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| Journal of the New Zealand Medical Association,
21-January-2011, Vol 124 No 1328
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Understanding the role of culture in pain: Māori
practitioner perspectives of pain descriptors
Jane E Magnusson, Joyce A Fennell
Pain presents with considerable difficulties and
complexities for those who experience it, as well as for those who treat it.
Recognising that physiological mechanisms cannot account for all aspects of
pain, and that physiological or pharmacological treatments cannot relieve all
pain, the complex and multidimensional nature of pain necessitates investigation
of numerous factors that contribute to the experience of pain and the impact it
has on patients’ lives.
Commonly recognised elements of the pain experience include
sensory, emotional, motivational, and social
factors1,2 and within each of these factors
there are many subtle and complex aspects that contribute to the perception and
experience of pain. For example, culture could be considered an additional
aspect of how social factors influence pain as studies have shown that a
person’s culture can play an essential role in how they perceive and
respond to pain.3,4 While there has been
interest in the role of culture and ethnicity related to healthcare issues over
the years, as stated by Edwards, Fillingim and
Keefe5 there is growing interest in
understanding the influence of race and ethnicity on the experience of
pain.6
Culture is shaped by the values, beliefs, norms, and
practices that are shared by members of the same cultural group, and represents
a significant force in shaping beliefs and
behaviours3 including those related to health
issues such as pain.7 As reported by
Lasch8 classic studies on pain and group
membership have described how ethnic norms for appropriate pain behaviour
influence pain perception, interpretation and
response.9-11
Similarly, Bates, Edwards and
Anderson 12 discuss the role that cultural
affiliation plays in pain perception and response in that while intense pain
affects attitudes and emotions, it is also very likely that attitudes and
emotions (which can be influenced by one’s culture) can influence reported
perceptions of pain intensity.
In addition to influencing the experience of pain, it should
be noted that some studies have indicated that culture can also affect the
assessment and management of pain.7 As
presented in a review by Lasch,8 studies have
reported that minorities are at risk for inadequate pain
control. Although it is difficult to interpret
whether the findings of these studies relate to variations in the experience of
pain, in pain behaviour, or in staff perception and treatment of patients’
pain8 they do highlight the importance of
taking into account the influence that culture can have in relation to the
person’s pain experience, their reporting of their pain and the impact
that pain has had on their life (i.e. their own life and as well as their wider
family/social group).
While not all differences in pain experiences are due to
culture,3 its influence on a person’s
perception and expression of pain should be considered when assessing and
treating their pain.
Assessing pain—Although pain is an
experience found amongst persons of all ages, cultures and socioeconomic
status,13 assessment of pain has yet to
adequately consider the diversity that may exist regarding this experience. For
example, to understand cultural differences pertaining to complex health issues
such as pain, suffering, or wellness, one approach has been to use translated
versions of well-established measures. This practice assumes cross-cultural
equivalence of the construct being assessed which may not be appropriate. For
example, the Short Form-36 (SF-36)14 is one of
the most widely used health outcome measures, yet it was found to be unsuitable
for Pacific people and older Māori in New Zealand as it did not adequately
measure the construct of quality of life within these
cultures.15 There is therefore a need to take
cultural differences into account when assessing experiences such as illness,
disability, health and wellness, and pain.
Māori perspectives of health—In
a manner consistent with the widely accepted biopsychosocial view of health and
wellness, the traditional Māori view of health is multidimensional,
incorporating a balance between: spiritual, emotional/mental, physical, and
family/community. The most widely recognised Māori model of health, te
whare tapa wha,16,17 likens these
dimensions to the four supporting walls of a house in that the integrity of all
four dimensions is required for a sound whole.
With regard to the experience of pain, while there is a
growing body of literature pertaining to the influence of culture on pain,
little has been published about Māori perspectives on pain. Currently there
are no measures designed specifically to assess pain within the Māori
culture, and therefore there are no data on the experience of pain, the
prevalence of pain, or the impact of pain on Māori. As chronic pain is one
of the most disabling and costly afflictions in North America, Europe and
Australia10 the burden of this condition is
likely to also greatly impact New Zealand.
