November 2012, Vol. 9, Issue 1
novembre 2012, vol. 9, numéro 1
Publisher / Éditeur
National Aboriginal Health Organization
Editor / Rédactrice en chef
Camille Lem, BScN, RN, MEd
The Journal of Aboriginal Health is an official peer-reviewed publication of the National
Aboriginal Health Organization (NAHO).
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The Journal of Aboriginal Health is covered by the Canadian Copyright Act and international
agreements (all rights reserved). Written permission is required to reprint, reproduce, modify or
redistribute any information or articles, in whole or in part, published in the Journal of Aboriginal
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Disclaimer
The Journal of Aboriginal Health is intended for education and informational purposes only. The
articles and contents herein represent the views of the authors and do not necessarily reflect the
views of NAHO. NAHO assumes no responsibility or liability for damages arising from any error or
omission, or from the use of any information or advice, contained in this publication.
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Submissions
The Journal of Aboriginal Health accepts article submissions on the topic of Aboriginal health on
an ongoing basis. All submissions should be directed to the attention of the Managing Editor.
Articles are published in the language in which they are submitted.
Révisé par des pairs, le Journal de la santé autochtone est une publication officielle de
l’Organisation nationale de la santé autochtone (ONSA).
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de l’ONSA. L’ONSA n’assume aucune responsabilité à l’égard de tout dommage résultant d’une
erreur ou d’une omission, ou de l’utilisation des renseignements ou conseils prodigués dans la
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Abonnement
Le Journal de la santé autochtone est distribué gratuitement (des frais pourraient être fixés sans
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en chef (voir les coordonnées dans le bloc-générique).
Editorial Assistants /
Adjointes à la rédaction
Andrea Aiabens
Nicole Robinson
Editorial Advisory Board /
Comité éditorial
Andrea Aiabens
Camille Lem
Nicole Robinson
Simon Brascoupé
Copy Editor / Réviseur
Jennifer Martin
Leslie Ordal
Design / Graphisme
James MacDougall
Layout / Mise en page
James MacDougall
Translator / Traducteur
Madeleine Smith
Contributors / Auteurs
M. Latimer, S. Young, C. Dell, G. Finley, A. Baker, A.
Giles, H. Samji, D. Wardman, P. Orr, K. McMullin, S.
Abonyi, M. Mayan, P. Orr, C. Lopez-Hille, M. King, J.
Boffa, R. Long, K. M. Devries, C. J. Free, E. Saewyc,
M. Katt, C. Chase, A. V. Samokhvalov, E. Argento, J.
Rehm, B. Fischer
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Journal of Aboriginal Health
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Journal of Aboriginal Health, November 2012
1
Editorial
Making Gains in First Nations, Inuit, and Métis
Health
O
ver time, First Nations, Inuit, and Métis people have made gains in health but continue to
bear a disproportionate burden of death and disease. The infant mortality rate for Status First
Nations and Inuit has dropped over the last decades, but is nevertheless about twice the rate
of the general population in Canada (rates for non-Status First Nations and Métis are not available)
(Smylie & Adomako, 2009). Life expectancy has also increased, but First Nations, Métis, and residents
of Inuit Nunangat still live about three to eleven years less than the rest of Canada (Tjepkema, Wilkins,
Senécal, Guimond, & Penney, 2009; Oliver, Peters, & Cohen, 2012). There are also substantial disparities
when it comes to rates of diabetes, tuberculosis, and suicide.
The Journal of Aboriginal Health is the leading open
access and peer reviewed journal on First Nations, Inuit, and
Métis health. Published by the National Aboriginal Health
Organization (NAHO), the Journal is a valuable forum for
authors to share their research and findings. It connects a
community of people who are passionate about advancing the
health of Aboriginal people.
Since 2004, the Journal has published 12 issues on a wide
range of themes, such as traditional medicine, social networks
and health, and the prevention of HPV infections and related
diseases. Each issue reaches about 2,000 subscribers and
additional readers through NAHO’s website and searchable
academic databases such as ProQuest, Scirus, Index
Copernicus, and Google Scholar. Over a 9 month period in
2011–12, the Journal was downloaded more than 4,000 times.
This fall, I am delighted to bring you Volume 9, Issue
1. This general issue features articles on determining if
Aboriginal children are in pain, cultural safety and improving
health care for Aboriginal patients, tuberculosis, substance
abuse and sexual risk, and treatment for prescription opioid
dependence. The next issue will be a special edition on Inuit
health and will be published in winter/spring 2013. Chris
Furgal, co founder and co director of the Nasivvik Centre for
Inuit Health and Changing Environments, will be the guest
editor of this special issue.
Sadly, this year marks NAHO’s twelfth and final year
of operations. The organization’s funding was cut in the
2012 federal budget and its office closed on June 29, 2012.
However, I am pleased to report that the Journal has been
transferred to a new publisher: the Aboriginal Health
Research Networks (AHRNet) Secretariat at the University
of Victoria. The Secretariat will be publishing Volume 10 and
future issues. I invite you to visit www.naho.ca/jah and www.
ahrnets.ca for the latest news about the Journal. NAHO’s
website will remain online until December 2017.
On behalf of our contributors, I hope you enjoy this issue.
Thank you for your support.
Miigwetch,
Simon Brascoupé
Acting Chief Executive Officer
National Aboriginal Health Organization
Ottawa, Ontario
REFERENCES
Smylie, J. & Adomako, P. (Eds.). (2009). Indigenous Children’s Health Report: Health Assessment in Action. Retrieved
August 13, 2012 from http://www.stmichaelshospital.com/pdf/
crich/ichr_report.pdf
Tjepkema, M., Wilkins, R., Senécal, S., Guimond, É., & Penney,
C. (2009). Mortality of Métis and Registered Indian adults
in Canada: An 11 year follow up study. Health Reports, 20(4),
1–21. Statistics Canada Catalogue No. 82-003-XPE. Retrieved
August 13, 2012 from http://www.statcan.gc.ca/pub/82003-x/2009004/article/11034-eng.pdf
Oliver, L. N., Peters, P. A., & Kohen, D. E. (2012). Mortality rates
among children and teenagers living in Inuit Nunangat, 1994
to 2008. Health Reports, 23(3), 1–6. Statistics Canada Catalogue
No. 82-003-XPE. Retrieved August 13, 2012 from http://www.
statcan.gc.ca/pub/82-003-x/2012003/article/11695-eng.pdf
Journal of Aboriginal Health, November 2012
3
Éditorial
Des gains en santé chez les Premières nations,
les Métis et les Inuits
A
u fil des ans, les Inuits, le Métis et les Premières nations ont réalisé des gains en santé; notre
peuple continue cependant à porter un fardeau disproportionné de décès et de maladie. Chez les
membres des Premières nations et les Inuits in malgré que le taux de mortalité infantile ait chuté
ces dernières décennies, il demeure néanmoins environ deux fois plus élevé que celui de la population
canadienne en général (les taux pour les membres des Premières nations et les Métis non inscrits ne
sont pas disponibles) (Smylie et Adomako, 2009). L’espérance de vie s’est également allongée, mais les
membres des Premières nations, les Métis et les résidents de l’Inuit Nunangat vivent encore trois à onze
ans de moins que le reste des Canadiens (Tjepkema, Wilkins, Senécal, Guimond et Penney, 2009; Oliver,
Peters et Cohen, 2012). On note également d’importantes différences en ce qui a trait au diabète, à la
tuberculose et au suicide.
Le Journal de la santé autochtone est la première
publication libre d’accès et revue par un comité de lecture
sur la santé des Premières Nations, des Inuits et des Métis.
Publié par l’Organisation nationale de la santé autochtone
(ONSA), le Journal constitue une tribune précieuse pour les
auteurs désireux de partager le résultat de leurs recherches et
conclusions. Il met en rapport une communauté de personnes
que l’avancement de la santé des Autochtones passionne.
Depuis 2004, 12 numéros du Journal ont été publiés
sur une grande variété de sujets comme la médecine
traditionnelle, les réseaux sociaux et la santé, ainsi que la
prévention des infections à VPH et les maladies connexes.
Chaque numéro rejoint environ 2 000 abonnés et d’autres
lecteurs par le truchement du site Internet de l’ONSA et des
bases de données spécialisées consultables comme Proquest,
Scirus, Index Copernicus et Google Scholar. En 2011-2012,
sur une période de 9 mois, le Journal a été téléchargé plus de
4 000 fois.
Cet été / automne, je suis ravi de vous présenter le
premier numéro du Volume 9. Ce numéro à portée générale
propose des articles sur comment déceler la souffrance chez
les enfants Autochtones, la sécurité culturelle et l’amélioration
des soins de santé prodigués aux patients Autochtones, la
tuberculose, la toxicomanie et les risques sur le plan sexuel,
ainsi que sur le traitement de la dépendance aux opiacés
d’ordonnance. Le prochain numéro sera un numéro spécial sur
la santé des Inuits qui sera publié à l’hiver / printemps 2013
4
Journal de la santé autochtone, novembre 2012
sous la direction du rédacteur en chef invité, Chris Furgal,
cofondateur et codirecteur du Nasivvik Centre for Inuit Health
and Changing Environments.
Malheureusement, cette année marque la douzième
et dernière année d’opération de l’ONSA. Dans le budget
fédéral de 2012, on a annoncé le retrait du financement de
l’organisme; par conséquent, ses bureaux ont été fermés le
29 juin dernier. Toutefois, je suis heureux de vous annoncer
que la publication du Journal a été transférée à un nouveau
diffuseur : le Aboriginal Health Research Network (AHRNet)
Secretariat [Secrétariat du Réseau de la recherche en santé
autochtone (STTSA) – traduction libre] de l’Université de
Victoria. Le Secrétariat publiera le Volume 10 et les prochains
numéros. Je vous invite à visiter www.naho.ca/jah ainsi que
www.ahrnets.ca pour les plus récentes nouvelles concernant
le Journal. Le site internet de l’ONSA demeurera en ligne
jusqu’en décembre 2017.
Au nom de nos contributeurs, j’espère que vous
apprécierez le présent numéro et vous remercie de votre appui.
Miigwetch,
Simon Brascoupé
Directeur par intérim
Organisation nationale de la santé autochtone
Ottawa (Ontario)
Éditorial
BIBLIOGRAPHIE
Smylie, J. et Adomako, P. (2009). Indigenous children’s health
report: Health assessment in action. Repéré le 13 août 2012 à
www.stmichaelshospital.com/pdf/crich/ichr_report.pdf.
Tjepkema, M., Wilkins, R., Senécal, S., Guimond, E. et Penney,
C. (2009). La mortalité chez les Métis et les Indiens inscrits
adultes au Canada : étude de suivi sur 11 ans. Rapports sur
la santé, 20(4), 1-21. Statistique Canada, no 82-003-XPF au
catalogue. Repéré le 13 août 2012 à http://www.statcan.gc.ca/
pub/82-003-x/2009004/article/11034-fra.pdf.
Oliver, L. N., Peters, P. A. et Kohen, D. E. (2012). Taux de
mortalité chez les enfants et les adolescents vivant dans l’Inuit
Nunangat,1994 à 2008. Rapports sur la santé, 23(3), 1-6.
Statistique Canada, no 82-003-XPF au catalogue. Repéré le 13
août 2012 à http://www.statcan.gc.ca/pub/82-003-x/2012003/
article/11695-fra.pdf.
Journal of Aboriginal Health, November 2012
5
Aboriginal Children and Physical Pain:
What Do We Know?
Margot Latimer, RN, PhD, Associate Professor, Dalhousie University, Halifax, Nova Scotia; and
Faculty, Centre for Pediatric Pain Research, IWK Health Centre, Halifax Nova Scotia
Shelley Young, BSc, Dalhousie University, Halifax, Nova Scotia
Carmen Dell, BA, Nursing student, Aboriginal Liaison, Faculty of Health Professions, Dalhousie
University, Halifax, Nova Scotia; and Atlantic Aboriginal Health Research Program Intern
G. Allen Finley, MD, FRCPC, FAAP, Professor of Anesthesia & Psychology,
Dalhousie University, Halifax, Nova Scotia
ABSTRACT
All children experience body pain as a result of medical procedures, vaccinations, and a variety of
chronic conditions. Children are a vulnerable population and may be even more at risk to experience pain in under-resourced environments. We know that physical pain in childhood causes suffering to the child, family, and caregivers, and can also cause prolonged physiological and immune
effects lasting into adulthood. There is evidence that Aboriginal children and youth experience pain
at higher rates than their non-Aboriginal counterparts. First Nations youth report that pain issues
have kept them from participating in essential developmental activities such as school and sports.
Effective pain care increases a child’s ability to participate in activities that are meant to enhance
well-being and prepare them to be healthy adults. Currently, there is no reliable way for First Nations children and youth to convey the intensity and quality of their pain. This makes it difficult for
health professionals to measure it and likely influences whether it is adequately treated or not. In
this paper, we will discuss some of the historical and cultural perspectives that may be helpful in
understanding pain in Aboriginal children. In addition, we will discuss what is known about pain
expression, assessment, management, and health professionals’ empathy for pain cross-culturally as
well as the next logical steps to address some of these issues.
KEYWORDS
Aboriginal children, youth, pain expression, pain interpretation, cross-cultural understanding
Journal of Aboriginal Health, November 2012
7
Aboriginal Children and Physical Pain: What Do We Know?
BACKGROUND
P
oor pain assessment and management in children
remains a major problem in health care settings
regardless of culture or place of residence. However,
untreated pain may be even more profound and result
in poorer outcomes among Aboriginal children given
high rates of ill health and resource inequities in their
communities. We know that infants, children, and youth
who have repeated painful procedures react differently to
subsequent pain (Grunau, Weinberg, & Whitfield, 2004;
Rennick, Johnston, Dougherty, Platt, & Ritchie, 2002).
These repeated unmanaged events can lead to learning
disabilities, anxiety disorders, heightened pain reactivity,
chronic pain, and altered health-related care activities later
in life (Baulch, 2010; Blount, Piira, Cohen, & Cheng, 2006;
Grunau, Weinberg, & Whitfield, 2004; Slifer et al., 2009;
Young, 2005). Aboriginal children are known to have a
higher prevalence of chronic, disease-related, and dental
pain, and are more likely than non-Aboriginal children to
experience pain and not be treated for it (Leake, Jozzy, &
Uswak, 2008; Maudlin, Cameron, Jeanotte, Solomon, &
Jarvis, 2004; Rhee, 2000). In addition to causing unnecessary
suffering, these conditions may place First Nations children
at a higher risk of impaired development.
Certain pain issues may be related to culturally based
expectations of how children perceive and express their
physical pain; currently, we are not certain about how
children effectively convey their pain to non-Aboriginal
health professionals in order for them to accurately assess
it. In this paper, we will briefly review some of the historical
issues that may help us to better understand how pain is
considered from a cultural perspective, and then discuss
what is known about pain assessment and management
in Aboriginal children. The term “Aboriginal” is used to
define multiple groups that encompass many different
subgroups. The Constitution Act (1982) defines Aboriginal
as an inclusive term referring to First Nations, Inuit, and
Métis. These are three unique groups with distinct histories,
languages, cultural practices, and spiritual beliefs. Aboriginal
people refer to themselves according to their particular
tribal affiliation (Mi’kmaq, Cree, Innu, Ojibwa) or by First
Nations, Inuit, or Métis. In this paper, we use the term
Aboriginal to represent people who identify themselves as
part of one of these groups in general, and specifically where
a particular group has been acknowledged.
8
Journal de la santé autochtone, novembre 2012
Nationally, one-third fewer Aboriginal children
seek physician-care than non-Aboriginal children
(Canadian UNICEF Committee, 2009), and pain may
be a common reason why they do eventually seek care.
There may be several reasons for this health-seeking
behaviour. It has been suggested that Aboriginal
children express their pain differently than nonAboriginal children. Prior research has revealed that
some health professionals do not empathize with the
pain of people f rom different ethnicities in the same
manner as they do for those of their own culture
(Rennick, Johnston, Dougherty, Platt, & Ritchie,
2002). Given this information and that little is known
about how Aboriginal children express and convey
their pain, this issue should be explored in more
depth.
WHY SHOULD WE PAY ATTENTION TO
MANAGING PAIN IN CHILDREN?
Research conducted in animals and humans has
shown that there are negative short- and long-term effects
from untreated pain in infants and children (Cohen,
2008; Harvey, & Morton, 2007; Pillai Riddell, Horton,
Hillgrove, & Craig, 2008; Slifer et al., 2009; Young, 2005).
Immediate or short-term effects include hypoxemia and
altered metabolic stress responses (Grunau, Weinberg, &
Whitfield, 2004; Young, 2005). Children who experience
repeated untreated painful procedures may develop alternate
brain communication pathways that may be permanent
and could explain altered stress responses and behaviour
(Grunau, Weinberg, & Whitfield, 2004; Rennick, Johnston,
Dougherty, Platt, & Ritchie, 2002; Young, 2005)..
Repeated procedural distress may put the child at risk
for behavioural or psychological disturbances inside or
outside of the medical context (Slifer et al., 2009). Some
long-term effects include altered pain responses, increased
anxiety, heightened medical fears, higher risk for attention
deficit disorder, higher risk for posttraumatic stress disorder,
and avoidance of health care (Blount, Piira, Cohen, &
Cheng, 2006; Rennick, Johnston, Dougherty, Platt, &
Ritchie, 2002; Young, 2005). Untreated pain can also lead to
the development of chronic and neuropathic pain (Baulch,
2010). Given the short- and long-term impact of untreated
pain, we need to understand how children with the highest
rates of painful conditions are expressing their pain so that
we can deal with it.
Aboriginal Children and Physical Pain: What Do We Know?
PAIN EXPRESSION
Health care providers have an ethical responsibility
to understand children’s pain expressions and administer
appropriate pain relief. However, if health care staff are
unfamiliar with the cultural characteristics that define
children’s pain experiences, inaccurate and harmful responses
may occur (Fenwick, & Stevens, 2004). Pain assessment
depends on effective communication and interpretation of
the pain expression and experience, yet there is little to no
research on pain expression and management in Aboriginal
children.
In a recent comprehensive review of 28 studies that
examined the experience, epidemiology, and management
of pain among American, Alaskan, and Canadian
Aboriginal people, only five studies included children and/
or adolescents ( Jimenez, Garroutte, Kundu, Morales, &
Buchwald, 2011). In these studies, the resulting trend was
clear and indicated that there were higher rates of dental
pain (Leake, Jozzy, & Uswak, 2008), juvenile rheumatoid
arthritis pain (Maudlin, Cameron, Jeanotte, Solomon, &
Jarvis, 2004), headaches (Rhee, 2000), and musculoskeletal
and chest pain (Buchwald, Beals, & Manson, 2000) in
Aboriginal children and adolescents than in the general
population. Buchwald, Beals, and Manson (2000) also
reported higher rates of bodily pain in Aboriginal children
with posttraumatic stress disorder. In one other Canadian
study not specifically examining pain, Van der Woerd
et al. (2005) reported that 765 (or 45 per cent) of 1,700
First Nations youth in one community said that pain
issues kept them from participating in school, sports,
and other extracurricular activities. In the little research
conducted, it appears there is a higher incidence of pain in
Aboriginal children that could potentially interfere with
their achievement of optimal health and overall well-being.
There is also some indication that Aboriginal people do not
express physical pain in the manner that non-Aboriginal
care providers are used to, and this may explain the underassessment, under-treatment, and subsequent higher pain
prevalence rates. Before tackling the issue of pain expression
and measurement, we must understand some of the history
of pain from a cultural perspective.
UNDERSTANDING THE COMPLEXITY OF
PAIN FROM A CULTURAL PERSPECTIVE
James David Audlin (Distant Eagle), who has
compiled a collection of teachings of Native American
Elders from across North America, explains that pain is not
always perceived as a negative experience (Audlin, 2006).
