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| Journal of the New Zealand Medical Association,
08-August-2008, Vol 121 No 1279
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The road we travel: Māori experience of cancer
Tai Walker, Louise Signal, Marie Russell, Kirsten Smiler,
Rawiri Tuhiwai-Ruru, Otaki Community Health Centre, Te Wakahuia Hauora, Te
Aitanga a Hauiti Hauora, Turanga Health
Cancer is a leading cause of death for Māori. It
contributes significantly to the difference in life expectancy at birth between
Māori and non-Māori. From 1981–2004 Māori cancer mortality
rates increased for all cancers combined; whereas non-Māori non-Pacific
cancer mortality decreased.1 Māori are 18%
more likely than non-Māori to be diagnosed with cancer and have a 93%
higher mortality rate.2
Cancer control has received increased focus in New Zealand
since the development of The New Zealand Cancer Control
Strategy.3 The Strategy’s
overall purpose is to reduce the incidence and impact of cancer and reduce
inequalities with respect to cancer. The first principle of the
Strategy is to ‘work within the framework of the Treaty of
Waitangi to address issues for Māori’.
To address the startling inequalities in cancer for
Māori, it is critical that Māori experience of cancer is understood
and acted on. However, there is a little written from a Māori view about
Māori experience of the cancer journey. There is also limited literature
that illuminates the causes of Māori cancer inequalities—but what
there is focuses on three key areas (health system, healthcare process, and
patient factors) as outlined by Cormack et al.4
In taking this approach, Cormack et al. build on the work of Mandelblatt et
al..5 Cormack et al. note that access to cancer
care is ‘complex and multidimensional’. Health system level factors
‘include the focus of the cancer care system and services, funding and
resources, service configuration and location, workforce, availability of
information and resources, and expense’.4
In the New Zealand context, a nationally representative
sample of general practitioners found financial and cultural factors, amongst
others, as key barriers to health care for
Māori.6
Healthcare process factors include ‘the way that
services operate and work with other services, characteristics of
physicians/providers such as training, competence, perceptions and biases, and
patient-provider interaction’.4
Crengle et al., reporting on the same national study of
general practitioners discussed above, noted that general practitioners had
lower levels of rapport with Māori than with non-Māori patients. In
addition, Māori visited the doctor fewer times per year and their
consultations were shorter than those of
non-Māori.7 Reasons why providers give
less and lower quality care to Māori may include lack of a shared cultural
or social background and lack of
understanding.6
Rapport is a key facilitator of access to healthcare, but
notions of rapport are culturally bound. Components of rapport include
‘the doctor taking time to listen, using understandable language, taking
an interest in whānau health history, and engaging with the patient to
deliver a collaborative style of
healthcare’.8 Pākehā (New
Zealand European) doctors may believe they have established rapport with
Māori patients, when in fact they have not.
At a patient level, key factors are ‘socioeconomic
position (including deprivation, employment conditions, and insurance status),
transportation, and patient context’.4
Māori carry a much higher burden of deprivation than
non-Māori. Deprivation combined with racial discrimination accounts for
much of the disparity in health between Māori and
non-Māori.9 Māori take a holistic
approach to health which is inconsistent with a traditional medical
approach.10 Cram et al. note that Māori
carry knowledge of previous negative experiences between Māori, and
Pākehā health professionals.8
While this literature is disparate, nevertheless, a number
of studies highlight serious and complex issues in relation to health
inequalities for Māori that require urgent attention. They include health
system, healthcare process, and patient factors. To tackle inequalities, we must
understand their root causes.
Harris et al. discuss the effects of a key root
cause—racism—based on data from the 2002/2003 National Health
Survey.9,11 Data showed ‘that
self-reported experience of racial discrimination was highest among Māori
and that any such experience was strongly associated with negative health
effects equally for all ethnic groups’.9
This current research aims to explore Māori experiences
of cancer in their own words. It does so to shed some light on the causes of
cancer inequalities for Māori.
MethodsThis research is a qualitative study of the experiences
of Māori affected by cancer including patients, survivors, and their
whānau. Qualitative methods were chosen because they allow for in-depth
exploration of a topic.12 Including whānau
members reflects the collective nature of Māori society. The fieldwork was
conducted between late 2004 and mid 2005. Two data collection methods were
used:
Participants were
recruited by the Māori health providers who were partners in this research
and knowledgeable about Māori affected by cancer in their area. All
participants were of Māori descent; from their early 20s to mid-70s. While
most participants had current experiences of cancer (e.g. in the last 5 years),
some had experiences dating back 20 to 30 years.
