Community-Based Participatory Research
in American Indian and Alaska Native
Communities
Puneet Chawla Sahota, Ph.D.
June 2010
Introduction
Community-based participatory research (CBPR) is an approach in which communities are
treated as equal partners at all stages of a research project.1 This paper discusses the usefulness
of CBPR for American Indian/Alaska Native (AI/AN) communities and presents several case
studies of CBPR in tribal communities. CBPR prioritizes the community in research design: the
community is involved in developing research questions and methods; collecting data; analyzing
data; and writing publications and disseminating data. CBPR is not simply a research method—it
is a philosophy about how research should be conducted so that community needs are prioritized.
There is a spectrum of approaches in CBPR, and there is no one way to conduct CBPR projects.
Similarly, the definition of “success” will vary by CBPR project and will depend on the local
context of the community involved as well as the priorities of the research team. The variety of
approaches possible in CBPR projects is reflected in the case studies presented in this paper. The
common link between diverse CBPR studies is their commitment to community needs and
priorities. One outcome that follows from some CBPR projects is that communities and
researchers work together to implement study results to improve community programs or
services.2 There is a growing emphasis in research overall, not just among CBPR researchers, on
the translation of research study findings into concrete strategies for improving practices,
programs, and service provision.3
CBPR evolved from new approaches in education programs and international health projects in
the 1960s and 1970s as well as simultaneous political movements calling for social justice.4
These changes led to more active involvement of community members in academic studies and
the emergence of CBPR as a distinct type of research. Other terms used to describe research
approaches similar to CBPR include “participatory research,” “action research,” and
“emancipatory research”.4 Barbara Israel and colleagues, who have published extensively on the
subject of CBPR, have defined key principles for CBPR:1
1.
2.
3.
4.
5.
CBPR recognizes “community” as a unit of identity.
CBPR builds on strengths and resources within the community.
CBPR facilitates collaborative, equitable partnership in all phases of the research.
CBPR promotes co-learning and capacity building among all partners.
CBPR integrates and achieves a balance between research and action for the mutual
benefit of all partners.
1
Israel B., Schulz A., and Parker E. 2003. Critical Issues in Developing and Following Community Based
Participatory Research Principles. In Community Based Participatory Research in Health, Ed. M. Minkler and N.
Wallerstein. Pp. 53-76. San Francisco: Jossey-Bass.
2
Macaulay A., Commanda L., Freeman W., Gibson N., McCabe M., Robbins C., and Twohig P. for the North
American Primary Care Research Group. 1999. Participatory Research Maximises Community and Lay
Involvement. British Medical Journal, 319, 774-778.
3
For example, federal agencies such as the National Institutes of Health have made “translational research” a key
focus of grant funding announcements. For more information on NIH’s emphasis on translational research, see:
http://nihroadmap.nih.gov/clinicalresearch/overview-translational.asp.
4
Wallerstein, N., and Duran, B. 2003. The Conceptual, Historical, and Practice Roots of Community Based
Participatory Research and Related Participatory Traditions. In Community Based Participatory Research in Health,
Ed. M. Minkler and N. Wallerstein. Pp. 27-52. San Francisco: Jossey-Bass.
1
6. CBPR emphasizes local relevance of public health problems and ecological
perspectives that recognize and attend to the multiple determinants of health and
disease.
7. CBPR involves systems development through a cyclical and iterative process that
includes conducting a research project and applying its findings to improving
community life.
8. CBPR disseminates findings and knowledge gained to all partners and involves all
partners in the dissemination process.
9. CBPR involves a long-term process and commitment.
These principles broadly define the ideal characteristics of CBPR. The specific approach to
community-researcher partnership will vary widely depending on the local context; there is no
model that fits all cases. In addition, Israel and colleagues note that “participation in all phases of
the research does not mean that everyone is involved in the same way in all activities.”1 AI/AN
communities have much expertise that they bring as partners in research projects. However,
communities may also have limited time and resources to devote to research projects. As a result,
they may not wish to be intimately involved in all of the mechanics of research projects (e.g.,
data analysis procedures). Even if they have limited time, communities can still have substantial
input into all phases of a study. For example, a community might wish to review the results of
data analysis and comment on them before any research reports are written, even if community
members do not directly analyze data.
Jon Tilburt, who has conducted cancer control research with AI/AN communities, suggests that
CBPR is “an aspirational ideal” because many research studies have full community partnership
as a goal, but in practice, the meaning of community partnership varies by project.5 Tilburt
proposes the concept of “relationship centered research” as among the spectrum of approaches
falling under the rubric of CBPR. He defines “relationship centered research” as an approach
which values the relationships between communities and researchers; frequent and clear
communication between communities and researchers; AI/AN communities’ experiences and
knowledge, and researchers’ self-awareness. In developing this concept, Tilburt was influenced
by the movement towards “relationship centered care” in health care more broadly.6 Tilburt and
Wes Petersen at the Mayo Clinic are co-Principal Investigators on an ongoing research study
entitled “Patterns of Care for AI/AN Men with Elevated Prostate Specific Antigen (PSA).”5 A
diagram of their process for engaging in collaborations with AI/AN communities is included in
Appendix A. Tilburt, Petersen, and colleagues have also been careful to accommodate diversity
in AI/AN community needs as part of their study design. In this study, which includes multiple
AI/AN communities, participating communities have a choice about some of the data elements
(e.g., birth year vs. date of birth) that are collected and the research methods (e.g., surveys or
interviews) that will be used with their members.5
5
Tilburt, Jon. 2009. Learning by Listening: A Newcomer’s Reflections on Initiating Cancer Control Research in
Indian Country. Oral Presentation. Native American Interest Group Lecture Series. Mayo Clinic, Rochester,
Minnesota. April 6.
6
Tresolini, Carol and the Pew Fetzer Task Force. 1994. Health Professions Education and Relationship-Centered
Care. San Francisco, CA: Pew Health Professions Commission.
http://www.futurehealth.ucsf.edu/pdf_files/RelationshipCentered.pdf
2
In CBPR, communities and researchers should negotiate the terms of their partnership up-front
and determine what sharing of responsibilities is equitable for all while still providing for
maximum community participation. Macaulay and colleagues at the North American Primary
Care Research Group – many of whom are AI/AN – recommend that communities and
researchers draft agreements for CBPR projects that address the following issues:2
1. Research goals and objectives
2. Methods and duration of the project
3. Terms of the community-researcher partnership
4. Degree and types of confidentiality
5. Strategy and content of the evaluation
6. Where the data are filed, current interpretation of data, and future control and use of
data and human biological material
7. Methods of resolving disagreements with the collaborators
8. Incorporation of new collaborators into the research team
9. Joint dissemination of results in lay and scientific terms to communities, clinicians,
administrators, scientists, and funding agencies
The actual terms of agreement on these issues will vary in each community-researcher
partnership, as AI/AN communities have diverse needs and priorities. Agreements between
communities and researchers should be able to be modified over time as CBPR projects evolve.2
Some communities may wish to change their level of involvement in CBPR projects over time.
CBPR is a broad framework which provides for this type of flexibility—ultimately, community
needs and priorities are paramount, including the need for less participation in a study at times.
As Nina Wallerstein and Bonnie Duran write, “[P]articipation should not be seen as a magic
bullet but as a complex and iterative process, which can change, grow, or diminish, based on the
unfolding of power relations and the historical and social context of the research project.”4 These
researchers, both of whom have worked closely with AI/AN communities, have written
extensively on CBPR and its theory and history. They view CBPR as the opposite of “helicopter
research” historically collected in Indian Country, with “the researcher flying in and taking
information without leaving anything in return.”4 This history of research, which was often not
beneficial to AI/AN communities and sometimes even harmed them, is an important reason that
CBPR is being increasingly used in Indian Country.
CBPR and Indian Country
The history of “helicopter” research in Indian Country, along with the broader history of AI/AN
communities, is one reason that many scholars argue CBPR is ideally suited to AI/AN
communities. Fisher and Ball discuss the historical trauma AI/ANs have experienced, from
warfare waged on communities by the U.S. government to federal government policies aimed at
“assimilating” AI/AN peoples.7,8 They argue that CBPR is best suited to addressing the health
7
Fisher P. and Ball T. 2003. Tribal Participatory Research: Mechanisms of a Collaborative Model. American Journal
of Community Psychology, 32, 207-216.
8
For more information on historical trauma, see: Duran E., Duran B., Brave Heart, M., and Yellow Horse-Davis, S.