Relatively little is known about the frequency of
musculoskeletal pain and pain-related disability in New
Zealand19 as few large scale studies have been
undertaken. What studies have shown is that 15% of general practice
consultations in New Zealand were for musculoskeletal disorders
19,20 but it was considered that this number
represented a fraction of the New Zealand general population who actually had
such disorders as not everyone who has pain seeks treatment for it.
The 2002/2003 New Zealand Health Survey data on the
prevalence of self-reported doctor-diagnosed arthritis, osteoarthritis,
rheumatoid arthritis, or spinal disorders indicated that 13.9% of men and 17.3%
of women reported arthritis. 21 Similar
statistics were found in the report on the Economic Cost of Arthritis in New
Zealand 22 which found that 16.2% of New
Zealanders aged 15 or over were living with at least one type of arthritis (i.e.
one in six people). Financially this was estimated to cost $2.35 billion (i.e.
1.6% of GDP) and more broadly the cost in terms of the years of healthy life
lost because of arthritis was estimated to be 19,121 Disability Adjusted Life
Years (DALYs).
More recently the Portrait of Health published by the
Ministry of Health (2008) provided some idea as to the burden that chronic pain
represents in New Zealand as the 2006/07 New Zealand Health Survey revealed that
the prevalence of pain (chronic pain for adults, by ethnic group (unadjusted)
was 18.1 for European/Other, 17.3 for Māori, 12.0 for Pacific and 9.6 for
Asian.23
When adjusted for age, the Portrait of Health showed that
“Māori men had a significantly increased prevalence of chronic pain
compared to men in the total population” and additionally that
“Asian men and Asian women were significantly less likely to report
chronic pain.” 23
While some studies have assessed pain in the general
population, there is little information about culturally-specific aspects of the
pain experience. As culture can influence the experience and reporting of pain,
it would be of considerable value to determine the most appropriate means of
assessing pain experienced by Māori. By taking into account the distinct
elements of the Māori culture with regard to the experience of pain, the
present study was designed to be in accordance with the Treaty of Waitangi by
holding to the principles of partnership, participation, and protection.
To better understand the Māori perspective of pain, we
sought the views of kaumātua and Māori healthcare providers to gain
insight into how pain is perceived and expressed within the Māori culture,
and to gather information on what a culturally-appropriate pain measure for
Māori should include.
MethodsCultural consultation—An
important aspect of this research involved appropriate cultural consultation.
Guidance from our cultural advisors and kaumātua (tribal leaders/elders)
was sought regarding Māori tikanga (customs and protocol) such as language,
customary practice, rituals of encounter, perspectives on health and assessing
pain in Māori.
Kaumātua are regarded as the tribal experts on
most matters16,24 and therefore represent an
essential source of information on the suitability of items for a culturally
appropriate pain measure for Māori. To seek support for this study the
researchers attended the regular röpü (meetings) of the kaumātua
and Māori elders. Approval for this research was obtained from the
University of Auckland Human Participants Ethics Committee.
Participants—A purposeful
sampling technique was used to recruit participants as it selects the most
appropriate group (i.e. those involved with the topic) to provide
‘information-rich’ data on the phenomenon under
study.25,26 For this study participants were
recruited through our cultural advisors’ iwi and their Māori
healthcare networks.
Participants were classified as either a kaumātua
or as someone who identified their ethnicity as Māori (either wholly or
partially) who served in healing, healthcare, or consulting roles, and would
therefore be likely to care for Māori with pain (i.e. doctors, nurses,
physiotherapists, midwives, Māori community workers). Participants were
asked to provide information on their age, gender, fluency in te reo Māori
(basic, conversational, or fluent), and to specify which health care role (e.g.
kaumātua, nurse, physiotherapist, etc.) best described them.
Determining appropriate pain
descriptors—Assessment measures for pain that enable a person to
convey their experiences in a way that is meaningful to them are required if we
are to understand their pain and how it impacts their life. Without such
knowledge we miss out on information which could facilitate the assessment and
treatment of their suffering.
The importance of language as a means to capture and
convey one’s perceptions and experiences exists in all cultures. As we
wanted to study the experience of pain within the Māori culture, we needed
to understand pain from a Māori perspective. To accomplish this, it would
not be adequate or appropriate to simply translate existing pain and disability
measures into te reo Māori as we did not know how Māori perceived and
expressed their pain experiences or if it would be preferential to have such a
measure in English and/or te reo Māori.
