improving health research among indigenous peoples in canda
pdf
keyboard_arrow_up
School
University of Toronto *
*We aren’t endorsed by this school
Course
200
Subject
Health Science
Date
Nov 24, 2024
Type
Pages
6
Uploaded by Angelalajajian
E616
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
© 2018 Joule Inc. or its licensors
H
istorically, owing to a dominant Western science para-
digm, Indigenous methods, methodologies, epistemolo-
gies, knowledge and perspectives have been dismissed
as unsuitable for health research.
1
As such, Indigenous health
research frequently remains poorly aligned with the goals and
values of Indigenous Peoples.
2
Furthermore, research involving
Indigenous people has been tainted by historical atrocities.
3
The
process of reconciliation in Canada should include the indi-
genization of health research, which will contribute to decon-
struction of colonial control.
4
Employing the core ethical principles of “respect for persons,
concern for welfare, and justice” used in the
Tri-Council Policy
Statement: Ethical Conduct for Research Involving Humans
,
5,6
we
review the history of Indigenous health research in Canada and
outline critical considerations for non-Indigenous researchers.
Our aim is to promote a collaborative approach to Indigenous
health research in Canada that prioritizes the goals, knowledge
and strengths of Indigenous partners.
How has the history of Indigenous
health research in Canada shaped
current governance?
Many Indigenous people are highly involved in health research.
However, many remain hesitant to participate, given the histori-
cal context of research involving Indigenous people in Canada.
7
Examples of historical research atrocities committed by non-
Indigenous researchers are nutritional experiments and BCG vac-
cine trials, which are outlined in Boxes 1 and 2. Although there
may have been knowledge accrued from these studies, as with
Nazi Holocaust experiments and the Tuskegee syphilis study, the
motivations, rationale and methods involved were highly unethi-
cal and have bred a culture of mistrust of health research.
In response to this history of unethical research, the Royal Com-
mission on Aboriginal Peoples outlined the first statement on
Indigenous research ethics.
9
This, and guidelines from the Can-
adian Institutes of Health Research, among others, outlined in
Box 3, informed the current Tri-Council policy statement on Indige-
nous health research and ethical conduct of research in Canada.
5,13
The Tri-Council policy statement describes the misappropriation
and abuse of Indigenous knowledge, property, culture and bio-
logical samples as well as “failure to share data and resulting bene-
fits; and dissemination of information that misrepresented or stig-
matized entire communities.”
5
The chapter “Research involving the
First Nations, Inuit and Métis Peoples of Canada
”
in the Tri-Council
statement is self-described as “a step toward establishing an eth-
ical space for dialogue on common interests and points of differ-
ence between researchers and Aboriginal communities engaged in
research,” and it includes a requirement for community engage-
ment, recognition of diverse interests within communities, and
respect for customs and traditions — including research traditions.
5
Indigenous communities and organizations may also have ethical
guidelines for research of their own, which must be considered
along with the tenets of the Tri-Council policy statement.
5
These
guidelines act as a starting point for researchers to understand the
complex array of concepts important to conducting ethical Indi-
genous health research.
Although research that is obviously unethical is no longer con-
ducted, problematic issues still arise. For example, a 2014 review
found a considerable lack of community engagement in research
on neurodevelopmental disorders among Indigenous children in
Canada.
2
Of 52 included papers, only three used community-
based participatory research methodologies, and one 1999 study,
conducted without consent, was stopped at the request of the
ANALYSIS
Improving health research among Indigenous
Peoples in Canada
Sarah Hyett MSc, Stacey Marjerrison MD MSc, Chelsea Gabel PhD
n
Cite as:
CMAJ
2018 May 22;190:E616-21. doi: 10.1503/cmaj.171538
CMAJ
Podcasts: author interview at https://soundcloud.com/cmajpodcasts/171538-ana
KEY POINTS
•
Indigenous methods and methodologies are increasingly
recognized as valuable tools to improve research practices and
outcomes.
•
Ethical guidelines, community-based and partnership
approaches, and reflexive allyship are transforming how
researchers approach Indigenous health research.
•
When reporting on Indigenous health outcomes, it is crucial to
provide context for Indigenous health challenges observed, and
highlight strengths, to avoid contributing to stigmatization in
wider society.