An interview schedule was developed by the research
team for the hui and interviews. The questions were designed to explore with
participants their experience and information needs at diagnosis, treatment,
prognosis, the availability of services, and their knowledge of the Cancer
Society. Participants also focussed on other issues of relevance to them in
relation to their cancer journey.
The analysis was done in two stages. A thematic data
analysis undertaken by the Wellington-based researchers identified key themes.
In addition, the team focussed on identifying specific Māori messages
within the data. Then a feedback hui was held at the Cancer Society’s
Manawatu Centre with research participants, Māori health providers, and
Cancer Society staff.
The Wellington researchers presented the results and
sought feedback from those present. Hui participants’ responses were then
used to validate the findings and further analyse the data. Ethical approval for
the study was obtained from the Tairawhiti, Manawatu, and Wellington Ethics
Committees.
The research was conducted in the Cancer Society
central region. Māori, as a rule, are relativistic and do not claim to
speak for all Māori including those living in other regions. Therefore this
paper does not claim to be generalisable to other Māori in New Zealand.
However, this does not mean that the experiences and lessons learnt from this
study do not apply to Māori in other regions.
ResultsMāori providersThere was high praise for Māori providers, for their
grounding in a Māori/iwi (tribal) worldview, their style of practice, and
their support for Māori affected by cancer. Māori providers gave
important practical assistance—e.g. transport to the doctor or hospital,
collecting and delivering prescriptions, and even having an ambulance alarm
connected. They were available to both the cancer patients and their
whānau.
‘Māori health providers will go that step
further’ said a participant. Māori providers practised an awhi
(supportive) approach, and whakawhānaungatanga (building on relationships).
Recognition by Māori providers of their taha Māori (Māori being)
was important to participants because it is ‘who and what they are’,
and providers’ strong, ‘awesome’ links with iwi were valued.
The wife of a patient with throat cancer praised a
Māori doctor who asked her what she wanted to know. She asked to view her
husband's throat, and the doctor organised this with the specialist, giving her
reassurance.
Ozanam HouseOzanam House is a residential facility in Palmerston North
for cancer patients and whānau from the Central Districts region who are
using the Regional Cancer Treatment Service. Participants with experience of
Ozanam House had nothing but praise for it as a supportive institution that met
their needs very well. Strengths of this ‘whānau house’
identified by participants included: ‘that whānau can stay
there’, ‘there are mattresses in the lounge’ [like on a
marae], ‘you cook your own food’, and ‘you can talk with
others about your experiences’.
Experiences with health professionalsParticipants had both positive and negative experiences with
their doctors, nurses, and hospice staff. In particular, they valued good
communication. One participant felt fully informed about treatment and the
duration and effects of medication. Another noted that, during a lengthy
surgery, doctors maintained good communication with whānau members.
A further participant noted that good communication between
her oncologist and general practitioner, ‘made it a lot easier for me and
it played a big part in my recovery’. Another participant’s doctor,
‘told me exactly what was wrong, where it was, and what they were going to
do and I thought it was wonderful...all the way through there was this
supportiveness’. Some participants’ doctors and specialists had
given out their phone numbers for day and night contact.
While participants praised good services, they also noted
where professionals were not responsive to their needs. One said ‘some
medical professionals are like WINZ (New Zealand’s social security
agency), unless you ask the questions you don’t get the answers ... and
the trouble is if you don’t know the question you don’t get the
answer. How can you ask?’
Another noted that doctors were ‘fee driven’.
Another participant felt ‘there's a judgmental thing with some [doctors]
but not all of them’. A further participant reported that a doctor had a
‘bad attitude’. A grandmother described the treatment her mokopuna
(grandchildren) received as ‘unbelievable, like a horror story’ and
commented that the doctor in question had ‘no aroha’
(love/compassion).
Another participant had ‘to bully the doctor to get a
commode and pain relief’ for her sister and she had ‘to work hard to
get them’, although ‘we didn’t want much’. A survivor of
cervical cancer was unaware of the impact of having both ovaries removed and
would have opted to keep one if she had known it would put her into early
menopause.
In each area there was at least one case of misdiagnosis
reported. In one case, the correct diagnosis was made when the survivor sought a
second opinion. Three survivors described feelings of anger that the
misdiagnosis had occurred and were traumatised by the experience.
