Cultural health literacy: the experiences of Māori in palliative care

Recruitment

In September 2012 the research team advertised open hui (meetings) at five palliative care centres from two mid-North Island regions. The chosen regions included large urban, small urban and rural environments; specialised palliative care settings (hospital and community-based specialised hospice services); and generalist services (including primary care providers, both Māori and ‘mainstream’).

The hui aimed to introduce the study to people and organisations with an interest in palliative care, and included between 20 and 30 patients, whānau (family), carers and service providers at each event. Such hui are an important first step in research with Māori to seek approval for the study to proceed in selected regions. At the same time, we sought advice about the identity of topic experts to function as key informants; six key informants were recommended by hui participants and subsequently invited to participate in interviews.

Patient and whānau details were supplied to us by health providers. Each person was contacted by a Māori interviewer and invited to participate. Health professionals were invited via their workplaces to participate in focus groups.

Data collection

Semi structured kanohi-ki-te-kanohi (face-to-face) interviews were held with two patients and 19 whānau carers over a period of 3 months in 2013. Ten of the interviews were conducted one-on-one, while the remaining five were conducted in whānau groups of between two and five participants. During these interviews we gathered information on the way the participants used palliative care services, how they obtained health information, what the positive aspects of the palliative care services provided were and what could be improved. The interviews lasted from 30 min to two hours. All except one were recorded and transcribed. Data from the non-recorded interview was in the form of notes written by the interviewer and agreed to by the whānau.

Six key informant interviews were individually carried out with a palliative care medical specialist, a service leader involved in developing culturally specific responses to patients, two Māori service managers, and two Māori health team leaders. All the interviews with the key informants were recorded and transcribed.

Ten focus groups were held with a total of 54 health professionals providing palliative care services and were facilitated by Māori and non-Māori researchers. Most focus groups numbered approximately five, although one group had 15 participants. The participants came from a range of disciplines including: primary and specialist care nurses; general medical practitioners and clinicians; health psychologists, social workers and chaplains; kaumātua (elders); Māori health professionals; managers, administrators and co-ordinators. Focus group participants were asked for their perspectives and understanding about Māori access to palliative care services; health literacy and palliative care for Māori patients and whānau; the health literacy demands of palliative care; and how they considered that services and health professionals took these health literacy demands into account when working with Māori patients and whānau. All the focus group interviews were recorded and transcribed.

Data analysis

The interview transcripts were analysed to elicit key concepts and recurrent themes, using a general inductive approach (19). Data from each participant group—patients and whānau, health professionals, and key informants—were viewed as equally authoritative during the analyses, with the same process followed for all. As the themes were developed, it became clear that there was a measure of general consistency across all three groups. The trustworthiness and reliability of the general inductive approach was supported by sharing analysis of transcripts among the research team, and reviewing the analysed texts amongst team members. A consistent analytic template consisting of codes, categories and supporting quotes was used to assist internal consistency in data handling. Member checking or respondent validation was used by presenting our preliminary analyses at five hui with the research communities involved. At these hui there was participant engagement with, and agreement on, the categories and themes that had been developed from the data.

The emotional context

The health literacy demands associated with palliative care were acknowledged by all our participants to be wide ranging and complex. Whānau were negotiating the acquisition of new knowledge and skills in relation to intensive physical health care needs within a context of shock, grief and impending loss.

I was trying not to cry. … I’m exhausted and am struggling to look at the nurse. I’ve become teary. I’ve tried so hard not to cry in front of my beautiful father. (Daughter)

[Whānau] have to take on board so much information and the knowledge of their loved ones’ time being limited . . . and then on top of that we have got all the health professionals, different environments, and the jargon, different people that come in, learning how to do wound care, or maybe stoma care, it is mind boggling when you think of what people have to do. (Māori nurse)

During the interviews whānau described the importance of understanding what was happening to their loved one and the ability to predict what would happen next. However, in the palliative care environment they were often too shocked and upset to fully grasp the current situation. This was exacerbated when health professionals did not tell whānau that active treatment was being stopped, or they did not clearly tell the whānau that death was inevitable.