We therefore developed a questionnaire which consisted
of a series of words and phrases from existing validated self-report pain and
pain-disability measures such as the McGill Pain
Questionnaire27 and the Headache Disability
Inventory28 as these would be a starting point
from which we could determine what words/phrases would be the most appropriate
to use with Māori patients.
While there are many pain measures available, these
measures were chosen as they captured both descriptive words pertaining to pain
as well as the impact that pain can have on the person’s life (i.e.
perceived disability). Additionally, we limited our use of measures so as to not
make our questionnaire too burdensome to complete.
From the measures used we devised a questionnaire that
consisted of 61 phrases related to the experience of pain (e.g. pain makes me
frustrated, I continue activities even though I feel pain, I feel I’m a
burden on others because of my pain, my friends/family have no idea what
I’m going through because of my pain) and 123 pain descriptors related to
the sensory (e.g. burning, pressure, stabbing), cognitive (e.g. annoying, cruel,
awful), emotional (e.g. sad, helpless, alone) and social (e.g. isolated,
ignored, misunderstood) aspects of pain.
As the purpose of this study was to determine the
appropriateness of commonly used pain descriptors and phrases within the
Māori culture, participants were asked to provide feedback regarding the
suitability of the pain descriptors and phrases within the questionnaire for use
with Māori (i.e. circle yes or no to indicate if the item was useful), to
provide alternative descriptors or phrases in te reo Māori or English in
the space provided if appropriate, and to provide additional pain-related
concepts which had not been included.
Analysis of the data consisted of tabulating the level
of endorsement of individual items and noting additional and alternative items
provided.
ResultsQuestionnaires were completed by 12 females (80%) and 3
males (20%). The age range of participants was 32–81 years. The 15
participants indicated their fluency in te Reo Māori as being: basic (10),
conversational (3) or fluent (2).
Completed questionnaires from both Māori healthcare
providers (12) and kaumātua (3) were analysed as a combined group as the
number of questionnaires per group was not sufficient for separate analyses. The
number of people in the categories which participants selected included:
kaumātua (3), nurse (3), community health worker (2), allied health
professional (1), homeopath (1), physiotherapist (1), psychiatrist (1),
psychology assistant (1), psychotherapist (1), and special needs
paraprofessional (1).
Descriptive phrases of the experience of
pain—Of the 61 phrases provided, 56 (92%) were endorsed by 65% or
more of the participants (see Table 1).
Table 1. Level of endorsement of the
descriptive phrases from the questionnaire
Participants provided 158 alternatives, using either
alternative wording (e.g. “I don’t like this word ‘bad’,
perhaps ‘awful’, ‘horrible’ or
‘traumatic’?”), or alternative phrases (e.g. “Doctors
don’t know what’s wrong with me”, or “I need my
whänau when I’m in pain”). Table 2 presents a sample of the
descriptive phrases with the alternatives provided by the participants.
Table 2. Alternative descriptive phrases
provided by participants
Pain descriptors—Of the 123
descriptors (including category labels) provided, 123 (100%) were endorsed by
65% or more of the participants with 77 (63%) being endorsed by 100% of the
participants. Tables 3 through 6 present the percentage of participants who
indicated that a specific pain descriptor was appropriate for use with
Māori patients as they related to the different categories of pain
descriptors (e.g. sensory, emotional, cognitive, and social).
Table 3. Level of endorsement of sensory
descriptors of pain
Table 4. Level of endorsement of emotional
descriptors of pain
Table 5. Level of endorsement of cognitive
descriptors of pain
Table 6. Level of endorsement of social
descriptors of pain
Eight alternative descriptors (see Table 7) and 58
additional descriptors (see Table 8) were provided by participants. The majority
of alternative and additional descriptors (97%) were supplied by healthcare
providers. Interestingly no alternative or additional descriptors were provided
in te reo Māori.
