The data were synthesized into subthemes for each level of racism: institutional (excluded and devalued by health system; disease stigmatisation; discriminatory body weight criteria, lack of power), personally-mediated (experiencing racial profiling; explicit racism) and internalized racism (shame and unworthiness to receive a transplant; loss of confidence in own abilities). A summary of subthemes is provided in Fig. 1 and selected quotations to illustrate and support each subtheme are provided in Table 1. Participants also had suggestions for addressing inequitable outcomes in kidney transplant services (Table 2).
Table 1
– Participant Characteristics
| Sex Female Male | 20 (50%) 20 (50%) | Marital Status Married/De facto Single/Separated Widowed | 28 (70%) 11 (27.5%) 1 (2.5%) |
| Transplant Status Recipient Patient not listed Patient listed Family Donor | 8 (20%) 10 (25%) 10 (25%) 8 (20 %) 4 (10%) | Not listed Reason Weight Medical Age Refused | (N = 10) 5 = (50%) 3 = (30%) 1 = (10%) 1 = (10%) |
| Age, years 20–29 30–39 40–49 50–59 60–70 > 70 | 1 (2.5%) 2 (5%) 11 (27.5%) 15 (37.5%) 10 (25%) 1 (2.5%) | Employment Beneficiary Full time Part time Retired Student | 17 (42.5) 9 (22.5%) 6 (15%) 7 (17.5%) 1 (2.5%) |
| Number living in household 1–2 3–4 5–6 Shared living | 25 (62.5%) 10 (25%) 4 (10%) 1 (2.5%) | | |
Table 2
Selected Participant Quotations
| Institutional racism Excluded and devalued by health system | For mum’s tangi (3–4 day funeral), for example, he (brother) missed his bloods… And you know [staff] not really understanding the kaupapa that is at play. That is really annoying for me… I know that a Māori person would understand that and that perspective and that’s why it pisses me off (31) I like getting a Māori nurse, the Māori nurse will treat you different from the other nurse, the Māori nurse wouldn’t do that to you. We are treated differently. (02) But basically what they’re saying in the stats is that Māori are too fat to donate, or uncompliant with their treatment regimens so they can’t be a recipient. And that’s got to change because it’s not that Māori can’t do it. You’ve got to ask why. Maybe it’s not a safe space for them to go to the hospital. Māori don’t know how to advocate for themselves. They get a feeling that they’re getting treated differently (38) I did think before I had a deceased donor I would like to know more about their background you know, so I understood where that person was from. Not that I am going to be picking and choosing of course, but it’s about whakapapa (ancestry), and you know just understanding them and where they’ve come from. (14) |
| Disease discrimination | You know with prostate cancer, there’s lots of awareness and everyone wears blue. Is that ‘cause there are a lot of white people dying with that? Lots of white women get breast cancer so we have a pink day and everyone knows about it. Jonah Lomu (Pacifika rugby football star) dies with kidney disease and what do we celebrate, him, him scoring tries. We don’t talk about his kidney disease, we don’t make a day about kidney disease. That’s systemic racism, that’s how I view it. It’s a brown disease (12) You know heart disease attracts a lot of funding and attention. Is that because it is predominantly a white disease? But you know kidney disease affects mostly Māori, and it gets no attention, so is there a bit of racism there I wonder? (14) |
| Exclusionary body weight criteria | You know what I honestly believe, they say weight is an obstacle, but I don’t believe for one minute that weight is an obstacle. I think it’s an excuse... And then they say, ‘but you have to handle the anaesthetic’, and I say ‘I’ve just been under anaesthetic’, and they say ‘oh yeah’ and they still have another excuse (02) So for Māori donors, I think weight is a big issue. They deny them getting through for that, with no support to lose the weight or deal with the rejection both for donors and people who aren’t able to get listed because of their rules. (38) My beautiful cousin in Australia offered and the doctor said ‘you’re too obese, you’re not going to do it.’ And she got really down that she couldn’t do it. I mean what a knock down! They didn’t talk to her about losing weight; just said ‘no’. (38) |
| Lack of Power | Māori don’t have much chance of doing things or getting things because we aren’t pushy enough and we don’t have anyone asking the questions for us. And we don’t have anyone guiding us from here to here, you know, saying ‘you’re here now, now you need to go here’ (02)] The lack of understanding, lack of education, being too shy to even ask (25) We don’t understand what rules you in or out. We don’t know the questions to ask when we are told you are off the list and how or whether you can even fight against that. We have to stick to the rules as they are, because we don’t know about them. But also it’s like, we actually are stuck in the rules, cause if we don’t stick to them we might be kicked off (27) |
| Personally Mediated Racism Experiencing racial profiling | I found it quite challenging when one of the doctors said to me ‘oh yeah you’re from XX, so you’ll have diabetes.’ I don’t have diabetes, I’ve never had diabetes in my life. (05) ‘Cause before they had asked have we got a house, a healthy house and a bathroom. They assumed ‘cause we were Māori we were after money and we weren’t. (01) I said can you call my taxi and she said “Sure, Camberley? [low socioeconomic suburb]” and I said, “No, Napier Westshore [higher socioeconomic suburb].” I’ve never lived there, that’s just an assumption based on my skin, and that’s the bias. And they are completely unaware of how that makes me feel. ( 12). |