When we [moved to another hospital] my understanding was that he was going into the intensive care unit. I didn’t realise it at the time but . . . my husband was never going to be admitted to intensive care. But no one told me that – no one told me anything. (Wife)

It has been hell. I didn’t know what palliative care meant – I guessed it meant dying but what does it mean? No one explains anything, they give you pamphlets. . . There is so much information and it is so confusing. (Wife)

Culture

The shock and grief that attends involvement with palliative care was worsened for our participants by the services’ disregard of Māori tikanga (values and customs). These included recognition of dying as a sacred process; the involvement of whānau visitors and caregivers; modesty; how physical needs are managed; traditional healers and the use of prayer and songs; and the importance of knowing and connecting to the people who are providing information and care. One kaumātua (elder) noted that ‘when you come into these places [hospice] they expect you to leave tikanga at the door. They’ve got no place for tikanga’. When he spoke to us, this man appeared deeply sad that his lifelong values and protocols were threatened by a health care service. His role in the hospice was to support Māori patients and whānau, but he clearly viewed his role as a battle against the hegemonic nature of health services.

The connection between late presentation and tikanga was also highlighted by a Māori hospice advisor, who told us that ‘Māori have their own protocols, so when hospice comes into play with Māori in this sort of way, Māori tend to take a back step’. This was further illustrated by the following quote that reflects the protocol of reciprocity;

Well you know, when I was growing up, we had to take a plate, whether it be a bread and a butter, and that’s the thing. I think hospice has got to let them bring what they want to bring, instead of saying, ‘Oh no no, it’s alright, they’ve got it all here’. That’s not the issue. The issue is, this is something I brought to share. (Patient & husband)

One of the underpinning assumptions of Western health care is that pain should be minimised or eliminated, however, findings from this study suggest that there can be value in pain, and in fact there is mana (pride, prestige) in managing it alone. It was also clear that engaging with services that are associated with dying had connotations of giving up the fight to live and surrendering to death.

You are obliged to put up with that pain, because it’s been given to you by God and trying to circumvent that by taking pain relief is trying to circumvent God and therefore we don’t do that. … that’s a very hard concept for [nurses] to go along with, or even understand. … And you’re asking them [patients and whānau] to understand information from a practical point of view and scientific point of view, and that’s just not where they’re coming from at all. (Māori nurse)

They wanted her to go to hospice, and for her in her mind was no, hospice is the last place that you’re ready to go out. So she’d never go there. (Cousin)

Those [hospice] nurses are my lifeline but [husband] won’t let them in the house. He says if they come in that means he is dying and he isn’t dying. So the nurses and I meet on the lawn or the front steps and they give me the drugs he needs. (Wife)

When there is this level of miscommunication between potential patients and services that purport to care for them, it is unsurprising that many Māori avoid accessing palliative care for as long as possible.

Delayed access

Whānau and health professionals both reported that delayed access to palliative care was a common phenomenon. Late access resulted in limited time to form relationships, effectively share information, access satisfactory support, or make arrangements for the patient’s preferred death experience. Late referrals to palliative care were also reported to increase distress for health professionals.

The other thing that I’ve found is that often families don’t want us. They’re the families that we receive really late and they’re the patients who are literally dying . . . So we have to try and break down that barrier and in doing so, I mean by the time we do it, the patient’s died. (Non-Māori hospice nurse)

. . . it is so awful, because I haven’t had months to build up a rapport and then you are going in and saying ‘mum’s got days, just bring this wedding forward.’ (Non-Māori hospice nurse)

Sometimes accepting palliative care was just too complicated; patients were confused by increasing amounts of information that was often inconsistent or incomprehensible, and were too ill to have the energy to do something new.

