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Participatory Research in a Native Hawaiian
Community
The Wai’anae Cancer Research Project
Doris Segal Matsunaga, M.P.H.’
Rachelle Enos, M.P.H.’
Carolyn C. Gotay, Ph.D.2
Richard 0. Banner, M.D.’
Ho’oipo DeCambra’
Ormond W. Hammond, P ~ . D . ~
Nancy Hedlund, Ph.D., R.N.‘
Evanita K. Ilaban’
Brian F. Issell, M.D?
JO Ann Tsark, M.P.H.4
’
Wai’anae Coast Comprehensive Health Center,
Wai’anae, Hawaii.
* University of Hawaii Cancer Research Center,
Honolulu, Hawaii.
Kamehameha Schools Bishop Estate, Honolulu, Hawaii.
Governor‘s Pacific Health Promotion and Development Center, Honolulu, Hawaii.
BACKGROUND. Community participation was a key component of a cancer control
research project in a Native Hawaiian community. This project tested the effectiveness of a culturally appropriate intervention as a means of increasing breast and
cervical cancer screening practices among Native Hawaiian women on the Wai’anae Coast of the island of O’ahu.
METHODS. The Wai’anae Cancer Research project was community driven, with
Native Hawaiian community representatives involved in all phases of the project,
from grant proposal development to data interpretation. A community health center administered the grant award from the National Cancer Institute. The policymaking steering committee included community representatives, health professionals, and researchers to balance community and scientific quality standards. A
factor in the project’s success was continuous involvement over 7 years by a core
of community representatives and professional staff.
RESULTS. More than 500 women participated in the intervention, and outcome
measures indicated that there was a community wide impact on cancer-related
knowledge, attitudes, and behaviors. Important contributions of the project also
included direct economic benefits, improvements in health services and systems,
increased research capabilities, and dissemination of findings to other communities and researchers.
CONCLUSION. Community participation in all phases of the research was essential
in generating community acceptance and resulted in an innovative and effective
intervention. This participatory research project has left the community richer in
knowledge, skills, experience, confidence, and resources. These qualities provide
a strong foundation for building future programs and research. Cancer 1996;
781582-6. 0 1996 American Cancer Society.
KEYWORDS: culture, ethnic groups, community health services, health promotion,
breast neoplasms, cervix neoplasms.
Presented at the Native American Cancer Conference Ill: Risk Factors, Outreach and Intervention Strategies, Seattle, Washington, June 1619, 1995.
Address for reprints: Carolyn C. Gotay, Ph.D.,
University of Hawaii Cancer Research Center,
1236 Lauhala St., Honolulu, HI 96813.
Received May 31, 1996; accepted June 18,
1996.
0 1996 American Cancer Society
C
ancer is a major cause of morbidity and mortality in Native Hawaiians. Based on Hawaii Tumor Registry data, Native Hawaiians have
the highest cancer mortality rates and are second only to whites in
overall cancer incidence.’ With respect to specific cancer sites, this
disparity is even more striking. For example, Native Hawaiians are
more than three times as likely to die of breast cancer than women
of Japanese ethnicity.’ This disparity in survival rates is due, in part,
to the fact that Native Hawaiian patients are diagnosed at a more
advanced stage than patients of other ethnicities.’ These statistics
support the need for programs to promote cancer screening for Native
Hawaiians.
I
Health promotion programs targeted at Native
Hawaiians have often failed in the past because of
cultural inappropriateness.3 Conventional research efforts, in which the principal planners and decisionmakers are university-based researchers, have left
many Native Hawaiians feeling exploited or being
“used as guinea pigs.”4 To ensure that the focus and
interventions in this research project were culturally
appropriate, a participatory approach to research was
used. Participatory research was defined as research in
which members of the intervention population share
equally in research planning, implementation, evaluation, and dissemination of results.
Participatory Research/Matsunaga et al.