| Explicit racism | I felt at times that I’ve been put in the brownie basket, if you like. And that’s come from the staff (16) In the ward where he [partner] was being looked after one of the nurses came and said ‘come and meet XX’s wife XX. Aren’t her grandchildren clean and tidy.’ And I thought what the hell’s that question! … And I have never had to face anything like that until I came into contact with the health system. ‘Oh xx they’re so clean and tidy!’ Of course they are! (01) And for my dad to ever pick up that somebody’s racist is pretty bloody blatant because honestly he lives in his own little world. He lives in this world where he’s just great and thinks everyone loves him. So for him to pick up on it, it’s pretty blatant. (38) |
| Internalised racism Shame and unworthiness to receive a kidney transplant | When it actually came to transplant, it’s not a thing that’s spoken of, within the realms of kidney patients. It’s not something that we talk about together, if we know it’s going to happen then we talk about it, if it’s a sure thing, but otherwise we don’t talk about it. (16) It’s not about shame or blame, it’s about improving things. ‘Cause a lot of people today you’re either diabetic or your kidneys [think] that it’s your fault you go there, and because you aren’t educated enough or understand what the outcomes could be we fall into that trap, or because they’re scared like I was, you’re left behind that closed door that people won’t open, ‘cause they’re scared of the outcomes, like I was. (16) |
Institutional Racism
Institutional racism is defined as differential access to the goods, services, and opportunities of society based on race. It is derived from structural racism that privileges white people across institutions and society and is codified in the policy, practices and resourcing of health (and other) institutions (14). Colonization further acts to maintain structural racism and privileges whiteness to normalize racist ideas in media, culture, social systems and institutions(15).
Excluded and devalued by health system
Participants said they felt alienated in the health system that was not designed for Indigenous, leaving them feeling disempowered and disadvantaged. Participants experienced transplant services that did not acknowledge or incorporate Māori values, cultural protocols and practices, known widely as tikanga Māori, causing disconnection and disengagement from staff and clinical processes. They said that the absence of tikanga Māori within healthcare aggravated previous negative experiences in the health system creating powerlessness and distrust.
Participants described how Māori health workers and non-Māori health workers with cultural competence had or had the potential to restore connection with health services through empathy, emphasising the importance of the “understanding of Indigenous values and practices in care delivery”(P16) and of “[making] a connection straight away”(P14). Participants wanted a health system designed by Māori, with “more Māori, to get in the positions to change the systemic racism which comes from the top” (P38). They described ways that transplant services could incorporate tikanga Māori to improve power, connection and engagement for Māori, such as the facility to formally acknowledge deceased donor whānau.
Disease discrimination
Participants discussed the profound lack of awareness of kidney disease and transplantation within Māori communities despite the high prevalence of morbidity. This lack of knowledge was attributed to discriminatory inaction through low levels of government funding for public awareness campaigning compared with other diseases that were more common among non-Māori (mostly European) such as prostate and breast cancer. Participants felt frustrated at societal inaction in the face of overwhelming need as kidney disease grew within the Māori community and questioned whether this discrimination was because kidney disease affected mainly “brown people”(P12).
Exclusionary body weight criteria
Frustration and anger were expressed by some recipients, potential recipients and donors regarding the body mass index (BMI) criterion for kidney transplantation, which they described as exclusionary, discriminatory and racist. Many potential recipients spoke about their experiences of being denied transplantation work-up because of their weight and that excessive weight was also a barrier for their potential kidney donors. Participants considered that BMI was used inappropriately, set at a level that excluded Māori from kidney transplantation. “If the [body mass] criteria was more relaxed or flexible depending on the case. I mean you can imagine if we were all white faces, would that change the criteria?” (P14).
Despite the fact some had lost weight to achieve the criterion, they had experienced “the goal posts changing” (P2) with body mass index targets for transplantation changing during the process as they reached their specified weight. Participants could not understand how they were suitable for some operations and associated anaesthetic but not for kidney transplantation despite the substantial benefits transplantation would provide to them, their whānau and the health system. They felt that the additional risks of surgery because of their weight should be a consideration, but this did not outweigh the disadvantages of dialysis, including the implications for their clinical and personal well-being. They also expressed frustration that there was a lack of funding for weight loss support including weight loss surgery, when the health, financial and social costs of dialysis were so high. “So I WAS the perfect candidate. But NO, I didn’t even make it to the interview stage then because of weight” (P12).