“All people in every culture rid themselves of pain with
medicines [...] but traditional peoples believe that pain has
a message for us, and that we are foolish not to listen to it”
(p. 177); “in the most obvious level pain tells us that there
is something wrong with our body, and the specific nature
and location of the pain tells us what type of healing to
seek” (p. 178). However, in cultures that value balance, pain
may have a sacred dimension, and enduring it is deemed
as necessary for personal growth and the development of
wisdom. When considering pain and adversity, he states
that traditional teachings convey that “pleasure and pain
are simply something that passes through us as we follow
the course of our lives” and that “there is no point in either
complaining or seeking out adversity” because “no life is
free of it” (p. 174); a “truly traditional person […] accepts
it when it comes, humbly and honorably” (p. 178). When
considering these factors, it is understandable that someone
who holds these beliefs in whole or in part may be less likely
to express their pain or less likely to seek medical relief
from it. This also explains why providers would describe this
behaviour as stoic.
Emmett Peters, a Mi’kmaq Elder who ritually practices
in Native Traditional norms says that “pain is something
that cannot always be avoided so is something we must
embrace” (personal communication, September 4, 2011).
He believes pain to be “sacred when endured in traditional
ceremony.” Many First Nations use traditional practices
that at times cause painful experiences, including practices
such as Sweat Lodge Ceremonies, Fasting, and Sundances.
It is believed that when one person endures pain, another
person’s pain is lessened or healed. Ceremonies such as these
are seen as a sacrifice for those suffering from illness or
hardships.
In addition, many Aboriginal people live in
multigenerational households. It is not unusual for a
grandmother to be the primary caregiver and to pass on her
own beliefs about pain and health care practices (Smylie,
2001). Elders and grandparents of the current generation
of youth were likely either directly or indirectly affected
Journal of Aboriginal Health, November 2012
9
Aboriginal Children and Physical Pain: What Do We Know?
by the residential school trauma. Negative memories of
this institutionalization may create a distrust of other
government-run institutions such as hospitals and clinics,
resulting in avoidance until an illness is advanced (Smylie,
2001). In these severe cases, it is more likely that treatment
will have to be sought in larger urban centers, where health
professionals are even less familiar with cultural norms and
misunderstandings are more likely to occur (Kurtz, Nyberg,
Van Den Tillaart, & Mills, 2008).
Further, when Aboriginal people do seek treatment,
the way health professionals approach them to determine
if they are in pain and how to manage it is important. One
of the cultural factors that may impact the relationship
between health care providers and Aboriginal people is
oral tradition and the concept of non-interference. In
traditional Aboriginal culture, lessons are often imbedded
in stories. Giving direct advice or orders is less common
and potentially disrespectful (Leavitt, 1995). An Elder may
instead tell a story about what other people have done,
allowing the listener to decide independently what they
might do in a similar situation. This is not consistent with
the current medical model, where a patient is expected to
approach an “expert” health care provider with a problem
and leave with very specific instructions. This direct action
of stating the “proper way” to care for a child in pain may
be viewed as paternalistic or condescending. Even when
treatment is sought, the way it is expressed and interpreted
may be different.
WHAT IS KNOWN ABOUT PAIN
EXPRESSION
In research with Aboriginal people, low pain expression
is often reported. For example, Elliott, Johnson, Elliott, and
Day (1999) showed that Ojibwe patients only reported pain
if severe, and Kramer, Harker, and Wong (2002) indicated
that Aboriginal study participants used vague descriptions
such as “ache” to express severe pain symptoms. Similarly,
Fenwick (2006) noted that some health professionals
assessed Australian Aboriginal people’s pain response as
“stoic.” However, she includes a caution: simply because
Indigenous people fail to express their pain vocally, labelling
them as stoic could be a culturally unsafe practice and result
in under-treatment, as their silence does not necessarily
indicate a lack of pain. Finley, Kristjánsdóttir, and Forgeron
(2009) caution against stereotyping pain expression by
culture. They provide a comprehensive literary discussion
10
Journal de la santé autochtone, novembre 2012
of influences of pain assessment in children from different
cultures and discuss stoicism or “kreng jai” (translated as
“awe heart”) in Thai children. Kreng jai is a Thai social
warning against causing distress to others, specifically those
who are senior or elders (McCarty et al., 1999). In other
research conducted among Thai children, stereotypical
behaviours such as being stoic or unmoved by needles
were also reported (Forgeron, Finley, & Arnaout, 2006).
In informal discussions with members from one First
Nations community, words such as stoic, suppressed, and
muted were used to describe how children respond to pain
(Latimer et al., 2011). Another clinical nurse specialist who
works in an Inuit community noted that the response of
children in severe pain is often muted with little facial or
verbal cues and perceived as stoic (A. Steenbeek, personal
communication, April 15, 2011). In this example, the
nurse described the child as having a severe dog bite and
the mother encouraging her child to think of himself as a
warrior in response to the pain.
According to Honeyman and Jacobs (1996), Indigenous
people suppress pain behaviours and are reluctant to discuss
their pain experience with others. It has been suggested
that this is the result of the oppression and suppression
experienced by Aboriginal people since colonization
(Fenwick, 2006). Fenwick noted that expressing pain may be
viewed by Indigenous people as a human weakness, resulting
in a tendency to not want to draw attention to their pain
experience. This may explain, in part, the under-assessment
and under-treatment of Aboriginal people’s pain by nonAboriginal health providers (Drwecki, Moore, Ward, &
Prkachin, 2011).
INTERPRETING PAIN WHEN IT IS
REPORTED
Although it is well documented that accurate and
timely pain assessment leads to better pain management,
evidence indicates that there are racial differences in pain
assessment (Drwecki, Moore, Ward, & Prkachin, 2011)
and pain treatment (Mills, Shofer, Boulis, Holena, &
Abbuhl, 2010). Studies show that health clinicians may react
differently to pain reported by patients from different ethnic
backgrounds (Anderson et al., 2000). Higher rates of pain
under-treatment in Aboriginal populations may be related
to not knowing how to ask an Aboriginal child about their
pain experience or how they conceptualize or convey pain;
or, it may be related to the existence of a valid and reliable
Aboriginal Children and Physical Pain: What Do We Know?
way for health providers to assess all Aboriginal children’s
pain. For example, current pain assessment measures
quantify intensity of pain [i.e., the Visual Analogue Scale
(VAS) and the Numerical Rating Scale (NRS)]; pain may
not be considered so one-dimensionally in Aboriginal
culture. In fact, Aboriginal people think about pain within a
broad context of well-being and as a function of mind, body,
and spirit (Strickland, 1999). In one Australian study, the
use of the VAS was reportedly discontinued with a group
of Aboriginal people, possibly because the scale did not
correspond with their understanding of pain (Padianathan,
2000).
Various instruments have been developed to capture
children’s pain intensity. Two of these instruments include
the Wong-Baker Faces Pain Scale (WBFPS) (Wong, &
Baker, 1988) and the Faces Pain Scale-Revised (FPS-R)
(Bieri, Reeve, Champion, Addicoat, & Ziegler, 1990). Some
clinicians and researchers have adapted the images of nonwhite, Anglo-Saxon faces in these rating scales to be more
representative of others who are non-white. One group of
Canadian clinical researchers led by nurse Dr. Jacqueline
Ellis developed and validated the Northern Pain Scale
(NorthPS) (Ellis et al., 2011) by adapting the WBFPS scale
using Inuit language and culture. The WBFPS faces were
redrawn to reflect an Inuk person’s expression and their
style of dress and then translated into Inuktitut. In Ellis’
study, Inuktitut participants from an Eastern Canadian
community compared the NorthPS with the NRS and
WBFPS. While the younger children preferred the WBFPS,
participants over 40 years of age chose the NorthPS. Ellis
et al. accounted for this finding by indicating that the Inuit
people have well-developed spatial abilities that would
be more in tune with the “northern images” providing a
more visually rich experience; this was thought to be more
relevant when compared to the linearity of the numerical
rating scale. This discussion is important to consider when
understanding how Aboriginal children in general express
their pain. The NorthPS is one of the first culturally and
linguistically adapted options for the assessment of pain
intensity for Inuktitut-speaking children and adults. The
images, however, are specific to northern Aboriginal groups
for language and dress.
The pain scales discussed have been used reliably
in studies with Inuit children (Ellis et al., 2011), Thai
children in Bangkok (Neuman et al., 2005), and AfricanAmerican children in the United States (Luffy, & Grove,
2003). As well, the FPS-R was also understood by Arab
children in a study in Amman, Jordan (Finley, Forgeron,
& Arnaout, 2008). Although Neuman et al. reported
that African-American children used significantly fewer
verbal responses to pain, similar to what some consider is
the Aboriginal child’s pain expression, and compared to
European-American children, the Faces Pain Scale was
still deemed reliable (Neuman et al., 2005). This has not
been documented in Aboriginal children. While these
scales reportedly reliably measure pain intensity, it might
be helpful to consider the child’s pain experience and
conceptualization of pain more broadly. We may want to
explore the issue more holistically and from the child’s
cultural socialization of the pain experience—what has
become the norm or what is acceptable to endure.
PAIN EXPERIENCE
According to the 2007/2008 Canadian Community
Health Survey, 1 in 10 Canadians ages 12–44 years (1.5
million people) experience chronic pain; the incidence is
highest among low income and Aboriginal households
(Ramage-Morin, & Gilmour, 2011). In addition, Meana,
Cho, and DesMeueles (2004) explored women’s health
issues and found that the highest rates of chronic pain
across Canada were noted in Aboriginal women less than
65 years old. Both of these studies linked chronic pain with
limitation on daily activities, functional outcomes, and
work. Interestingly, lower rates of immunizations—routine
procedures known to cause pain—have been reported in
Canadian Aboriginal children. Lemstra et al. (2007), for
example, found the measles, mumps, and rubella (MMR)
immunization rate to be 43 per cent among Aboriginal
children compared to 90 per cent among non-Aboriginal
children. There are higher incidences of pain-related illnesses
in Aboriginal youth mentioned above (e.g., headaches,
juvenile rheumatoid arthritis, dental and musculoskeletal
pain). Vaccines are used to prevent advanced illnesses such as
human papilloma virus and thus cervical cancer. Given all of
the above, we must deepen our knowledge of the expression
and interpretation of pain among Aboriginal children since
this may be a barrier to health-seeking behaviour.
WHAT ARE THE NEXT STEPS?
In clinical practice, especially with an initial
consultation, parents are relied upon to assist a health care
provider in understanding a child’s pain and the way that
Journal of Aboriginal Health, November 2012
11
Aboriginal Children and Physical Pain: What Do We Know?
they express it to determine what is normal and what is not.
It has been observed that women in Aboriginal communities
make the majority of health care decisions for themselves
and their families (Kurtz, Nyberg, Van Den Tillaart, & Mills,
2008). Establishing effective communication with Aboriginal
women is therefore as important as communicating with
their children. Understanding how decisions are made
regarding health-seeking behaviour within the family
would be an important first step in understanding who
to interact with and how to gather health information.
Furthermore, understanding how pain is conceptualized and
the expectations regarding management would be equally
important to identify from a cultural perspective. Traditional
medicine and health practices may include discussing
emotional pain when assessing physical pain (Smylie, 2001).
Therefore, it may be appropriate for health care providers
to ask “what does this (pain) mean to you?” rather than
“how bad is it?” Then, the health care provider should ask
“how have you managed it in the past?” or “what is your
expectation of how it could be managed?”
It has been shown that children in Aboriginal
communities suffer unnecessarily from pain more frequently
than non-Aboriginal children. Factors that contribute
to this are complicated and may include reduced health
status related to historical events, cultural influences,
social determinants of health, and interactions with health
professionals, all of which result in ineffective assessment
and treatment of pain. We are concerned that this likely
creates a cycle of untreated pain and distrust, and that
children are suffering unnecessarily as a result. We believe it
could be helpful to find new ways to understand children’s
pain that may not be based on what non-Aboriginal health
providers are used to (i.e., pain scales measuring intensity).
Rather, we should explore new culture-based approaches to
communicating in general, both verbal and non-verbal, and
through family members.
Next steps should include researching ways to learn
about the family’s conceptualization and decision-making
process when it comes to pain tolerance and treatment, the
child’s learned pain expression, and the health provider’s
interpretation of that pain. Once we have a better
understanding of these areas, it would be essential to again
partner with community members to spread evidence-based
culturally appropriate pain knowledge. The goal would be
to reduce the incidence of pain experiences for Aboriginal
children and increase their life-long wellness. This paper
12
Journal de la santé autochtone, novembre 2012
provides a forum for discussion and discovery of what is
known and what needs to be known about pain expression,
interpretation, and management for Aboriginal children. It
may be helpful to guide those with an interest in exploring
this issue further.
ACKNOWLEDGEMENTS
The authors would like to acknowledge the Atlantic
Aboriginal Health Research Program and the Nova Scotia
Health Research Foundation for their support of the
Understanding Pediatric Pain in Aboriginal Communities
(UnPPAC) initiative. In addition, we would like to thank
Danielle Duckworth-Schirmer, School of Nursing,
Dalhousie University and Martin Laycock and Sharon Amey,
Centre for Pediatric Pain Research, IWK Health Centre for
their assistance in gathering the literature for this paper.
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Journal de la santé autochtone, novembre 2012
Cultural Safety: A Framework for
Interactions between Aboriginal
Patients and Canadian Family Medicine
Practitioners
Ava C. Baker Faculty of Medicine, University of Calgary, Calgary, Alberta
Audrey R. Giles, School of Human Kinetics, University of Ottawa, Ottawa, Ontario
ABSTRACT
Current approaches for non-Aboriginal family medicine practitioners encountering Aboriginal
patients are based in cultural sensitivity, which is an inadequate model to satisfy the obligation of
family medicine residents and physicians to Aboriginal health in Canada. In this paper, we advocate
for the adoption of a cultural safety approach as a superior method for training family medicine
residents in interactions with Aboriginal patients. Family medicine programs can integrate cultural
safety into their curriculum by teaching residents about the colonial history of Aboriginal people to
foster understanding of power imbalances. This knowledge can then be used to help family medicine residents learn to identify their own biases that may affect the care of Aboriginal patients. By
advocating for family medicine practitioners to use cultural safety to challenge their own concepts
of culture and to address their own worldviews, patient encounters between non-Aboriginal family
physicians and Aboriginal patients may be made safer and more productive.
KEYWORDS
Cultural safety, Aboriginal health, family medicine, residency
Journal of Aboriginal Health, November 2012
15
Cultural Safety: A Framework for Interactions
INTRODUCTION
Aboriginal Peoples (First Nations, Inuit, and Métis)
have the worst population health statistics in Canada.
Whether it is infectious diseases, such as tuberculosis, or
chronic health problems, as with heart disease or diabetes,
Aboriginal people in Canada are generally in worse health
than non-Aboriginal Canadians (Waldram, Herring,
& Young, 2006). Most family medicine residents and
physicians are aware that there is a disparity in health
status between Aboriginal and non-Aboriginal Canadians.
This awareness can be harmful, however, if it leads to the
impression that people of Aboriginal heritage are inherently
sick, whether due to genetic, social, or historical factors
(Elliot & de Leeuw, 2009). Such an impression puts family
medicine residents and physicians at risk of blaming
Aboriginal people for their health status. In this paper, we
examine the ways in which the health status of Aboriginal
Canadians is related to family medicine residents’, and
subsequently family physicians’, treatment of Aboriginal
patients. We argue for the use of cultural safety as a model
for interactions between non-Aboriginal practitioners and
Aboriginal patients. Cultural safety provides a framework in
which these parties may participate in cross cultural health
care while acknowledging historical colonial attitudes and
worldviews, in an attempt to provide an environment that is
safe for each individual receiving care (Brascoupé & Waters,
2009). Although cultural safety has been written about in
the context of medicine in Canada, little emphasis has been
put on family medicine practitioners’ obligation to culturally
safe medical care for Aboriginal Canadians. Here, we
address this gap in the literature.
We acknowledge that family practitioners come from
a wide variety of ethnic and cultural backgrounds. In
this paper, we focus on non-Aboriginal family medicine
practitioners’ interactions with Aboriginal patients for
several reasons. First, as previously mentioned, Aboriginal
people are generally in worse health than other Canadians;
as such, Aboriginal patients are deserving of particular
attention. In addition, though we cannot assume that
Aboriginal health providers will automatically treat all
Aboriginal patients in a culturally safe manner, especially
given the rich diversity of Aboriginal people in Canada,
their lived experiences as Aboriginal people may inform
their interactions with other Aboriginal Canadians.
Furthermore, we agree with Smylie (2001) that “to speak for
16
Journal de la santé autochtone, novembre 2012
others. . . would be to show disrespect” (p. 2444). Therefore,
Aboriginal family practitioners’ experiences are beyond the
scope of our paper. Instead, we focus on cultural safety as
a novel way for non-Aboriginal family medicine residents
(including the first author) and physicians to style their
therapeutic approach when interacting with Aboriginal
people.
Colonial History and Aboriginal Health
Since first contact with Aboriginal people, nonAboriginal physicians’ approach to the provision of
health care has been to use European derived medical
practices to promote a particular agenda: the assimilation
and civilization of Aboriginal Peoples (Kelm, 1998).
Indeed, even residential schools, Canada’s most notorious
assimilation attempt, were justified by “the basic notion that
the First Nations were, by nature, unclean and diseased [and]
residential schooling was. . . a means to ‘save’ Aboriginal
children from the insalubrious influences of home life onreserve” (Kelm, 1998, p. 57; emphasis in original). Such an
approach perpetuated the “perception that Aboriginal people
were inherently unhealthy so long as they. . . were not fully
assimilated” (Kelm, 1998, p. 62). The perception that being
unassimilated led to ill health in Aboriginal populations set
the stage for the insidious discrimination that exists within
the current Canadian health care system.
The recurrent portrayal of Aboriginal people in
epidemiological studies as unhealthy and dependent
contributes to family medicine residents’ and physicians’
biases about Aboriginal patients (Elliot & de Leeuw, 2009).
While knowledge of Aboriginal patients’ disproportionately
poor health status is important because it brings awareness
to health disparities, studies often do not provide a context
for their conclusions. Without an understanding that
“racial difference in health status can be attributed to. . .
the systematic experience of discrimination and prejudice”
(Raphael, Bryant, & Rioux, 2006, p. 174), epidemiological
studies risk painting a picture of sick, needy Aboriginal
people who are constitutionally less able to sustain good
health than non-Aboriginal people.
Ingrained negative attitudes toward Aboriginal people
affect the ways family medicine residents and physicians
approach medical problems in Aboriginal populations.
In general, the problem is not that individuals hold racist
beliefs, but rather that “it is probable that [resident]
attitudes, beliefs, and prejudices regarding minority groups
Cultural Safety: A Framework for Interactions
broadly reflect those of the societies in which they have
been raised or are located” (Crampton, Dowell, Parkin, &
Thompson, 2003, p. 595). The society in which Canadian
residents and physicians work is a product of many years
of colonial systems, which alienate Aboriginal people
through forced conformity to dominant Eurocentric practice
(Browne & Fiske, 2001). The often subtle, ingrained colonial
attitudes in medical education and medical institutions
contribute to Aboriginal people’s poor health.
As products of colonial systems, non-Aboriginal family
medicine residents and physicians themselves are subject to
a system of persistent power imbalances, although Canada
is arguably in a “post-colonial” age. Kelm (1998) described
colonialism as:
a process that. . . includes geographical incursion,
sociocultural dislocation, the establishment of external
political control and economic dispossession, the
provision of low-level social services, and, finally, the
creation of ideological formulations around race and
skin colour, which position the colonizers at a higher
evolutionary level than the colonized. (p. xviii)
There is an unspoken social power imbalance created
by non-Aboriginal physicians and residents who are in
a position of “superiority” both because of their medical
knowledge (Elliot & de Leeuw, 2009) and deep seated
colonial attitudes. This positional superiority may contribute
to negative health care experiences for Aboriginal patients,
which can worsen the problem of poor health among
Aboriginal Canadians.