•
It remains important to reflect critically on our attempts as
researchers to act as allies, and to highlight the unique
knowledge and skills possessed by Indigenous scholars and
community leaders.
ANALYSIS
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
E617
community.
2,15
It is worth highlighting that 51 of
the 52 Indigenous neurodevelopment studies
focused solely on fetal alcohol spectrum disor-
der (FASD),
2
despite higher incidence of autism
spectrum disorder, and similar incidence of
cerebral palsy to FASD in North America. This
skewed research in only one area of neurodevel-
opmental disorders can be highly stigmatizing.
16
To date, no other systematic review examining
community engagement in Indigenous health
research has been identified, although we are
Box 1: Nutrition experiments conducted in residential schools and
Indigenous communities
3
Nutritional experiments were conducted on children in residential schools and
Indigenous communities between 1942 and 1952 in Canada and include the following:
•
1942 study in five northern Manitoba Cree communities
•
The study involved physical examinations, blood tests and radiographs.
•
Researchers commented on profound malnutrition and near starvation.
•
1947/48 James Bay Survey of Attawapiskat and Rupert’s House Cree First Nations
•
The study involved physicians, a dentist, an x-ray technician, a photographer and
three anthropologists.
•
The study aimed to examine nutritional status, and provide guidance regarding
combatting of not only malnutrition but also the threat of Indigenous
“dependency.”
•
Studies on malnourished Indigenous populations in northern Manitoba, 1942–1944
•
There is little evidence of informed consent.
•
The study was conducted on 300 malnourished Indigenous people: 125 were
given vitamin supplements that were poorly understood in this era, and the
remainder were controls.
•
Residential school experiments, 1948–1952
•
Observations in 1944 had already established poor nutrition in residential
schools.
•
Rather than immediately improving food, schools were treated as laboratories to
study nutrient requirements in malnourished children.
•
At the Alberni residential school, observing riboflavin deficiency, researchers
allowed continued insufficient milk consumption and riboflavin deficiency for
two years to provide a “baseline,” followed by providing increased milk.
•
At Shubenacadie residential school, children were found to be deficient in
multiple vitamins and minerals, including ascorbic acid; researchers carried out a
double-blind randomized trial in which children were given either ascorbic acid
or placebo to examine the effect on gums.
•
At the Blood residential schools, children found to be deficient in thiamine
endured a two-year baseline measurement, with a diet known to be inadequate,
after which they were given supplemented flour.
•
At St. Mary’s school, a high deficiency in riboflavin was found; children were given
“Newfoundland Flour Mix,” illegal to sell outside of Newfoundland owing to
added thiamine, riboflavin, niacin and bone meal, and children became anemic.
•
At Cecilia Jeffrey residential school, children were given the option of eating
whole wheat bread combined with an education program to examine the effect
of education on food choices.
•
The St. Paul’s residential school served as a control
for the other schools in the
study (Alberni, Shubenacadie, Blood, St. Mary’s and Cecilia Jeffrey); no changes
or interventions occurred despite well-established knowledge of existing
malnutrition.
•
Researchers requested that dental services for the children at all the schools
under investigation (Alberni, Shubenacadie, Blood, St. Mary’s, Cecilia Jeffrey and
St. Paul’s) be withheld for the duration of their studies so as to not interfere with
the results.
None of these experiments had any evident positive or lasting effect on the health
of those under study.
These experiments exploited rather than addressed the
issue of malnourishment and any larger structural causes, reflecting how, at the
time, “bureaucrats, doctors, and scientists recognized the problems of hunger
and malnutrition, yet increasingly came to view Aboriginal bodies as
‘experimental materials’” rather than human beings deserving of bodily
autonomy and adequate food.
Box 2: Qu’Appelle vaccine trials
8
The Department of Indian Affairs was
concerned about the spread of disease from
reserves to settlers. At the time, bacille
Calmette–Guérin (BCG) vaccination was only
for individuals at very high risk of tuberculosis
or with low socioeconomic status. Despite
doubts about the effectiveness and safety of
the BCG vaccine, the Department of Indian
Affairs supported experiments with BCG
vaccination. In 1933/34, infants were given
doses, and additional infants were selected as
controls. Although the vaccine did successfully
prevent tuberculosis in most infants assigned
the BCG vaccine, almost one in five Indigenous
children involved in the trial died of other
poverty-related illnesses. Vaccine success does
not erase the concerning motivations and
methods of the trial and the implication that
Indigenous lives were considered of lesser
value than settler lives.