1583
WAI’ANAE CANCER RESEARCH PROJECT
1
Principal Investigator
I
~ K O K U GROUP
A
INTERVENTION
\
Navigators
Peer Group Leaders
Kokua Group Participants
BACKGROUND
In 1986, the Wai’anae Coast Comprehensive Health
Center, a federally funded community health center
serving a community of 45,000 members (of whom
approximately 18,000 are Native Hawaiian), initiated
the planningprocess that created this research project.
During that year, the health center took part in a project conducted by a cancer research agency to study
the high risk of cancer among Native Hawaiians. This
research used traditional Western research methodologies, with some community participation elements
introduced by the health center. This experience stimulated the formation of a community research committee, composed of community representatives,
health professionals, and scientific researchers, that
worked for 2 years to develop and seek funding for
the Wai’anae Cancer Research Project. The resulting
proposal for a 5-year breast and cervical cancer control
research project was funded in 1990 by the National
Cancer Institute (NCI).
METHODS AND STRUCTURE OF COMMUNITY
PARTICIPATION
The governing structure of the project (Fig. 1) was
designed to maintain the ideal of community ownership of the project. The Wai’anae Coast Comprehensive Health Center was the direct recipient of the NCI
funding, and its medical director was asked to serve
as the principal investigator. Two coprincipal investigators-a Wai’anae community leader and the director of the University of Hawaii’s Cancer Research Center-were chosen to assure both community and scientific quality control. These three persons, along with
two representatives from the community advisory
committee and two scientific representatives, comprised the membership of the policy-making steering
committee. The principal investigator retained final
decision-making authority in the event of conflicts and
I
FIGURE 1. Governing structure of the Wai’anae Cancer Research Project.
to assure that project control rested squarely in the
community.
Community residents were chosen to participate
on a community advisory committee based on their
involvement in community health activities, their
knowledge of Hawaiian culture, and their understanding of the Wai’anae Community. Kupuna, or elders,
were asked to participate because they are considered
the keepers of cultural knowledge and wisdom. Community advisory committee members participated in
the project on a volunteer basis over 7 years: 2 years in
proposal development and 5 years of project planning,
implementation, and evaluation.
A range of approaches was used to facilitate participation by community advisory committee members, all of whom were busy community and family
leaders. In addition to regular community advisory
committee meetings, these approaches included
forming smaller ad hoc “construction crews” for specific tasks, mailing or dropping off documents for re-
1584
CANCER Supplement October 1, 1996 / Volume 78 / Number 7
TABLE 1
Impact of Wai’anae Cancer Research Project
Direct economic impact
= NCI grant administered by Communi& Health Center
= Community wumen hired and trained to conduct intervention
= Community women hired and trained to conduct evaluation
Improvements in health services and systems
= Education and screening for women
= Enhanced community capacity for peer education
= New services piloted by project:
A Woman’s Clinic (evening cancer screening clinic)
Wai’anae Cancer Support Group
Foundation-funded Wai’anae Women’s Health Network to continue activities
Itiiproved research capability
= Principles and Guidelines for Participatory Research
= Community women vith research experience and skills
= Health professionals & researchers with participatory research experience
= Training and internships for high school and graduate students
Ilissemination of findings
= Protocols for Publication & Dissemination of Project Data
= \itlentape documentan
= Summaq Report to Hawaiian Communities
= Kokua Group Rlanual
= Culturally-acceptable evaluation tools
= Final Keport (including Executive Summar).)
= lacal media coverage
= Publications i n scientific iouriials
view, making frequent telephone calls, and attending
many informal in-person consults.
Professional staff, with experience in public health
and community organizing, were essential to building
and maintaining participation by these community
consultants. Three Wai’anae Coast Comprehensive
Health Center staff were consistently involved through
the entire 7 years. The strong continuity of both staff
and community participation was a critical factor in
the project’s success.