In their investigation of First Nations women’s
experiences with mainstream health care, Browne and Fiske
(2003) gave an example of how attitudes of superiority affect
Aboriginal patients’ care. One of their research participants,
who had sustained a black eye in a softball game and
later brought her daughter to the emergency room for a
worsening fever, shared this story with the researchers:
I went into the emergency. . . I had my daughter,
screaming, fever. Her bum was just really red and raw
[with a rash], and. . . they apprehended her from me
right there. . . just because I’m a Native person that
came in with a black eye. . . It was just because of how I
looked. (p. 136)
This example illustrates assumptions grounded in
racist beliefs that Aboriginal people often face when
encountering non-Aboriginal health care providers: that an
Aboriginal woman with a black eye must be living in abusive
circumstances, and therefore her child must be apprehended
to be “protected.” While this example may seem extreme, it
reflects racist attitudes toward and beliefs about Aboriginal
people that the first author has seen expressed by family
medicine residents and family physicians: that if the patient
is Aboriginal, he or she must be a substance abuser; that
Aboriginal people do not come to their appointments; and
that Aboriginal people are responsible for their own health
conditions and therefore less deserving of equitable health
care.
Family Medicine’s Obligation to
Aboriginal Patients
Both Canadian law and the goals of family medicine
(College of Family Physicians of Canada [CFPC], 2012)
dictate that Canadian family medicine residents and
physicians must be extremely attentive to Aboriginal
people’s health needs. Aboriginal people in Canada
are entitled to health care by virtue of both treaty and
constitutional rights. Boyer (2003) summarized the
Canadian government’s responsibilities to Aboriginal
people’s health as the “right to medical services, a fiduciary
duty to provide medicines. . . [an] expectation to receive
supplemental medicines and health care, and an Aboriginal
right to health” (p. 6). Canadian family medicine residents
and physicians therefore should be well versed in Aboriginal
health to provide excellent care that promotes Aboriginal
peoples’ right to health and health care.
Canadian family medicine residency programs also
have an obligation to promote Aboriginal health issues
in their curricula. The CFPC has recently released new
guidelines for residency training known as the Triple C
Competency-based Curriculum (Triple C) (Tannenbaum
et al., 2011). Triple C stands for a curriculum that includes
“comprehensive care and education. . . continuity of
education and patient care. . . [and is] centred in family
medicine” (Tannenbaum et al, 2011, pp. 2-3). This new
curriculum indicates a specific commitment to directing
family medicine services toward “priority health concerns”
(Tannenbaum et al., 2011, p. 9). In its focus on priority
health concerns, the World Health Organization (WHO)
Journal of Aboriginal Health, November 2012
17
Cultural Safety: A Framework for Interactions
promotes social accountability through medical education by
addressing the needs of populations that have not received
equitable distribution of health care (as cited in Masi,
2000). The CFPC also explicitly states that its first goal is
to “champion quality health care for all people in Canada”
(CFPC, 2012, emphasis added). Improving Aboriginal
people’s health status must therefore be a clear objective of
Canadian family medicine training programs. As a result,
this responsibility is not a choice for family medicine
residents and physicians in Canada but an obligation.
Cultural safety, which we discuss below, provides the best
means for family medicine programs to teach residents to
address issues of ingrained colonial practice in the Canadian
health care system. The current methods used to teach
Aboriginal health care—that is, cultural sensitivity—fall
short of this objective as they do not adequately prepare
family medicine residents to deal with the complex issues
surrounding relationships with Aboriginal patients.
Why Not Continue With Cultural
Sensitivity Alone?
Cultural sensitivity is currently one of the most
pervasive models used when dealing with social difference in
a variety of fields (Foranda, 2008). It has several important
shortcomings, however, in addressing interactions between
Aboriginal patients and non-Aboriginal family medicine
residents or physicians. In a critique of cultural sensitivity
by the Indigenous Physicians Association of Canada and
the Royal College of Physicians and Surgeons of Canada
(IPAC RCPSC) (2009a), these organizations defined
cultural sensitivity as “the recognition of the importance
of respecting difference” (p. 8). Foranda (2008) identified
several important features of cultural sensitivity in a review
on the subject: “knowledge, consideration, understanding,
respect and tailoring” (p. 210). In the cultural sensitivity
model, these elements are cultivated by the health care
provider and applied to the culture of the “other,” that is, the
patient.
Cultural sensitivity leads to two problems in particular:
first, the need for cultural stereotyping to apply the four
aforementioned elements; and second, a continuation of
colonial attitudes in which non-Aboriginal health care
practitioners provide the “solution” for concerns caused by
differences based on an arbitrary, Euro-Canadian norm.
The cultural sensitivity model emphasizes ethnographic
details and applies them with a broad brush to all
18
Journal de la santé autochtone, novembre 2012
individuals of a particular ethnic background, a practice
that can lead to stereotyping (Richardson & Williams,
2007). IPAC-RCSPC (2009a) called this “a series of ‘do’s
and don’ts’ that define how to treat a patient of a given. . .
ethnic background” (p. 8). Through the current Canadian
approach, cultural sensitivity is at risk of being presented as
a “cultural checklist” (Ramsden 2002, p. 81) where students
simply parrot concepts about cultures different than their
own. In this model, culture is usually narrowly defined as
synonymous with ethnicity, and care is provided regardless
of individual variations in the learned checklist (Papps &
Ramsden, 1996).
Cultural sensitivity also carries the risk of perpetuating
colonial attitudes toward Aboriginal patients. It implies the
non-Aboriginal health care provider is the one with the
“correct” culture, interacting with the “other” culture, rather
than as a participant in the interaction of two cultures.
Cultural sensitivity alone risks focusing on learning the
culture of “others,” which firmly establishes a division
between Aboriginal patient and non-Aboriginal family
medicine practitioner, subtly reinforcing ideas of cultural
superiority that persist from the colonial era.
What is Cultural Safety?
Cultural safety is a concept developed to address
concerns surrounding the health of the Māori, the
indigenous peoples of what is now known as New Zealand.
The concept was developed by nursing educators, including
Irihapti Ramsden, a Māori nurse and scholar from New
Zealand. Ramsden (2002) defined cultural safety’s concerns
as being “with the notion of the nurse as a bearer of his
or her own culture and attitudes, and consciously or
unconsciously exercis[ing] power” (p. 109). Within cultural
safety, the definition of culture is widened to include “age or
generation, gender, sexual orientation, socioeconomic status,
ethnic origin, religious or spiritual belief or disability” (Papps
& Ramsden, 1996, p. 496). It has been further argued that
worldview or values can also be included in this list. Thus, the
concept is founded on the premise that while mainstream
health care providers may unintentionally define patients as
“different” based on their idea of themselves as the “norm,”
there are in fact two multifaceted cultures interacting in
health care encounters: the provider’s and the patient’s
(Richardson & Williams, 2007). To negotiate the interaction
of two cultures, Ramsden (2002) outlined four key objectives
that are central to the development of cultural safety:
Cultural Safety: A Framework for Interactions
to educate [learners] not to blame the victims of
historical process for their current plights, to examine
their own realities and the attitudes they bring to each
new person they encounter in their practice. . . to be
open minded and flexible in their attitudes toward
people who are different from themselves. . . [and]
to produce a workforce of [practitioners] who are
culturally safe to practice, as defined by the people they
serve. (pp. 85, 87)
Canadian family medicine residency programs
can use these principles to overcome the pitfalls of the
cultural sensitivity approach, so they may avoid superficial,
ethnocentric care that causes further “othering” during
patient encounters.
In New Zealand, the teaching of cultural safety is a
progression of knowledge that builds stepwise into nursing
curriculum. The knowledge requires cultural awareness,
defined as an understanding that there are differences
between cultures, and cultural sensitivity (Roy Michaeli,
2007). The pinnacle of the teaching is cultural safety, which
involves the development of a trust relationship between
the health care provider and the patient in the context of
recognition and respect of individual difference (Ramsden,
2002). In contrast to cultural sensitivity, which focuses on
learning facts about the “other,” cultural safety emphasizes
the Freirean principle of self understanding in the context of
political and social environments (Ramsden, 2002). Cultural
safety makes understanding one’s own cultural position as
a result of historical and societal factors a priority; such an
approach would allow non-Aboriginal family medicine
residents and physicians to understand the imbalance
of power that can exist in interactions with Aboriginal
patients. Residents and physicians can learn to address this
imbalance in their own attitudes and approaches. Within
family medicine, the goal for practitioners is to use this self
awareness to achieve a patient encounter that the patient
perceives as culturally safe. Non-Aboriginal family medicine
residents and physicians must learn not to ask, “Why are the
actions or plans of this Aboriginal patient not in line with
my cultural worldview?” but rather, “Why do my actions or
treatment plans not fit into the cultural worldview of this
Aboriginal individual and how will we together negotiate
this difference?”
The predicted outcome of teaching cultural safety
is cultural competence, or a set of behaviours, practices,
policies, attitudes, and structures that allow individuals or
organizations to have successful cross cultural encounters
(Goode, Dunne, & Bronheim, 2006). While these markers
of cultural competence are useful for health care providers
to evaluate their progress through the continuum from
cultural awareness to cultural safety, it is important to note
that the ultimate power of evaluation of the safety of an
encounter rests with the patient. Ball (2009) described
cultural competence as independent variables that affect the
dependent variable, cultural safety. Ball (2009) further stated,
“whether a patient feels culturally safe is dependent in part
on whether the care provider is culturally competent” (p. 5).
While cultural safety was developed in the context of
nursing in New Zealand, it is a very productive concept for
family medicine residents and physicians in Canada. Māori
people in New Zealand and Aboriginal people in Canada
are clearly very different populations, but they were (and
some would argue still are) subjected to similar colonial
policies (Armitage, 1995). Additionally, the countries in
which they live have similar disparities in health between
indigenous and non indigenous residents (Bramley, Hebert,
Jackson, & Chassin, 2004). Cultural safety prompts the
health care provider to rid him- or herself of the view of an
indigenous person as being inherently sick and instead focus
on deeper historical causes of health disparities (Ramsden,
2002). In the cultural safety model, understanding the
importance of not blaming “victims of the historical process”
is coupled with the healthcare provider’s self examination
of personal circumstance and bias (Ramsden, 2002, p. 85).
Cultural safety also allows for a freedom from the veiled
colonialism inherent in medicine, encouraging practitioners
“to be open minded and flexible in their attitudes
toward people who are different from themselves” and to
understand that the ability to define an encounter as safe or
not safe lies only with those receiving care (Ramsden, 2002,
p. 87).
It is difficult to give a particular example of cultural
safety because it is so dependent on the patient involved.
It is also important not to generalize principles from one
patient’s culture to another patient. With these cautions
in mind, as an illustration, here we share an actual case
situation that involved a medical student (the first author)
in an obstetrical clinic who met a 48 year old Aboriginal
woman in her eighth pregnancy and carrying twins. The
obstetrician expressed his frustration with the patient to
the first author, noting that the patient had not only been
missing her prenatal appointments with him, but also had
Journal of Aboriginal Health, November 2012
19
Cultural Safety: A Framework for Interactions
been missing her regular ultrasounds to monitor the growth
and well being of the fetuses in this high risk pregnancy.
The implication of his complaint was that the reason for
the missed appointments was related to her Aboriginal
heritage. Through the course of the visit, the first author
asked the patient and her family if they could help her to
understand why it was possible for them to attend this
particular appointment, but not the other appointments and
ultrasounds. The patient explained that she could only come
to her appointments when her husband was able to drive her
to town from the reserve, which was only on days when he
did not have to work. In the community where this family
lived, it was difficult to miss work without a doctor’s note
for fear of losing one’s job. The first author asked if there
was anything that she or the health care team could do to
facilitate transportation to medical appointments. The family
thought that having a doctor’s note for the husband to miss
work would ease some of the stress related to transportation,
and so this note was provided.
In this case, the first author and the patient had to work
together through their differing worldviews and cultures
to come to a care plan that was both medically safe and
acceptable to the patient. In the culture of medicine, the
most important thing was that the surveillance of the fetuses
be carried out as recommended. There were, however, a
number of conflicting values at work for the patient. She
was obviously concerned for the well being of her fetuses;
nevertheless, she had a large family and could not risk
her husband’s employment by having him drive her to
ultrasound appointments, which was a consequence of her
socioeconomic status. Furthermore, the lack of resources on
the reserve where she lived meant she must drive 45 minutes
to attend appointments. This combination of circumstances
had prevented the patient from being able to take advantage
of the health services offered. It was important in this case
that the first author recognized circumstances beyond the
patient’s control or blame (such as the lack of resources in
her own community) and work with the patient to search
for solutions together. The process of arriving at the ultimate
solution was helped by recognizing the common ground
the patient and the first author shared: they were both
concerned for the outcome of the pregnancy. Although
not illustrated in this example, there could also have been
a formal or informal evaluation of the encounter by the
patient and her family to determine its safety from their
point of view. It is through case studies like this that family
medicine programs can begin to teach cultural safety to
residents.
20
Journal de la santé autochtone, novembre 2012
Incorporating Cultural Safety into
Family Medicine Residency Training
Administrators of Canadian family medicine programs
can incorporate cultural safety into their curricula through
several methods. Here, we address two main strategies:
educating residents about the history of Aboriginal Peoples
in Canada and using case studies as starting points for
self-reflection. Understanding Aboriginal history is vital
for the development of cultural awareness and cultural
sensitivity as a foundation for cultural safety (Ramsden,
2002). Once they master this knowledge, residents can use
case studies to practice identifying personal worldview and
culture, and learning to be flexible in their agendas and
views. As residents learn to understand and meet the needs
of the patient as an individual within his or her own cultural
context—instead of seeking outcomes that appeal to the
resident’s own cultural worldview—the result will be more
culturally safe health care encounters.
IPAC-RCPSC (2009b) has developed a 20-question
slide show for educators to use in teaching some of the
history of Aboriginal Peoples in Canada from a cultural
safety worldview. The questions and their teaching points
educate learners about Aboriginal history, such as the true
or false question “The written federal policy [for residential
schools] was intended to assimilate First Nations children
by educating children away from family and community.
Canada’s residential school policy therefore, met one of the
United Nations definitions of genocide” (Answer: true) (p.
19). The questions also raise issues of systematic racism, as
in the question “In what year did all Canadian Aboriginal
people receive federal voting rights?” (Answer: 1960) (p.
14). Finally, the teaching module addresses stereotypes: “If
you compare the percentage of First Nations people who
consumed alcohol in the past year with the percentage
of the general population who did so it would be higher/
lower/the same” (Answer: lower) (p. 26). Included in this
resource are suggested discussion topics, such as residential
schools or the late recognition of Aboriginal people
as federal voters. Educators can use such questions as
springboards for discussions about intergenerational trauma
and governmental policies toward Aboriginal people and
how these issues may affect individual patients. Most of all,
this module emphasizes the need for session facilitators to
challenge learners to self-reflect. For example, the module
suggests questions such as “Why do you think that is the
case?” or “How did you form that impression?” (IPAC-
Cultural Safety: A Framework for Interactions
RCPSC, 2009b, p. 5) to encourage learners to understand
their own cultural biases as they relate to each of these topics
and, in turn, to the practice of family medicine.
In her dissertation on cultural safety, Ramsden (2002)
used many illustrations of using practice examples to help
learners better understand personal cultural bias or belief.
In Canadian family medicine residency programs, this
could take the form of analyzing practice examples that
residents bring forward, taking practice examples from other
sources, or using videos that stand as practice examples. For
example, in the case of the patient missing her ultrasound
appointments, cultural biases such as “Aboriginal patients
always miss their appointments” might rest in the resident’s
assumption “that patient must not care about her health,
so why should I?” This is a false assumption that is based
on that resident’s cultural beliefs. Such beliefs must be
acknowledged and addressed in order for residents to be able
to negotiate cultural differences with patients.
Conclusions
The disparity between Aboriginal and non-Aboriginal
health status in Canada has been well documented in the
literature, and cultural safety has been frequently cited as
a potential way to address this difference; yet, there is little
evidence of its inclusion in Canadian family medicine. Most
current research articles on cultural safety extol its benefits
and give suggestions on how it might be implemented, but
the predicted outcome of improved cultural competence
has not yet become a reality in Canadian family medicine.
We propose that this is partly because the systemic bias in
medical culture against Aboriginal people in Canada has
led to an attitude in medical education that knowledge
related to culture is supplementary rather than core material.
We believe that with the implementation of the Triple
C curriculum (Tannenbaum et al 2009), family medicine
residency programs can no longer consider cultural safety
education as superfluous, but rather as essential to the
development of skilled family practice physicians. It is
crucial that family medicine practitioners examine their own
worldviews and beliefs to challenge the colonial worldview
that persistently pervades modern medicine and undermines
Aboriginal people’s health. As Belfrage (2007) explained,
“We can’t change history. We can change our knowledge and
understanding of it” (p. 538).
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Assessment of Tuberculosis Outbreak
Definitions for a First Nations On-Reserve
Context
H. Samji, BA, MSc, British Columbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia
D. Wardman, MD, FRCPC, MCM, Office of Community Medicine, First Nations and Inuit Health
Branch, Ottawa, Ontario
P. Orr, MD, MSc, FRCPC, Departments of Medicine, Medical Microbiology, and Community
Health Sciences, University
ABSTRACT
Improving the prevention and control of tuberculosis (TB) in Aboriginal communities in Canada
is a matter of great urgency. Canadian-born Aboriginal people account for 21% of TB cases in the
country even though they represent only 3.8% of the overall population. Moreover, age standardized rates of TB in Aboriginal people reveal an incidence almost six fold greater than the national
rate. There are unique challenges in the prevention and control of TB in First Nations populations.
We sought to investigate whether the Canadian Tuberculosis Standards definition being used
Canada wide to address TB is appropriate in a First Nations on-reserve context or whether alternate
definitions should be considered. In this study, we spoke to health care workers, scientists, and
administrators involved in TB programs and care across the country to assess the suitability of the
definition used to classify an outbreak. Our data showed that the majority of study participants did
not support a First Nations-specific TB outbreak definition. Participants felt that a response protocol
would be useful, along with a preamble to the definition detailing unique circumstances that may
pertain to an outbreak on-reserve.
KEYWORDS
Tuberculosis, First Nations, outbreak, policy
Journal of Aboriginal Health, November 2012
23
Assessment of Tuberculosis Outbreak
INTRODUCTION
T
he World Health Organization (WHO) estimates
that one-third of the world’s population is infected
with Mycobacterium tuberculosis (TB). In 2007, there
were an estimated 9.27 million incident cases and over 13
million prevalent active cases of TB worldwide, with an
estimated 1.7 million deaths attributable to the disease
(Onozaki & Raviglione, 2010).
TB was a major cause of morbidity and mortality
in Canada throughout the first half of the 20th century.
Canadian TB disease and death rates then declined rapidly,
primarily due to improvements in living conditions and
public health measures that helped interrupt transmission.
Further gains followed with the development of effective
drug treatment. In 2008, the incidence of TB in Canada
was less than 5 per 100,000 people (Public Health Agency
of Canada [PHAC], 2009). This low rate of disease masks
the heterogeneity of disease rates by population group,
jurisdiction, and community.
In Canada, most cases of TB occur in two groups:
new (foreign-born) Canadians, who account for 62%
of cases, and Canadian-born Aboriginal people, who
account for 21% of cases (PHAC, 2009) even though they
represent only 3.8% of the overall population (Statistics
Canada, 2008). There are three major groups of Aboriginal
Peoples in Canada: First Nations, Métis, and Inuit. Agestandardized rates of TB in Aboriginal populations show
an incidence almost six-fold greater than the national
rate. Even with the recent overall decline in the rates of
TB infection, TB incidence is still unacceptably high in
Aboriginal populations, with a rate of 28.2 per 100,000
in 2008 (PHAC, 2009). Unique challenges exist in the
prevention and control of TB in First Nations populations.
These include the wide dispersal of populations over large
and remote geographic areas, jurisdictional issues in health
care delivery, the imperative to deliver culturally appropriate
care, and the prevalence of socioeconomic and biologic risk
factors for TB. These include poverty, malnutrition, poor
housing, and chronic health problems such as diabetes
(Long & Ellis, 2007).
The Canadian Tuberculosis Committee, which
advises PHAC on national TB control and prevention
strategies, has established a subcommittee specifically to
address TB in Aboriginal populations in Canada. The
24
Journal de la santé autochtone, novembre 2012
Aboriginal TB Scientific Subcommittee is tasked with
providing scientific, evidence-based and expert advice to
the Canadian Tuberculosis Committee. It has no decisionmaking authority over programs or regulatory functions,
nor is it responsible for the implementation of its advice.
