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.