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The New Zealand Medical Journal

 Journal of the New Zealand Medical Association, 21-January-2011, Vol 124 No 1328

Understanding the role of culture in pain: Māori practitioner perspectives of pain descriptors
Jane E Magnusson, Joyce A Fennell
Abstract
Aims There is growing interest in the role of cultural diversity within healthcare settings yet minority ethnic groups are underrepresented in the healthcare literature, including the literature on pain. To better assess and treat pain in different cultures the perspectives and experiences of that culture must be taken into consideration and therefore the present study was undertaken to better understand Māori perspectives of pain.
Methods Māori healthcare providers and kaumātua (tribal leaders/elders) completed questionnaires relating to the experience of pain and were asked to provide feedback regarding the suitability of words and phrases typically used to describe symptoms of pain and pain-related disability. Participants were also asked to provide words, or phrases (in te reo Māori or English) representing characteristics of pain which had not been provided but would be useful in the assessment of pain in a Māori population.
Results All of the pain descriptors, and 92% of the phrases regarding the experience of pain, provided were endorsed by the majority of participants demonstrating that, as in many cultures, Māori perceive pain as a multidimensional experience impacting them on physiological, psychological, and social dimensions and that the terms and phrases of measures commonly used to assess pain appropriately capture their pain experiences.
Conclusions The implications of these findings are that established measures can be used when assessing pain in Māori. However, it is beneficial to confirm that the descriptors used in those measures accurately capture the experiences being measured.

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.

Methods

Cultural 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.

Results

Questionnaires 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
Descriptive statement endorsed by 100% of participants
I feel stressed because of my pain.
My pain makes me frustrated.
I avoid being around people when I’m in pain.
I get tense (e.g., muscle tension) because of my pain.
Descriptive statement endorsed by 93% of participants
Because of my pain I can’t do things the way I want.
My pain makes me angry.
Because of my pain I feel isolated.
I feel irritable because of my pain.
My pain makes me feel frustrated.
I can’t think straight when I’m in pain.
Because of my pain I am less likely to socialize.
When I feel my pain increasing my mind starts to race and I begin to worry.
I am unable to think clearly because of my pain.
Descriptive statement endorsed by 87% of participants
Because of my pain I keep to myself.
My pain is so bad that I feel I am going mad.
I can’t concentrate when I’m in a lot of pain.
I can’t think of other things when I’m in a lot of pain.
I am aware of my pain.
Because of my pain others feel I’m a burden.
I avoid travelling because of my pain.
I continue with activities even though I feel pain.
If I really want to do something I’ll do it even if I have pain.
I’m concerned that my work is suffering because of my pain.
I can’t work because of my pain.
I feel I’m a burden on others because of my pain.
Descriptive statement endorsed by 80% of participants
No one understands how pain affects me.
My pain makes me feel depressed.
I feel desperate because of my pain.
I suffer because of my pain.
Because of my pain I feel bad, like I can’t do anything.
My friends/whänau have no idea what I am going through because of my pain.
My pain makes life unbearable. I have thoughts of killing myself.
I do not enjoy social gatherings because of my pain.
When I’m in pain I can’t think of anything else besides my pain.
My pain causes stress in my relationships with family and friends.
When I’m in pain I think about the pain constantly.
Pain is terrifying.
When I am in pain I distract myself with other things (e.g. watch TV, meditate, or daydream).
Descriptive statement endorsed by 73% of participants
Sometimes I feel that I am going to lose control because of my pain.
I am afraid to go outside when I’m in a lot of pain.
I find it difficult to relax after periods of pain.
I do not enjoy social gatherings with other people because of my pain.
I think that I have a serious health problem which my doctor has failed to detect.
My heart races when I’m in pain.
As soon as I feel my pain get worse I take medication.
To take my mind off my pain I drink/gamble/smoke more.
Descriptive statement endorsed by 67% of participants
What I do in my spare time is restricted because of my pain.
My partner has no idea what I am going through because of my pain.
When my pain increases I stop all activities and try to stay as still as possible.
I believe my pain stops me from accomplishing what I want.
My pain makes me feel confused.
I find it difficult to distract myself (e.g. read, watch TV) because of my pain.
When I feel pain I worry that something bad is going to happen.
Even though I feel pain I know I’m going to be alright.
I feel tightness in my chest when I’m in pain.
When I do an activity that increases my pain I know it will decrease later.
Descriptive statement endorsed by <65% of participants
My view on the world is affected by my pain. (60%)
I worry that if my pain increases it will never decrease. (60%)
I am being penalized because of my pain. (53%)
I seek reassurance from others when I’m in pain. (47%)
I am calm when I am in pain. (27%)
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
I think that I have a serious health problem which my doctor has failed to detect.
Alternative: Doctors don’t know what’s wrong with me.
When I’m in pain I think about the pain constantly.
Alternative: Pain totally takes over and I can’t focus on anything else.
My partner has no idea what I am going through because of my pain.
Alternative: No one knows what I’m feeling.
Alternative: He/she doesn’t know what’s going on.
I am afraid to go outside when I’m in a lot of pain.
Alternative: I don’t go out.
Alternative: I would rather stay inside because of my pain.
Because of my pain I feel bad, like I can’t do anything.
Alternative: Because of my pain I feel frustrated like I can’t do anything.
Alternative: I can’t do anything.
Sometimes I feel that I am going to lose control because of my pain.
Alternative: I feel I might ‘lose it’ or get angry.
I seek reassurance from others when I’m in pain.
Alternative: I need my whänau when I’m in pain.
Alternative: I ask for help from others when in pain.
Alternative: Most times I just want to be alone.
Alternative: I keep to myself.
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
Intensity
Sharpness
Tightness
Temperature
Other
excruciating (100%)
pinching (100%)
cramping 100%)
burning (100%)
aching (100%)
mild (93%)
pricking (100%)
crushing 100%)
hot (100%)
dull (100%)
moderate (93%)
shooting (100%)
gripping (100%)
warm (100%)
heavy (100%)
severe (93%)
stabbing (100%)
pressure (100%)
scalding (93%)
hurting (100%)