Box 3: Major ethical guidelines in
Indigenous health research*
•
Tri-Council Policy Statement: Ethical Conduct
for Research Involving Humans
(chapter 9)
5
•
OCAP (ownership, control, access and
possession) framework
10
†
•
Royal Commission on Aboriginal Peoples
statement on research ethics
9
•
Assembly of First Nations:
First Nations
Ethics Guide on Research and Aboriginal
Traditional Knowledge
11
•
First Nations Regional Longitudinal Health
Survey: Code of Research Ethics
12
•
CIHR Guidelines for Health Research
Involving Aboriginal People (2007–2010)
13
•
Inuit Tapiriit Kanatami:
National Inuit
Strategy on Research
14
*This list is not exhaustive. Communities, regions and
organizations may have their own guidelines. It is the
researcher’s responsibility to determine which guidelines
are appropriate, in collaboration with stakeholders.
†OCAP is a registered trademark of the First Nations
Information Governance Centre (FNIGC; www.FNIGC.
ca/OCAP).
ANALYSIS
E618
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
currently undertaking an assessment of Indigenous participation
in pediatric research in Canada. As Indigenous participation
improves, researchers should continue to critically examine the
risk of tokenism and consider whether the involvement is truly
meaningful.
17
Throughout this analysis, we delve more deeply
into present-day issues of nonintentional harms, such as those to
community values, autonomy and justice.
Why are Indigenous ways of knowing resisted?
Incorporation of Indigenous methodologies and methods into
research is increasingly recognized as critical to generating
results that truly represent the perspectives of Indigenous partic-
ipants.
1,18
Their use recognizes Indigenous Peoples as having the
tools to best address concerns of their own communities. Several
qualitative studies have successfully used culturally appropriate
methods of data collection, as we outline in Table 1.
29
However, Indigenous researchers continue to face pressure to
prove these methodologies and methods rigorous and credible
using Western standards.
1
Often Western funding bodies cite
concerns about the validity of Indigenous methodologies, meth-
ods and epistemologies.
30
This imparts a pressure to assimilate.
1
Some non-Indigenous researchers may unconsciously feel Indig-
enous knowledge is threatening to Western knowledge, as differ-
Table 1: Examples of Indigenous or culturally appropriate methodologies and methods
Example
Description
Methodology: The theoretical lens or standpoint through which research is understood, designed and conducted
19
A tribal methodology with
Nêhiýaw Kiskêyihtamowin
(Plains Cree knowledge) at the
core
• Built on qualities of Plains Cree tradition, including “holistic epistemology, story, purpose, the experiential,
tribal ethics, tribal ways of gaining knowledge, and overall consideration of the colonial relationship”
20
• Example: Kovach’s doctoral studies examining Indigenous perspectives of Indigenous methodologies
20
Two-eyed seeing
• Belief that one can see from both an Indigenous and Western viewpoint simultaneously, recognizing these
systems can exist side by side
21
• Example: In research by Marsh and colleagues, Indigenous strategies included working with Elders to include
knowledge sharing, ceremony, and developing an approach depicted through the medicine wheel, and
Western strategies included the approach to statistical analysis of survey responses
22
The petal flower
• Framework envisions research as a flower. The flower includes roots as foundational elements, flower centre as
self, who is central to the search; leaves as journey; stem as methodologic backbone and supports; petals as
diverse ways of search for knowledge; and environment as academic context
23
• Example: Absolon used this framework in research of Indigenous methodologies used by Indigenous graduate
“searchers”
23
nayri kati
(“good numbers”)
• A quantitative methodology, defined as “good numbers” in the
palawa
Tasmanian Indigenous language, which
explicitly states the Indigenous standpoint of the researcher along with the following key tenets: 1) privileges
Indigenous voices, knowledges and understandings, 2) does not take Euro-Australian as the unacknowledged
norm, 3) does not presume Indigenous deficit as a starting point
19
• Example: Walter and Andersen report on numerical scales to measure performance with an Indigenous
worldview
19
Methods: The tools or techniques to conduct research
Symbol-based reflection
• Anishinaabe arts–based method
24
• Participants use symbols to refelect their perspectives
24
• Respects belief that participants’ energy is put into their symbol(s) with spiritual importance
24
• Example of use: Carter and colleagues used symbol-based reflection to “explore practices that support positive