The First Nations and Inuit Health Branch (FNIHB) of
Health Canada, which works with provinces, regions, and
communities to provide public health services—including
TB programming to First Nations on-reserve and Inuit
in Nunatsiavut—worked with the subcommittee on this
project.
In 2008, the Aboriginal TB Scientific Subcommittee
contacted a broad group of health care workers, scientists,
and administrators in TB programs about issues that they
would like the committee to investigate. One issue identified
was whether the outbreak definition included in the CTS
was relevant to First Nations communities on-reserve, and
whether a definition specific to First Nations people living
on-reserve was needed.
The general definition of a disease outbreak is the
occurrence of more cases than expected over a given time.
A specific TB outbreak definition proposed by the U.S.
Centers for Disease Control and Prevention (CDC) is
included in the Canadian Tuberculosis Standards (CTS),
6th Edition, and is used throughout Canada:
During (and because of ) a contact investigation, two or
more contacts are identified as having active TB, regardless
of their assigned (contact investigation) priority; or
Any two or more cases occurring (within) ≤ 1 year of
each other are discovered to be linked, and the linkage
is established outside of a contact investigation (e.g.
two patients who received a diagnosis of TB outside of
a contact investigation are found to work in the same
office, and only one or neither of the persons was listed
as a contact to the other). The linkage between cases
should be confirmed by genotyping results if isolates
have been obtained. (Long & Ellis, 2007, p. 268)
The sensitivity of the general definition in a First
Nations context was questioned. For example, if three
cases occur in a single household, this does not necessarily
mean there is an outbreak in the community. Given
that definitions are important for the communication,
coordination, and collaboration of public health programs, it
was thought that the issue merited further study.
Assessment of Tuberculosis Outbreak
With these considerations in mind, a study was
proposed to address the issue of outbreak definitions in First
Nations communities. This study used a qualitative design
to examine the importance of a TB outbreak definition for
a First Nations on-reserve context. As part of this work, we
reviewed literature both in Canada and internationally to
identify TB outbreak definitions for indigenous populations.
We found that most TB programs outside of North America
use the CDC’s definition. Two additional definitions were
suggested by members of the Aboriginal TB Scientific
Subcommittee.
Methods
We contacted a broad representation of individuals with
expertise in TB programming to participate in this study.
Health care workers, scientists, and others affiliated with
First Nations organizations and communities, as well as
provincial, territorial, and federal TB programs in Canada
and the United States, were invited via email to participate in
a telephone interview. We considered American involvement
appropriate because of Canada’s use of the CDC’s outbreak
definition and the similarity of on-reserve populations in
both countries. Participation in the study was voluntary
and codes were assigned to each individual to maintain
confidentiality. There was a single interviewer, who was the
only one with access to these codes and who solely carried
out the analysis.
Three definitions for a TB outbreak were presented to
participants:
During (and because of ) a contact investigation, two or
more contacts are identified as having active TB, regardless
of their assigned (contact investigation) priority; or any two
or more cases occurring (within) ≤ 1 year of each other are
discovered to be linked, and the linkage is established outside
of a contact investigation (e.g. two patients who received a
diagnosis of TB outside of a contact investigation are found
to work in the same office, and only one or neither of the
persons was listed as a contact to the other). The linkage
between cases should be confirmed by genotyping results if
isolates have been obtained. (Long & Ellis, 2007, p.268)
More cases than expected for time and place and
there is evidence of recent transmission and work involved
exceeds the usual capacity and/or transmission appears to be
continuing despite adequate efforts by the TB program.
A greater than expected number of cases.
Participants were asked to comment on the
appropriateness of each definition in a First Nations context,
give suggestions for modification of each, and propose
additional definitions that could be considered. They were
also asked if a component related to transmission risk or
issues specific to a First Nations context should be added.
Analysis began with a review of transcripts based on
notes taken during interviews. Units of data were assigned
codes based on themes or issues. The next stage of data
analysis involved categorical aggregation. In this process,
the coded data were reviewed for similar comments or
observations to identify common themes and create a
framework with which to answer the research questions.
Emerging themes were explored among the interviews to
search for relationships, consistencies, and/or inconsistencies
among participants.
Results
A total of 50 potential participants were contacted, with
43 (86%) agreeing to be interviewed. Thirty participants
(70%) felt that there should not be a separate First Nations
on-reserve definition. Participants highlighted a variety
of reasons for this opinion, summarized in Table 1, and
similar proportions of responses were recorded among
interviewees from different organizations (i.e., First Nations
organization or community; federal or provincial program).
Sixteen (53%) of the thirty participants felt a First Nationsspecific definition was not warranted because many of the
issues faced in First Nations communities are not unique to
this population. However, 7 (16%) considered factors such
as increased communal living and different dynamics of
transmission to be reasons for having a specific definition
for on-reserve settings. Twelve (28%) participants observed
that it was important to define criteria for a First Nations
on-reserve outbreak response protocol and to include a
discussion of unique risk factors for TB outbreaks that occur
on-reserve.
Overall, 24 participants (56%) preferred definition 1 (as
published in the CTS), 15 (35%) preferred definition 2, and
4 (9%) preferred definition 3. Again, similar proportions were
noted irrespective of which organization the interviewees
represented.
Although participants preferred definition 1 overall,
they identified a number of issues (summarized in Table
2) it did not address that should be considered in a
potential TB outbreak on-reserve. Advantages to the other
definitions were also considered. For examples, definition
2 was considered easy to follow by 6 participants, took
into account a First Nations context (3 participants), was
adaptable to situations of high and low TB incidence (7
participants), addressed the need for additional resources
Journal of Aboriginal Health, November 2012
25
Assessment of Tuberculosis Outbreak
TABLE 1. Reasons given why there should not be a separate First Nations
on-reserve outbreak definition (n = 30)
Reason
Number (%)
Variability of First Nations on reserve communities across the
country and concomitant differences in risk factors (e.g., urban
vs. rural)
6 (20%)
Importance of comparability among populations
9 (30%)
Racism, stigmatization, and/or privacy issues
7 (23%)
Similar risk factors/social determinants in other populations such
as foreign born or incarcerated persons
16 (53%)
Involvement of off-reserve components in most on reserve
outbreaks
4 (13%)
Sensitivities and politics around the term outbreak
5 (17%)
(3 participants), and recognized the potential for recent
transmission (8 participants). However, it was considered too
vague overall (12 participants). Definition 3 was praised for
its conciseness (4 participants) but was considered not nearly
prescriptive enough (18 participants).
Participants gave feedback on the capacity for a public
health response to an outbreak situation. Eight (19%)
suggested that a formal process for the provision of the
FNIHB funding for a TB outbreak response would be
useful, as well as an outbreak response protocol. Such a
protocol could outline actions to access funding when the
local community response is overwhelmed. Moreover, 4
(9%) participants felt that FNIHB regions should have
access to a TB expert who can determine whether or not a
situation is a true outbreak and whether additional funding
is necessary. Ten (23%) participants commented that public
health capacity is important and should be closely aligned
with the definition but not inherent to it. This indicates that
an outbreak definition is a technical and epidemiological
term that should not include capacity.
Finally, participants were given the opportunity to
suggest a new definition; most, however, preferred to suggest
modifications to the proposed or established definitions.
Two new definitions were given. One participant suggested,
“any two linked active TB cases within a year or less,”
26
Journal de la santé autochtone, novembre 2012
and another participant proposed, “any two or more cases
occurring within one year which are discovered to be linked
epidemiologically, and preferably also mycobacteriologically,
through genotyping if isolates are available.”
Discussion
This study is limited by its qualitative design, which does
not convey statistical relationships. However, the qualitative
nature was consistent with the goals of the study and allowed
us to understand the nuances of support and opposition to
each of the definitions. Because efforts were made to include
pertinent individuals and groups in the study with national
representation, we feel confident that the findings are valid
and generalizable.
It may be argued that sensitivity is more important than
specificity in defining whether or not an outbreak of TB is
present in a population for which aggressive control measures
are required. Participants commented that there may be
opposition to labelling a situation an outbreak by community
leadership in order to avoid stigma. There may also be
reluctance to declare an outbreak due to the implications that
additional resources may be needed. In a rural and remote
setting, staffing and resource shortages occur frequently
(Long & Ellis, 2007).
If a unique context for TB outbreaks were identified, a
tailored definition would have considerable utility. However,
Assessment of Tuberculosis Outbreak
TABLE 2. What are potential changes that could or should be made to the
Canadian Tuberculosis Standards outbreak definition? (n = 43)
Reason
Number (%)
Differentiate between low incidence and high incidence/endemic
settings.
12 (28%)
Use infections in children to identify recent transmission.
10 (23%)
Consider social conditions on-reserve: in a small community,
9 (21%)
everyone is a contact or potential contact. Thus, the transmission
dynamics are unique.
Make a distinction between hyperendemic and outbreak
situations.
9 (21%)
Differentiate between a cluster and a community outbreak.
6 (14%)
Involve a social networking approach.
5 (12%)
Simplify the language and the definition itself, making it easier for 4 (9%)
non-epidemiologists to understand.
many participants were concerned that an unintended
consequence of a unique definition might be that First
Nations Peoples would feel unfairly targeted for TB care.
Legacies of historical discrimination (Evans-Campbell, 2008;
Whitbeck, Walls, Johnson, Morrisseau, & McDougall, 2009)
and current sensitivities about a potential disproportionate
focus on negative portrayals of First Nations Peoples make it
imperative to avoid contributing to negative imaging.
Participants gave additional reasons to support the use
of a single TB outbreak definition across Canada. Outbreaks
often require coordination among on and off reserve health
systems involving multiple jurisdictions and federal and
provincial units. Having different criteria for outbreaks could
complicate communication and impede response efforts. A
single definition would allow greater comparability within
Canada and internationally. Some participants noted that
the social determinants of TB infection in certain First
Nations communities—such as poverty, poor housing, and
lack of access to health services—are also present in other
populations affected by high TB rates, included those who
are incarcerated and new Canadians.
There was support from participants for the creation of
a “preamble” to the outbreak definition that offers guidance
for investigating TB outbreaks on-reserve. Some participants
criticized the CTS definition for failing to take into account
the transmission dynamics on-reserve (e.g., overcrowding).
There was also concern that the CTS definition is too
“wordy” for health care workers “in the field” who may have
little formal epidemiological training and often work in
situations of high staff turnover.
Another concern was that the CTS definition does not
adequately differentiate between primary versus reactivated
TB. Considering that many First Nations people living onreserve have been exposed to and infected with TB during
their lifetimes, it would be useful to determine whether rapid
transmission is occurring or whether cases are reactivations
without linked transmission. Genotyping TB strains could
theoretically aid differentiation but in many First Nations
populations the strains of M. tuberculosis are not unique
(Blackwood, Al-Azem, Elliott, Hershfield, & Kabani, 2003).
Many participants suggested adding a clause citing TB
infections in children as indicative of recent transmission or
pleural TB.
Regional disparities in rates of TB may also complicate
application of the CTS definition. The Atlantic provinces of
Canada have a low incidence of TB in their First Nations
communities, so even one case of TB prompts a significant
response. In contrast, certain communities in the Prairies
have consistently high rates of TB and individuals from
Journal of Aboriginal Health, November 2012
27
Assessment of Tuberculosis Outbreak
those regions expressed a desire for a definition that better
differentiates between hyperendemic and outbreak situations.
We surmise that approaches should be explored to
improve the response to TB outbreaks on-reserve. A
protocol for outbreak investigation and response in First
Nations on-reserve communities has not yet been developed
in Canada but may greatly help in informing an appropriate
response. A graduated approach to outbreak response could
outline steps to take when local capacity is overwhelmed,
such as requesting assistance from the local health authority
or another administrative level within FNIHB, or contacting
a TB expert to help determine whether the situation is truly
an outbreak.
Conclusions
In summary, our study revealed that the majority of
study participants did not support a First Nations-specific
TB outbreak definition. Participants felt that a response
protocol would be useful, along with a preamble to the
definition detailing unique circumstances that may pertain
to an outbreak on-reserve. The results of the study are
important for informing TB control programming in First
Nations communities.
Acknowledgements
We would like to thank those participants who gave
their time and expertise to this study. We would also like to
acknowledge the First Nations and Inuit Health Branch of
Health Canada for financial support of this work.
References
Blackwood, K. S., Al-Azem, A., Elliott, L. J., Hershfield E.
S., & Kabani, A. M. (2003). Conventional and molecular
epidemiology of Tuberculosis in Manitoba. BMC Infectious
Diseases, 3, 18.
Evans-Campbell, T. (2008). Historical Trauma in American
Indian/Native Alaska Communities: A Multilevel Framework
for Exploring impacts on Individuals, Families, and
Communities. Journal of Interpersonal Violence, 3, 316–338.
Onozaki, I. & Raviglione, M. (2010). Stopping tuberculosis in the
21st century: Goals and strategies. Respirology, 15(1), 32–43.
Long, R. & Ellis, E. (Eds.). (2007). Canadian Tuberculosis Standards
(6th ed.). Ottawa: Public Health Agency of Canada and the
Canadian Lung Association/Canadian Thoracic Society.
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Public Health Agency of Canada. (2009). Tuberculosis in Canada
2008 – Pre-release. Ottawa: Author. Retrieved from http://
www.phac-aspc.gc.ca/tbpc-latb/pubs/tbcan08pre/index-eng.
php” http://www.phac-aspc.gc.ca/tbpc-latb/pubs/tbcan08pre/
index-eng.php.
Statistics Canada. (2005). Projections of the Aboriginal populations,
Canada, provinces and territories: 2001 to 2017 (Catalogue No.
91-547-XIE). Ottawa: Author.
Statistics Canada. (2008). Aboriginal identity population, 2006
counts, percentage distribution, percentage change, 2006 counts
for both sexes, for Canada, provinces and territories - 20% sample
data (Catalogue No. http://www.statcan.gc.ca/cgi-bin/IPS/
display?cat_num=97-558-XWE2006002&lang=eng 97-558XWE2006002). Ottawa: Author. Retrieved from http://
www12.statcan.ca/census-recensement/2006/dp-pd/hlt/97558/pages/page.cfm?Lang=E&Geo=PR&Code=01&Table=3
&Data=Count&Sex=1&StartRec=1&Sort=2&Display=Page”
http://www12.statcan.ca/census-recensement/2006/dp-pd/
hlt/97-558/pages/page.cfm?Lang=E&Geo=PR&Code=01&
Table=3&Data=Count&Sex=1&StartRec=1&Sort=2&Displ
ay=Page.
Whitbeck, L. B., Walls, M. L., Johnson, K. D., Morrisseau. A. D.,
& McDougall. C. M. (2009). Depressed Affect and Historical
Loss among North American Indigenous Adolescents.
American Indian and Alaska Native Mental Health Research,
16(3), 16–41.
Old Keyam – A Framework for
Examining Disproportionate
Experience of Tuberculosis Among
Aboriginal Peoples of the Canadian
Prairies
Kathleen McMullin, MEd, Department of Community Health & Epidemiology, University of
Saskatchewan, Prince Albert, Saskatchewan
Sylvia Abonyi, PhD, Community Health and Epidemiology, University of Saskatchewan,
Canada Research Chairs Program, University of Saskatchewan
Maria Mayan, PhD, Women and Children’s Health Research Institute, University of Alberta,
Edmonton, Alberta
Pamela Orr, MD, Department of Medical Microbiology and Infectious Diseases, University of
Manitoba, Winnipeg, Manitoba
Carmen Lopez-Hille, BScN, Department of Medical Microbiology and Infectious Diseases,
University of Manitoba, Winnipeg, Manitoba
Malcolm King, PhD, Institute of Aboriginal Peoples’ Health, Canadian Institutes of Health
Research, Edmonton, Alberta, Department of Medicine, University of Alberta, Edmonton,
Alberta
Jody Boffa, MSc, Department of Family Medicine, University of Calgary, Calgary, Alberta
Richard Long, MD, Department of Medicine, University of Alberta, Edmonton, Alberta,
Tuberculosis Program Evaluation and Research Unit, Edmonton, Alberta
ABSTRACT
On the Canadian Prairies, First Nations and Métis peoples are disproportionately affected by
tuberculosis (TB) compared to other Canadians. Statistics show enduring transmission and high
rates of active TB disease. Despite awareness of the social determinants of TB transmission—such
as substance abuse, comorbidities, and basic needs being unmet—transmission and outbreaks
continue to occur among Aboriginal people. The Determinants of Tuberculosis Transmission project is a mixed methods, interdisciplinary study that used quantitative questionnaires and qualitative interviews to look more closely at patients’ experiences of TB. Provincial Network Committees
(PNCs) comprised of Elders, traditionalists, community-based TB workers, and health researchers
in three participating provinces guided the project from inception through to data analysis, interpretation, and dissemination. The collaborative efforts of the patients, the research team, and the
PNCs uncovered a continuing influence of colonization in TB transmission. Overwhelming feelings
of apathy and despair for the hold that TB continues to have in the lives of patients, families, and
communities is captured by the Cree word “keyam,” which may be translated as “to give up” or to
ask, “What is the use?” This paper explores the concept of keyam in relation to TB transmission.
30
Journal de la santé autochtone, novembre 2012
KEYWORDS
Cree, tuberculosis, colonialism, Aboriginal Peoples, healthcare
ACRONYMS
Canadian Institutes of Health Research (CIHR)
Determinants of Tuberculosis Transmission (DTT)
Federation of Saskatchewan Indian Nations (FSIN)
Human Immunodeficiency Virus (HIV)
Network Environments for Aboriginal Health Research (NEAHR)
Northern Inter-Tribal Health Authority (NITHA)
Provincial Network Committee (PNC)
Tuberculosis (TB)
KEY TERMS
The terms Aboriginal and Indigenous are used interchangeably to refer to the First Peoples of
Canada, which includes First Nations, Inuit, and Métis. Any other direct reference to these individual groups or others (such as Native American) is intentional as the literature quoted may be
specific to the named group (McIvor, Napoleon, & Dickie, 2009).
Keyam is a Cree word defining a sense of despair or of giving up, and reflects the attitude of
defeat in the comment “What’s the use?”
Bad medicine may be used in a similar way to good medicine but with the purpose of inflicting
injury rather than healing.
Couch surfing refers to temporarily staying with family, friends, or acquaintances.
Binning is the act of searching through trash containers for items or food.
Meds is a term for prescription medication.
Bootleggers are those who make, transport, or distribute alcohol for illegal sale. Bootlegging is
sometimes a problem in communities that implement alcohol bans in an effort to curb alcohol
abuse.
Journal of Aboriginal Health, November 2012
31
A Framework for Examining the Disproportionate Experience of Tuberculosis
INTRODUCTION
O
n the Canadian Prairies, Aboriginal people
are disproportionately affected by tuberculosis
(TB). Statistics highlight ongoing transmission
events and high rates of active TB disease. This paper
draws on qualitative data produced by the Determinants
of Tuberculosis Transmission (DTT) project, a federally
funded, interdisciplinary, mixed methods study covering
the period April 1, 2006–March 31, 2013. The objective of
the DTT project is to understand the social determinants
of TB transmission among Aboriginal people of the
Prairie provinces (i.e., Alberta, Saskatchewan, and
Manitoba). The ultimate goal is to prevent transmission,
especially to the most vulnerable: children and people with
immunocompromising conditions such as HIV. This paper
gives an overview of a deeper expression of the experience of
TB, where patients articulated an overall hopelessness and
despair that 1) may contribute to ongoing transmission; and
2) has its roots in an experience of colonization that may be
captured in the Cree story of “Old Keyam.”
While this paper reports on painful experiences
of TB, it is important to note that the sharing of these
experiences came from a place of strength. The 55 people
who participated chose to do so out of a sincere desire to
contribute to a disease-free future for their children and
future generations. This paper is therefore dedicated to them
and to that goal.