It didn’t help that the [physiotherapists] came in [to the family home] before that and the [occupational therapy] department came in after that to put some things in his house. He got mixed up about who was who . . . the process of that was too much; he didn’t even understand their language. (Māori nurse)

Sharing information

In palliative care the giving and receiving of information was vitally important. Some participants reported health professional and service processes that kept patients and whānau informed and empowered.

Oh the way she spoke, the way she interacted with us . . . she was really lovely, really informative . . . He was happy with her. She went right through the medication . . . saying that he can increase that whenever; there won’t be any problems with it. (Wife & daughter)

I would only ever tell someone what they wanted, if they were asking about it. . . Our nurses are really good at not forcing information that they don’t want. Lots of people don’t want to know everything about it. They just want to know what they want to know. (Non-Māori hospice manager)

Other participants reported less than ideal health literacy practices on the part of the health professionals.

So we were trying to get [the doctor] to – don’t talk to us like we’re idiots – talk to us and explain to us what you’re looking at. (Wife & step daughter)

He [specialist doctor] always just told us. There’s no conversation. (Daughter)

Often you give people lots of stuff to read, but when you go back the next time, not only can they not find it, they don’t even know that they’ve had it. (Non-Māori hospice nurse)

Sometimes the information provided was simply too overwhelming for the whānau to absorb within a relatively short time frame.

You’ve just been told that your loved one is going to pass away shortly. Do you have any questions? Well – you know? All within that five minutes. (Daughter)

We were told on the Monday, I brought him home on the Wednesday and he passed on the Friday. (Daughter)

When whānau were unclear about what was happening, they ended up having to try and interpret what health professionals were saying.

It was more what they weren’t saying as opposed to what they were saying. (Wife & daughter)

She [allied health worker] said she was gonna come and see Mum on the Wednesday and I thought, oh, you must think she’s still gonna be alive on Wednesday, geez that’s promising. (Daughter)

Health literacy strategies

A particularly important finding from this study involved the range of strategies whānau employed to help them understand their loved one’s situation and prognosis. In the face of sometimes overwhelming barriers whānau drew on their own strengths, close supporters and technology to inform themselves and protect their loved ones.

I was back and forth on the phone to my aunty . . . she’s a social worker. So I had to ring her up and say, ‘Look they’re not gonna [help us],’ and she goes, ‘No, you get back on the phone and you get . . .’ you know. So yeah, I just kept on doing it. (Daughter)

But that’s another thing the internet was good for, is the medication, and the side effects, and how all her medications, all the stuff she was taking, would affect whatever else she was taking. (Daughter)

They used long words and didn’t explain and so I would try and remember what it was and write it down and then look it up on Google. (Wife)

We had a red big folder where if you asked us for any medical records, anything, prescription slips, we got it all organised in tabs. So what do you want? (Wife & daughter)

When my mum passed away, my mum’s sister ended up getting cancer too, so I passed the book [diary] on to my cousin saying, ‘Take notes from here cousin, so that you know . . .’ (Wife)

Generally, these specific health literacy practices were in response to barriers related to poor communication and not acknowledging the cultural needs of patients and whānau. However, we also found that some health professionals had developed their own health literacy strategies that included culturally accessible communication and adherence to tikanga practices such as developing the relationship before any clinical matters are discussed.

You can’t, with a new referral, go in and talk cancer straight away the first thing. It might not be until the third or even the fourth visit that you can start talking about the cancer. You have to develop that trust and respect first before you can start talking about their mamae, their hurt, before you can talk about it. (Māori manager)

[Prioritising the relationship] takes more time, it does take more effort . . . but there are better outcomes. It adds more to the quality of the information – it just does. (Māori nurse)

It is efficient to develop a relationship where people are confident to ask questions they are not sure about. . . I saw the same patient yesterday and I spent, it would have been like four hours at their house and getting this rapport and then today I was there for ten minutes . . . it seems that once the trust is there . . . you create a learning environment. (Non-Māori hospice nurse)