1998. Healing the American Indian Soul Wound. In International Handbook of Multigenerational Legacies of
Trauma, Ed. Y. Danieli. Pp. 341-354. New York: Plenum. Also see: Brave Heart, M. & DeBruyn, L. 1998. The
3
impacts of this painful history. They write, “[C]ollaboration between researchers and AI/AN
tribes that acknowledge and work within this historical framework have been cited as having the
greatest likelihood producing lasting change.” Another reason CBPR fits well with AI/AN
communities is that it is consistent with tribal sovereignty and self-determination.7 This research
approach demands that tribal governments have full control over all aspects of the research
process and that community interests drive the research design. CBPR also supports tribal selfdetermination and capacity building because partnerships between communities and researchers
facilitate the implementation of research results to improve community programs and services.
Finally, a CBPR study design may also increase the likelihood that AI/AN community members
will participate in research. Timothy Noe and colleagues conducted a study of American Indian
college students’ perceptions of research design, presenting students with hypothetical vignettes
describing different kinds of research.9 This study showed that American Indian students were
more likely to participate in research studies which used CBPR principles, such as involving the
community in study development, addressing health problems of concern to the community, and
bringing funds into the community.
In addition to the general principles listed above, CBPR in Indian Country may have additional
characteristics that are specific to AI/AN communities. Fisher and Ball propose a model they
term “Tribal Participatory Research,” (TPR) which draws on CBPR approaches, but also has
some components that are specific to Indian Country.7 For example, because tribes are sovereign
nations, tribal governmental oversight and approval of research is required in addition to the
informed consent of individual research participants. In TPR, it is important that research is
regulated specifically by tribal governments, not just by tribal service providers or triballyaffiliated facilities (e.g., hospitals). Tribal approval and oversight can come in many forms, such
as a letter of approval from a tribal government, tribal council resolutions for research projects,
the formation of a tribal committee which makes decisions about research procedures, or a tribal
research code which legally regulates research. There may also be other ways for tribal
communities to provide approval and oversight of research projects, and the mechanism for tribal
research regulation will depend on the local community context.10 Fisher and Ball’s TPR
approach also calls for the use of a liaison, who is preferably an AI/AN individual who is not
part of the research team or the tribal community, to facilitate and mediate meetings between
research staff and tribal oversight committees.7
Tribal communities that have participated in the federally-funded Circles of Care initiative also
found that there were aspects of CBPR specific to AI/AN communities during their project,
which is aimed at developing “a culturally appropriate mental health service model for AI/AN
American Indian holocaust: Healing historical unresolved grief. American Indian and Alaska Native Mental Health
Research, 8, 60-82.
9
Noe T., Manson S., Croy C., McGough H., Henderson J., and Buchwald DS. 2007. The Influence of CommunityBased Participatory Research Principles on the Likelihood of Participation in Health Research in American Indian
Communities. Ethnicity and Disease, 17, S6-S14.
10
Sahota, P. Research Regulation in American Indian/Alaska Native Communties: Policy and Practice
Considerations. National Congress of American Indians Policy Research Center. http://www.ncaiprc.org/researchregulation-papers.
4
children with serious emotional disturbances.”11 This project, funded by the Substance Abuse
and Mental Health Services Administration, directly funds tribal communities to pursue their
model development activities and hire their own program evaluators. Circles of Care
communities receive technical assistance regarding their evaluation activities from the Centers
for American Indian and Alaska Native Health at the University of Colorado Denver and
participate in a “cross-site” evaluation of their activities (also facilitated by the University of
Colorado). Members of teams from the first nine communities funded in the first cycle of Circles
of Care worked with faculty from the University of Colorado to explore the implications of the
work in their communities. These teams compared the principles which emerged from their
project12,13 with the nine general CBPR principles proposed by Israel et al.1 They found that the
general CBPR principles seemed to apply well in Circles of Care. In addition, they suggested
that in projects which include multiple AI/AN communities, it may be important to consider the
diversity in traditions and cultures between communities, as well as the differences in
reservation, rural, and urban communities. They also recommend that AI/AN values (e.g.,
establishment of trust, reciprocity, inclusion, bravery) should drive the process of CBPR projects.
Finally, they note that spirituality is likely to play an important role in the CBPR process for
AI/AN communities. For example, Circles of Care project members write, “Meetings and
gatherings began and ended with prayer, singing with the drum, circle dancing and asking the
Creator for guidance.”12
Thus, CBPR as a general approach is well-suited to AI/AN communities, and there may also be
specific considerations unique to Indian Country. Databases of CBPR projects can be searched to
find information specifically about studies being conducted in AI/AN communities. For
example, NIH-funded CBPR studies are included in the Research Portfolio Online Reporting
Tools Expenditures & Results (RePORTER) database.14 In the following sections, several case
studies of past or ongoing CBPR research conducted in AI/AN communities will be discussed.
These case studies include research projects on diabetes prevention, cancer screening, adolescent
mental health, archaeology, and natural resource management. Some of these research projects
were initiated by communities, while others were started by researchers. All of these case studies
involve an equitable partnership between researchers and communities, and provide insight into
the challenges and rewards of CBPR in AI/AN communities.
CASE STUDIES
I. Diabetes Prevention in Schools
11
Freeman B., Iron Cloud-Two Dogs E., Novins D., and LeMaster P. 2004. Contextual Issues for Strategic Planning
and Evaluation of Systems of Care for American Indian and Alaska Native Communities: An Introduction to Circles
of Care. American Indian and Alaska Native Mental Health Research, 11, 1-29.
12
Jumper Thurman P., Allen J., and Deters P. 2004. The Circles of Care Evaluation: Doing Participatory Evaluation
with American Indian and Alaska Native Communities. American Indian and Alaska Native Mental Health
Research, 11, 139-154.
13
Novins D., Freeman B., Jumper Thurman P., Iron Cloud-Two Dogs E., Allen J., LeMaster P., and Deters P. 2006.
Principles for Participatory Research with American Indian and Alaska Native Communities: Lessons from Circles
of Care. Poster Presentation. Indigenous Suicide Prevention Research and Programs in Canada and the United
States: Setting a Collaborative Agenda, Albuquerque, NM, Feb. 7-9.
14
The RePORTER database contains NIH-funded studies, and can be searched by terms such as “community based
participatory research .” This database can be accessed at: http://projectreporter.nih.gov/reporter.cfm.
5
The Kahnawake Schools Diabetes Prevention Project (KSDPP) is one of the oldest and most
well-known CBPR studies to be conducted with Native communities. The information and
quotes included below were obtained from a book chapter by the research team which describes
the process of establishing the project,15 published journal articles about the KSDPP, and
personal communication with Ann Macaulay, who was the original Scientific Director and is
now one of the co-investigators. Further information about this study can also be found on the
KSDPP website (www.ksdpp.org).
The KSDPP is ongoing in the Kanien’kehá:ka (Mohawk) community of Kahnawake, which is
located near Montreal, Canada. This project integrates an intervention and research component,
and the intervention team as well as research assistants for the evaluation team are based in the
community, although there are also academic researchers who work with the project from
outside the community.15 The impetus for the KSDPP was community members’ reactions to
research reports from health care providers in the community, including a Kanien’kehá:ka
physician, showing high prevalences of type II diabetes and its complications. In 1987, these
physicians began presenting their results to different groups in the community, including elders
and community leaders in health, who then asked that a program be developed for diabetes
prevention. Community members specifically asked that any prevention efforts target schoolaged children. The KSDPP was founded in 1994 as a result of these early discussions, and
became a partnership between the community, health care providers, and academic researchers.15
Importantly, this project was first conceived of and initiated by the community. In explaining the
project’s history, members of the project team listed three main factors that provided a strong
foundation for the KSDPP: “First, community-level solutions to this health problem were not
imposed nor suggested” by health care providers and researchers. Rather, community members
themselves devised a plan for addressing the growing prevalence of diabetes. “Secondly, the
credibility of the messengers influenced the reception of the message [about the high prevalence
of diabetes] in Kahnawake. Credibility was facilitated by one messenger being Kanien’kehá:ka,
both having occupational status [i.e.] ‘letters behind your name,’ espousing Aboriginal values,
and caring for community wellness.” Finally, “the message raised consciousness around an
emotional issue. The elders spoke openly about being fixed in their ways of eating…They,
however, wished for a different future, one free of diabetes, for future generations.”15
The project that was subsequently developed combined scientific data collection/evaluation with
an intervention designed to prevent type II diabetes through educational programs and activities
in the community’s elementary schools. Obtaining funding for the project was difficult and took
time: there were seven years of discussions and several grant applications which were not funded
until 1994, when a national research grant funded the project. The project team notes that in
obtaining funding, “academic researchers were absolutely essential as they contributed their
academic expertise to developing the initial grant proposal to secure national [public] research
funding.” All grant proposals were reviewed by the community, and their perspectives along
15
Macaulay A., Cargo M., Bisset S., Delormier T., Lévesque L. Potvin L., McComber A. 2006. Community
Empowerment for the Primary Prevention of Type 2 Diabetes: Kanien’kehá:ka (Mohawk) Ways for the Kahnawake
School Diabetes Prevention Project. In Indigenous Peoples and Diabetes: Community Empowerment and Wellness,
Ed. M. Ferreira and G. Lang. Pp. 407-433. Durham: Carolina Academic Press.