Project Structure and Process of Ethical
Approval
The DTT project is a patient-based study that seeks
to understand experiences of TB among patients on the
Canadian Prairies. In this region of the country, the pool
of participants is largely Aboriginal. This study followed
an extensive engagement and ethical approval process with
multiple jurisdictional as well as Aboriginal and nonaboriginal stakeholders. It was guided by the Canadian
Institutes of Health Research (CIHR) Guidelines for
Health Research Involving Aboriginal Peoples (CIHR,
2007), and by consultation throughout with Provincial
Network Committees (PNCs) established to conduct the
study. The PNCs are comprised of Elders, traditionalists,
community- based tuberculosis workers, and health
researchers. There was engagement with key First Nations
and Métis stakeholders, including the Federation of
32
Journal de la santé autochtone, novembre 2012
Saskatchewan Indian Nations (FSIN); the Northern InterTribal Health Authority (NITHA) in Saskatchewan; the
Assembly of Manitoba Chiefs (AMC); and the Regional
Health Co-Management Subcommittee at First Nations
and Inuit Health Branch (FNIHB), Alberta Region. At
the national level, the Assembly of First Nations (AFN)
and the Public Health Agency of Canada (PHAC) were
informed of the study and its developments. Additionally,
each participating province’s Aboriginal health research
centre (the CIHR-funded Network Environments for
Aboriginal Health Research [NEAHR]) was included in
the consultation and/or approval process. This process is
described in more detail elsewhere (Boffa, King, McMullin,
& Long, 2011).
METHODS
Data Collection and Participants
The DTT project incorporates a mixed methods
strategy that includes the collection of quantitative and
qualitative data. This paper focuses on the qualitative data.
Researchers used a semi structured interview tool to capture
participants’ current experience and perceptions of TB, as
well as a sense of their life history and experiences. The six
questions invited participants to share general comments
about themselves by way of introduction, and moved on to
explore their regular daily routines both before and after
becoming sick with TB. Participants were also asked to share
their views on the characteristics and conditions of good
health and poor health in general, and more specifically
the illnesses that they or others in their community may be
worried about. The interview tool went through an iterative
review process with members of the PNCs, who also guided
the conduct of each interviewer during their orientation to
the tool. The team of interviewers represented a balance of
science, sensitivity, and experience that included a TB nurse
(Lopez Hille), a social scientist (Boffa), and an Aboriginal
educator and health researcher (McMullin).
Participants eligible for the study (age >14 years) were
Canadian-born patients diagnosed with culture-positive
pulmonary TB on the Prairies between 2007 and 2008.
Clinical staff gave the initial invitation to participate.
Patients who expressed interest were introduced to the
interviewer who then reviewed an information sheet
outlining the project in greater detail. Patients who
consented to the quantitative questionnaire and who were
highly infectious (i.e., sputum smear-positive) were also
A Framework for Examining the Disproportionate Experience of Tuberculosis
invited to participate in a qualitative interview. Participants
signed a consent form in English, with interpreters available
upon request. A total of 55 self-identified Aboriginal persons
took part in a qualitative interview (Table 1). Because this was
a patient-based and not a community based study, participants
were from a number of communities across the Prairie
provinces (from remote reserves to major urban centres) and
identified with different culture groups (e.g. Cree, Dene,
Métis, etc.).
When participants gave permission, the interviews
were audio recorded. The semi structured format, similar to
the storytelling approach common in Aboriginal societies,
allowed participants the freedom to include whatever they
considered important. Interestingly, a number of participants
noted that the interviews doubled as an opportunity to
explore their own TB experience and its impact on their lives.
Interviews were transcribed and participants reviewed their
responses prior to analysis.
Analysis
A five-member team undertook a multi-stage, iterative
coding process. The team included the three interviewers
and two researchers trained in qualitative methods (authors
Abonyi and Mayan). The team met to generate a code list
drawn from relevant literature on the experiences of TB,
social determinants of population health, Aboriginal health
frameworks and determinants (Assembly of First Nations,
2005; National Aboriginal Health Organization, 2007), and
a general review of the interviewing experience. Coordinators
coded the transcripts for the interviews they conducted
in their home province, and Abonyi and Mayan coded a
selection of transcripts across all sites. Emergent themes were
shared with the whole team for integration into the code
lists. Frequent in-person meetings included opportunities for
peer review and discussion of findings. The coding process
was managed using the software ATLAS.ti 5.2. As the
interview transcripts were coded, it became apparent many
participants spoke a language of frustration, disappointment,
and fear about their TB, whose roots extended well before and
beyond their singular illness experience. These preliminary
observations of the qualitative team were reported to the
PNCs, who further guided the analysis and offered various
perspectives on honouring these stories in a respectful
way. PNC members were interested in learning how the
storytellers found meaning in the disease and how these
experiences could be translated into preventive measures.
The results and discussion of this study were reviewed and
approved by the PNCs prior to submission for publication.
Limitations
A difference in interview location may have influenced
the length, quality, and responses of the participants. In two
of the provinces, participants were hospitalized at the time
of the interview. In the third province, interviews occurred
in various locations that included hospitals, patient homes, a
hotel, a research lab space, a correctional facility, and a rural
health clinic. A mobile TB clinic allowed patients in one
province to access health care in their home communities;
in the other two provinces patients did not necessarily have
the same family and community supports during treatment.
These discrepancies were taken into consideration in the
data analysis, noting that participants expressed varying
degrees of frustration about the treatment experience.
Despite this difference in data collection strategy and
the demographic, geographic, and cultural diversity of
the participant group, the general tone was remarkably
consistent across all the interviews.
RESULTS & DISCUSSION
One of the primary motivations for initiating the
study was the need to understand what Marmot (2005)
calls the “causes of the causes” that might account for high
transmission rates among Aboriginal people. Marmot is
referring here to the structure of social hierarchy and the
resultant social conditions—for example education, income,
and housing—under which people are born, grow, live,
and age. More is known about the impacts of these social
conditions on TB transmission than about how the structure
of social hierarchy influences both these conditions and
people’s overall response to sickness. The TB stories reveal a
great deal about where in the social hierarchy our Aboriginal
participants locate themselves, with an unyielding structure
imposed as part of colonization. Our analysis of the stories
about getting sick with TB, accessing medical treatment,
and perceptions of TB uncovered a sense of indifference in
participants’ attitudes, beliefs, and behaviours surrounding
the disease. For some, this apathy was borne from a lack of
support within the health care system or the idea that TB is
a foretold disease destined to reappear as a continuing part
of life. To some it is treated with the same normalcy as the
common cold. One woman spoke of a seven month period
between the time she began reporting excruciating chest
pain to her doctor and when she was finally diagnosed with
TB:
Journal of Aboriginal Health, November 2012
33
A Framework for Examining the Disproportionate Experience of Tuberculosis
TABLE 1. Demographic Features and Province of Residence of
Pulmonary TB Patients Participating in a Qualitative Interview
Demographic Feature
Province
Alberta
No. (%)
Saskatchewan
No. (%)
Manitoba
No. (%)
Total
No. (%)
14 (100.0)
23 (100.0)
18 (100.0)
55 (100.0)
15–34 (range 16–34) 4 (28.6)
13 (56.5)
5 (27.8)
22 (40.0)
35–64 (range 36–62) 10 (71.4)
10 (43.5)
13 (72.2)
33 (60.0)
Male 8 (57.1)
10 (43.5)
8 (44.4)
26 (47.3)
Female 6 (42.9)
13 (56.5)
10 (55.6)
29 (52.7)
First Nations 9 (64.3)
14 (60.9)
14 (77.8)
37 (67.3)
9 (39.1)
4 (22.2)
17 (30.9)
---
---
1 (1.8)
No. Assessed
Age (Years)
Sex
Population Group
Métis 4(28.5)
Inuit 1 (7.1)
First time I knew something was wrong was July of
2007. . . . I felt this sharp pain. . . and I just tried to take
a deep breath and I couldn’t and I thought I pulled a
muscle. . . . I’d buy muscle relaxers because my doctor wouldn’t give me nothing. . .because he doesn’t want
his patients to get addicted so he really wouldn’t give
me nothing other than Tylenol 500s and that pain kept
coming. . . . Towards. . . Christmas, it started getting worse. . . but I started losing weight.
Other participants expressed feelings of depression,
giving up, and perplexity about the disease, which was
further reflected in the way they talked about their
daily activities, relationships, home, and basic needs. An
unemployed mineworker shared the impact TB had on his
role as provider in his family: “Can’t even get a job ‘cause
you have to fill out the résumé and. . . there’s supposed to be
no medical problems. . . . It’s hard to get [used to] living on
welfare.” The unifying thread in several of these stories is the
idea of giving up or losing hope. As the team discussed the
34
Journal de la santé autochtone, novembre 2012
concept of despair, McMullin was reminded of a Cree word,
“keyam,” that she felt aptly captured the tone of despair
woven throughout the stories shared by the participants.
This concept as told in the story of “Old Keyam” frames the
interpretation of these findings in the next section.
Framing the Findings: “Old Keyam”
The idea of keyam was embodied by a fictional figure
known as Old Keyam, imagined by Edward Ahenekew, a
Cree Anglican Minister. Ahenekew used the voice of Old
Keyam to convey the mood of his people, whose memories
of healthier communities were altered with the imposition
of the Indian Act and Euro Canadian policies:
Those of us who remembered Edward Ahenekew
also remember that this gentle man, as ‘Old Keyam,’
personified not only himself, but the Indian People of
his generation, people who were part of the struggle
to harmonize competing cultures and survive with the
spirit intact (Ahenekew, 1995, p. vii).
A Framework for Examining the Disproportionate Experience of Tuberculosis
The voice of Old Keyam poses questions and
statements such as “What does it matter?” and “I do not
care!” (Ahenekew, 1995, p. 52). For Ahenakew, Old Keyam
symbolized the struggle to accomplish goals in the face
of the individual and collective adversity experienced by
Saskatchewan First Nations Peoples subjected to late 19thand early-20th century health care policies and practices.
The quality of health care enjoyed by First Nations
when they could access medicines and medicine people
outside the confines of reservations steadily eroded. The
self-determination and individual self-efficacy for many
Aboriginal people was challenged and some grew dependent
on non-Aboriginal government systems (Møller, 2010).
Viewed from the perspective of Marmot’s work on the social
determinants of health (2005), the structure of contemporary
social hierarchy is set here, locating Aboriginal people at
the bottom and in distress. A Northwest Mounted Police
historian described the despair of reserve inhabitants in this
way:
At every post there was an intangible feeling of
impending upheaval. . . a cry, as it were, from a people
so distressed that conciliation by constitutional means,
administrative tolerance, unfailing foresight and charity
would be the only means of adjustment (Goodwill &
Sluman, 1992, p. 37).
This collective despair is represented by Old Keyam,
whose being gave a face to the Aboriginal Peoples who
endured reserve confinement, cultural assimilation, and
broken treaty promises.
Many of the participants in this study are descendants
of the signatories of Treaty 6 signed in 1876. This treaty,
which involves part of present-day Saskatchewan and
Alberta, is of special significance in health care due to its
clause stipulating the provision of medical care and relief
from famine and pestilence. Oral tradition, however, shows
that First Nations people expected the promise of a medicine
chest for each reserve to mean “state-of-the-art medical
care that would evolve over the years” (Waldram, Herring
& Young, 2006, p. 181). Instead, the spirit and intent of this
treaty obligation was ignored and, at the discretion of some
government agents, was reduced to a single “first aid kit” per
reserve (Cuthand, 2002). It is little wonder that Ahenekew
and the people of his time grew to mistrust the government
and struggled in the face of such deceit. Old Keyam is a
metaphor for the disparity and associated responses to the
paternalistic confines of the Indian Acts of 1869 and 1876.
The experiences and stories described by participants in this
study similarly underscore the longstanding and ongoing
impact this legislation has had on the erosion of wellness
and continued transmission of diseases like TB among
Aboriginal people across Canada. The interviews highlight
reasons for the overrepresentation of TB among Aboriginal
people. These certainly include the social determinants of TB
transmission commonly discussed in the literature (such as
housing, income, and employment), but they are embedded
in much more complex circumstances that, when taken
together, fit the framework of Old Keyam. Here we sketch
out this dynamic using a storytelling approach consistent
with Ahenakew’s Old Keyam, oral tradition, and Aboriginal
discourse in general. The four composite stories below
capture the array of feelings, thoughts, and behaviours of
participants who had difficulty conceptualizing good health
and whose feelings of conflict were expressed throughout
their responses to the interview questions. Like the character
of Old Keyam, the characters in these summaries are based
on common experiences, in this case drawn from the stories
shared by the 55 participants in this study.
Annie
Annie lives in a remote northern community that is only
accessible by road for part of the year and by airplane the rest
of the time. Annie is sometimes overwhelmed by taking care
of three generations under one roof. The cost of groceries
flown from the south prevents the family from enjoying a
balanced diet and consequently, the extended family suffers
serial bouts of colds and flu. The wracking sound of coughs
in the small dwelling is so common that it goes unnoticed,
until one day Annie cannot lift herself from bed to attend to
her crying grandson. Albert, her husband, had recently fallen
ill and could not go for the winter hunt, and now Annie is
worried that she too has encountered the “bad medicine.”
Brian
Brian had TB symptoms for one year before diagnosis,
and worked until he noticed blood in his sputum and was
simply too weak to leave his home. Jobs are hard to come
by in his northern hamlet, and he ignored what he called “a
normal cough.” One evening, when his neighbour Jim came
over to play cards in the steamy kitchen, Brian confided that
he had lost his job because he did not have the energy to skid
logs anymore. His boss had accused him of being lazy and
sent him home early that day.
Journal of Aboriginal Health, November 2012
35
A Framework for Examining the Disproportionate Experience of Tuberculosis
Carrie
Carrie is a Métis woman who has lived in the city for
years. She is homeless and stays at a shelter when she has
run out of luck couch surfing. She goes “binning” for scraps
of food before the sanitary trucks arrive. While sharing her
story, she puffs on a cigarette butt that she lifted off the
ground in front of a hotel. She waves to the TB nurse in the
distance who has searched her out to deliver her meds. She
refers to the nurse as her close friend, hoping that no one
finds out that she has TB.
Elsie
Elsie began losing weight and her teacher asked her
how she did it. Although she was not sure, she explained it
could be the meds she was taking for her TB. The teacher
then turned on Elsie and publicly humiliated her in front of
her classmates, saying that she was contagious and had no
business being in school. Her classmates looked at her with
confusion and fear as the teacher continued her rant.
Although these stories differ in detail, they illustrate
some of the common experiences of TB found in the
qualitative interviews. The details of these experiences are
articulated thematically in the next section.
Basic Needs
The stories highlight the fact that marginalized
communities often do not have the resources to support
the basic needs of adequate housing, transportation, and
childcare. Even when those supports are minimally available,
problems arise as in the case of a recently widowed mother
of three children who became ill during the night:
I was crying. I told the nurse that I was coughing
out blood and what should I do. She told me to go up
there (nursing station) and that pissed me off because
I don’t wanna go up there when my kids are here and I
was still coughing out blood.
This mother’s struggle to take care of herself and her
children was compounded by the inefficient structure of the
new band house in which she lived. She described a house
fraught with plumbing and sewer problems to the point that
she expressed hopelessness with her own band and asked
the housing coordinator to “fix something and quit sending
Indians over here. . . [and] send somebody that’s trained that
knows what they’re doing.” The voice of Old Keyam here
was directed to her local government and band council. She
36
Journal de la santé autochtone, novembre 2012
spoke at length of her depression and how she coped by
sleeping and alienating herself from others: “I don’t feel like
associating with other people and I just wanna sleep, and
at times I feel like killing myself but it, it doesn’t work.” To
the relief of the interviewer, she spoke of the strength her
children gave her to keep going in the face of adversity.
Social Hierarchy
On-reserve hierarchies are another source of despair.
One participant described the social structure on his
reserve as a class system that produced different levels of
confidentiality around a TB diagnosis. This individual spoke
of a time when everyone in his community learned of his
TB after a medical transportation worker made him wear
a mask in front of all the other passengers on a ride home
from the city clinic. However, when a member of a family in
power contracted TB, there were significant efforts to hide
the diagnosis, perpetuating the shame and stigma associated
with the disease:
I just recently found out that this one certain family
was riddled with TB and nobody has heard a word
about that, whereas. . . just because of my last name I’m
on a lower class scale and everybody had heard that [I
had TB] and then there’s even poorer people than me. . .
everybody hears all about them. . . . If you’re gonna keep
it quiet then keep it quiet for everybody.
He felt helpless to complain to families in power
about how his right to privacy had been violated. Other
participants mentioned similar incidents of differential
treatment, supporting findings about family-based
factionalism and resource poor reserves (Brizinski, 1993).
Self-Efficacy
According to Bruess & Richardson (1995), self-efficacy
is the ability to strengthen the mind, body, and soul through
personal efforts or with the additional force of spiritual
sources of strength. People with low self-efficacy have
difficulty in facing the challenges that disrupt their lives.
Several of the respondents deliberately isolated themselves
from family and community during their illness with TB,
while others were forcibly alienated from every day life.
The concomitant depression caused them to stop attending
to their health and well-being. A number of participants
explained that any motivation that they may have felt
evaporated when they became ill with TB. Biomedically,
A Framework for Examining the Disproportionate Experience of Tuberculosis
at least, this could be addressed by the inclusion of mental
health workers in the TB treatment team.
Community Obligations
During the interviews, some participants tried to
make sense of why and how they contracted the disease.
Most declared that they had no idea, even when they
were from communities where rates were comparatively
high. One youth saw the disease as fate. He lived in a
community that was supposed to be a dry reserve and
cursed the “damn bootleggers” who brought discord to his
people. He criticized leadership for not doing enough. It
appeared that the community had given up on its attempt
to create a healthy space; the young man saw TB as normal
and with resignation stated, “That’s the way it’s probably
written.” Given the link between healthy communities and
healthy people as commonly reflected in population health
frameworks, it is clear that when communities give up on
the obligations that they set for themselves, the consequence
is that their members give up on obligations to their own
health.
Loss
Like the story of Old Keyam, the stories of TB
patients contained elements of loss leading to despair. These
narratives reflected a grieving process taking place over
several decades. According to Auger (2000), “grief is usually
experienced as deep or intense sorrow; it encompasses
our total emotional response to loss” (p. 190). People who
have suffered trauma lose interest in participating in daily
activities and some people “become silent, refuse visitors
and spend much of the time crying and grieving” (Santrock,
2007). This theme was apparent in interviews, where some
participants described giving up on family and society, which
normally supported them in times of need or loss. These
experiences often occurred well before the diagnosis of TB.
Participants described a loss of independence, a feeling of
being exiled to the reserve, a loss of control over life, and
a loss of freedom (e.g., incarceration). Participants also
discussed the loss of the physical necessities and supports in
life such as adequate nutrition, housing, and employment.
Some talked about losing access to land and wild foods.
Many described loss through death and the separation of
emotional, psychological, and spiritual supports such as
family and friends. Sadly, a large proportion of participants
in this study had experienced a major personal loss of a
loved one through death or the end of a relationship in the
year prior to their TB diagnosis. Research has shown that
this type of loss can negatively impact the immune response
(Rook and Doherty, 2009). Participants described a loss of
dignity and trust in systems that they expected to support
them. They felt betrayed and humiliated in the face of racism
and fear mongering around their TB diagnosis. One man
explained:
Before the doctors told me how sick I was, I started
withdrawing, I started being insecure, less sure of myself.
. . . I thought I was lazy but I was tired. . . and because
of the weight loss I was shying away, I didn’t feel good
about myself and I felt weak so therefore I started acting
weak. . . . I became self-conscious and I started looking
at my body as who I was, not the person I am inside and
I’d have certain girlfriends, lady friends that knew who I
was but yet I’d push them away because I started losing
weight. . . . I couldn’t stand looking at my own body so.
. . I went into depression and that’s where I decided to
[drink]. I knew what having a drink would do.
This story speaks also to the sadness that accompanies
and accentuates loss. The TB diagnosis led to more loss and a
cycle where pain is anesthetized with alcohol. However, like
Old Keyam, there is a resiliency to the storytellers’ anecdotes
in terms of internal and external strength. Keyam was not
limited to the despondency of the time. In sharing his truth
with his community, the participant above eventually found
strength.