stinging (100%)
pulling (100%)
searing (87%)
sore (100%)

drilling (93%)
tight (100%)

splitting (100%)

radiating (93%)
tugging (100%)

tearing (100%)

tingling (93%)
binding (93%)

tender (100%)

cutting (87%)
wrenching (87%)

numbing (93%)

flickering (87%)


steady (87%)

itchy (87%)


taut (87%)

jumping (87%)




tickling (87%)




smarting (80%)



Table 4. Level of endorsement of emotional descriptors of pain
drained (100%)
depressed (100%)
confused (100%)
alone (100%)
exhausted (100%)
fearful (100%)
isolated (100%)
afraid (100%)
nauseated (100%)
helpless (100%)
out of control (100%)
lonely (100%)
sickened (100%)
hopeless (100%)
unsure (100%)
stressed (100%)
tired (100%)
sad (100%)
unmotivated (93%)
worried (100%)
fatigued (93%)
scared (100%)
insecure (87%)
disabled (93%)
suffocated (93%)
terrified (100%)
vulnerable (87%)
restricted (93%)
loss sense of self(80%)
dreadful (93%)
lost my identity (80%)
incapable (87%)

punished (87%)


Table 5. Level of endorsement of cognitive descriptors of pain
annoying (100%)
desperate (100%)
concerned (100%)
awful (100%)
bearable (100%)
intense (100%)
confused (100%)
killing (100%)
irritating (100%)
savage (100%)
cruel (100%)
grinding (93%)
miserable (100%)
violent (100%)
frustrated (100%)
wretched (93%)
ugly (100%)
agonizing (93%)
vicious (100%)
evil (80%)
distracting (93%)
unbearable (93%)
worried (100%)
wicked (80%)
troublesome (93%)
intolerable (87%)
torturing (93%)

Table 6. Level of endorsement of social descriptors of pain
alone (100%)
misunderstood (100%)
destructive (100%)
avoided (93%)
ignored (100%)
unsupported (93%)
lonely (100%)
disconnected (93%)
isolated (100%)
loss of role (87%)
tense (100%)
forgotten (93%)
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
Category
Descriptor provided
Alternative given
Intensity
Moderate
Severe
Excruciating
Hurts
Hurts like hell
I feel gutted
Sharpness
Drilling
Radiating
Smarting
Like a drill
All around
Pinching
Temperature
Scalding
Hot
Social
Isolated
Alone
Table 8. Additional descriptors provided
Sensory words
Emotional words
Cognitive words
Social words
boring
bruised
burning
constant
crawling
digging
drawing
fulgurating
gnawing
lancinating
penetrating
rending
rheumatic
sprained
stiches/ing
sticking
throbbing
angry
anxiety
broken
buggered
crappy
drained
fear of death/disease
frustrated
irritable
shattered
stuffed
useless
wimpy
anxiety
delirium
despair
fear
morose
quarrelsome
rage
restlessness
sensitiveness
suicidal
unconsciousness
unthinkable
useless
weeping
anxious
delirious
dependent
despair
don’t care
draining
fearful
left out
morose
outcast
quarrelsome
restless
sensitive
suicidal

Discussion

The 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
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