Conflicts between and among scientific and community researchers due to historical distrust and differences in perspectives and priorities were inevitable
as the partnership developed. Most were resolved
through discussion and consensus in this “meetingintensive” project, aided by the fact that all of the
individuals were in agreement on the final project
goals. A gradual building of trust arose from the successful completion of project products and components that were satisfactory to all parties (Table 1).
PROJECT INTERVENTION
The purpose of the Wai’anae Cancer Research Project
was to test the effectiveness of a culturally appropriate,
community-driven intervention as a means of increasing breast and cervical cancer screening practices
among Native Hawaiian women. The primary inter-
vention was the formation of health-focused support
groups, called “Kakua Groups,” within existing Hawaiian social networks. The groups used traditional Hawaiian values and communication models as the basis
for a curriculum to promote breast and cervical cancer
screening among Native Hawaiian women residing on
the Wai’anae Coast of the island of Oahu.
The traditional Hawaiian value of KOkun is defined
as a mutual willingness to help without an expectation
of return and without having to be asked. Kakua
Groups were organized by “navigators.” For this cancer control research project, navigators were Native
Hawaiian paraprofessional health educators from the
community, hired as project staff and trained in group
facilitation, cancer information, and other health-related topics. The navigator’s role was to recruit women
to host the groups, present information to the groups,
arid facilitate discussion among participants to help
them overcome their own barriers to screening. They
were also available to follow up with women who either needed extra encouragement to get screening or
who needed assistance when test results indicated abnormal findings. The navigator’s entrance to these
community groups was via peer group leaders. These
were women who were leaders in their own social
networks and who were interested in sharing healthpromoting, life-saving information among their family
and friends. Peer group leaders were volunteers recruited by the navigators through community media
and word-of-mouth. Peer group leaders hosted one or
more Kakua Groups, inviting friends, family, and/or
coworkers to attend.
The Kakua Group curriculum was developed
through the cooperative efforts of community researchers, project staff, and scientific researchers. It
was based on traditional Hawaiian values such as KOkua, Aloha (love), and Lokahi (harmony).It also built
on traditional strengths and characteristics of Hawaiian social interaction. One of these strengths is the
willingness of the Native Hawaiian to help others,
rather than to focus on the self. At these gatherings,
women were brought together to share their experience with cancer and to reinforce the importance of
regular screening and early detection with one another
and the project navigator. The Kakua Group curriculum was designed to be flexible and to be delivered in
the traditional “talk story” fashion used by the
women. Lecture and presentation by the navigator was
minimized, whereas interaction and experience sharing among the women was encouraged. The tone was
accepting and supportive, with both laughter and tears
occurring in most groups.
Vouchers for no-cost mammograms, breast exam-
Participatory Research/Matsunaga et al.
inations, and Pap smears were given to group participants as a way to help overcome financial barriers,
facilitate diffusion, and track behavior change. Participants were given an extra set for a friend or family
member who had not attended the group. This allowed them to share information and resources directly with someone else, thereby spreading the message of the importance of regular screening and early
detection in a manner that was respectful of traditional
values.
An oral informed consent procedure was used in
this study. Women were informed about the nature of
participation, given the opportunity to ask questions,
and given the option to withdraw participation at any
tirne. Consent for release of information associated
with vouchers was obtained by signature at the time
the voucher was redeemed.
IMPACT OF THE WAI’ANAE CANCER RESEARCH
PROJECT
More than 500 women participated in KBkua Groups.
A variety of measures was used to evaluate the effec-
tiveness of the intervention, including assessing
knowledge, attitude, and behavior changes in women
attending the KOkua Groups as well as in random samples of women in the Wai’anae community and elsewhere on O’ahu. Although a full description of these
findings is beyond the scope of this article, all measures indicated that the project served the population
it set out to reach and that it had a community-wide
impact on knowledge, attitudes, and behaviors related
to breast and cervical cancer control. A complete evaluation of the impact of this project, however, must
also include its immediate and long term impact on
the Wai’anae community and its potential benefit for
other Native Hawaiian and Native American communities. During the planning phase, community researchers stated that any research should provide direct and immediate benefits to the Community and
that it should leave something positive behind when
it was over.