The participants in this study have survived many
personal and historical hardships through experiencing
positivity in themselves, their families, and their
communities. On the road to healing, many patients spoke
of their sources of strength. For example, many of the female
participants befriended the TB nurses, and the women
often chose healing for the sake of their children and
grandchildren.
Transforming Keyam to Hope and Action
TB programs are addressing the biomedical treatment
requirements of each patient, but these stories described
more complex needs. Participants were primarily of lower
socioeconomic status and had often given up hope for better
housing conditions, better community and social supports,
and better health care services. Many cannot afford to see
a traditional healer because the cost of travel outside their
community is too great, and to bring healers from a distance
is also too expensive. They described incidents of emotional
Journal of Aboriginal Health, November 2012
37
A Framework for Examining the Disproportionate Experience of Tuberculosis
abuse through differential treatment at school, in health
care centres, and in all levels of government. Participants
spoke candidly about coping with their addictions to drugs,
alcohol, or gambling. Others cope in isolation, trying to
sleep away the physical, emotional, and psychological pains
that are inexorable facets of TB. Then there are those who
turn to spiritual and physical well being for strength to heal
for their families, or other deeply personal reasons.
Old Keyam spoke the language of oppression and
became a character who struggled to survive a system
of adversity. A century later, not much has changed
for Aboriginal Peoples. Statistical analyses reveal that
Aboriginal people are far more likely to contract TB than
other Canadians due to ongoing transmission (Kunimoto,
Sutherland, Manfreda, Wooldrage, Fanning, Chui, &
Long, 2004). Poverty remains an issue and according to
the Royal Commission on Aboriginal Peoples (RCAP),
“Aboriginal people’s living standards have improved in
the past 50 years—but they do not come close to those of
non-Aboriginal people” (1996). The conditions cited in
RCAP are the same conditions under which Old Keyam
was created. Social determinants of TB transmission such
as substance abuse, poorly constructed and overcrowded
houses, and high unemployment and incarceration rates are
all associated with higher TB incidence and prevalence. It
is no surprise to see people give up on personal obligations,
relationships, and community supports with respect to their
own health. Where they have not given up is in changing
the future for their children and the generations that follow.
Many candidly shared their experiences in the tradition of
storytelling to collectively make sense of current events and
their links to the past. Thus, the process itself became good
medicine for the storytellers describing their experience of
TB and life. One participant explained it in this way:
I really circled around the Spiritual Elders to get
me through the depression when I didn’t know what
was wrong with me, and that helped. Like I was still
depressed, I was still anxious, my nerves were gone
and my outlook on life, like I couldn’t work even if I
wanted to but I couldn’t tell people and I think they
were thinking I was lazy and then I went out drinking
and they said, “Ah. There he’s going back to his old
lifestyle” sort of thing and but just now lately the energy
is coming back a bit. . . . I’m still not halfway but I’ll say
even now this interview has really helped.
38
Journal de la santé autochtone, novembre 2012
Taking Back Power and Health
From one of the youngest interviewees who saw his TB
as an affliction that was “the way it was meant to be” to one
of the oldest participants who resigned himself to dying—
“either whatever I have will remit, go into remission or it’ll
total me off you know, kill me”—the voice of indifference
resonates long after the late 19th century to the start of
the second millennium. Old Keyam, a character born of
colonization, haunts the stories of these TB patients. The
structure of social hierarchy and the conditions ripe for TB
transmission a century ago, although somewhat improved,
remain a reality in the 21st century. The stories link the
concept of keyam to self-efficacy, community obligation, loss,
self-government, federal agencies, and the spirit of caring.
Participants were clear that in sharing their stories they
were not looking for sympathy, but rather were interested
that their candid contributions to this study would in some
way affect change in the midst of a myriad of barriers to
well-being. Many of the people spoke of a higher power as
a source of strength, whether in the context of Christianity
or Aboriginal spirituality. Although some people may
have given up on personal obligations when depression,
anxiety, and fear got the best of them during their ordeal
with TB, none of them spoke of giving up on their sources
of strength, which were most often stated as God or the
Creator and their children. Sometimes people had given up
on community leadership, local governments, and/or federal
governments’ obligations to health care, but in most cases
participants found that they could depend on family support
in their times of need. People who turned to the traditional
ceremonies were most often the ones who spoke in gratitude
that balance could be recovered and that TB was just one of
life’s many tests. A man who was disheartened with the way
his band had treated him spoke lovingly of the individuals
in his circle of friends who helped him recover in the
emotional, physical, mental, and spiritual domains of self:
I hang around with what I believe to be healthy
people that have a healthy outlook on life, a healthy
view of what life is really all about. . . how they treat
other people. . . . Those are the people I seek and, and it
does help me spiritually. I think if my mind is healthy
so it affects everything else about me and spiritually I
seek spiritual people, not so much religious people but spiritual people that have a holistic balance, not only
towards people but towards their community, towards
Mother Nature, that you learn to respect all things
and to respect one another so, I mean, respect is not
something that’s given, it’s earned and you feel good. . .
A Framework for Examining the Disproportionate Experience of Tuberculosis
when it’s not demanded of you but you can give it away
and then receive it so my healing comes from trying to
be the best person I can be.
CONCLUSION
Old Keyam is a useful framework for understanding
the dynamics of TB transmission and the overrepresentation
of Aboriginal people from the Prairies among TB patients
in Canada. The longstanding impacts of colonization must
be considered as a reason for the intractability of TB in this
region. An appreciation of these impacts, and how they
influence patients’ responses to the disease and its biomedical
treatment, should be part of the approach to prevention and
treatment. As RCAP maintains:
Aboriginal people do not want pity or handouts.
They want recognition that these problems are largely
the result of loss of their lands and resources, destruction
of their economies and social institutions, and denial
of their nationhood. They seek a range of remedies for
these injustices, but most of all, they seek control of their
lives (1996, p.6) .
In order to eliminate the overrepresentation of
Aboriginal people infected with TB, patients need to become
part of the remedy through having some control of their
experience and shaping a more positive experience for those
who follow. As a first step, the patients in this study were
keen to be part of this process by having their stories heard
and shared broadly. Future research could explore the ways
in which the stories, and in particular the feelings shared
here, may become part of prevention, treatment, and overall
approach to TB infection among Aboriginal people. This
research should address the “causes of the causes” (Marmot,
2005), laying Old Keyam, and the despair his character
represents, to rest.
“At the centre of positive creative activity is the desire
to bring health and enrichment into the lives of others”
(Armstrong & Cardinal, 1992, p. 106).
ACKNOWLEDGEMENTS
The authors humbly thank the 55 storytellers who
processed their experiences of TB with the DTT research
team. We also extend gratitude to the Provincial Network
Committees and organizations that participated in the DTT
project. We offer special thanks to Courtney Heffernan, Brooks
McMullin and Andrea Still for reviewing this document.
Thanks also to the anonymous reviewers for their suggestions
on improving the manuscript.The study is funded by the CIHR,
FNIHB, and Health Canada.
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Auger, J. A. (2000). Social perspectives on death and dying. Halifax,
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Cuthand. D., (2002, February 1). Treaty right to health care
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Bruess, C., & Richardson, G. (1995). Decisions for health. (4th ed).
Madison, WI: Brown & Benchmark Publishers.
Canadian Institutes of Health Research. (2007). Guidelines for
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Kunimoto, D., Sutherland, K., Manfreda, J., Wooldrage, K.,
Fanning A., Chui L., & Long R. (2004). Transmission
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Canadian born population of Alberta, Canada. International
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McIvor, O., Napoleon, A., & Dickie, K. M. (2009). Language and
culture as protective factors for at risk communities. Journal of
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Møller, H. (2010). Tuberculosis and Colonialism: Current Tales
about Tuberculosis and Colonialism in Nunavut. Journal of
Aboriginal Health, 6(1), 38–48.
National Aboriginal Health Organization. (2007). Broader
Determinants of Health in an Aboriginal Context. Ottawa:
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naho/publications/determinants.pdf
Rook, G. A. W. & Doherty, T. M. (2009). Host susceptibility
and resistance to Mycobacterium tuberculosis; Genetic,
neuroendocrine and acquired factors. In Schaaf, H. S. &
Zumla, A. (Eds.). Tuberculosis: a comprehensive clinical reference
(pp. 87–95). London: Saunders Elsevier.
Royal Commission on Aboriginal Peoples. (1996). Highlights from
the Report of the Royal Commission on Aboriginal Peoples: People
to People, Nation to Nation (Catalogue No. Z1-1991/1-6E).
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Santrock, J. W. (2007). A Topical Approach to Life-Span Development.
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40
Journal de la santé autochtone, novembre 2012
“I Like to Think I’m a Pretty Safe Guy
but Sometimes a 40-Pounder* Will
Change That”: A Mixed Methods Study of
Substance Use and Sexual Risk Among Aboriginal
Young People
Karen M. Devries, PhD, London School of Hygiene and Tropical Medicine, London,
United Kingdom
Caroline J. Free, MBChB, PhD, London School of Hygiene and Tropical Medicine, London,
United Kingdom
Elizabeth Saewyc, PhD, RN, School of Nursing, University of British Columbia,
Vancouver, Canada
ABSTRACT
We conducted a mixed methods study to explore links between substance use and sexual
risk among Aboriginal young people in British Columbia, Canada. Individual in-depth interviews were conducted in 2004–2005 with 30 young people ages 15–19; we present a descriptive thematic analysis. Data from a 2003 provincially representative survey that included
2,467 Aboriginal young people attending secondary school were used to model relationships between substance use and sexual behaviour outcomes. Young people perceived
that substance use affected community and extended family relationships and could shape
behaviour during sexual encounters. Survey data show different age trajectories of risk. For
young men, there was a strong and consistent linear relationship between substance use
and potentially risky sexual behaviour across all age groups. For women, using more substances at younger but not older ages was a strong marker of sexual initiation. Using more
substances in older but not younger age groups was a strong indicator for having more
sexual partners. For both young women and young men, lifetime substance use and substance use at last sexual encounter did not predict condom use. Interventions must consider
the effects of substance use on community structures and family relationships in addition to
individual risk.
KEYWORDS
Aboriginal, substance use, sexually transmitted infection, sexual behaviour, adolescent
Journal of Aboriginal Health, November 2012
41
Sexual Risk Among Aboriginal Young People
BACKGROUND
A
boriginal young people in Canada are
overrepresented in both STI and HIV statistics
(Public Health Agency of Canada, 2004), and report
substance use at higher levels than other young Canadians
(van der Woerd et al., 2005). These are linked: similar to
non-Aboriginal populations, Aboriginal young people
consuming more substances relative to their peers are more
likely to report ever having an STI and/or being pregnant
or causing a pregnancy (Devries, Free, Morison, & Saewyc,
2009a). However, less is known about the nature of this
linkage, especially among Aboriginal young people.
There is controversy over whether alcohol plays a causal
role in HIV transmission (Shuper et al., 2010), although
there is a consistent association between alcohol use and
incident HIV infection (Baliunas, Rehm, Irving, & Shuper,
2010). Shuper et al. (2010) underline the potential biological
effects of alcohol intoxication in modulating immune
responses, which can affect HIV transmission. Alcohol
use can also affect sexual behaviour at the individual level.
According to alcohol myopia theory (Steele & Josephs,
1990), the acute effects of alcohol intoxication can cause
changes in information processing, which result in more
salient proximal cues such as sexual arousal or desire to
take precedence over more distal cues, such as messages
about condom use and HIV prevention (Cooper, 2002).
Expectancy theory (Lang, 1985) states that people will
behave in accordance with pre-existing expectations about
the effects of alcohol intoxication on sexual behaviour. In
both models, alcohol consumption will lead to risky sexual
behaviour. At the level of individual behaviour, there is
some evidence to support the idea that alcohol consumption
causes condom non-use (Cooper, 2002) or facilitates sexual
relationships (Coleman & Cater, 2005). Other studies find
no relationship (e.g., Temple, Leigh, & Schafer, 1993).
Critics point out that third-variable explanations
cannot be ruled out (Shuper et al., 2010). It is plausible that
developmental effects, underlying personality orientations, or
early childhood experiences could influence both substance
use and HIV risk behaviours, rather than substance use
directly causing HIV risk behaviour. Longitudinal studies
have found that young people who have poor impulse
control are more likely to report both potentially risky sexual
behaviour (Raffaelli & Crockett, 2003) and substance use
(Caspi et al., 1997) later on.
42
Journal de la santé autochtone, novembre 2012
In addition to the direct effects of alcohol on individual
level risk behaviour, the broader organization of substance
use in families and communities may also contribute to
individual level risk behaviour. These effects are rarely
considered, but may be especially salient for Aboriginal
populations. Walters, Simoni, and Evans-Campbell (2002)
outline substance use among American Indian populations
in the context of the Indigenist Stress-Coping Model,
conceptualizing this as an outcome of historical trauma,
discrimination, violence, abuse, and neglect. This model
emphasizes the role of colonization and context in creating
substance misuse, sexual health risk, and mental health
problems, and the role of community resiliency as a coping
mechanism. The Indigenist Stress-Coping Model and the
Ecosocial Model (Krieger, 2001) on which it draws postulate
that events or “social experiences” beyond the individual
level create a context of risk which helps to determine
individual level outcomes. Walters et al. (2002) argue that
cumulative, collective trauma experienced by indigenous
peoples as whole groups contributes to individual ill-health
and substance use. Kaufman et al.’s (2007) work with
American Indian young people from two Northern Plains
tribes confirms young people’s perception of the importance
of alcohol as an individual level risk factor for unsafe sexual
behaviour. The mechanisms by which this might occur,
however, and the broader interactions of alcohol use in
context remain unexplored.
Present study
We conducted qualitative interviews with young people
from the Downtown Eastside, which is a disadvantaged
urban neighbourhood (Ma, 2006) in Vancouver, British
Columbia, and in several rural reserve communities on
Vancouver Island, British Columbia. We aimed to explore:
one, young people’s perceptions of the role of substance
use in their communities and broader environment, and
how this might shape individual substance use behaviours;
two, young people’s own experiences with substance use
throughout their teenage years and the environments
in which substances are used; and three, young people’s
perceptions and experiences of substance use and sexual risk.
We used representative survey data from Aboriginal young
people attending secondary school in British Columbia to
quantify relationships between substance use and sexual risk
behaviours.
Sexual Risk Among Aboriginal Young People
METHODS
Qualitative interviews
We conducted individual in-depth interviews with 30
young people (15 males and 15 females) who self-identified
as Aboriginal in 2004–2005. Before the study began, we
held discussions with community members to ensure the
research protocol was ethical and respectful. Formal ethical
approvals were obtained from the local Tribal Council on
Vancouver Island, the University of British Columbia, and
the London School of Hygiene and Tropical Medicine
Review Boards. In the urban setting, no formal community
review process was available, but community organizations
provided feedback and approval of the project.
Youth workers recruited young people in the urban
setting at a pool tournament and an after school drop-in
centre. In the rural location, health centres on-reserve (one
of which doubled as the community Internet access point)
served as the recruiting sites. The first author described the
study to interested young people, outlining that participation
was strictly voluntary and they could terminate the interview
at any time. Informed written consent was obtained from all
participants, who were remunerated with CDN$20 for their
time. Interviews ranged from 30–90 minutes in length. All
interviews were tape-recorded and transcribed.
We conducted a descriptive, thematic analysis. Data
were analysed drawing on the techniques of constant
comparison and searching for deviant cases (Glaser &
Strauss, 1967). QSR N6 software was used to store and
organize data. Transcripts were coded thematically according
to a framework developed early in the process; new codes
were added as needed to reflect new information.
The primary purpose of the original qualitative study
was to explore young people’s views on sexual health
and condom use (Devries & Free, 2010; Devries & Free,
2011). Interviews began with a discussion of sex education
received in school, focusing on the young people’s views
on the experience. At this point, participants generally
began to discuss their own sexual relationships and
experiences. Substance use and other aspects of context
featured prominently in their accounts of sexual encounters.
Participants also used the interview to discuss substance use
more generally in their lives, families, and communities—
this was obviously highly salient for young people. Themes
were created to reflect young people’s experiences and are
presented here with quotations to illustrate our findings. In
this paper we have focused on themes around substance use,
including how it relates to sexual health.
Survey data
We conducted secondary analyses of survey data from
the 2003 British Columbia Adolescent Health Survey
(BCAHS) (Green, 2003). The BCAHS is a periodic clusterstratified cross-sectional survey of students in randomly
selected classrooms, representative of young people
attending secondary school in British Columbia. Informed
consent was sought either from parents (with student
assent), or students (with parental notification), depending
on school district requirements. Over 30,000 questionnaires
were returned, corresponding to 76% of students in
participating classrooms. The main reason for non-response
was absenteeism on the day of the survey (12%). In total,
1,336 young women and 1,140 young men who participated
in the survey self-identified as Aboriginal.
Outcomes used for this study were ever having sex,
having more than one lifetime sexual partner, not using a
condom at last sexual encounter, ever having been diagnosed
with an STI by a doctor or nurse, and ever having been
pregnant or causing a pregnancy. All were measured using
binary variables.
We created a binary variable measuring “high” or
“low” substance use relative to Aboriginal peers, using a
list of 11 different substances. Participants were asked if
they used the following once/a few/many times: alcohol,
marijuana, cocaine, hallucinogens, mushrooms, inhalants,
amphetamines, heroin, any illegal injection drug, steroids
without a doctor’s permission, and prescription pills without
a doctor’s consent. Responses were summed across all items
and divided by the number of items. Individual scores were
classified as below or above the median lifetime frequency
of substance use in the Aboriginal subsample, thus creating
“high” and “low” categories. The other main exposure
variable was whether any substances were used at last sexual
encounter, which was asked as a single item in the survey.
We hypothesized that there would be interactions by age
and constructed models to test these hypotheses.
Analyses were conducted using STATA 9.0, accounting
for the complex sampling used in the BCAHS. Descriptive
results were computed, and a multivariate model was
constructed to test relationships between lifetime substance
use, substance use at last sexual encounter, and condom use
at last sexual encounter.
Journal of Aboriginal Health, November 2012
43
Sexual Risk Among Aboriginal Young People
RESULTS
Participants in our 30 qualitative interviews were on
average 17 years old. Nineteen were from the urban setting,
with the remaining 11 from the rural setting; 22 had ever
had sex, 6 had ever been pregnant or had caused a pregnancy,
and 18 were still attending secondary school. In the 2003
BCAHS, 34.8% of young women and 33.7% of young men
had ever had sex. Of young women who had ever had sex,
40.5% did not use a condom at last sexual encounter, 4.2%
had ever been diagnosed with an STI, 10.6% had ever been
pregnant, and 56.1% had more than one lifetime sexual
partner. Of young men who had ever had sex, 21.4% did
not use a condom at last sexual encounter, 3.9% had ever
had an STI, 10.5% had caused a pregnancy, and 63.3% had
more than one lifetime sexual partner. The vast majority of
young people in the survey reported using only alcohol and/
or marijuana rather than other substances. The participants
in the qualitative interviews are somewhat older, more urban,
and more likely to have been pregnant or caused a pregnancy,
and obviously less likely to be attending school than the
young people represented in the survey data.
We present results in three sections: community
and family context, young people’s substance use, and
substance use in sexual encounters. We outline what young
people perceive substance use patterns to be in their wider
communities and families, and how they perceive this to
shape their own behaviour. These wider patterns influence
both young people’s own substance use patterns, and
indirectly, the creation of potentially risky situations where
alcohol consumption and sex are likely to co-occur. We
describe young people’s experiences of substance use and
“parties,” and beliefs about the relationship of substance
abuse and sexual risk. Finally, we present analyses of survey
data on the relationship between substance use and condom
non-use at last sexual encounter.
Community and family context
Young people interviewed described pervasive alcohol
use in their wider communities. Young people from both
the urban and rural settings mentioned use of marijuana;
illicit drugs—including ecstasy, crystal methamphetamine,
and heroin—were discussed in the urban setting only. Young
people termed substance use “partying,” and framed it as
somewhat inevitable. Especially in the rural setting, partying
was just “what everyone does.”