First Nations identity” and “provide suggestions for practicing culturally safe care”
25
Storytelling/conversational
method
• Honours oral tradition
26
• Participants share their perspective through telling their story
• Relational process with protocol stemming from tribal knowledge
26
• Example of use: Kovach used storytelling to examine “the challenges facing Indigenous doctoral researchers of
engaging Indigenous knowledges in their research methodology”
26
Sharing circle
• Comparable to focus groups
24
• Participants, including facilitator, are all equal
24
• Healing method grounded in historical practices
24
• Example of use: Lavallée described using sharing circles to explore the “physical, mental, emotional, and
spiritual impacts of a physical activity program: a martial arts (tae kwon do) program offered at the Native
Canadian Centre of Toronto”
24
Photovoice
• Participants take photographs representing their lived experience regarding the research question
27
• Intention of photos is to elicit emotion from policy-makers viewing photographs, leading to tangible results
27
• Example of use: Gabel and colleagues used photovoice for their work, which “sought to explore one southern
Labrador Inuit community’s intergenerational relationships, with a focus on seniors’ perspectives and
understandings of health and well-being”
28
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help
ANALYSIS
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
E619
ent interpretations of the same issue may arise from the two
epistemologies.
30
However, the defensive response to “protect
accepted paradigms” fundamentally contradicts what research
is intended to do — discover new knowledge.
30
Which research methodologies have been used
successfully in Indigenous health research?
One commonly used methodology is community-based partici-
patory research. Motivated by the desires and interests of the
communities being studied, community-based participatory
research includes active involvement of those affected by the
research, in every step of the project.
5
Employing a partnership
approach shifts the research toward priorities that are practically
meaningful to the community, with increased social and contex-
tual validity.
31
Whereas a partnership approach may demand
deeper reflection, accountability and effort, it results in research
with a more substantial positive social influence.
31,32
When used with Indigenous communities, community-based
participatory research is about restoring power and control, and
indigenizing the research process. Indigenizing can be seen as an
approach that not only draws upon existing structures, but privi-
leges and validates Indigenous narratives and systems.
7
When
Indigenous health research involves non-Indigenous researchers
and Western methodologies, there are inherent power relation-
ships derived from colonization that must be acknowledged.
33
Where research decisions are taken without the meaningful par-
ticipation of Indigenous researchers, organizations, traditional
knowledge holders and communities, there is risk of harm
through issues such as misrepresentation or conducting research
in a disrespectful way.
5
Furthermore, engagement must consider
overburden of communities and research fatigue, which threat-
ens effective involvement and inhibits community control.
33,34
The design and methods of a 2009 qualitative study investi-
gating storytelling as a research method to understand the Inuit
experience of living with diabetes offers an example of meaning-
ful community engagement.
35
The research team held commun-
ity brainstorming sessions and had a community steering com-
mittee that assisted with grant proposals, survey tool appraisal,
logistic guidance, hiring local assistants, reviewing results, trans-
lation services and directing community knowledge translation
efforts.
35
Working with appropriate leadership groups, this proj-
ect incorporated methods more culturally appropriate for the
Inuit community than traditional interviews.
35
The community
was able to benefit not just from the results of a research project,
but also from the research process itself. Data collection meth-
ods such as photovoice, symbol-based reflection, sharing circles
and storytelling have also been used successfully in qualitative
studies, as outlined in Table 1.
29
Indigenous methods have been used within Western methodolo-
gies, such as grounded theory, or within Indigenous methodologies,
such as Kovach’s methodology based on Nêhiýaw Kiskêýihtamowin
(Plains Cree knowledge).
20,29
Qualitative tradition has been particu-
larly instrumental in integrating Indigenous and Western ways of
knowing, because many qualitative methodologies embrace the
existence of multiple truths and subjectivity of participant experi-
ence.