6
with those of the researchers were integrated in final grant submissions. Grant funding has been a
challenge throughout the project. At various times during the project, it has been funded by
national/public grant sources, private foundations, and the community. The first national research
grant lasted for three years, after which community organizations continued funding for one
year. During that year, however, only the intervention component and two community staff
positions could be funded, and so the evaluation component of the project was temporarily
discontinued. Private foundation grants then provided funding for the next two years for both the
intervention and evaluation components. Finally, the research team then applied for and received
five years of funding (2001-2006) from a national/public research grant provided to innovative
university-community partnerships.15
This final grant, which was funded by the Canadian Institutes of Health Research (CIHR,
equivalent to the National Institutes of Health in the U.S.), provided the research team $3 million
and considerable flexibility in how those funds were used.16 Although the CIHR would not
directly give funding to the community, the university receiving the grant agreed to route the
grant funds to the community. The research team members who were based in the community
made decisions along with the academic researchers about how the grant money would be used.
In 2010, the KSDPP intervention component is being funded through government programs, and
the evaluation component has again been discontinued because of lack of grant funding.16 The
KSDPP research team is now preparing to apply for new grant applications to fund the
evaluation and research component. The KSDPP has remarkably continued for 15 years, in spite
of the challenges of finding long-term funding for the project.16 During that time, the research
team and community have been creative in locating funding sources. However, they point out
that “this history [of discontinuous grant funding] certainly documents the precariousness of
long-term community based research projects needed to accomplish lifestyle changes, and the
importance of promoting early capacity building and sustainability.”15 Macaulay noted that one
of the challenges of long-term CBPR projects and health promotion efforts is maintaining them
even with inconsistent funding. As a researcher, she said that it is important to her to fulfill the
commitment she has made to communities with which she works and that she strives to meet
their expectations even during times of limited grant funding.16
When the project began in 1994, one of the first steps was the formation of the KSDPP
Community Advisory Board (CAB). All of the board’s positions are voluntary, and it includes up
to 20 members from different segments of the community, such as health and social services
organizations, education, environmental programs, the cultural center, spiritual groups, the youth
center, and community members at large.17 One of the first activities of the CAB was to work
with researchers to formulate a code of ethics that would guide the project.18 The code of ethics
serves as a formal agreement between the community and researchers. It was originally drafted
in 1994 when the KSDPP began, and then was revised by the KSDPP team in 2007. The KSDPP
Code of Ethics has served as a model for other Aboriginal and AI/AN communities. The code is
very detailed and contains ethical guidelines for all parties to follow; the obligations and rights of
the community and academic researchers; requirements of new researchers wishing to join the
16
Macaulay, A. Personal communication with Puneet Sahota, March 25, 2009.
For more information about the CAB, see: http://www.ksdpp.org/elder/cab.html.
18
The KSDPP Code of Ethics can be accessed at:
http://www.ksdpp.org/elder/ksdpp_code_of_research_ethics2007.pdf.
17
7
project; and procedures for community oversight of the project in all stages, including a step-bystep protocol for community review of research publications and presentations. The code of
ethics stipulates that all data are owned by the community, although the academic researchers
may have copies of data to use in preparing publications. Finally, it states that data will be
returned to the community when research projects are over and that all data must be presented to
the community before it is published. The academic researchers involved with the KSDPP found
that their presentations of study results to community members and subsequent discussions of
those results enhanced researchers’ interpretations of the data and provided community members
with helpful information about diabetes prevention. 19
The KSDPP CAB meets monthly and is tasked with: promoting the project’s objectives
throughout the community, serving as role models for healthy lifestyles, advising the research
team about the design and implementation of the study, ensuring the study is culturally sensitive,
participating in data interpretation, reviewing publications, and disseminating the study findings
both in the community and to research audiences.15 In addition, the CAB interviews candidates
for jobs with the KSDPP, and new students or researchers’ projects must be approved by the
CAB. If the CAB and researchers disagree on the interpretation of a set of data, then discussions
are needed to come to consensus. The research team’s past grant applications have not
specifically included budget items for CAB activities. However, from 2001-2006, the KSDPP
research team did use funds from their national grant for CAB activities because that grant’s
budget was flexible. Since there was not always external funding for meals at CAB meetings, the
CAB members held potluck lunches which helped them practice cooking healthy meals. Future
grant applications will specifically include budget items for CAB activities.16
The KSDPP takes an ecological approach to prevention of diabetes, meaning that the
intervention focuses on the larger environment that impacts diabetes prevention.15 The project
has used multiple strategies for involving the community in diabetes prevention efforts. The
KSDPP first developed a health education curriculum in partnership with community schools
and the hospital. The curriculum was translated into Kanien’kehá:ka for the language immersion
school. There are ten lessons per year for grades 1 – 6 which include interactive learning
modules, games, food tasting, and crafts. There are sections both on nutrition and physical
fitness. The curriculum is holistic in that it focuses on overall wellness through healthy eating,
exercise, and incorporates traditional culture and values. The KSDPP also worked with the
community schools to enforce their health nutrition policy in schools, which banned sodas, snack
machines, and junk food. KSDPP is not limited to schools; interventions also involve the broader
community. Project staff point out that diabetes prevention in schools must be reinforced by
families providing support to their children. As a result, KSDPP partnered with the community
on broader efforts to facilitate healthy living, such as building a recreation path. The project staff
also regularly write articles in the local newspaper about healthy lifestyles and organize
community walks, other opportunities to be physically active, food demonstrations, and cooking
classes that discuss the links between mind, body, and spirit. One key principle of the KSDPP
was to build on existing strengths within the community by partnering with established
19
Macaulay A., Ing A., Salsberg J., McGregor A., Saad-Haddad C., Rice J., Montour L., and Gray-Donald, K. 2007.
Community-Based Participatory Research: Lessons from Sharing Results With the Community: Kahnawake Schools
Diabetes Prevention Project. Progress in Community Health Partnerships: Research, Education, and Action, 1.2,
143-152.
8
organizations to implement the diabetes prevention intervention. This enabled the project to
capitalize on resources that already existed in the community.
The KSDPP is now well-established and has become integrated into community life. Community
members involved in the study, including KSDPP staff and the CAB, truly feel they “own” the
project.20 Over the duration of the KSDPP, the incidence (rate of new cases) of diabetes in the
community has remained stable.21 In addition to the direct benefits the community has received
related to diabetes prevention programming, the KSDPP has also resulted in capacity building
and training for community members. For example, community members have used KSDPP data
in their Master’s and Ph.D. projects.16 Others who have been involved as project staff have been
able to build upon their professional experiences with KSDPP in their subsequent jobs.16 The
KSDPP team has also developed a training program for other Aboriginal communities seeking to
learn more about creating diabetes prevention programs.22 The KSDPP team is willing to present
this training to AI/AN communities in the U.S.23 In sum, the KSDPP is an excellent example of a
CBPR project that has been well-received both within the community of Kahnawake and in
academic research circles.
II. Cancer Screening
The Women and Wellness partnership was a CBPR project conducted in the 1990s by University
of Washington researchers and the Pacific Northwest Cancer Information Service at the Fred
Hutchinson Comprehensive Cancer Center in collaboration with the Yakama Indian Nation,
located in eastern Washington state. The project was part of a larger community capacity
building collaboration between these partners aimed at addressing issues related to cancer. The
information about the project that is provided here was obtained from published research articles
that were co-authored by researchers and staff from the community24,25 and personal
communication with June Strickland and Noel Chrisman.26,27 The Women and Wellness project
examined Yakama women’s perspectives on Papinolicaou (Pap) testing, which screens for
cervical cancer, and then designed interventions aimed at increasing awareness of and
participation in Pap screening. The study focused on culture as a factor in women’s experiences.
This project began when two respected elders died from cervical cancer in one year, and tribal
leaders directed Martha Yallup, the deputy director of Human Services for the Yakama Indian
20
Cargo M., Delormier T., Lévesque L., Horn-Miller K., McComber A., and Macaulay A. 2008. Can the Democratic
Ideal of Participatory Research be Achieved? An Inside Look at an Academic-Indigenous Community Partnership.
