Community-based participatory research approach to evidence-based research: lessons from the Pacific Islander American Health Study.

OBJECTIVES: Reports on the challenges and lessons learned from the Pacific Island American Health Study engagement with community-based organizations (CBOs) and faith-based organizations (FBOs) in Pacific Islander (PI) communities and mechanisms to facilitate the collection of robust data. METHODS: Academic-community partnership building was achieved with PI CBOs and FBOs. Focus group meetings were organized to plan various aspects of the study, develop questionnaire themes and protocols for survey, assist with the interviewer recruitment process, and strategize data dissemination plan. LESSONS LEARNED: The PIA-HS represents a model for overcoming challenges in data collection among small understudied populations. FBOs represent a valuable resource for community-based participatory research (CBPR) data collection and for effective interventions. CONCLUSION: The study methodology can be replicated for other racial/ethnic groups with high levels of religiosity combined with concentrated levels of residential clustering. Expansion of the Pacific Islander American Health Study (PIA-HS) to include other PI subgroups is encouraged.

Tongan perceptions of cancer.

BACKGROUND: There is little published information about cancer-related knowledge, attitudes, and preventive behaviors of Tongans in the United States. The purpose of this study was to evaluate answers to the following questions: What is cancer? What causes cancer? And what can you do to prevent cancer? METHODS: We completed face-to-face, semi-structured interviews with 48 self-reported Tongans (16 men and 32 women) over the age of 18 years, selected through non-probability purposive sampling with help from Tongan community-based organizations. The questions regarded demographic characteristics, and cancer-related knowledge, attitudes and preventive behaviors. The research settings were San Mateo, California and Salt Lake City, Utah. We analyzed the data using qualitative content analysis of individual interviews to identify themes. RESULTS: All but one of the 48 participants had migrated to the U.S. from Tonga. The average income was approximately $3100 per month and average household size was six. Fewer than half of participants had health insurance. The theme that cancer was equivalent to death was pervasive through all the responses. Weaknesses in the body and exposure to toxins in the environment were dominant themes in the causation of cancer. Leading a healthy life and prayer were among the preventive measures cited by the respondents. CONCLUSION: The association of cancer with death is a strong indication that cancer information is not reaching this community. Interventions must take this into account and include Tongan cancer survivors in order to enhance the effectiveness of early screening efforts.

Legacy of the Pacific Islander cancer control network.

The groundwork for the Pacific Islander cancer control network (PICCN) began in the early 1990s with a study of the cancer control needs of American Samoans. The necessity for similar studies among other Pacific Islander populations led to the development of PICCN. The project's principal objectives were to increase cancer awareness and to enhance cancer control research among American Samoans, Tongans, and Chamorros. PICCN was organized around a steering committee and 6 community advisory boards, 2 from each of the targeted populations. Membership included community leaders, cancer control experts, and various academic and technical organizations involved with cancer control. Through this infrastructure, the investigators developed new culturally sensitive cancer education materials and distributed them in a culturally appropriate manner. They also initiated a cancer control research training program, educated Pacific Islander students in this field, and conducted pilot research projects. PICCN conducted nearly 200 cancer awareness activities in its 6 study sites and developed cancer educational materials on prostate, colorectal, lung, breast, and cervical cancer and tobacco control in the Samoan, Tongan, and Chamorro languages. PICCN trained 9 students who conducted 7 pilot research projects designed to answer important questions regarding the cancer control needs of Pacific Islanders and to inform interventions targeting those needs. The legacy of PICCN lies in its advancement of improving cancer control among Pacific Islanders and setting the stage for interventions that will help to eliminate cancer-related health disparities. Cancer 2006. (c) 2006 American Cancer Society.

Addressing the cancer control needs of Pacific Islanders: experience of the Pacific Islander Cancer Control Network.

PURPOSE: This paper describes the accomplishments of the Pacific Islander Cancer Control Network (PICCN). PICCN's objectives fall under two broad categories: increasing cancer awareness and enhancing cancer control research among Samoans, Tongans, and Chamorros. METHODS: PICCN established an infrastructure for addressing the goals that include the University of California, Irvine; the UCI Chao Family Comprehensive Cancer Center; and community-based organizations (CBOs) in areas where large numbers of Pacific Islanders live. Activities that increase cancer awareness include assessing existing cancer education materials, developing new culturally-sensitive materials, and distributing the materials in a culturally-sensitive manner. Activities that enhance cancer control research include training Pacific Islander investigators and providing them with mentors to help with the development of research projects. RESULTS: During the four project years, PICCN has conducted more than 180 cancer awareness activities in its six study sites: Carson, CA; San Mateo, CA; San Diego, CA; Salt Lake City, UT; American Samoa; and Guam. PICCN members have also participated in conferences and lead discussions about the importance of clinical trials for Pacific Islanders. In addition, the Network has trained nine Pacific Islander investigators (three individuals from each ethnic group) in its cancer control academy. Finally, PICCN investigators are conducting pilot research projects that will answer important questions regarding the cancer control needs of these Pacific Islanders and set the stage for interventions aimed at addressing the needs. CONCLUSION: PICCN is advancing the national goal of eliminating cancer-related health disparities through its cancer awareness and research activities for Pacific Islanders.