29
As Indigenous methods and methodologies become
accepted in the qualitative tradition, we encourage researchers to
look to their Indigenous colleagues for guidance regarding how
these may be integrated in quantitative research.
Indigenous Statis-
tics: A Quantitative Research Methodology
is the first book published
on Indigenous quantitative methodologies and provides one of few
leading examples.
19
Described therein is an approach to inclusion of
the Indigenous standpoint in quantitative methodologies and meth-
ods, including the example shown in Table 1.
What can be used to avoid “deficit discourses”
when undertaking Indigenous health research?
A deficit discourse “describes a mode of thinking that frames and
represents Aboriginal identity in a narrative of negativity, defi-
ciency and disempowerment.”
36
There is a danger, especially in
the field of health, of conflating the social problems Indigenous
people face as a result of social, economic and political marginal-
ization experienced since colonization, with cultural characteris-
tics of Indigenous Peoples.
37
Non-Indigenous health practitioners
may label social problems as “Indigenous problems” through fail-
ure to recognize the association between such problems and
recent Indigenous history.
7
Research that describes health deficits
without providing historical context promotes a deficit discourse.
Health researchers should be aware of this framing, how research
may perpetuate it and how it leads to stereotyping of Indigenous
Peoples in wider society.
Further than reframing deficit narratives in the context of colo-
nization and westernization, researchers could take a strength-
based approach that capitalizes on the capacities, abilities,
knowledge and talents that already exist in Indigenous communi-
ties.
37
For example, a 2016 qualitative photovoice study framed
the positive influence on health and well-being from strong inter-
generational relationships, providing a strength-based discourse
on their analysis of intergenerational influences on health.
28
How can non-Indigenous health researchers
act as allies to Indigenous Peoples?
Allyship is an active role or process focused on eliminating social
inequalities that allies benefit from, or extending these benefits to
marginalized people.
38
A non-Indigenous person cannot be an
expert on Indigenous issues, and cannot speak for Indigenous Peo-
ples, but can strive to be an ally.
39
However, only Indigenous people
can determine whom they consider an ally. Allyship requires a will-
ingness to make mistakes and to be uncomfortable, as well as an
ability to step aside and allow Indigenous people to lead.
39
In health research, Indigenous allyship includes working to
eliminate barriers to Indigenous scholars. Examples of this
include using positions of power to pressure prominent journals
to accept Indigenous methodologies as valuable, or supporting
Indigenous scholars to take leadership positions in research proj-
ects. Allies should also develop meaningful relationships with
Indigenous people and communities, ensuring a sense of
accountability on the part of the researcher to their participants
and communities unto which the research reflects.
38,40
Meaningful
ANALYSIS
E620
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
relationships are based on trust, time, personal risks, interaction,
reciprocity and open-minded listening.
39,41
Despite the competi-
tive nature of academia with regard to authorship positions,
academic appointments and funding, allyship also often means
taking a supportive rather than leading role in projects and
publications.
38
Allyship can be thought of as a reflexive process.
38
In the qualita-
tive tradition, reflexivity, defined as thoughtful self-awareness, is a
tool that contributes to the trustworthiness and integrity of some
methodologies.
42
Being a reflexive non-Indigenous researcher may
mean making a conscious effort to transcend one’s worldview and
accepting that there are truths different from one’s own. Reflexivity
requires a constant questioning of one’s beliefs, assumptions and
motivations, and consideration of how these affect the research.
42
Allyship has been described as a process, “as allyship requires one
to constantly cast a critical eye on themselves.”
38
A 2016 study informing Inuit community-based HIV and sex-
ually transmitted infection prevention and sexual health promo-
tion programming is one example of successful allyship in
research.
43
Here, the author employed Indigenous methodologies
and methods, drawing upon Inuit Qaujimajatuqangit (Inuit world-
view), postcolonial theory, community-based participatory
research principles, and a two-eyed seeing framework (Table 1).
42
High rates of sexually transmitted infections are identified in the
article but contextualized within colonization and westerniza-
tion.
43
The investigator identified and positioned her role in the
community, used an advisory committee, and received funding
from the Kugluktuk Hamlet Council, ethics approval from a Uni-
versity Ethics Review Board and a Nunavut research licence — all
indicating support from key actors.
43
An Indigenous storytelling
method was employed for data collection, with the understand-
ing that “Inuit women are experts in their own lives.”