Health Education Research, 23, 904-914.
21
Horn O., Jacobs-Whyte H., Ing A., Bruegl A., Paradis G., and Macaulay A. 2007. Incidence and Prevalence of
Type 2 Diabetes in the First Nation Community of Kahnawá:ke, Quebec, Canada, 1986-2003. Canadian Journal of
Public Health, 98, 438-443.
22
Salsberg J., Louttit S., McComber A., Fiddler R., Naqshbandi M., Receveur O., Harris S., and Macaulay A. 2008.
Knowledge, Capacity, and Readiness. Translating Successful Experiences in Community-Based Participatory
Research for Health Promotion. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health, 5, 125150.
23
For more information about the KSDPP training program, call: (450) 635-4374 or write: KSDPP, Box 989,
Kahnawake, Quebec J0L 1B0 Canada.
24
Chrisman N., Strickland J., Powell K., Squeochs M., Yallup M. 1999. Community Partnership Research with the
Yakama Indian Nation. Human Organization 52, 134-141.
25
Strickland J., Chrisman N., Yallup M., Powell K., Squeochs M. 1996. Walking the Journey of Womanhood:
Yakama Indian Women and Papanicolaou (Pap) Test Screening. Public Health Nursing, 13, 141-150.
9
Nation, to find ways to address cervical cancer in the community. June Strickland, who was at
the Pacific Northwest Cancer Information Service, worked with Yakama Indian Nation to
establish a planning team for a CBPR project on cervical cancer screening. Strickland then
approached Noel Chrisman, who was faculty at the University of Washington, for help
conducting the project and obtaining funding for it. (Strickland later also became faculty at the
University of Washington).26 Notably, the need for the cervical cancer screening study was first
identified by the community.
The researchers first located an existing group within the community with which they could
collaborate on the project. The Cancer Committee was a group of health care providers and
community members that were associated with a health center jointly run by the Yakama Indian
Nation and the Indian Health Service (IHS). The committee was not very active prior to the
research study, but the researchers worked with the committee for several months before
submitting the grant application. In the process, the Cancer Committee became the central
avenue for community input into the study. The committee reviewed the initial project proposal
and supported its approval by the tribal council. It also hired three interviewers for the project,
who were Yakama women, and these interviewers became part of the study’s planning
committee.27 The researchers met with the committee regularly throughout each year during the
project, which lasted four years, in order to review the study’s progress and plan for next steps.
As individuals with extensive experience in the community, the Cancer Committee members
were able to validate the study’s findings when they were presented with those results. The
committee then assisted the researchers in developing interventions that were based on the data
gathered in the project. In addition to hiring interviewers from the community, the research study
hired Marian Squeochs, a Yakama social worker with a Masters in Public Health (MPH) degree.
She was a co-author on many of the study’s publications, served as an important liaison between
the study and the community, coordinated data collection, scheduled meetings of the Cancer
Committee, and collected information about the conduct of the study. Thus, the project not only
had an advisory board from the community, but also directly involved community members in
research activities.
The study started out with the aim of understanding “the influence of the woman’s sense of role
and culture in decision making about seeking a Pap test.”25 Instead of starting with any pre-set
assumptions or structures for intervention programs, the researchers chose to use the grounded
theory method. The use of this method was one of Strickland’s main contributions to the study.26
In grounded theory, the data collected in the study are used to generate hypotheses, theories, and
ideas for possible interventions, rather than beginning with any pre-formed ideas. This research
method is well-suited to CBPR in AI/AN communities, as it allows for maximum community
input into the development of any interventions. These interventions are thus tailored specifically
to the needs of the community because they are grounded in the perspectives of community
members who participate in the research project.
The community members hired as interviewers conducted 15 open-ended interviews with
Yakama women of diverse age groups and segments of the community. In one of their
publications, the research team noted that having local Yakama women conduct the interviews
26
27
Strickland, J. Personal communication with Puneet Sahota on April 1, 2009.
Chrisman, N. Personal communication with Puneet Sahota on April 4, 2009.
10
could have been helpful because they may have “avoided subjects that might have been offensive
to the participants, thus protecting their rights of privacy and tribal rights to topics restricted to
insiders.”24 Early interviews were taped, transcribed, and coded in detail for themes, and then
these emerging themes were more closely examined in later interviews. Strickland, who is
Echota Cherokee, observed community ceremonies to inform the project team’s work, although
no sacred ceremonies were recorded. Finally, the research team also conducted focus groups to
further validate the central themes that emerged in the interviews. Using multiple methods of
data collection allowed the research team to include diverse segments of the community (e.g.,
women at different points along the spectrum from “very traditional” to “more acculturated”)
and to confirm their central findings from different sources.25
The central paradigm that emerged in the study was “walking the journey of womanhood.”25
Community members conceptualized the life cycle of a woman as consisting of four stages:
“starting the journey,” “blooming,” “heading the household,” and “becoming an elder.” Elders
were viewed as having significant influence on women “starting the journey.” Women who were
in their childbearing years were most likely to seek out Pap tests, while those who were older
were least likely to do so because women in the community viewed the Pap test as related to
childbearing and sexual activity. Women perceived Pap tests as helpful in staying healthy, not
specifically as a tool to prevent cancer. Based on these findings, the researchers made the
following recommendations:25
1. Cervical cancer screening may best be addressed through a focus on ‘staying healthy’
rather than a focus on illness
2. Individuals are linked to each other and the larger community, and therefore,
messages must be aimed at supporting individuals to take care of themselves for the
community, not just for themselves as is often done in non-Indian communities
3. Messages must use both traditional and nontraditional approaches in teaching and
learning
4. Providers need to respect the broader Indian worldview and community efforts to
address healing through ceremonies
The researchers and the Cancer Committee then worked together to develop culturally-sensitive
interventions to increase awareness of the benefits of Pap tests. These interventions were
grounded in the data collected about women’s perspectives on Pap tests. The first intervention
was a day-long event, which included a focus group/talking circle in which community members
discussed their experiences with cancer, Pap tests, and their clinic. Presentations were then given
by representatives of local cancer organizations and clinic staff about cancer prevention,
screening, and treatment. The presentations specifically addressed some of the concerns raised
by women in the research interviews, such as the concern about having female health care
providers available to provide Pap tests. The day concluded with a feast and a giveaway.
Later in the project the researchers worked with Marian Squeochs and her cousin, another
Yakama woman, to develop the second intervention: a series of workshops combining health
education and tribal crafts for women. There were five workshops, each of which lasted six
hours. Cultural experts from the tribe taught the crafts, and health education was provided on
diet, menopause, and cancer screening. Finally, community health professionals who served on
11
the Cancer Committee initiated changes in health care service delivery because of the research
results. Rather than notifying women of abnormal Pap smear results by letter, they began
working with community health representatives and maternal child health outreach workers to
deliver this news personally to affected women. As a result, the rate for women attending clinic
visits for follow-up colposcopy examinations increased from 20% to 100%.24
The CBPR method used in this study helped create positive change for the community. It
enabled the community to make a change in health care service delivery that improved cancer
screening practices. Community members who were hired as part of the research team received
training in research methods, such as interviewing. The CBPR approach provided the researchers
with the opportunity to collect data in a broad, comprehensive manner from diverse segments of
the community and to validate the major themes from different sources. The time the researchers
spent getting to know the community and its culture also proved to be beneficial. The researchers
discovered that the best times for recruiting participants for the study were outside seasons when
ceremonies, hunting, and gathering activities occurred, and this knowledge impacted the
planning of research activities.
One of the challenges the research team faced was obtaining funding for the study. The study
was ultimately funded through a combination of intramural research grants from the university
along with tribal funding.26-28 The research project received two intramural research grants from
the university, for which Chrisman was the Principal Investigator. In their proposal for grant
funding for the first two years of the project, the research team proposed to study women’s
beliefs and practices about cervical cancer. In the grant application for the second phase of the
study, they affiliated their project with a larger grant in the School of Nursing at the University
of Washington, and proposed to design and implement the two interventions described above in
addition to collecting data. Much of the university grant funding went towards the salaries of the
interviewers who were hired for the study, transcribing interviews, travel expenses for the
research team, and incentives for study participants. The tribe allocated some funding for hiring
Marion Squeochs to manage the research effort, and the remainder of her salary was covered by
grant funding from the University of Washington. Members of the Cancer Committee were not
paid for their participation in planning and conducting the study.26, 27 Strickland pointed out that
flexible funding sources are important for CBPR, and that private funding sources, such as
intramural grants from universities, may be helpful. She also noted that researchers may need to
subsidize the cost of a study with their own personal incomes because “implementing CBPR in
any community, and particularly in American Indian communities, is costly. It requires an
investment of time and resources in development that is seldom fully funded.”28 However, grants
do not always provide funding for dissemination of data to the community, which often occurs
after a grant has expired and the main study is completed. Based on her experience, Strickland
recommended that researchers plan for funding required for the data dissemination part of CBPR
in their initial grant applications.28
A second major challenge for the researchers in CBPR was maintaining the confidentiality of
research participants. When community members are included as interviewers and in the data
analysis process, the anonymity of research participants may be difficult to ensure. To address
28
Strickland J. 2006. Challenges in Community-Based Participatory Research Implementation: Experiences in
Cancer Prevention With Pacific Northwest American Indian Tribes. Cancer Control, 13, 230-236.