Communicating about death

The move from active treatment to palliative care has been described as transitioning from a space of closed awareness that focuses on treatment and side effects only, to open awareness where the limits of medicine are acknowledged and end-of-life planning is openly discussed (21). Whānau participants reported that a lack of clear communication from health professionals about the change in focus from active treatment to palliative care was distressing and confusing. Health professionals in the focus groups called this ‘the hard conversation’ and said that the move to palliative care should be clearly communicated before a referral is made. However, the literature shows that many health professionals struggle with decisions to change the direction of care from active management to palliative care (21), lack confidence in talking about death and dying (22), or do not know how to care for a dying patient (23).

When those ‘hard conversations’ were not held or lacked clarity, whānau reported feeling overwhelmed and under-informed about their options and how to help their family member. This also had an impact on their access to services, with some whānau not realising that choices were being offered, and others resisting palliative care referrals because of cultural miscommunication about the available services.

This finding highlights the need to understand how to support health professionals to work with people who have life-limiting illnesses, particularly at the point where active treatment changes to palliative care.

Cultural health literacy

Whānau and health professionals in this study both identified meeting Māori cultural needs as key factors for enabling whānau to feel informed about current and future care. This included the willingness and ability of health professionals to acknowledge and understand the Māori worldview, and to effectively transmit health information that had meaning for patients and whānau. We conceptualised this as cultural health literacy for organisations and health professionals.

International literature makes links between racism, culture, health literacy, and equitable outcomes. Racism contributes to poor health outcomes for indigenous peoples (24–26), including Māori, who are 10 times more likely to experience racism in the health sector than Europeans (27, 28). A systematic review in 2011 identified that health literacy can be a mediator of racial disparities in health outcomes (29). Cultural competence is an acknowledged facet of building health literacy (30, 31), however the literature focuses on how to get information about health across cultural barriers and does not usually consider that health services may not meet culturally defined needs. An example of this is the focus palliative care services place on pain management, which renders their care irrelevant to someone who believes that pain is to be experienced or even embraced. Cultural health literacy in this instance is about the service provider reframing their care, rather than communicating the same message in culturally inclusive ways.

Findings from this study indicate that poor cultural health literacy is likely to contribute to late access to palliative care for Māori. The culturally specific reasons for late access included services disregarding the importance of tikanga (customary beliefs and practices), a focus on pain relief, inadequate time for relationship building between health professionals and their patients and whānau, and a lack of reciprocity in relationships between services and patients. Late access to palliative care was subsequently associated with inadequate time for patients and whānau to receive and understand information, seek additional information, access satisfactory support, or make arrangements for the patients’ preferred death experience.

Cultural health literacy is an underserved area of research in Aotearoa, New Zealand.

Health literacy practices

Health literacy practices are the actions that patients and whānau take to meet their need for health information. Health literacy practices involve the use of health literacy skills such as reading, writing, speaking, listening and numeracy, as well as critical thinking and decision-making (32).

This study found evidence of patients and whānau using complex health literacy practices to overcome poor communication and limited cultural health literacy on the part of health professionals. These included seeking out and utilising information from wider whānau and friends, and searching the internet. They also reported spending considerable time reading written information and maintaining written records so they could retrieve information to share with health professionals and other families in need.

Patients and whānau generally described the internet as a helpful resource, and there is the potential for internet-based information to lead to more informed dialogue between patients and doctors (33). However, the literature also suggests that doctors have concerns about the accuracy of information gleaned from the internet, which can change the content and lengthen the time of consultations to include debunking inaccurate or misleading information (34).

The health literacy practices demonstrated by our participants could be viewed as being in contrast to the 2006 finding of low levels of general health literacy for Māori (10). Overall rates of Māori health literacy are likely associated with similarly low rates of literacy and numeracy, as well as racism and poor communication from health professionals and services. It is possible that the palliative care context creates heightened motivation for overcoming those barriers to finding and understanding health information.