43
Conclusion
We’ve explored some concepts of particular importance when
engaging in Indigenous health research, particularly from the
position of a non-Indigenous health researcher, to help research-
ers understand the historical and present context of this field.
Engaging Indigenous worldview and values, specific to the
group(s) one hopes to collaborate with, is critical to producing
research with meaningful findings from participant perspective.
Research with Indigenous people and communities demands
thorough and continuous reflection, as well as accountability to
participants. Table 2 outlines suggestions for researchers hoping
to participate in constructive Indigenous health research.
References
1.
Saini M.
A systematic review of western and aboriginal research designs: assess-
ing cross-validation to explore compatibility and convergence
. Prince George
(BC): National Collaborating Centre for Aboriginal Health; 2012:1-24.
2.
Di Pietro NC, Illes J. Disparities in Canadian indigenous health research on
neurodevelopmental disorders.
J Dev Behav Pediatr
2014;35:74-81.
3.
Mosby I. Administering colonial science: nutrition research and human biomedical
experimentation in aboriginal communities and residential schools, 1942–1952.
Hist Soc Soc Hist
2013;46:145-72.
4.
Campbell TD. A clash of paradigms? Western and indigenous views on health
research involving Aboriginal peoples.
Nurse Res
2014;21:39-43.
5.
Research involving the First Nations, Inuit and Métis peoples of Canada. In:
Tri-
Council policy statement: ethical conduct for research involving humans.
Ottawa:
Secretariat on Responsible Conduct of Research; 2014. Available: www.pre.ethics.
gc.ca/pdf/eng/tcps2-2014/TCPS_2_FINAL_Web.pdf (accessed 2017 May 15).
6.
Ethics framework. In:
Tri-Council policy statement: ethical conduct for research
involving humans
. Ottawa: Secretariat on Responsible Conduct of Research;
2014. Available: http://pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2
-eptc2/chapter1-chapitre1 (accessed 2018 Apr. 7).
7.
Smith LT.
Decolonizing methodologies: research and Indigenous people
. 1st ed.
London (UK): Zed Books; 1999:1-215.
8.
Lux M. Perfect subjects: race, tuberculosis, and the Qu’Appelle BCG vaccine
trial.
Can Bull Med Hist
1998;15:277-95.
9.
Volume 5: Renewal: a twenty-year commitment. Report of the Royal Commission
on Aboriginal Peoples
. Appendix E: Ethical guidelines for research. Ottawa:
Canada Communication Group — Publishing; 1996. Available: http://data2.
archives.ca/e/e448/e011188230-05.pdf (accessed 2017 Nov. 24).
10.
The First Nations Principles of OCAP. Akwesasne (ON): First Nations Information
Governance Centre. Available: http://fnigc.ca/ocapr.html
(accessed 2018 Mar. 15).
11.
First Nations ethics guide on research and Aboriginal traditional knowledge
.
Ottawa: Assembly of First Nations: 2009. Available: www.afn.ca/uploads/files/
fn_ethics_guide_on_research_and_atk.pdf (accessed 2018 Mar. 15).
Table 2: Considerations for successful engagement in
Indigenous health research
Area of
consideration
Suggestions
Historical context
Develop relationships, read, and attend talks
or conferences to learn about the history of
Indigenous health research.
Present-day context
Meaningfully engage Indigenous scholars,
organizations or communities in every stage
of the project.
Ensure research is respectful to, desired by
and beneficial for the community involved
from their perspective.
Ethical guidelines
and protocols
Review ethical guidelines that could inform
the research; appropriate guidelines will vary
based on the community.
Endeavour to learn more about the
participants’ comfort levels, priorities and
cultural protocols.
Indigenous methods
and methodologies
Evaluate, with Indigenous team members,
what Indigenous methods, methodologies
may be appropriate for the project if desired
by Indigenous stakeholders.
Community-based
research
Consider in what tangible ways the research
project could restore power and control to
Indigenous Peoples.
Determine how the Indigenous voice will be
represented, recognizing Indigenous people
as experts on their own lives.
Deficit- versus
strength-based
research
Assess whether the research has the potential
to stigmatize the community of interest and,
if so, how this can be avoided.