Table 7. Alternative descriptors
provided
Table 8. Additional descriptors
provided
DiscussionThe findings of this study illustrate that Māori, like
other cultures, perceive pain as a multidimensional experience impacting them
physiologically, psychologically, and socially and therefore assessing and
treating pain from a multidimensional perspective would be appropriate within
the Māori culture.
Similarities between Māori and other cultures regarding
their perception and experience of pain were indicated by the
participants’ endorsement of well-established pain descriptors and phrases
(i.e. items from established pain assessment measures) pertaining to the
experience of pain.
While this finding is important in terms of understanding
commonalities between cultures regarding the perception and expression of the
pain experience, it was interesting to learn about differences regarding how
people express their thoughts about pain. The provision of alternative wording
and additional descriptors and phrases was valuable in terms of providing
insight into how Māori express similar concepts in different ways.
For example, terms conveying a distressed state such as
“gutted”, “buggered” and “shattered” are
commonly used within New Zealand and by Māori and are therefore important
to be aware of when working with this patient population as they provide a clear
indication of the negative impact that pain is having on the person’s
life. It should however be noted that these terms would be considered
contextually current in that, as with most slang terms, they may not be relevant
in the future. The use of slang terms can change over time and this needs to be
taken into account when using such terms.
Regarding the use of English versus te reo Māori for
descriptors and phrases pertaining to pain, as participants were asked to
provide words or phrases in either English or te reo Māori it was expected
that more Māori words would have been provided by participants as some were
conversational/fluent in te reo Māori and the majority had a basic fluency
in te reo Māori. As few Māori words or phrases were provided by
participants this indicates that the English ones in the questionnaire were
considered to be acceptable. If these descriptors and phrases were not
considered to be appropriate for Māori this would have been indicated by
the participants excluding these items as well as providing us with other, more
culturally appropriate ones.
Interestingly, with regard to the appropriateness of using
non-Māori words, the alternative descriptors that were provided by
participants were in English not te reo Māori indicating the
appropriateness of using English for the assessment of pain in a Māori
population. This is an important finding as it indicates that using established
descriptive words and phrases, in addition to those provided by participants,
would be appropriate to use in the development of a pain questionnaire for
Māori.
Although our results demonstrate that the use of English
words and phrases is appropriate for assessing pain in the Māori culture,
it is important to consider the benefits of allowing for culturally-related or
culturally-appropriate terms, phrases and descriptors to be encouraged and
included when assessing pain in different cultures. The benefits of this
approach not only enhance rapport with the person as it enables them to feel
their perspective is relevant and valued, it enables the provider to learn about
potentially important subtleties that could influence their assessment and
treatment of a person from a different culture. This can not only influence the
quality of the assessment but also the possibility of treatment being
successful.
Therefore, while there are commonalties between cultures
with regard to the multidimensional experience of pain, it is valuable to
understand a culture’s perceptions and experiences regarding pain as part
of assessing and treating it.
Conclusions—Our findings demonstrate
that commonly used and widely accepted descriptors and phrases relating to pain
are appropriate to use when assessing Māori pain patients. Additionally, it
would be of considerable benefit to include the additional items provided by
this study when developing a questionnaire to be given to Māori pain
patients as the additional descriptors and phrases capture aspects of the pain
experience that may be specific to that culture thereby enhancing the
appropriateness and usefulness of the questionnaire. Once a questionnaire has
been developed, additional studies need to be undertaken with Māori pain
patients to further explore the experience of pain within this cultural group.
Limitations—This study was undertaken
with kaumātua and Māori healthcare providers who we had access to
through our cultural advisors and is therefore not meant to be representative of
all Māori.
Author information: Jane E Magnusson,
Senior Lecturer, Department of Sport and Exercise Science, University of
Auckland; Joyce A Fennell, Health Psychologist, Respiratory Services, Auckland
District Health Board, Auckland
Acknowledgements: While bicultural research
can be difficult, we are grateful for the cooperation and support from our
cultural advisors as well as the kaumātua and Māori healthcare
providers who took part in this study.
Correspondence: Dr Jane E Magnusson,
Department of Sport and Exercise Science, University of Auckland, Private Bag
92019, Auckland, New Zealand. Fax: +64 (0)9 3737043; email: j.magnusson@auckland.ac.nz
References:
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