Participants who worked in the health sector noted that it
would be difficult for Māori who were not assertive or proactive to receive
the level of care they required. One of these health workers had been unaware of
the fact that she could have had a reconstruction at the same time she had a
mastectomy operation. She was also unaware of the negative impact of treatment
on her sexuality. In one case, a survivor had surmised that his cancer was under
control, stating that ‘it must be OK’ because he had not had a note
from the specialist to return for a check.
Nurses were important providers of services, information,
and support. One participant spoke of the value of nurses who were caring,
understanding, and positive because they provided the reassurance that patients
needed. An oncology nurse who visited a participant at home provided a copy of
all her notes on request.
By contrast, the information from the hospital on her
chemotherapy was one illegible photocopied page. A Māori nurse on her days
off helped another participant care for his dying mother. This was the only
support that was offered. Another participant noted that the hospice staff
provided a lot of information during home visits.
In health professionals, participants valued competence,
compassion, warmth, honesty, respect, and professionals who offered support and
took an interest in them, meeting them halfway in terms of cultural needs. One
participant said that having a Māori health professional ‘made it
easier for me’ because she was able to ‘relate’ and felt that
the health professional ‘related’ well to her.
‘I just expect a little bit of civility and courtesy
and I'm happy’. Participants preferred finding out about their cancer from
a person they could trust and feel at ease with, preferably someone with whom
they had an established relationship. As one person explained; the
‘personal touch made a big difference’. The participants indicated
that, for the majority of patients and whānau, the ethnicity of health
professionals was less important than the qualities they demonstrated.
The importance of whānauWhānau involvement in the cancer journey as well as the
support whānau gave were seen as highly significant. Whānau fulfilled
many roles such as providing support and ‘strength’ for the person
in hospital, nursing care in the home, acting as advocates with health
professionals, information-gathering and responsibility for medication. A
participant said, ‘you won't survive if you don't have the support of your
whānau’.
Whānau need knowledge of the entire cancer journey as a
participant explained:
...whānau need to know
about the illness, what course it can take, what symptoms can appear, about
different medications, why they are taking it, how it can help them, and about
the side effects. They need to know that there is somebody they can contact if
they should have any difficulties.
The responsibility to care for whānau and the cost of
this to whānau was also highlighted. One participant cautioned that
whānau need to be aware of the extent of their responsibilities when they
said ‘you [whānau] have to be prepared to go the whole nine yards,
totally there for their benefit’. Another participant, while delighted
that her children wanted to care for her, was also concerned that they continue
their paid employment.
Holistic aspects of healthAs well as the medical treatment they received, most
participants also sought emotional and spiritual support from within their own
culture. Holistic approaches included mirimiri (massage), the application of
kawakawa leaves, metallic healing, reiki, and reflexology. ‘The hospital
deals with your physical problems but they do not deal with your mental and
spiritual problems’.
At the feedback hui (meeting), Māori spoke of the need
for a mixture of the clinical and the holistic aspects of health that takes into
account wairua (spirituality), whakawhānaungatanga (relationships , and
whakapapa (genealogy), ‘so we [Māori] are all comfortable and we all
feel that we are being treated how we feel we should be treated’. Doctors
should be trained in these ‘important aspects for Māori’.
Making your path a bit easierSuggested improvements included health system, healthcare
process, and patient factors.
DiscussionThe present study examined the experience of Māori
cancer patients, survivors and their whānau by providing them with
opportunities to discuss their cancer journey in their own words.
Participants’ discussion can be framed by Cormack et al. and Mandelblatt
et al.’s analysis of inequalities in access to cancer services as
follows.4,5
In terms of health system factors, participants in this
research identified Māori health providers and Ozanam House as examples of
services that work for Māori. Māori also identified a number of ways
to improve services including co-ordinated service delivery, informing
Māori of their entitlements, an increased Māori workforce, systems in
place that provide good information (preferably face-to-face), support and
counselling for patients and whānau and more regular provision of services
in rural areas.
Māori providers with a Māori worldview, provide
practical support to Māori experiencing cancer and are a conduit between
the patient and the cancer control system. This research suggests that the work
of Māori providers should be extended and further resourced because of its
importance in ensuring quality cancer control services for Māori. However,
‘since the majority of Māori continue to receive most of their health
care from mainstream services, considerable ongoing effort is required to
reorient mainstream services, providers, and systems to prioritise Māori
health needs’.13
Ozanam House provides some clues about how to proceed. It is
a mainstream organisation that successfully accommodates the needs of
Māori, providing a place where Māori experiencing cancer can be
Māori.