Look for ways to highlight or acknowledge
strengths, talents and skills of the community
of interest in the research.
Research allyship
Develop relationships with Indigenous
people to which you are accountable.
Consider who will be benefitting the most
from the research.
ANALYSIS
CMAJ
|
MAY 22, 2018
|
VOLUME 190
|
ISSUE 20
E621
12.
First Nations regional longitudinal health survey (RHS): code of research ethics
.
Ottawa: First Nations Information Governance Centre; 1997 (revised 2007 Feb.
22). Available: http://fnigc.ca/sites/default/files/ENpdf/RHS_General/rhs-code
-of-research-ethics-2007.pdf (accessed 2018 Mar. 18).
13.
CIHR guidelines for health research involving aboriginal people (2007–2010).
Ottawa: Canadian Institutes of Health Research; 2007. Available: www.cihr
-irsc.gc.ca/e/29134.html (accessed 2017 Nov. 24).
14.
National Inuit Strategy on Research. Ottawa: Inuit Tapiriit Kanatami; 2018.
Available: https://itk.ca/national-strategy-on-research (accessed 2018 Apr. 10).
15.
Williams RJ, Odaibo FS, McGee JM. Incidence of fetal alcohol syndrome in
northeastern Manitoba.
Can J Public Health
1999;90:192-4.
16.
Di Pietro NC, Illes J. Closing gaps: strength-based approaches to research with
Aboriginal children with neurodevelopmental disorders.
Neuroethics
2016;9:
243-52.
17.
Baydala A, Placsko C, Hampton M, et al. A narrative of research with, by, and
for Aboriginal peoples.
Pimatziwin
2006;4:47-67.
18.
Castellano MB. Ethics of Aboriginal research.
J Aborig Health
2004;1:98-114.
19.
Walter M, Andersen C.
Indigenous statistics: a quantitative research methodology
.
1st ed. Routledge; 2013:1-159.
20.
Kovach M.
Indigenous methodologies: characteristics, conversations, and contexts
.
Reprint ed. Toronto: University of Toronto Press; 2010:1-216.
21.
Iwama M, Marshall M, Marshall A, et al. Two-eyed seeing and the language of
healing in community-based research.
Can J Native Educ
2009;32:3-23.
22.
Marsh TN, Cote-Meek S, Toulouse P, et al. The application of two-eyed seeing
decolonizing methodology in qualitative and quantitative research for the
treatment of intergenerational trauma and substance use disorders.
Int J Qual
Methods
2015;14:1-13.
23.
Absolon KE.
Kaandossiwin: how we come to know.
Black Point (NS): Fernwood
Publishing; 2011:1-175.
24.
Lavallée LF. Practical application of an Indigenous research framework and
two qualitative Indigenous research methods: sharing circles and Anishnaabe
symbol-based reflection.
Int J Qual Methods
2009;8:21-40.
25.
Carter C, Lapum J, Lavallée L, et al. Urban First Nations men: narratives of positive
identity and implications for culturally safe care.
J Transcult Nurs
2016 July 15
[Epub ahead of print]. doi:10.1177/1043659616659348.
26.
Kovach M. Conversational method in Indigenous research.
First Peoples Child
Family Rev
2010;5:40-8.
27.
Wang C, Burris MA. Empowerment through photo novella: portraits of partici-
pation.
Health Educ Q
1994;21:171-86.
28.
Gabel C, Pace J, Ryan C. Using photovoice to understand intergenerational
influences on health and well-being in a southern Labrador Inuit community.
Int J Indig Health
2016;11:75-91.
29.
Wright AL, Wahoush O, Ballantyne M, et al. Qualitative health research involving
Indigenous peoples: culturally appropriate data collection methods.
Qual Rep
2016;21:2230-45.
30.
Witt N. What if indigenous knowledge contradicts accepted scientific findings?
The hidden agenda: respect, caring and passion towards aboriginal research in
the context of applying western academic rules.
Educ Res Rev
2007;2:225-35.
31.
Goodman N, Bird K, Gabel C. Towards a more collaborative political science: a
partnership approach.
Can J Polit Sci
2017;50:201-18.
32.
Vogel L. The new ethics of Aboriginal health research.
CMAJ
2015;187:316-7.
33.