44
Journal de la santé autochtone, novembre 2012
Despite the pervasive nature of substance use, young
people interviewed perceived this as a causative factor
in community and family breakdown and as part of an
unhealthy lifestyle. One young man described this increased
risk for an unhealthy lifestyle:
Urban male: Someone who’s in a sober frame of mind who
has a little bit of a better well balanced lifestyle that are well
educated and have a good sense of healthy, healthy lifestyle
like that, they are probably at a low risk in comparison to the
people that are drug users.
Some young people implied that substance use was
problematic in their communities because parents and
grandparents used substances to cope with experiences of
residential schooling, sexual abuse, and historical trauma
experienced by Aboriginal people. One young man explained
the connections between forced removal of children to attend
residential school and current alcoholism in communities:
Urban male: The robbing of the children from their families
due to the fact that when they sent scouts out to go see how
the kids assimilate and disassemble the First Nations people,
they came to realize the fact that their spirit could not be
broken, like the old people, the young warriors like that
and they knew that the only way that they could do that
was to shoot in through the kids; they had to take away
that and as a result of that I think that’s why a lot of them,
the alcoholism. . . and not only that but going back to all
the rapes and sexual abuse that happened for our people in
residential schools as well.
Several older participants were also concerned that their
grandparents had experienced abuse and/or ill-treatment at
residential schools, but reported that personalized discussion
was somewhat of a taboo topic; their grandparents “didn’t
really want to talk about it.”
Young participants perceived that substance use by
extended families and in their communities affected them
directly, both facilitating and curtailing their own substance
use. Facilitation occurred in two main ways. First, adults
provided a behavioural model. Young people thought that
they would be more likely to use substances that they saw
parents and community members using:
Rural female: Nobody does any drugs besides the weed, ‘cause
we never seen that around.
Sexual Risk Among Aboriginal Young People
The second major way in which family and community
environments facilitated substance use was by providing easy
access. A number of young people described stealing beer
from adults at parties (mainly in the urban setting) or from
houses on the reserve (in the rural setting):
Rural male: You could hoist up a flat everyday around here,
just out of the house, ‘cause there’s just unopened beers just
laying around, so you could stuff them in a bag and go to the
beach and get drunk.
Conversely, young people interviewed described parents
or other caregivers who had intervened to prevent, reduce, or
treat substance use problems:
Rural male: Every day I guess, when I’d show up all
drunk—they’d try to tell me not to and all, but I would just
like . . .
Communities could also act together to try and reduce
substance use among young people. One participant
described how the local police in the rural community had a
workshop about alcohol and drug use with reserve residents.
As a result, her grandmother did not allow her out until she
reduced her drinking to a more acceptable level:
Rural female: Ya, and she finally told us that we are allowed
to [go out] now, ‘cause we’ve been real good about it. We haven’t
come home, and she hasn’t noticed, but she can smell it, but she
hasn’t noticed, we won’t be staggering or anything.
This young woman perceives that it is acceptable to her
primary caregiver that she smells of alcohol, as long as she
hasn’t come home noticeably drunk or staggering. As the
above accounts illustrate, young people tended to report that
parents or caregivers wanted them not to drink or smoke
excessively, rather than not drink or smoke at all.
Although the young people interviewed did not
make this link directly, it emerged from their accounts
that substance use indirectly influenced their behaviour by
affecting their family situation:
Urban female: [A]nd his mom is like a real pothead so, and
like she drinks once in a while and she’s like really moody all
the time, so when you see her, you’re like, “I hope to God she’s
in a good mood.” And then when she’s in a good mood. . .
you’re like, “I hope she stays this way.”
Urban male: [My mother] was in and out of my life, she’s an
alcoholic, and that was hard, and my father too, he’s a drug
addict right now, he’s been in and out of my life.
Substance use led to participants spending extended
periods of time without their parents, and in some cases,
other family difficulties.
By facilitating and constraining young people’s substance
use patterns, and creating situations where alcohol and
other substances are easily available, substance use at the
family and community levels creates environments where
young people have easy access to substances and behavioural
models of substance use. Substance use among family and
extended family members also influences family relationships
and development, which can again facilitate or constrain
substance use by young people.
Young people’s substance use
Almost all young people interviewed reported “trying”
alcohol, describing a period of alcohol use. Marijuana
use was also described, albeit to a lesser extent. Other
illicit substances, such as heroin, ecstasy, and crystal
methamphetamine were described in the urban setting when
referring to friends’ behaviour, or consumption by others in
the neighbourhood, but no participants described their own
use of these substances.
Alcohol use began early, especially in the rural setting,
where several participants reported first use of alcohol under
age 10:
Rural male: I don’t know, first time I ever drank I was nine,
and I got real drunk, but that was the only time. Pretty
much when I was 12 I guess, was like, in the summer, I
was like, I was already smoking weed and whatnot, since
like, since I was younger, but I never really started drinking
‘til I was 12, and after a while I just started drinking like,
heavily.
Introductions to substance use were through older
siblings, relatives, and/or peers. Most participants presented
this mode of introduction to alcohol as desirable; older
siblings were constructed as teachers and protectors,
providing a safe environment for participants to learn how to
use alcohol and/or marijuana. One young woman relates her
introduction to drinking:
Rural female: Um, my brother offered it, so I took one. I
wouldn’t do anything else with anybody when they did it,
but when my brother offered it, I did. He didn’t offer me ‘til
I was 12; he didn’t want me getting into it ‘til then.
A minority of participants reported that they “didn’t
drink,” and had ceased to consume alcohol after a period
of earlier use. Cessation happened for a variety of reasons:
Journal of Aboriginal Health, November 2012
45
Sexual Risk Among Aboriginal Young People
parental intervention, peer intervention, formal substance
use treatment, or personal reasons.
Rural male: I guess I felt, I don’t know, just, I’m not sure
I can explain it, but I just, I was happy and everything,
nothing to worry about it, just the fact that I can get in
trouble, things were just, I. . .
Interviewer: Right, so you were happy and stuff, but
you were worried that you could get in trouble from your
parents?
Rural male: Right, from my parents, that was the only
problem.
Others described problems resulting from being
“caught” smoking marijuana but no participants discussed
what they perceived as problems resulting from marijuana
use itself. Participants who discussed smoking marijuana
also reported alcohol use.
Most participants reported continued use of alcohol,
mainly in the context of “parties” with groups of other young
people. Many young people reported drinking with the
goal of getting drunk, and reports of “blacking out” were
common, especially in the rural sample:
Rural female: Me and my friends, we’ll be all drunk and
I’ll end up passing or blacking out and I could hear the next
day what happened and they’re telling me and then. . . I
don’t know.
“Blacking out” was generally equated with memory
loss after consuming large amounts of alcohol, although
some participants in the rural sample seemed to use this
term to refer to being very drunk (but still remembering).
“Passing out” was also commonly reported, and seemed to be
generally expected after a night of drinking.
“Parties” were the main context of substance use, and
functioned as a permissive social space where young people
could use alcohol and engage in sexual relationships that
they might not otherwise have participated in. Generally
it appears that participants made use of the physical effects
of alcohol intoxication to facilitate behaviour, whether it
be pursuing a sexual activity and/or a relationship with
someone, or facilitating their friendships and creating
acceptance with their peer group or social circle. Activities
during parties were partially exempt from the moral
46
Journal de la santé autochtone, novembre 2012
judgment and values of others. A young man describes being
discovered at a party in the midst of “fooling around” with
his friend’s girlfriend:
Rural male: He was just like, “ Ya,” calling me a prick and
whatever, ‘cause I knew he was going out with her, but he
didn’t care ‘cause we were all drunk anyways.
When describing undesirable events or characteristics,
young people interviewed would often mention being
“drunk” as a caveat, implying that the actor was not really
responsible for the outcome. Activities at parties were also
exempt to some degree from participants’ own affective
judgment and value:
Interviewer: So how about. . . have you ever done it
without a condom. . . with someone other than your
girlfriend?
Urban male: No.
Interviewer: No? Not ever?
Urban male: Not to my knowledge anyway.
Interviewer: Not to your knowledge?
Urban male: Well, I’m not going to totally discredit it
because it may have happened but like I said I like to think
I’m a pretty safe guy but sometimes a 40-pounder will
change that.
This young man describes how he may or may not have
had sex without a condom, and is not sure because of alcohol
use (a 40-pounder is a 40-oz bottle of spirits). Although
elsewhere in the interview this young man was adamant
about the benefits of condom use and his own consistent
use of condoms, he implies here that he is not responsible
for condom use or non-use when he was drunk, or that is it
understandable that his normal judgment about the benefits
of condom use was suspended.
Substance use in sexual encounters
“Parties” were an extremely common context of sexual
encounters, hence participants often engaged in sexual
partnerships of various sorts when alcohol had been
consumed (no participants specifically described use of other
substances during a sexual encounter). Participants widely
attributed “unsafe” and “risky” sexual behaviour to substance
use:
Urban male: I would say that being high or being drunk
or being stoned you may not be so quick to, you know,
“Okay, let’s hold up, let’s stop and think about being safe
Sexual Risk Among Aboriginal Young People
about the situation,” right, instead of like the heat of the
moment, having that and also having that sense. . . of being
indestructible. . . you know this isn’t happening. . . nothing’s
going to happen to me. It can happen to this guy but it’s not
happening to me. I can remember being like that.
The idea that sexual relationships can be facilitated
by substance use is supported by the survey data from
Aboriginal students (Table 1). Young women who report
more lifetime substance use than their Aboriginal peers were
more likely to ever have had sex. Among the youngest age
group (14 years and under), young women with high level of
substance use had nearly 10 times the odds of ever having
sex versus young women with low levels of substance use.
Among older young women, the association diminished
but was still a strong risk factor. This indicates that high
levels of substance use at a young age may be a marker for
early sexual initiation. Aboriginal young men who used
higher levels of substances had nearly nine times the odds
of ever having sex and the association was constant across
age groups (no interactions). These results suggest that there
may be different trajectories of substance use among young
women and young men, and provide evidence of a strong
relationship between substance use and sexual initiation.
Unsafe sexual behaviour could be risky from both an
STI prevention perspective and because participants might
regret their actions. One young woman from the urban
sample described her ideas about this in relation to sexual
relationships with partners who may not have otherwise
been considered desirable:
Urban female: And some people would go home with some
other people. And they’d wake up like, “Oh my God like I can’t
believe I did that. . .” And then there’s the coyote ugly.
Interviewer: What’s that?
Urban female: Where you wake up to somebody next beside
you and they’re butt ugly.
BCAHS data supported ideas about a relationship
between substance use and number of sexual partnerships
(Table 1). Compared to other Aboriginal students,
Aboriginal young women were more likely to report having
more than one lifetime sexual partner if they reported using
more substances. Among the youngest women (age 14 and
under), substance use and having more than one partner
were not related, but there was a strong interaction by age;
among older groups of young women, the relationship was
stronger, so that in the oldest age group (17 or over), the
odds of having more than one lifetime partner were over 13
times higher among those who report more substance use
than peers. This indicates that higher substance use among
older girls is strongly associated with having multiple sexual
partners. Among young men, the relationship increased
linearly with age—the odds of having more than one
lifetime partner were doubled for those who reported more
substance use than peers.
Young people uniformly attributed condom nonuse among their friends and “youth” more generally to
alcohol consumption. One young man described his views
about condom non-use being caused by excessive alcohol
consumption:
Rural male: Um, hmm, sometimes some of them might have
it in their pockets just in case, but most of them drink until
they black out, so they don’t know what’s happening.
Although using substances before sex was widely
perceived to lead to condom non-use, quantitative data
did not support this (Table 2). Among both young men
and young women, lifetime substance use was not related
to condom use at last sexual encounter (Model 1, Table
2). Additionally, substance use at last sexual encounter was
not related to condom use at last sexual encounter after
controlling for lifetime substance use (Model 2, Table 2).
Clues to understanding why this might be can be gleaned
from examination of young people’s accounts of their own
behaviour. When describing their own condom non-use,
some young people reported being in serious relationships,
which could be acceptable contexts for pregnancy; some
tried to use condoms but had problems, and some reported
“knowing” or having previous relationships with partners
they considered “clean.” Essentially, substance use was a
reason for behaving irresponsibly, but only other young
people were perceived to behave this way.
DISCUSSION
Substance use is much more than an individual level
risk factor for Aboriginal young people. It interacts with
community and extended family structure, influences family
relationships, and has an impact situationally during sexual
encounters to shape young people’s behaviour. We found
evidence suggestive of gender specific age trajectories of
Journal of Aboriginal Health, November 2012
47
Sexual Risk Among Aboriginal Young People
TABLE 1. ODDS OF SEXUAL BEHAVIOUR BY LEVEL OF LIFETIME SUBSTANCE ABUSE
AMONG ABORIGINAL YOUNG PEOPLE
Level of lifetime substance use
Ever having sex
Distribution of lifetime substance use
among:
AOR*
95%
CI**
Having
more than
one lifetime
partner
AOR
95%
CI
Ever being diagnosed
with an STI
AOR
95% CI
Ever being involved in a
pregnancy
AOR
95% CI
Young men
All ages
Low
High
All young men, %
Ever had sex, %
(n = 1098)
(n = 360)
77.5
20.1
1
22.6
77.2
8.98
All young women, %
Ever having
sex, %
OR
(n = 1336)
(n = 445)
1
5.96–
13.52
2.25
1
1.26–
4.02
1
4.3
1.19–15.61
1.01
0.49–2.11
95% CI
AOR
95% CI
1.77–22.22
3.3
Young women
All ages
Low
72.8
22.4
High
27.2
67.3
87.1
9.6
95%
CI
OR
95%
CI
No significant interaction; presented
separately by age category below
AOR
1
1
6.28
1.33–8.19
Age 14 or under
Low
High
1
12.9
51.1
9.8
63.6
31.7
1
36.4
68.1
4.6
54.7
52.5
1
1
5.39–
17.82
1.02
No significant interactions in the separate age
categories
0.35–
2.97
Age 15–16
Low
High
1
2.67–
7.91
5.06
2.36–
10.87
Age 17 or over
Low
High
45.3
77.4
3.09
1
1.39–
6.86
13.4
5.70–
31.27
*Adjusted odds ratio (adjusted for age). Analyses based on weighted data and are adjusted for survey design features.
48
Journal de la santé autochtone, novembre 2012
Sexual Risk Among Aboriginal Young People
TABLE 2. ODDS OF CONDOM NON-USE AT LAST SEXUAL ENCOUNTER AMONG YOUNG
ABORIGINAL PEOPLE BY TYPE OF SUBSTANCE USE
Young women
Model 1 (n = 428)
Young men
Model 2 (n = 428)
Model 1 (n = 336)
Model 2 (n = 335)
Variable
AOR*
95% CI
AOR
95% CI
AOR
95% CI
AOR
95% CI
Age
1.39
1.17–1.67
1.39
1.17–1.66
1.12
0.90–1.39
1.11
0.89–1.38
High lifetime substance use 1.24
0.72–2.15
1.25
0.72–2.17
1.26
0.67–2.37
1.24
0.64–2.41
0.97
0.54–1.75
1.17
0.63–2.21
Substance use at last
sexual encounter
*Adjusted odds ratio. Odds ratios are adjusted for all other variables in the model. Analyses based on weighted data and are adjusted
for survey design features.
risk: for young men, substance use remains a strong and
constant risk factor for potentially risky sexual behaviour
over different age groups. For young women, substance
use predicts early sexual initiation and a high likelihood of
having more than one partner in older age groups. Although
participants widely perceived there to be a relationship
between condom non-use and alcohol use among “other
people,” quantitative data analysis does not support a
relationship.
We provide some of the first in depth qualitative and
representative quantitative data on substance use and sexual
behaviour among Aboriginal young people in Canada.
We recognize that the nature of the participant researcher
interaction will shape information given by participants and
how that information is interpreted. The first author is a
Caucasian female, who was 25 years old at the time of the
interviews. Most participants seemed to relate to her as a
peer, and several took the opportunity to educate her about
their culture. Further research should be conducted with
older, male, and/or Aboriginal interviewers. Explorations of
the social organization of substance use and public displays
of substance use behaviour among young people in particular
might be presented differently to a cultural “insider” versus
an “outsider.” The interviewer was also originally from this
local area, and has some shared experience of the local
context and understanding of local vocabulary and slang;
participants might present different stories to someone who
is from a different area and who does not share a vocabulary
to discuss experiences of substance use. Regardless,
triangulation of information from different interviewers and
different types of sources will contribute to a more robust
understanding of relationships between substance use and
sexual risk.
Our quantitative measures are of substance use
generally, rather than whether or not specific substances
such as alcohol and/or marijuana were used. Further
research with more detailed measures would provide further
insight into relationships. We were also unable to include
very young adolescents in our qualitative study. Given our
quantitative findings regarding young women below age
14, qualitative exploration of substance use patterns and
sexual behaviour in younger age groups would be especially
interesting. Further analysis to explore alcohol and other
substance use at the family and community level and how
this relates to family structure and sexual risk would also be
informative.
Findings in relation to other literature
Our work provides some support for Walters and
colleagues’ model (2002), and provides more specific
information on how young people perceive substance use
at the community level, suggesting pathways by which
this might influence individual behaviour. Our previous
quantitative work supports the idea that family relationships
play a key role in shaping sexual risk (Devries et al., 2009a;
Devries, Free, Morison, & Saewyc, 2009b). Other authors
have found that initiation of alcohol use in American Indian
children is delayed by parental norms against alcohol and
marijuana use (Kosterman, Hawkins, Guo, Catalano, &
Journal of Aboriginal Health, November 2012
49
Sexual Risk Among Aboriginal Young People
Abbott, 2000). Family members’ substance use behaviour is
an independent predictor of adolescent substance use in the
United States; interestingly, this association was moderated
by belonging to church or other religious organizations but
not participation in cultural activities in the community (e.g.,
powwows, which often involve drinking) (Yu & Stiffman,
2007). This did not emerge from our qualitative interviews,
and may be due to the much more secular Canadian context.
Influence of cultural activities would be interesting to explore
further in the Canadian context, as Walters et al.’s model
suggests these activities may be protective.
We found very strong interactions between substance
use and sexual risk behaviours by age in young women,
suggesting that early alcohol use is associated with a very
large increase in the odds of sexual risk behaviour. For young
men, the relationship between substance use and various
sexual behaviours, especially sexual initiation, is strong and
consistent across all age groups. Previous research has not
focused on gender differences among Aboriginal adolescents,
but has found relationships among substance use, early
initiation of sex, and sexual risk behaviours. Simoni, Sehgal,
and Walters (2004) outline a triangle of risk in adult Native
American women—substance use, sexual risk, and sexual
trauma. It is possible that sexual trauma may explain the very
strong relationship between ever having sex and substance use
among the youngest group of women. In our previous work,
we have shown that nearly 40% of Aboriginal young women
who have ever had sex also report sexual abuse, and that sexual
abuse experience is a key predictor of sexual risk behaviour
(Devries et al., 2009a; Devries et al., 2009b). Young women
who have sex early may have had their sexual initiation in the
context of abuse, and may be more likely to continue to have
sex with different partners. This helps account for the sharp
increase in likelihood of having more than one partner as age
increases.
Further research in the Canadian context should explore
differences by socioeconomic status and between those
living on- and off-reserve, especially for young women.
Longitudinal research in the United States has found
evidence that family income supplementation protects
against alcohol and cannabis dependence (Costello, Erkanli,
Copeland, & Angold, 2010), suggesting that socioeconomic
status is important for patterns of substance use over time.
Others have found that individuals living on-reserve have
up to double the rates of lifetime alcohol dependence versus
off reserve residents (16.1% vs 7.2%) (Yu & Stiffman, 2007).
Interestingly, experience of racism is associated with increased
odds of smoking among Māori in New Zealand (Harris et
al., 2006). Similar findings may hold for other substance use
among other indigenous populations, and may be important
for Aboriginal young people in British Columbia.