12
this problem, the research team was careful in protecting the identities of research participants,
and they generally presented the planning board with the themes extracted from interviews or
only small excerpts of raw data.28 Finally, it was sometimes difficult for researchers to make
time for meetings, trips to the community, and other aspects of intensive collaboration with the
tribe. The researchers were required to balance the demands of their academic positions, i.e.,
teaching and practice, along with their research projects. Despite the challenges of CBPR, the
research team has strongly advocated for it as an approach in Indian Country because of its
potential for empowering AI/AN communities to improve their health.
The Women and Wellness project was conducted relatively early compared with many other
CBPR projects in Indian Country. Chrisman commented that in the early 1990s, there were very
few publications on how to conduct CBPR. However, the research team members instinctively
adapted their project to respond to community needs. As a result, their study and intervention
designs evolved as the project progressed. They did not draft a formal agreement with the
Yakama Nation for the study, and data ownership was not explicitly discussed by the parties
collaborating on the project.27 Due to the lack of literature about CBPR published at the time,
Chrisman said that the Women and Wellness project researchers did not have a name for their
research method until later, when they learned more about participatory action research. He also
noted that the Women and Wellness project provided him with valuable experience in CBPR. He
then applied that knowledge in future CBPR projects, which did include provisions such as
stipends for community members serving on the study planning committees. He recommends
that researchers conducting CBPR “need to be tolerant of ambiguity, be flexible, and highly
responsive” to community needs as their research projects progress.27
III. Development of an Intervention for Traumatized Adolescents
This case study describes a CBPR project on developing an intervention for American Indian
adolescents with substance abuse problems and a history of experiencing trauma. This study is
ongoing, and is being conducted collaboratively by the Jack Brown Center (JBC), Cherokee
Nation Health Services, and the Centers for American Indian and Alaska Native Health
(CAIANH) at the University of Colorado School of Medicine.29 The information included here
was obtained from a conference presentation given by Mike Fisher and Doug Novins.30 The aim
of the study is “to identify and pilot test a new intervention for traumatized American Indian
adolescents with substance use problems.” Central criteria for this intervention were that it
“should be acceptable to all key stakeholders, feasible given existing and potential resources, and
sustainable after the research project [is] complete.”
This project was formulated in the context of long-standing relationships among the study
partners, who have collaborated on other projects over many years. The JBC was founded in
1988 with Indian Health Service (IHS) funding, and is a residential substance abuse treatment
program for American Indian adolescents. In 1986, the CAIANH was founded, and it assisted
29
The CAIANH consists of several centers which broadly focus on AI/AN health and social issues, including mental
health, the Head Start program, the Circles of Care initiative, and elder well-being.
30
Fisher M. and Novins D. 2007. Intervention Development for Traumatized American Indian Adolescents: A
CBPR-Based Process. Oral Presentation. Community-Based Participatory Research in Indian Country. Tulsa, OK,
July 27.
13
the Cherokee Nation with its original application for the JBC. The collaboration between the
CAIANH, the JBC, and the Cherokee Nation Health Services has not always used a CBPR
approach. Rather, a participatory orientation to research has grown out of the collaborators’
experiences with early research projects.
One impetus for this movement towards a CBPR approach was that a publication from a past
research study by CAIANH researchers had unanticipated impacts on the JBC. At the time of
that study, the Cherokee Nation had not yet established its own IRB, and so the paper was
reviewed by the JBC Director and Cherokee Nation Health Services prior to its publication.
However, the resulting impacts were unanticipated by everyone involved in the research process.
This situation raised all parties’ awareness of the potential impacts of research, both positive and
negative. It also resulted in more in-depth discussions among the project partners about research
findings and their broader implications, particularly regarding publications. In contrast, the
primary focus in previous discussions had been clinical issues. These discussions also led to a
greater appreciation among all parties for the potential contributions each one could make to
research projects, and how research could be shaped to serve the greater mission of the JBC and
Cherokee Nation Health Services. Procedural changes that grew out of these discussions
included the CAIANH researchers seeking input from JBC staff on variables for data collection
that would be of immediate clinical value to them. At the same time, the JBC accommodated
data collection by changing its own clinical procedures so that these variables were collected
from all clients independent of their participation in the research study. The CAIANH
researchers and JBC staff met regularly to discuss the clinical implications of these findings, and
the researchers regularly provided technical assistance and trainings on mental health topics to
JBC staff. All publications were reviewed by the JBC Director, the Cherokee Nation IRB, and
the Oklahoma City Area IHS IRB prior to publication. In subsequent research projects, the
CAIANH, the JBC, and the Cherokee Nation Health Services moved further toward a
collaborative approach, such as through the formation of an advisory board with representatives
from the JBC.
In 2006, the collaborating groups began their current study on intervention development for
traumatized American Indian adolescents. This project used a CBPR design from the outset. One
reason the study focused on intervention development was that JBC staff were frustrated with the
increasing emphasis on using “evidence-based practices” at the national level.30 They felt there
was not yet adequate evidence from research on treatment approaches specifically for American
Indian adolescents. The topic of trauma and substance abuse was selected because the JBC was
interested in developing an evidence-based practice in this area, and because past research had
indicated that nearly all JBC clients had experienced a traumatic event. The grant for the study
was developed by the CAIANH after the concept for the project was endorsed by the JBC and
the Cherokee Nation Health Services Division gave permission for a grant application. As part of
the application, the JBC was included as a subcontractor. The grant application was subsequently
funded by the National Institute of Mental Health (NIMH). The funding agency viewed the
proposed CBPR approach as well as the long-standing collaboration between the CAIANH and
the JBC as strengths of the project.
The Steering Committee for the project includes JBC staff; researchers from the CAIANH; and
representatives of youth and parents; clinicians; a cultural expert; and a CBPR consultant. This
14
team will guide all phases of the research project, including the development of guiding
principles, planning data collection, interpreting research findings, disseminating these findings,
and ongoing monitoring of the project. The Steering Committee has made important
contributions to the research design thus far. For example, the first aim of the research project
was to identify models for the intervention that would be developed. In addressing this goal, the
Steering Committee recommended that CAIANH researchers consult with a traditional Cherokee
healer so that traditional cultural healing modalities would also be considered as potential
interventions. The Steering Committee also developed protocols and discussion questions for the
first round of key informant interviews and focus groups, which were held to identify adolescent
and family needs. Interviews were conducted with key informants, who were administrators from
IHS, the Cherokee Nation Health Services, and state funders. Focus groups were held with youth
who had received treatment at JBC, parents of these youth, and Cherokee Nation Health Services
clinicians working with adolescents that had experienced traumas. Later in the project, the
Steering Committee reviewed interviewer notes and helped to interpret these data, developing
“practices and principles” that they subsequently used to draft potential interventions. One
intervention they considered was an intensive retreat program that would incorporate traditional
ceremonies, rituals, and spiritual teachings, while providing a forum that would support
adolescents in healing and changing behaviors. The intervention will continue to be developed,
and then will eventually be pilot tested.
The project has resulted from close collaborations and has had productive direction from the
Steering Committee. However, there have also been challenges, as Fisher and Novins noted in
their presentation.30 They indicated that CBPR projects are more expensive and time-consuming
than other kinds of research. They also noted that the contractual process between the University
of Colorado and Cherokee Nation was very complex and time consuming. Such complexities are
to be expected in contractual negotiations between any entities with differing contractual
policies, as was the case for the University of Colorado and the Cherokee Nation. In spite of
these challenges, Fisher and Novins pointed out that the CBPR process had been fulfilling and
important to the project design.