Brunger F, Wall D. “What do they really mean by partnerships?” Questioning the
unquestionable good in ethics guidelines promoting community engagement
in Indigenous health research.
Qual Health Res
2016 May 12 [Epub ahead of
print]. doi:10.1177/1049732316649158.
34.
Brunger F, Russell T. Risk and representation in research ethics: the NunatuKavut
experience.
J Empir Res Hum Res Ethics
2015;10:368-79.
35.
Bird S, Wiles JL, Okalik L, et al. Methodological consideration of story telling in
qualitative research involving Indigenous peoples.
Glob Health Promot
2009;
16:16-26.
36.
Aboriginal culture is not a problem. The way we talk about it is.
The Guardian
[London (UK)] 2015 May 15. Available: www.theguardian.com/commentisfree
/2015/may/15/aboriginal-culture-is-not-a-problem-the-way-we-talk-about-it-is
(accessed 2017 May 15).
37.
Browne AJ. Discourses influencing nurses’ perceptions of First Nations
patients.
Can J Nurs Res
2009;41:166-91.
38.
Smith J, Puckett C, Simon W.
Indigenous allyship: an overview.
Waterloo and
Brantford (ON): Office of Aboriginal Initiatives, Wilfrid Laurier University;
2015:1-37. Available: http://beta.fpic.info/media/library/resources/indigenous
-allyship-overview/Indigenous_Allyship_Toolkit.pdf (accessed 2017 May 15).
39.
Aveling N. ‘Don’t talk about what you don’t know’: on (not) conducting
research with/in Indigenous contexts.
Crit Stud Educ
2013;54:203-14.
40.
Morton Ninomiya ME, Pollock NJ. Reconciling community-based Indigenous
research and academic practices: knowing principles is not always enough.
Soc Sci Med
2017;172:28-36.
41.
Ball J, Janyst P. Enacting research ethics in partnerships with Indigenous com-
munities in Canada: “Do it in a good way.”
J Empir Res Hum Res Ethics
2008;3:
33-51.
42.
Finlay L. “Outing” the researcher: the provenance, process, and practice of
reflexivity.
Qual Health Res
2002;12:531-45.
43.
Rand JR. Inuit women’s stories of strength: informing Inuit community-based
HIV and STI prevention and sexual health promotion programming.
Int J Cir-
cumpolar Health
2016;75:32135.
Competing interests:
None declared.
This article has been peer reviewed.
Affiliations:
Departments of Health Research
Methods, Evidence, and Impact (Hyett) and
Pediatrics (Marjerrison), McMaster University;
McMaster Children’s Hospital (Marjerrison);
McMaster Indigenous Research Institute and
Faculty of Social Sciences (Gabel), McMaster
University, Hamilton, Ont.
Contributors:
All of the authors contributed to
the design and conception of the work, as well
as the acquisition, analysis and interpretation
of data. Sarah Hyett drafted the manuscript,
which Stacey Marjerrison and Chelsea Gabel
revised for important intellectual content.
Stacey Marjerrison was the author responsible
for correspondence with the journal for revi-
sions and administrative responsibilities.
Chelsea Gabel is the designated corresponding
author for the purposes of queries from the
public with regard to content and concept.
All
of the authors approved the final version to be
published and agreed to be accountable for all
aspects of the work.
Funding:
There was no funding used specifically
for this work. Chelsea Gabel’s work is supported
by a Canada Research Chair in Indigenous Well-
Being, Community, Engagement and Innovation.
Disclaimer:
Sarah Hyett is a novice health
researcher and a non-Indigenous settler. Stacey
Marjerrison is a non-Indigenous physician
researcher. As such, these authors are not
experts on Indigenous perspectives of health,
and do not presume to speak for Indigenous
Peoples or communities, but aim to provide
guidance to other non-Indigenous health pro-
fessionals engaged in Indigenous health
research. Chelsea Gabel is Métis from Rivers,
Manitoba. Chelsea Gabel is the Indigenous rep-
resentative of the Canadian Institutes of Health
Research (CIHR) Standing Committee on Ethics,
which provides high-level strategic advice on
the ethical, legal and sociocultural dimensions
of CIHR’s mandate.
Correspondence to:
Chelsea Gabel,
gabelc@mcmaster.ca
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help