50
Journal de la santé autochtone, novembre 2012
Implications
Providing individual level substance use and sexual
risk reduction/prevention programs will undoubtedly
go some way toward improving outcomes, but without
addressing the contextual aspects—substance use within
families and communities, and the effects of this on family
structure—results likely will be suboptimal. It is also clear
that interventions must happen at young ages for both young
women and young men, and must address the seemingly
different trajectories of behavioural risk. For young women,
further research is needed to understand factors affecting early
sexual initiation and how to most effectively intervene. More
detailed further research is needed to more fully elucidate the
pathways by which substance use produces sexual risk among
Aboriginal young people.
CONCLUSIONS
Interventions designed to reduce Aboriginal young
people’s substance use and sexual risk behaviours will have
limited effect in a context where substance use has affected
community structures and family relationships. Sexual health
interventions also need to consider the situational effects of
intoxication during sexual encounters.
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Journal of Aboriginal Health, November 2012
51
Feasibility and Outcomes of a
Community-Based Taper-to-LowDose-Maintenance Suboxone
Treatment Program for Prescription
Opioid Dependence in a Remote First Nations Community in Northern
Ontario
Mae Katt, NP, MEd, Centre for Rural and Northern Health Research, Lakehead University, Thunder Bay,
Ontario
Claudette Chase, MD, Sioux Lookout First Nations Health Authority, Sioux Lookout, Ontario
Andriy V. Samokhvalov, MD, PhD, Centre for Addiction and Mental Health (CAMH), Toronto, Ontario,
Department of Psychiatry, University of Toronto, Toronto, Ontario
Elena Argento, MPH, Centre for Applied Research in Mental Health and Addiction (CARMHA), Simon Fraser
University, Vancouver, British Columbia
Jürgen Rehm, PhD, Centre for Addiction and Mental Health (CAMH), Toronto, Ontario, Department of
Psychiatry, University of Toronto, Toronto, Ontario, Dalla Lana School of Public Health, University of
Toronto, Toronto, Ontario
Benedikt Fischer, PhD, Centre for Addiction and Mental Health (CAMH), Toronto, Ontario, Centre for
Applied Research in Mental Health and Addiction (CARMHA), Simon Fraser University, Vancouver, British
Columbia
ABSTRACT
Objective: Non-medical prescription opioid use (NMPOU) is a major health problem in
North America and increasingly prevalent among First Nations people. More than 50% of
many Nishnawbe Aski Nation communities in northern Ontario report NMPOU, resulting in
extensive health and social problems. Opioid substitution therapy (OST) is the most effective treatment for opioid dependence yet is unavailable in remote First Nations communities. Suboxone (buprenorphine and naloxone) specifically has reasonably good treatment
outcomes for prescription opioid (PO) dependence. A pilot study examining the feasibility
and outcomes of a community-based Suboxone taper-to-low-dose-maintenance program
for PO-dependent adults was conducted in a small NAN community as a treatment option for
this particular setting.
52
Journal de la santé autochtone, novembre 2012
Design: Participants (N = 22, ages 16–48 years) were gradually stabilized on and tapered off
Suboxone (provided on an outpatient and directly-observed basis) over a 30-day period. Low
dose maintenance was offered post-taper to patients with continued craving and relapse
risk; community-based aftercare was provided to all participants.
Results: Of 22 participants, 21 (95%) completed the taper phase of the program. Fifteen
(88%) of 17 participants tested by urine toxicology screening had no evidence of PO use
on day 30. No adverse side effects were observed. All but one of the taper completers were
continued on low-dose maintenance.
Conclusion: Community-based Suboxone taper-to-low-dose-maintenance is feasible and
effective as an initial treatment for PO-dependence in remote First Nations populations,
although abstinence is difficult to achieve and longer term maintenance may be required.
More research on OST for First Nations people is needed; existing OST options, however,
should be made available to First Nations communities given the acute need for treatment.
KEYWORDS
Aboriginal health, addiction, community-based treatment, prescription opioids, opioid
substitution treatment
Journal of Aboriginal Health, November 2012
53
Suboxone Treatment in First Nations
INTRODUCTION
I
n North America, non-medical prescription opioid
use (NMPOU)—involving drugs such as OxyContin
(oxycodone), hydromorphone, and morphine —
and related harms have become a major public health
crisis in recent years, causing extensive morbidity and
mortality (Dhalla et al., 2009; Fischer & Argento, in press;
Manchikanti, Fellows, Ailinani, & Pampati, 2010). In
Canada, up to 6.5% of the general adult population report
NMPOU in the past year with even higher rates reported
for young people, including secondary students (Shield,
Ialomiteanu, Fischer, & Rehm, 2012). Both prescription
opioid (PO)-related accidental deaths and admissions to
substance use treatment facilities have risen substantially
in Canadian jurisdictions (Dhalla et al., 2009; Fischer,
Nakamura, Rush, Rehm, & Urbanoski, 2010).
First Nations people are among the most socioeconomically disadvantaged groups in Canada, experiencing
substantially poorer health outcomes for chronic diseases
(e.g., cardiovascular problems and diabetes) as well as
a higher incidence of premature mortality compared to
non-First Nations populations (Dyck, Osgood, Lin, Gao,
& Stang, 2010; Health Canada, 2009). First Nations
people also have much higher rates of substance use
(alcohol, tobacco, and injection drug use, among others)
and are consistently found to be at much greater risk for
morbidity and mortality outcomes such as HIV or hepatitis
C transmission and drug overdose (Duncan et al., 2011;
Health Canada, 2009; Wu et al., 2007). First Nations people
are considered particularly vulnerable to substance abuse due
to the systemic impact of social determinants of health—
e.g., lack of adequate housing or employment—and trauma,
such as the legacy of residential schools. The loss of distinct
cultural knowledge and capital related to traditions, land,
and people is also widely accepted as a pathway to substance
abuse, especially at an early age (Dell et al., 2012; Gracey &
King, 2009).
Recently, NMPOU has become acutely problematic in
First Nations communities, including the Nishnawbe Aski
Nation (NAN). The NAN, encompassing most of Ontario’s
northern land mass, is comprised of 49 smaller communities
and has a total population of around 45,000. In some NAN
communities, more than 50% of the adult population are
reported to be PO (mainly OxyContin) abusers and in need
of treatment; similar data have been reported for high school
populations (Nishnawbe Aski Nation Think Tank, 2011). A
54
Journal de la santé autochtone, novembre 2012
recent study from a NAN health centre found that 17.2%
of pregnant women sampled abused POs (oxycodone)
during pregnancy, with a significant percentage of exposed
neonates experiencing opioid withdrawal symptoms or
neonatal abstinence syndrome (Kelly et al., 2011). In
addition, multiple NAN communities have reported major
increases in family and child neglect, crime and violence, and
overall community decay due to NMPOU. On this basis,
the NAN Chiefs-in-Assembly formally declared a “state
of emergency” related to PO misuse, urgently requesting
assistance and intervention support (Nishnawbe Aski
Nation Think Tank, 2011).
Opioid pharmacotherapy, specifically opioid
substitution therapy (OST) with either methadone or
buprenorphine, is considered the gold standard of treatment
for opioid dependence, with both drugs included on the
World Health Organization’s list of essential medicines.
Methadone and buprenorphine have demonstrated similarly
beneficial outcomes in OST, such as reductions in illicit
opioid use, health risk behaviors, and overdose (Mattick,
Kimber, Breen, & Davoli, 2008; White & Lopatko,
2007). OST is widely available and easily accessible to
most Canadians. The number of people in methadone
maintenance treatment in Ontario has doubled to more than
28,000 in recent years, primarily due to patients with PO
dependence (College of Physicians and Surgeons of Ontario,
2009). However, OST is not ordinarily available to First
Nations people in remote communities, as no treatment
infrastructure exists. Patients who need OST are required to
travel or move to distant urban centres to receive treatment.
While methadone has been used for maintenance
treatment purposes in Canada for decades, Suboxone
(a combined buprenorphine/naloxone formulation,
administered via sublingual tablets) is a relatively new OST
drug that has shown reasonably good outcomes in treating
opioid dependence (Fudala et al., 2003; Kahan, Srivastava,
Ordean, & Cirone, 2011; Ling et al., 2005). Health Canada
approved Suboxone to treat opioid dependence in 2007,
but the drug was not included for coverage under the
Federal Non-Insured Health Benefits Program (FNIHBP)
for First Nations people at the time of study. Based on its
pharmacodynamics and pharmacokinetics, buprenorphine
has a longer duration of action than methadone as well
as a ceiling effect, and therefore has superior withdrawal
resolution as well as a lower risk of abuse and overdose
(Alho, Sinclair, Vuori, & Holopainen, 2007; Dunn, Sigmon,
Strain, Heil, & Higgins, 2011; Gowing, Ali, & White,
Suboxone Treatment in First Nations
2009). Suboxone has also been used for opioid detoxification
treatment approaches; most studies to date, however, involve
only heroin users. A recent study found that a 30-day
Suboxone detoxification regimen was more effective than a
five-day regimen in terms of treatment completion (16% vs.
4% of participants) and producing opioid-free urines (4.3
vs. 4.8 positive specimens) (Katz et al., 2009). Two recent
studies focusing on short-term Suboxone detoxification
treatment for PO dependence have found that only a
minority (i.e., less than one-third) of treatment completers
have opioid-free urine at the end of treatment (Sigmon,
Dunn, Badger, Heil, & Higgins, 2009; Weiss et al., 2011).
Given the absence of OST options, as well as the urgent
need for effective NMPOU treatment in remote areas, a
pilot study to explore the feasibility and potential benefits
of a Suboxone taper-to-low-dose-maintenance treatment
program was conducted in a small NAN community with
high rates of PO dependence. Specifically, the study sought
to examine a workable and effective treatment option that
would ideally accomplish a taper-to-abstinence outcome.
Post-taper low-dose maintenance would be an option
for those with continued craving and relapse risk in this
particularly challenging setting. The NAN community in
which the study took place (the name of the community
was kept anonymous to protect the identities of study
participants) has a total population of around 300 people,
with 75% of adults estimated to be PO-dependent. The
community is located 400 km from the nearest city and is
accessible only by air. It has an elementary school, a small
variety store, and a fuel supply station. Basic health (i.e.,
nursing) services are provided Monday to Friday, but all
serious health problems require air transportation to the
nearest hospital 160 km away.
METHODS
For purposes of this study, investigators established
a customized basic infrastructure and protocol for the
Suboxone taper-to-low-dose-maintenance program in the
target population. The treatment program was delivered in
the community’s local health station by a team comprised of
an off-site physician, a nurse practitioner and case manager
with extensive addiction care experience, and an on-site
registered nurse and addiction worker. The off-site team
members were present at the health station during the first
(induction) and fourth (tapering) weeks of the initial 30-day
phase of the program. Further consultations occurred with
opioid dependence treatment specialists in the Addictions
Program at the Centre for Addiction and Mental Health
(CAMH) in Toronto, Ontario.
The study involved a convenience sample, in that
community members with known PO abuse were
approached and invited to participate in the pilot treatment
program. A total of 22 participants with PO dependence
were enrolled in the study. The principal treatment objective
was to stabilize participants on, and completely taper
them off, Suboxone by day 30 of the program. Patients for
whom it was clinically necessary due to continued craving
and/or relapse risk would remain on low-dose Suboxone
maintenance post-taper. Opioid dependence and treatment
eligibility were confirmed by a comprehensive medical
examination, including an assessment of opioid use history,
urine toxicology screening (UTS), and the Clinical Opiate
Withdrawal Scale (COWS) (Tompkins et al., 2009).
Exclusion criteria were confirmed pregnancy and currently
acute, serious mental health episodes. Participants were
required to not consume any psychoactive substances in the
24 hours before starting treatment. Initial induction was
2–4 mg of Suboxone, followed by another 4 mg dose on the
same day as determined by withdrawal symptoms. Suboxone
doses were increased to optimum levels of 8–16 mg over
the following three days. Suboxone was dispensed daily and
administered under direct observation at the treatment site
on an outpatient basis. In cases of continued withdrawal
problems, participants received ancillary medications (e.g.,
ibuprofen or clonidine). After successful stabilization,
Suboxone tapering began on days 8–9, with successive dose
decrements of 2 mg every three days. Both UTS and COWS
were performed at the end of the 30 day taper period and
each patient was assessed individually for a personalized
treatment aftercare plan, including the potential need for
continued low-dose Suboxone maintenance. Aftercare
programming consisted of several weeks of individual
and group counselling focusing on relapse prevention,
incorporating motivational enhancement, health education,
and spiritual support.
Suboxone medications were kept in the care of on-site
health staff, stored at the health station in a lockbox with two
padlocks. The local police constable provided safe storage at
the police office when the nurse was not in the community.
Following the practice guidelines for community-based
Suboxone treatment programs, the treatment staff completed
a medication register. There were no incidents of lost or
stolen medication during the study period.
Journal of Aboriginal Health, November 2012
55
Suboxone Treatment in First Nations
TABLE 1. Socio-demographic and Opioid Use Characteristics of
the Sample (N = 22)
Gender (male)
45.0% (n = 10)
Age (years)
Mean: 26.7 (SD: 8.2); Median: 23.5
Range: 16.0–48.0
Employed
32.0% (n = 7)
Duration of opioid use (years)
Mean: 3.7 (SD: 1.89); Median: 4.0
Range: 1.0–7.0
Opioid use (morphine equivalent, mg/day)
Mean: 203.1 (SD: 119.8); Median: 180.0
Range: 45.7–481.2
OxyContin use (mg/day)
Mean: 87.6 (SD: 65.5); Median: 80.0
Range: 0.0–240.0
Proportion of OxyContin in total opioid use
Mean: 83.7% (SD: 26.4%); Median: 95.2%
Range: 0.0–100.0%
The initial taper phase of the study took place October
3–November 2, 2011. Participants signed a consent and
treatment agreement. The specific objectives of the study
were to assess treatment feasibility and progress, as well as
basic outcomes at the end of the initial 30-day phase of the
program.
being completely tapered off of Suboxone, while a female
participant with pregnancy detected and confirmed after
the start of treatment was switched to low-dose Suboxone
maintenance when the application for the clinical standard
of buprenorphine monoformulation maintenance was not
approved by Health Canada.
RESULTS
DISCUSSION
The treatment sample consisted of 10 males and 12
females, with an age range of 16–48 years (see Table 1).
Participants had abused POs for a mean duration of 3.7
years; most abuse was in the form of OxyContin and, to a
lesser extent, Percocet (oxycodone and acetaminophen). Of
the total 22 patients enrolled, 21 (95%) completed the initial
30-day taper phase of the Suboxone taper-to-low-dosemaintenance program (see Table 2). Fifteen of 17 (88%)
tested participants had PO-free urine (measured by UTS)
on day 30 of the initial taper phase. No adverse side effects
were observed in the cohort. While the primary objective
of the treatment program was opioid abstinence at the end
(day 30) of the initial taper phase of the program, following
the individualized assessments the treatment team decided
to have 19 of the 21 taper phase completers continue on
low-dose Suboxone maintenance (most at 4 mg/day) for
a short-term (i.e., 6–8 week) period. These decisions were
made primarily because of continued substantive opioid
cravings, to try to prevent the acute possibility of relapse to
PO abuse in these patients. One participant was comfortable
This study assessed a community-based Suboxone
taper-to-low-dose-maintenance program for PO-dependent
individuals in a small and remote First Nations community
with an extremely high rate of PO abuse, yet no ready access
to adequate regular treatment resources or programming
(e.g., OST). This small, exploratory study confirmed the
overall feasibility of the Suboxone taper-to-low-dosemaintenance program as implemented in this distinctly
challenging setting. The findings contribute to the evidence
on evolving models for the delivery of community-based
health care—in this case, acute addiction treatment—in
remote and disadvantaged First Nations communities (Hay,
Varga-Toth, & Hines, 2006; Rygh & Hjortdahl, 2007).
Investigators easily recruited participants into the treatment
program, and the collaboration between off-site addiction
treatment specialists (either on a fly-in basis for key phases
of the treatment program or by consulting over distance) and
on-site care providers was effective and worked well. On this
basis, this study represents a possible and workable model for
opioid dependence treatment in remote, and specifically First
56
Journal de la santé autochtone, novembre 2012
Suboxone Treatment in First Nations
TABLE 2. SUBOXONE TREATMENT (TAPER PHASE) PARAMETERS AND
OUTCOMES (N = 22)
Initial COWS* score
Mean: 8.1 (SD: 3.7); Median: 8.0
Range: 1.0–15.0
Suboxone dose on day 1 (mg)
Mean: 7.1 (SD: 1.6); Median: 8.0
Range: 4.0–8.0
Maximum daily Suboxone dose (mg)
Mean: 14.7 (SD: 2.3); Median: 16.0
Range: 8.0–16.0
COWS score on day 30
Mean: 4.2 (SD: 2.0); Median: 4.0
Range: 1.0–9.0
30-day taper phase completers
95.0% (n = 21)
UTS specimens negative for opioids on day 30
(n = 17 validly administered tests)
88.0% (n = 15)
Taper completers continued on low-dose maintenance of Suboxone or
Subutex (buprenorphine)
95.0% (n = 20)
*Clinical Opiate Withdrawal Scale
Nations, communities with extensive and urgent care needs
(Gray & Saggers, 2009; Wakerman, 2009).
The study was effective in that the vast majority
of participants completed the initial taper phase of the
Suboxone taper-to-low-dose-maintenance treatment
program, i.e. they were successfully retained in treatment
for the 30-day taper period, and were successfully
transitioned onto low-dose Suboxone maintenance, even
though the idealized objective of zero-dose tapering (i.e.,
opioid abstinence) was not possible for the majority of
participants. Ongoing craving symptoms and the risk of
immediate relapse to PO misuse were too great for many
participants, and therefore these individuals received the
low-dose Suboxone maintenance option. In this respect,
our study confirms findings from other research suggesting
that it is difficult for most opioid-dependent individuals
to achieve abstinence from opioids following short-term
Suboxone detoxification or taper regimens (Sigmon et al.,
2009; Weiss et al., 2011; Woody et al., 2008). It is unknown
whether longer taper regimens (e.g., 45 or 60 days) would
help improve the rate of successful treatment outcomes
towards opioid abstinence or detoxification (Dunn et al.,
2011; Ling et al., 2009; Weiss et al., 2011). It has also not
been effectively established what patient characteristics may
predict more successful short-term detoxification or taper-toabstinence outcomes. Based on non-systematic impressions
from the present study, it appears that those participants
with long and intensive PO use histories were less likely to
be able to successfully taper off of Suboxone at the 30-day
mark. Short-term low-dose Suboxone maintenance may help
some patients to achieve a successful zero-dose taper (i.e.,
abstinence). For others, opioid dependence may be a chronic
condition requiring long-term or infinite maintenance
treatment (Sigmon et al., 2009; Weiss et al., 2011). Our
ongoing research will document and assess the low-dose
maintenance phase, as well as future treatment courses and
outcomes, of the study population in future publications.
CONCLUSIONS
Our study has important implications for research and
practice. First, longer term follow-up is needed to assess
long-term OST options and outcomes in opioid-dependent
First Nations populations. Second, a larger scale study should
examine treatment outcomes for different opioid treatment
regimens (e.g., shorter and/or longer term Suboxone taper or
maintenance regimens or use of other OST agents) in POdependent First Nations populations. Given the extensive
and acute PO misuse crisis in the NAN and other First
Nations communities, OST infrastructure and services for
opioid dependence in remote First Nations communities
must be quickly improved (Kelly et al., 2011; Nishnawbe
Aski Nation Think Tank, 2011). In the absence of these
measures, existing OST options such as the Suboxone taper-
Journal of Aboriginal Health, November 2012
57
Suboxone Treatment in First Nations
to-low-dose-maintenance model used in this study should be
made readily available to those in need.
ACKNOWLEDGMENTS
The authors acknowledge research funding from the
Canadian Institutes of Health Research (CIHR), specifically
Team Grant #94814, as well as the CAMH Foundation,
supporting the development of this manuscript. Dr. Fischer
furthermore acknowledges salary support from a CIHR/
Public Health Agency of Canada Chair in Applied Public
Health; Drs. Fischer and Rehm acknowledge support from
the Ontario Ministry of Health and Long-Term Care.
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