IV. Indigenous Archaeology
The research orientation of what Sonya Atalay refers to as “Indigenous archaeology” is firmly
rooted in the principles of CBPR.31 Atalay is an Ojibwe archaeologist, and she has conducted
CBPR studies in Turkey and with American Indian communities in the U.S. Most recently,
Atalay worked with the Saginaw Chippewa Indian Tribe to collect archaeological data
supporting their claims for repatriation of ancestral remains. In a paper entitled “Indigenous
Archaeology as Decolonizing Practice,” Atalay calls for a community-based approach to
archaeology.31 Like CBPR studies in other disciplines, Indigenous archaeology involves
community members, including elders and spiritual leaders, at all stages of archaeological
studies. Indigenous archaeology is rooted in an Indigenous worldview, and incorporates
“spiritual, experiential, and unquantifiable” aspects of archaeological sites.31 Atalay explains that
this orientation to archaeology is not only important for archaeologists working with Indigenous
communities, but that it might offer a guide for ethical archaeological practice more broadly. She
writes:
31
Atalay S. 2006. Indigenous Archaeology as Decolonizing Practice. American Indian Quarterly, 30, 280-310.
15
I argue that Indigenous archaeology is not only for and by Indigenous people but has
wider implications and relevance outside of Indigenous communities. In my view
Indigenous archaeology provides a model for archaeological practice that can be applied
globally as it calls for and provides a methodology for collaboration of descendent
communities and stakeholders around the world.31
In line with this view, Atalay has started establishing a CBPR archaeology project in Turkey
even though the current inhabitants of the land do not view themselves as direct descendents of
the peoples under archaeological study.32 In assessing the possibilities for a CBPR project there,
she found that community members felt they did not know enough about archaeology to actively
participate in a research project, although they were very interested in archaeological activities.
To increase community members’ knowledge about archaeology, Atalay and colleagues planned
a night where community members were invited to visit the archaeological site and share a meal
with the archaeologists working there. They also developed innovative cartoons to provide
education to local children and their parents about the archaeology happening at the site (see
Appendix B). This project is still in its early stages, and Atalay plans to continue working with
community members to determine what kind of involvement, if any, they wish to have in a
CBPR project.
In contrast to the situation in Turkey, the Saginaw Chippewa Indian Tribe had a very clear vision
when they approached Atalay and asked her to serve as an archaeological consultant on a project
related to reclaiming ancestral remains. She agreed, and has worked with them using a CBPR
approach, largely because the community initiated the project and continues to direct it, with
Atalay as a consulting archaeologist. The information described here about this project was
provided by Atalay in phone interviews.33
Atalay estimates that the University of Michigan holds over one thousand sets of human remains
which should be repatriated to Anishinaabe tribes. She initially found out about these remains
when she was a student at the University of Michigan. At that time, she was invited by friends at
the Saginaw Chippewa Indian Tribe’s Ziibiwing Center of Anishinabe Culture & Lifeways to
give talks on archaeology at their tribal museum and cultural center and was asked to consult on
archival projects as well. In the process, she met with elders, spiritual leaders, and tribal leaders,
who expressed concern about the ancestral remains being held at the University of Michigan.
The university classified the burial remains as “culturally unidentifiable,” and claimed they were
unable to be repatriated under the Native American Graves Preservation and Repatriation Act
(NAGPRA).34 However, the Saginaw Chippewa Tribe together with a coalition of all other
32
Atalay S. 2007. Global Application of Indigenous Archaeology: Community Based Participatory Research in
Turkey. Archaeologies: Journal of the World Archaeological Congress, 3, 249-270.
33
Atalay S. Phone interviews with Puneet Sahota, August 12, 2008 and March 26, 2009.
34
NAGPRA became federal law in 1990, and according to the National Park Service, “NAGPRA provides a process
for museums and Federal agencies to return certain Native American cultural items -- human remains, funerary
objects, sacred objects, or objects of cultural patrimony -- to lineal descendants, and culturally affiliated Indian tribes
and Native Hawaiian organizations. NAGPRA includes provisions for unclaimed and culturally unidentifiable
Native American cultural items, intentional and inadvertent discovery of Native American cultural items on Federal
and tribal lands, and penalties for noncompliance and illegal trafficking. In addition, NAGPRA authorizes Federal
grants to Indian tribes, Native Hawaiian organizations, and museums to assist with the documentation and
16
Michigan tribes who are part of a group called MACPRA (Michigan Anishinaabek Cultural
Preservation and Repatriation Alliance), 35 viewed the remains as those of their ancestors and
wished to have them repatriated. MACPRA, which includes representatives from the 14
Anishinaabe tribes in Michigan, was invited by the Saginaw Chippewa Indian Tribe to attend
presentations given by Atalay and to participate fully in all planning sessions about making the
repatriation claim.
The leadership of the Ziibiwing Center found a National Park Service (NPS) grant
announcement offering funding to tribes for research to investigate the affiliation of human
remains and associated funerary objects.36 The Center decided to apply for the grant, and after
writing it, invited Atalay to review and edit it as well as to serve as the archaeologist for the
project. The grant was funded for $75,000, and the project was conducted from 2005 - 2008. The
Ziibiwing Center and Atalay did not have a formal written agreement spelling out the terms of
their collaboration, and so did not have a legal arrangement about data ownership. The tribe
“controlled” and “curated” the data, according to Atalay. Atalay offered to sign a written
agreement, but Ziibiwing Center staff felt this was unnecessary and instead made a verbal
agreement with Atalay. She commented that her partnership with the Ziibiwing Center was based
in “trust” and said that it did not feel “culturally appropriate” to sign a legal document because
verbal agreements are often the cultural norm in Indian Country. Atalay also noted that
documents can sometimes constrain the scope of a collaboration. She said: “Our relationship was
informal, and what we ended up doing [in our projects] is not the same as what we had talked
about at the beginning. If we had a signed document, it may have made us feel we had a need to
be true to that document. So without it, we could work on different projects and take those
projects in different directions.”33 Atalay further commented that written agreements can be
modified as projects evolve, but that in the particular case of her work with the Zibiiwing Center,
all parties were able to be “trustful and respectful” without a written agreement.
Atalay’s role in the project was to conduct the archaeological research related to the repatriation
claim, and she frequently reported her ongoing findings to those involved with the grant work,
including Ziibiwing Center staff, MACPRA representatives, community spiritual leaders, and
tribal elders. She was also charged with gathering supporting information on the Anishinaabe
cultural perspective on the burial remains. The community group working on the NPS grant
made visits to the archaeological sites and to the University of Michigan, where they were able
to witness the remains and burial items held in the University’s collection. During these visits,
tribal spiritual leaders were able to explain the meaning of materials they saw from the burial
sites. Atalay said that these detailed explanations were proof of “phenomenal cultural continuity”
between the present-day tribes in Michigan and their ancestors. This information also provides
useful evidence for the tribe’s repatriation claim. In the fall of 2007, the Saginaw Chippewa
repatriation of Native American cultural items, and establishes the Native American Graves Protection and
Repatriation Review Committee to monitor the NAGPRA process and facilitate the resolution of disputes that may
arise concerning repatriation under NAGPRA” (http://www.nps.gov/history/nagpra/FAQ/INDEX.HTM). For the
full text of NAGPRA, see: http://www.nps.gov/history/nagpra/MANDATES/25USC3001etseq.htm.
35
For more information on MACPRA, see http://www.macpra.org/index.html.
36
Under the National NAGPRA Program, tribes may apply for grant funds to support research aimed at documenting
the cultural affiliation of human burial remains and cultural items. The program also offers tribes grant funds for the
costs of repatriation, including packaging, transportation, and reburial of burial remains or cultural items. For more
information, see http://www.nps.gov/history/nagpra/GRANTS/INDEX.HTM.