Lack of power
Participants described feeling unacknowledged within the health system, such that their individual and collective concerns were not “heard” (P19) and understood. Over time many felt isolated and disconnected, “I don’t see anyone on my side” (P2) and became despondent in advocating for themselves, “how do you fight that, when you are down the bottom of the pile” (P12).
They felt that “knowledge is power, and we don’t have knowledge. We can’t advocate for ourselves because we don’t know the words to use, we don’t understand the process and how we can drive it” (P27). They wanted strong advocates to speak up for their rights and demand policy change to fight for equitable outcomes regarding transplantation. One person stated “we need a person in a position that’s got power that can hold them accountable, and a system that’s not designed to fail Māori” (P2)
Personally-Mediated Racism
Personally-mediated racism includes prejudice and discrimination, where prejudice means holding differential assumptions about the abilities, motives, and intentions of others according to their race, and discrimination is expressed by differential actions, usually at a personal level, toward those others (13, 14).
Experiencing racial profiling
Many participants described feeling racially profiled within the healthcare system and how detrimental this was on their experience and interactions with clinicians. The profiling included clinician assumptions that all Māori had diabetes and the implication that therefore they were to ‘blame’ for their kidney disease, and that Māori all lived in areas of high deprivation or could not afford to dress or eat well. Some reported hearing conversations in clinical areas that labelled Māori as “non-compliant, they’re not following the rules, they’re being rude, they’re missing their appointments” (P38).
Many participants became visibly distressed talking about these experiences and “assumptions based on my skin” (P12) and talked about how this profiling impacted on their mental health and well-being. A donor felt a decision to initially refuse her being a donor because of her weight was based on a “racist stereotype of Māori” (P38) and she sought a second opinion which overrode the refusal.
Explicit racism
Participants identified times when they experienced explicit and direct racism. At times they felt this stemmed from a lack of cultural competence from staff, but other times they described being treated as an inferior culture or placed in a “brownie basket” (P16). Some described being “offered less” (P9) resulting in a different level of care or being given inadequate information or, “a feeling that they’re getting treated differently” (P38). This included potential kidney donors being told they were obese and declined donation as a future option without discussion about weight loss or targets. Future recipients and donors reported not being told about the transplant process or options, resulting in them having “to go find out myself” (P2).
Internalised Racism
Internalised racism is defined as acceptance by members of the stigmatized races of negative messages about their own abilities and intrinsic worth(13, 14).
Shame and unworthiness to receive a kidney transplant
For many participants, the prevailing views of society led them to internalise the belief that kidney disease was a consequence of their own lifestyle and lack of self-care, often in respect to diabetes, smoking or “unhealthy” habits. In these participants there was no identification of familial links to such disease and instead, many described being ashamed, causing further disconnection and disengagement. Self-blame occurred despite many knowing they had not received adequate primary care to prevent complications of diabetes or high blood pressure, and therefore had not been provided the knowledge or information to make changes early in their disease trajectory. Shame and disconnection led to feeling undeserving of a kidney transplant. Sometimes, this resulted in being “whakamā” (a concept of shame) (P16) and ashamed to ask questions about the potential for transplantation as they felt “you’re left behind that closed door that people won’t open, ‘cause they’re scared of the outcomes” (P16).
Recommendations from Participants
Participants described a number of recommendations to address the racism and poor service outcomes they had identified within the health care system. These ranged from development of national policy to compulsory cultural safety training for staff, to the refinement of exclusion criteria like BMI. These recommendations are presented in Table 3 and are discussed in the context of the literature below.
Table 3
Participant Recommendations
| Institutional Racism |
| Government funding and Policy Change Models of Care | • Appropriate resourcing for kidney disease awareness /Media campaigns • Increased resourcing to ensure cost-neutrality or recipients and donors in work-up and post surgery). • National Kidney Transplant Strategy to streamline services, enable more consistency, and be more conducive to Māori needs • Transparent pathways and communication of waiting times, criteria for being removed or reinstated on list • More sensitive and culturally appropriate psychological assessments • Increased counselling/support pre and post donation • Māori guidelines and acknowledgement rituals for whanau. • Māori cultural, spiritual support and advocacy • Community and marae-based education programmes or whānau wānanga /experience sharing • Access to knowledgeable support person to translate jargon • Māori advocates at both personal and systemic levels;(Māori buddy to provide support and guidance and help them navigate their way through the transplant process) |
| Personally Mediated Racism |
| Workforce development | • Cultural awareness training of staff • Increased Te reo and tikanga staff training. • Increase in Māori staff • Increase in Māori renal service leaders and advisory group members, those in positions to influence decisions and challenge racist policies, practices and behaviours. |