Reservations to Participate in Biospecimen Research among Pacific Islanders.

BACKGROUND AND SIGNIFICANCE: Despite high rates of chronic diseases like cancer, diabetes and cardiovascular disease, Pacific Islanders (PIs) are underrepresented in clinical and genetic studies designed to identify the physiological causes of poor health outcomes. There are limited genetic data and biospecimen samples from PIs under study. This paper described why PIs have reservations about donating their biospecimen samples for research. METHODS: Data were drawn from a pilot study designed to assess the knowledge, attitudes and beliefs surrounding biospecimen research among PIs in southern California. Utilizing a community-based participatory research approach, community and academic partners collected quantitative and qualitative data from a total of 60 PI adults with a mean age of 61 years (SD 13 years). RESULTS: "Fear", "God or Spirituality" and "Lack of Information or Knowledge" were the most cited reasons for not participating in biospecimen research. Respondents younger than age 65 years expressed more concerns about donating their biospecimen samples than those older than age 65 years (p<0.012). No significant gender differences were found (p=0.84). CONCLUSION: Our results emphasize the need to conduct relevant and appropriate biospecimen education among minority communities in order to address misconceptions and build support to increase PI and other minority participation in biospecimen-related studies.

Use of a community-based participatory research approach to assess knowledge, attitudes, and beliefs on biospecimen research among Pacific Islanders.

Objectives. The purpose of this article is to describe a community-based participatory research pilot project conducted to investigate the knowledge, attitudes, and beliefs that Pacific Islanders (PIs) hold toward biospecimen collection, use, and banking, all of which will help drive higher PI participation rates in both medical and behavioral research studies. Method. Academic and community partners worked side by side to develop a conceptual model, study measures, and study protocols. PI community partners screened, recruited, and conducted data collection, which consisted of a paper-and-pencil survey and a 1-hour semistructured interview administered by trained community workers. Results. A total of 60 PI adults representing various PI ethnic groups completed the surveys and interviews. Results showed a general support for biospecimen studies that would benefit the community, and many are willing to provide their biospecimen samples if asked. Conclusion. Due to the established level of trust, community partners were able to successfully recruit and collect data for the study. Many of those interviewed also called for more outreach and education about the importance of biospecimen research in their communities.

Balancing community and university aims in community-based participatory research: a Pacific Islander youth study.

BACKGROUND: Community-based participatory research (CBPR) holds the promise of improving the planning, conduct, and long-term translation of research findings into community settings. OBJECTIVES: This 2-year, exploratory study applied CBPR structures and processes to the identification of individual, cultural and community factors associated with obesity among Pacific Islander (PI) youth in Southern California. METHODS: We describe the CBPR principles and strategies used by a community-university partnership to develop, implement, and report on the findings from assessments of obesity, physical activity, and nutritional intake among PI youth. RESULTS: Although CBPR planning processes led to successes in community-based youth recruitment and retention, we learned key lessons regarding implementation of tailored assessment protocols, often involving problems arising from the university side of the CBPR collaborative. CONCLUSION: CBPR has its strengths and limits; more studies are needed that report on processes to increase our understanding of how to balance research rigor with community sustainability.

Community Perspectives on Cultural Considerations for Breast and Cervical Cancer Education among Marshallese Women in Orange County, California.

The Marshallese community of Orange County California is a part of a highly mobile population that migrates between Hawai'i, Arkansas, Washington, and California. In Orange County, the Marshallese community is primarily centered on faith-based organization in the city of Costa Mesa. Culture and language strengthen the bonds between different Marshallese communities across the U.S., and churches serve as conduits for communication between groups. Culture also places an important role in guiding behavior pertaining to health and social interaction. For instance, as in many other cultures, Marshallese men and women do not speak to each other about health, particularly reproductive health, in an open social setting. In Orange County, one female Marshallese health educator promotes breast and cervical cancer screening by talking informally with women, usually in faith-based settings and in-home visits. This community commentary describes the key cultural considerations and strategies used by the health educator to reach and educate the community.

Talking Story: Using Culture to Educate Pacific Islander Men about Health and Aging.

Relatively little attention has been paid in the literature to strategies promoting the health of Native Hawaiian and other Pacific Islander (NHPI) men. To fill this void, a Native Hawaiian cancer survivor and a Marshallese minister in Orange County, California, founded the Kane Group to promote men's health information and support. This group is comprised of 10 to 15 NHPI men, ages 35 to 83, with a diverse background of experiences in the U.S. healthcare system and health conditions, including multiple site cancer survivors and/or co-morbidity and chronic condition, like high blood pressure, diabetes. The Kane Group provides social support and engages in discussions, using the island tradition of "talk story", to relate a variety of men's health issues from prostate cancer to physical fitness to end-of-life decision making in a supportive and safe environment. The group weaves Pacific Islander culture and values into the process and conduct of the support groups. This community commentary describes the innovative strategies, successes, and challenges that emerged with the development of the group that were designed to celebrate Pacific Islander men's health, provide information, fellowship, and support for the many who are facing health crises.