17
Indian Tribe and MACPRA made a joint claim to the University of Michigan for repatriation of
these ancestral remains. University of Michigan officials initially stated that they were unable to
return the remains to any one particular Indian band in the state because it could not be
determined to which band the remains belonged. However, as Atalay pointed out, at the time
Europeans arrived in North America, the band system and tribal identity was very different than
it is today, and although there were distinct communities, all of the Native people there were
known collectively as the Anishinaabe. The Saginaw Chippewa Indian Tribe and MACPRA are
currently strategizing about how to continue asserting their repatriation claim and how the
archaeological data Atalay collected should be utilized.33
The process of CBPR can be empowering for involved communities in ways that extend beyond
the direct outcomes of a research project, according to Atalay. Building capacity in tribal
communities is a broader goal of all of her research projects. Regarding her work with
repatriation claims, she said that community members “take back their power” by learning about
and bringing home their ancestors. She observed that this empowered sensibility then spreads
into other areas of community life, such as language revitalization efforts.33 Atalay noted that
while taking a CBPR approach to archaeology has been deeply satisfying, it has not always been
easy. She has found it challenging to balance Native worldviews with those of academic
researchers. In making the repatriation claim for ancestral remains to the University of Michigan,
tribal elders and spiritual leaders wanted to prioritize a moral and cultural argument over one that
featured archaeological data. Atalay respectfully deferred to their wishes, although she was
concerned that it would be difficult to convince an academic institution to return the ancestral
remains without providing the detailed “scientific” data viewed as valid in academia. She said,
“Balancing Native and academic worldviews is a tension for me in the work that I do, and is a
major one we will continue to struggle with as we do CBPR in Indian Country. How do we
balance those worldviews, especially in academia where Native worldviews are not always
respected and believed?”33 Atalay also discussed the challenges of advocating for Indigenous
archaeology, which is on the margins of archaeology as a discipline. She has received mixed
responses to her work from other archaeologists, some of whom have warned her that pursuing
an approach outside mainstream archaeology could have a negative impact on her academic
career. She noted that she has been “pegged as an activist, as not objective, unscientific, and not
doing valid research” by some in her field because she has worked collaboratively with
communities.33 It has also been difficult for her to find funding for CBPR archaeology projects,
because the CBPR methodology is not entirely familiar to grant reviewers in her field. Despite
these obstacles, Atalay will continue working to make CBPR a part of mainstream archaeology
because she believes it offers an important ethical framework for her field. In one of her recent
publications, she writes: “Indigenous archaeology is one of several approaches guiding the way
toward a new form of mainstream archaeological practice—one that is collaborative, community
based, and holds greater concern for the social context and impact of its research practices and
outcomes.”32
V. Revitalizing Traditional Indian Fire Practices
Don Hankins, who is trained in geography and is a member of the Miwok tribe, conducts
research on traditional fire practices of American Indians in California and how these practices
might be applied to current problems in conservation and fire management. Hankins worked with
18
California Indian tribes using a participatory approach for his doctoral dissertation. The
information presented here is based on his dissertation,37 a brief article about his research
process,38 and personal communication with Hankins. 39
American Indians traditionally used fire as an important tool for natural resource management.
Seasonal controlled burns of vegetation helped to foster the growth of certain plants, including
those used for traditional basket weaving, and likely impacted the animal species which
flourished in certain regions as well.37 Traditional burning practices were severely limited by
contact with Europeans and Americans as well as the loss of land AI/AN communities
experienced under federal government policies. In fact, California Indians were punished by
Spanish missionaries for burning the landscape. Despite this painful history, knowledge about
traditional fire practices is still held by some AI/AN communities, and these practices may be
useful for current efforts at conserving plant and animal species.
Hankins’ idea for his dissertation research emerged directly from his involvement in community
activities.38 He first conceptualized the project when he was a member of a steering committee
that was working with another student on her research study at Cache Creek Nature Preserve in
Woodland, CA. He was one of several California Indian traditional cultural practitioners, who
were mostly basket weavers, serving on the committee. During meetings with the student, the
steering committee discussed traditional fire practices that were associated with management of
resources in riparian (areas along rivers) zones. These discussions also revealed that conservation
land managers were concerned that periodic controlled burns like those traditionally conducted
by California Indian communities would harm plant and animal life in riparian areas. For this
reason, members of the steering committee felt that research assessing the impacts of traditional
fire practices on plant and animal life would be helpful.
Hankins worked with traditional California Indian cultural practitioners to develop a plan for a
research study that would simulate traditional fire practices and assess their impact on riparian
zones.37 He learned about the techniques that were traditionally used in preparing for controlled,
circumscribed burns from traditional cultural practitioners and through reviewing scholarly
literature. In consulting with traditional cultural practitioners, Hankins also learned that these
periodic burns were conducted in certain seasons. He hypothesized that California Indians had
carefully developed their fire practices over many generations, and that this process yielded
knowledge similar to what would be labeled “scientific” in today’s context. The major difference
between traditional science and Western science, Hankins wrote, was the way in which
knowledge was disseminated (oral tradition vs. written publications). After careful study of the
impact traditional fire practices had on riparian environments, Hankins concluded that traditional
California Indian fire practices were based in scientific knowledge about the biological benefits
to the landscape as well as in broader cultural frameworks.
37
Hankins D. 2005. Pyrogeography: Spatial and Temporal Relationships of Fire, Nature, and Culture. Doctoral
dissertation, University of California, Davis.
38
Hankins D. Focus: Culture, Conservation, and Red Tape: Experiences in California Indian Prescribed Fire
Research. Electronic document, accessed Aug. 13, 2008, from
http://www.cnr.berkeley.edu/community_forestry/People/voices/indian%20prescribed%20fire.pdf
39
Hankins, D. Personal communication with Puneet Sahota, April 14, 2009.
19
During his dissertation research, Hankins conducted “several burn treatments using typical
seasonal variations of traditional indigenous fire regimes along with post-burn monitoring” at
two Central California riparian sites.38 He found that the burns did not have a significant adverse
impact on most animal species in the area. He also discovered that the fire treatments resulted in
an increase in ground cover by grasses, herbs, and forbs, as well as increased diversity and
abundance of native plants. Finally, he compared traditional fire practices of California Indians
to those of Aboriginal Australians. Hankins concluded that there were many similarities in the
techniques used in burns (e.g., burns conducted in specific seasons, careful control over the
intensity and extent of burning, etc.) He also noted that for both Indigenous groups, fire practices
were rooted in biological benefit to the landscape as well as broader spiritual and cultural
worldviews.37
It is possible that traditional Indian fire practices helped to prevent the large wildfires that often
occur in the West today. Revitalization of traditional fire management techniques would thus
likely be of ecological benefit, contribute positively to current challenges in land conservation,
and help to revitalize California Indian cultural practices and worldviews. As Hankins noted,
participatory and applied research aimed at revitalizing traditional fire practices would help to
“increase desired floral/faunal resources [such as plant materials used in basket weaving],
validate/perpetuate traditional knowledge and cultural practices, and train community members
in scientific methodology.”37
Hankins’ dissertation work was funded primarily by the Community Forestry and Environmental
Research Fellowship. In addition, he received funding from the American Indian Science and
Engineering Society (Environmental Protection Agency, the Tribal Lands Environmental
Science Scholarship); the Emily Schwalen Memorial Prize - Department of Agronomy and
Range Science, University of California-Davis; and several university-based awards. A portion
of the grant funds supported honoraria for research participants.
Conducting his dissertation research project required Hankins to coordinate his work with
complex networks of people and several organizations. These collaborating groups included
Miwok cultural practitioners, other tribal entities, agencies and land managers, a plant material
center, fire departments, regional air quality regulatory groups, volunteers, and the Cache Creek
Conservancy. Building a coalition of these diverse stakeholders for the study was a challenge but
also an important outcome of Hankins’ project. He also faced challenges in negotiating multiple
bureaucratic and regulatory requirements related to fire control and air quality. While Hankins
was aware that he would need to coordinate with all the involved parties, he did not anticipate
just how complex the process would be. It was ultimately necessary for him to alter his research
protocol to accommodate requirements and the schedules of fire departments and regional air
quality regulators. He writes,
There were many times that I questioned if the research was truly a study of indigenous
fire management practices, or if non-indigenous entities were redirecting the
implementation of the project… Ultimately, the treatments were representative of both
indigenous and contemporary fire treatment types. Thus, due to the conflicts a
compromise to the intended treatment timing and methodology had to be made.38
20
In addressing the challenges he encountered during his research project, Hankins discovered that
that it was essential not only to build strong bonds with California Indian communities but also
with other entities outside the immediate research context. Research and other efforts aimed at
revitalizing traditional Indian fire practices are likely to face bureaucratic and regulatory
challenges in the future. Networking and collaboration with relevant regulatory entities will be
helpful in overcoming these obstacles.