Table 1 outlines various effects of the Wai’anae
Cancer Research Project on the community, as documented by its community and scientific researchers.
These effects include the following.
Direct Economic Benefits
The planning committee for this project chose the local community health center to administer the grant
to assure direct accountability to the Wai’anae community and to ensure that the grant resources provided maximum economic benefit to this economically depressed area. Scientific expertise, data analysis,
1585
and some data collection services were obtained by
the health center via subcontracts. The resulting economic benefits included jobs and training for community people at all levels of the research. For example,
the project included a telephone survey, and all of the
interviewers were Wai’anae Coast residents, as a result
of a requirement written into the subcontract with the
survey firm.
Improvements in Health Services and Systems
In addition to providing cancer education and screening to participants, the research project piloted new
services in response to early findings: “A Woman’s
Clinic” (an evening cancer screening clinic) and the
Wai’anae Cancer Support Group. These programs now
continse as regular services of the Wai’anae Coast
Comprehensive Health Center. Local funding was obtained for a Wai’anae Women’s Health Network, which
will build on the enhanced community capacity for
peer education. This funding currently provides support to continue components of the intervention for
3 years after the close of the research project.
Improved Research Capabilities
A document, “Principles and Guidelines for Participatory R e ~ e a r c h , ”was
~ developed, published, and piloted during this project. It is currently used by the
Wai’anae Coast Comprehensive Health Center when
research requests are considered. The research project
served as a training ground for a number of high
school students and graduate student interns, the next
generation of community and scientific researchers.
As a result of the project, there is now a cadre of community women with research skills and experience,
along with health professionals and researchers with
skills and experience in participatory research. Most of
these individuals continue to be involved in research,
direct service, and/or volunteer experience that draws
directly on project experience.
Dissemination of Findings
The principle of community “ownership” of data was
so important to project planners that they developed
“Protocols for the Publication & Dissemination of
(Project) Data.” The protocols called for 1)community
participation in the interpretation of preliminary and
final data, 2) the timely sharing of preliminary and
final data with research participants and Native Hawaiian community organizations, 3) the participation
of community representatives as coauthors on publications of data, and 4) a community-level peer review
process established for publications submitted to scientific journals. Dissemination to other communities,
1586
CANCER Supplement October 1, 1996 / Volume 78 / Number 7
professionals, and researchers is occurring via such
products as a documentary videotape, a summary of
findings for Hawaiian communities, a manual to aid
in replicating Kakua Groups, and publications in scientific journals.s
CONCLUSION
Community participation in all phases of the research
project was essential to generating community acceptance and resulted in an innovative and effective intervention. This participatory research aimed to go a step
further and to leave a legacy in its wake. As a result of
the research project, the Wai’anae community is richer
in knowledge, skills, experience, confidence, and resources. This will serve as a strong foundation on
which to build future programs and research.
REFERENCES
1.
Hawaii Tumor Registry data. 1995.
LeMarchand L, Kolonel L. Cancer: epidemiology and prevention. The health of native Hawaiians: a selective report
on health status and health care in the 1980’s. Wegner E,
editor. Social process in Hawaii. vol. 32. Honolulu: University of Hawaii Press, 1989.
3 . E Ola Mau, The Native Health Consortium. Native Hawaiian
health needs study: report of E Ola Mau Task Force on
Health Needs of Native Hawaiians. Medical Task Force Report. Alu Like, Inc., 1985.
4. DeCambra H, Enos R, Matsunaga DS, Hammond OW. Community involvement in minority health research: participatory research in a native Hawaiian community. Cancer Control Res Rep Public Health 1992;October.
5. Banner RO, DeCambra H, Enos R, Gotay C, Hammond OW,
Hedlund N, et al. A breast and cervical cancer project in a
Native Hawaiian community: the Wai’anae Cancer Research
Project. J Prev Med 1995;24:447-53.
2.
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