At the healthcare process level participants across the four
sites reported varying quality. People working in the health system were
reported as unable at times to establish rapport, a key issue discussed by Cram
et al.8 This research demonstrates the need for
significantly improved cultural competence training and ongoing assessment of
cultural competence of all health professionals, including important gatekeepers
such as receptionists and administration staff.
It also shows that an increased Māori health workforce
is urgently needed. Indeed, people to assist Māori in navigating the health
system will be a valuable addition. Anecdotal evidence from Canterbury District
Health Board suggests that the employment of a Māori navigator in the
cancer control arena results in improved service delivery for Māori
(personal communication, Kaitiaki Oncology, 2006).
At the patient level, the research underscores the
importance of whānau involvement in the cancer journey and taking a
holistic approach to health. This supports findings by Cram et
al.8 The research suggests that the concept of
the ‘cancer control continuum’ should include patients and
whānau who support and care for the patient. This view implies different
priorities, and different ways of working from the concept that sees the
continuum in terms of the cancer control workforce.
The health system benefits from the care and support that
whānau provide. Whānau need support and adequate resourcing in this
role. But their involvement should not replace appropriate support from cancer
control services that have an obligation to deliver services fairly to all. This
support may need to come from outside the health sector and may require
intersectoral action on the part of the health sector in areas such as
education, employment and income.
There is an expectation that the New Zealand health service
is a level playing field. However, discrepancies in access to quality health
services by Māori are beginning to be
documented.14,15 Too often, participants in
this study expressed considerable gratitude for very limited care. This research
indicates an urgent need to ensure that Māori receive the same ‘gold
standard’ service to which all New Zealanders are entitled.
This research provides some valuable pointers as to how to
achieve this—such as:
Recent work on racism as a root
cause of inequalities in health provides a further level of analysis for this
research.9,11 Reid and Robson state that
‘racism is a major determinant of health and a fundamental driver of
inequalities that must be addressed in order to improve Māori health
outcomes and reduce inequalities’.16
Jones has developed a framework for understanding racism on
three levels—institutionalised, personally mediated, and
internalised—and has applied it to
health.17 She argues that ‘this framework
is useful for raising new hypotheses about the basis of race-associated
differences in health outcomes, as well as for designing effective interventions
to eliminate those differences’.17
Applying this framework to the current research
institutionalised racism is where Māori are being structurally
excluded from equitable access to health services on the basis of ethnicity;
personally mediated racism is where health workers make differential
assumptions about Māori and treat Māori inadequately; and
internalised racism is where Māori appear to expect differential
lesser treatment (often based on past experiences) personally or within their
whānau.
Research on the experiences of Māori across the cancer
control continuum and at health systems, healthcare processes, and patient
levels is limited as is an analysis of the role of racism in driving health
inequalities.
Further research and action is urgently needed as a result
if the gap between Māori and non-Māori in relation to cancer is to
close. The present research provides valuable information on Māori
experience of cancer from a Māori view.
It is critical that these findings are urgently enacted
through the Government’s New Zealand Cancer Control Strategy if
the Strategy is to deliver on its purpose and address its principles.
Competing interests: None known.
Author information: Tai Walker, Marie
Russell, Kirstin Smiler are researchers at the Health Services Research Centre,
Victoria University, Wellington; Louise Signal is a Director of the Health
Promotion and Policy Research Unit, University of Otago, Wellington; and Rawiri
Tuhiwai-Ruru is a health researcher based in Tairawhiti. Otaki Community Health
Centre, Te Wakahuia Hauora, Te Aitanga a Hauiti Hauora, and Turanga Health are
all Māori health providers.
Acknowledgements: Ngā mihi nui kia
rātau mā i homai ō rātau whakaaro rangatira, me ō
rātau mamaetanga hoki. Kia rātau kua ngaro kit te po haere, haere,
haere.
The research team would like to thank the participants who
shared not only their experiences and insights but also their pain. For those
who have passed on, haere, haere, haere (farewell, farewell, farewell). A
special thanks to John Waldon and Virginia Signal for their unstinting support.
Our thanks also go to Dr Kevin Dew and Donna Cormack (from the University of
Otago) as well as two anonymous reviewers for their valuable comments on an
earlier draft of this paper. This project was funded by a Grant-in-Aid from the
National Scientific Committee of the Cancer Society of New Zealand (Inc). We
also thank the Cancer Society Central Districts Division Inc—Manawatu
Centre and the Gisborne East Coast Cancer Society.
Correspondence: Tai Walker, Health Services
Research Centre, Victoria University of Wellington, PO Box 600, Wellington, New
Zealand. Email: tai.walker@vuw.ac.nz
References:
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