There were no formal written agreements between Hankins and the community partners who
participated in his project, although he and his colleagues are now “investigating
development of research agreements with participatory/reciprocal research in mind.”39 While
Hankins holds the copyright for his dissertation, he views the data that are presented as “broadly
owned” in complex ways by himself and the communities with which he worked. He said:
At the beginning of the dissertation I have an acknowledgement that the
traditional knowledge belongs to the communities I worked with…Essentially traditional
knowledge is generally not owned by an individual, rather the community. Certainly
within my research there are original ideas of my own combined with information that is
attributed to others. “Ownership” in this context becomes quite complex. As an elder
used to tell me, the information we share is shared for all to benefit from it.39
Participation in this project provided community members with the opportunity to gain
experience in working with a diverse group of collaborators with varied interests, and some were
trained in data collection methods. The restoration of traditional fire practices also resulted in
other benefits to community members, as controlled burns had an emotional and spiritual
“cleansing” effect on those who participated in them.39 Finally, Hankins’ dissertation project
resulted in changes to policies and practices. He said that now, “more fire is starting to be
applied to the landscape for cultural purposes.”39 Hankins and Jacquelyn Ross also recently coauthored a book chapter providing a detailed discussion of issues AI/AN scholars and
communities face in CBPR studies.40
Conclusion
CBPR holds great promise for the future of research in AI/AN communities. A key benefit of
CBPR is that it can provide communities with the data and tools to develop new solutions to
problems they face. Such solutions might include developing new programs or changing existing
programs and practices, as illustrated in the case studies above. CBPR can also be empowering
for communities within the research process itself. It offers an approach which places the
interests of communities at the center of research projects conducted in collaboration with
researchers. CBPR can help communities to develop the capacity for designing and conducting
their own research projects, as is illustrated by some of the case studies described above.
Communities are increasingly shaping their own research agendas and inviting researchers to
work with them as collaborators or consultants. There is a range of other benefits communities
40
Hankins,D and Ross J. 2008. Research on Native Terms: Navigation and Participation Issues for Native Scholars
in Community Research. In Partnerships for Empowerment:Participatory Research for Community-Based Natural
Resource Management, Ed. C. Wilmsen et al. Pp. 239-258. London: Earthscan.
21
might receive from CBPR projects as well, including capacity building or training for
community groups and individuals involved in those projects.
The case studies described above also show that there are challenges in using a CBPR approach.
This type of research can be very time-consuming for communities and researchers.
Communities may find it is challenging to assemble a steering committee and otherwise build
infrastructure required for participating in all phases of a research study, such as data collection,
data analysis, and preparation of publications. For more information on strategies for regulation
of research and different possible committee structures for research review, see the National
Congress of American Indians Policy Research Center (NCAI PRC) publication series “Research
Regulation in American Indian/Alaska Native Communities.”10 Being involved at all stages of a
research project requires a substantial investment of time from community members or staff.
CBPR can include a broad range of levels of involvement from communities, however. If
participating in all aspects of a research project is impractical, communities may choose to be
more heavily involved in some phases than others. As a broader philosophy, CBPR is meant to
be flexible and to prioritize community needs, including the need for less involvement in a
research project if necessary.
The intensive collaboration with communities in CBPR also requires significant time from
researchers. It may take one to two years (or longer) to build relationships with the community
and set up the initial research project. This stage of research can delay the data collection phase
and publications, which are important for researchers trying to gain tenure in academic jobs.
Researchers may also find it challenging to balance their CBPR activities with other academic
commitments. Combining teaching with research through including students in CBPR projects is
one possible strategy to deal with this issue. Atalay commented that having an institutional
environment which supports a CBPR approach has been important for her because CBPR is not
yet viewed as mainstream in her field.33 Strickland also noted that it is also helpful to researchers
to have academic institutions that are supportive of CBPR and the demands it places on
researchers.28 For example, intramural grants from universities for CBPR projects can be very
helpful, particularly when funding is not continuously available through external grants.
Strickland also suggests that intramural grants from academic institutions should support
“faculty travel to remote communities” and “funding for incentives” provided to AI/AN
communities for participating in CBPR projects.28 Finally, she points out that reward and
evaluation structures at universities also need to reflect the structure of CBPR projects, such as
by placing equal value on multi-author and single-author publications; supporting the
involvement of students in CBPR; and valuing the importance of CBPR and community
partnerships in making decisions about tenure and promotion for researchers. Salsberg et al.
write that having university IRBs which support CBPR and value community review of research
is important.22 As CBPR increases in prominence, academic institutions may become even more
supportive of researchers conducting these kinds of projects. AI/AN communities and
researchers involved in CBPR might help to continue improving the academic and funding
environment through advocating for CBPR and publicizing their own successes using this
research approach. Networking with other communities and researchers engaged in CBPR may
be useful for sharing successes and in overcoming challenges. Communities and researchers
wishing to network with others involved in CBPR may join a national CBPR listserv.41
41
For more information or to join this CBPR listserv, see http://mailman2.u.washington.edu/mailman/listinfo/cbpr.
22
Additional CBPR-related resources are also available at http://mycbpr.org and from the nonprofit organization Community-Campus Partnerships for Health (http://www.ccph.info).
Finding funding for CBPR projects has also been a challenge for many research studies
conducted in Indian Country. There is a range of funding sources and resource-sharing
arrangements between communities and researchers in CBPR projects, as is reflected in the case
studies described above. Strickland has argued that a supportive funding environment is
important for ensuring that CBPR will continue to be increasingly accepted as a valid approach
in research.28 Ideally, adequate budget resources would be available to compensate communities
for their contributions in CBPR projects. However, as noted in the cases of the KSDPP and the
Women and Wellness project, communities may sometimes need to invest their own resources
into CBPR projects, particularly when external funding is limited. Given the time required to
fully participate in all aspects of a research study, AI/AN communities may even feel it is
necessary to hire new staff members for CBPR projects. It may not be possible for all
communities to find extra funds to devote to CBPR studies. When external grants are available,
they should ideally be proportionally allocated between the research institution and the
community, depending on how the work for the project is divided. Sharing grants can pose its
own challenges, however. As Fisher and Novins reported, creating a subcontractor relationship
between a university and a tribal organization can take time and be a complex process.30 Their
research team’s experience also showed that it is possible to obtain funding for CBPR from a
federal source. Increasingly, federal grant agencies are including CBPR in their grant
announcements42 and hopefully, this trend will continue. Evaluations of CBPR as a research
methodology and studies on what constitutes “success” in this kind of research may strengthen
advocacy efforts for increased funding and academic institutional support for CBPR. There are a
wide variety of measures that might be used for “success” in CBPR projects for both
communities and researchers, as is illustrated in the case studies described above. The NCAI
PRC has recently partnered with researchers at the University of New Mexico, the University of
Washington, and CBPR project teams nationwide to conduct a study of community-researcher
partnerships in health-related studies. The goal of this project is to understand the promoters and
barriers to conducting CBPR in AI/AN and other communities.43
Finally, it can sometimes (but not always) be challenging to balance community needs with
scientific research goals. Fisher and Ball noted that some common research study designs have
not been well-received by AI/AN communities.7 For example, studies which randomize
participants into intervention and placebo or control groups may not work for some communities
because not all research participants receive the intervention. Such a study design may seem
inconsistent with AI/AN values of sharing and communal benefit. This issue can be addressed
through the use of other research designs that are scientifically valid but allow for all research
participants to receive an intervention, such as through a time-lagged interval study design. In
this type of study, different groups of research participants receive the intervention beginning at
different times.
42
Burhansstipanov L, Christopher S, and Schumacher A. Lessons Learned from Community-Based Participatory
Research in Indian Country. 2005. Cancer Control, 12, 70-76.
43
This project has been funded by a grant from the Native American Research Centers for Health program. For more
information about this project, contact the Principal Investigator, Sarah Hicks, at shicks@ncai.org.
23
CBPR holds great promise for research studies to be grounded in community interests and
responsive to community needs. Being involved as a partner in research studies or conducting
their own studies provides AI/AN communities with the opportunity to gather data that addresses
their priorities. This orientation to research also empowers a community to design and test its
own interventions or programs, making those efforts specifically tailored to the needs of
community members. CBPR has become more widely known and accepted as an approach to
research in recent years, and hopefully, this trend will continue as more communities and
researchers engage in productive collaborations.
Acknowledgments
The research groups whose work is described in this paper provided helpful information
regarding their work and reviewed earlier versions of this manuscript. We thank Ann Macaulay,
the Kahnawake Schools Diabetes Prevention Project, June Strickland, Noel Chrisman, Doug
Novins, Mike Fisher, the Cherokee Nation - University of Colorado Denver Steering Committee
for Adolescent Behavioral Health, Sonya Atalay, the Ziibiwing Cultural Center of the Saginaw
Chippewa Indian Tribe of Michigan, Don Hankins, Jon Tilburt, and Bonnie Duran for their
assistance in preparing this paper.
The NCAI PRC welcomes questions or comments about this paper. Please email feedback to
Puneet Chawla Sahota, NCAI PRC Post-Doctoral Fellow, at singhp@wusm.wustl.edu.
24
Appendix A
Figure provided by Jon Tilburt, co-Principal Investigator for the study “Patterns of Care for
AI/AN Men with Elevated PSA.”
25
Appendix B
26
Figure provided by Sonya Atalay, Ian Hodder, and the Catalhoyuk Research Project.
27