middle of that, maybe after 9 years, or whatever, we pass away and we’ve got their kidney. They think we will haunt them … And no-one has explained that to the doctors” [14] | |
Mistrust of clinicians and health system | “I’m very sceptical right now. I believe in tradition. I’m on apole where I could fall either way. It just seems like people’s bodies are kept for longer periods of time [at the hospital] if they are organ donors and I don’t think I want my body to be held up. I want it to be put to rest.” [15] “If you die up here they don’t look at those things (traditional beliefs and requests regarding kidneys). They don’t look at your driver’s liscence. They just send you to the mortuary” [15] “I blamed the doctor because they the one made me think nothing, diabetic and kidney … ..I still blame them [for not telling me earlier]” [11] “You don’t go knocking on their (health professionals) door, [it’s a] danger one … The door is locked. They sit behind closed doors” [14] “I have no idea either [if I am on a transplant list] – I don’t even know that. Well to tell you the truth, I don’t even know what transplant they’re talking about – they just say ‘transplant’, you know ‘kidney’” [14] | |