Researching with Pacific Islanders in Southern California

In 2005, the WINCART collaborative was founded as one of 25 community net-work programmes funded by the U.S. National Cancer Institute’s Center to Reduce Cancer Health Disparities. Serving approximately 100,000 Pacific Islanders liv-ing in southern California, the mission was to reduce the disproportionate bur-den from cancer affecting five of the largest Southern California Pacific Islander populations: Chamorros, Marshallese, Native Hawaiians, Samoans and Tongans. The partnership included two academic partner organisations (California State University, Fullerton; and Claremont Graduate University School of Global Health) and eight community-based partner organisations (Orange County Asian Pacific Islander Community Alliance; Tongan Community Service Center; Samoan National Nurses Association; Guam Communications Network; Pacific Islander Health Partnership; Ainahau O Kaleponi Hawaiian Civic Club; Union of Pan Asian Communities; and Sons and Daughters of Guam).

Between 2005 and 2015, 12 research projects were executed with thematic foci on breast and cervical cancer, HIV, HPV, physical activity and nutrition. The projects used a range of quantitative, qualitative, mixed methods, and quasi-experimental approaches (Schmidt-Vaivao et al. 2010; Tanjasiri et al. 2011, 2019). The overall goal of the work was to address cancer health disparities by developing and implementing programmes to increase cancer awareness; explore community knowledge, attitudes and beliefs regarding risk and protective factors; and enhance culturally competent primary prevention, service access, navigation and survivorship. Working closely with community researchers was central to all the projects, and one specific aim of the programme was to increase the number of trained Pacific Islander researchers through training, mentorship and participatory research experience.

At the start of WINCART, Pacific Islanders in Southern California were already accustomed to different forms of collaboration. For instance, interdependence - which relies on social and community collegiality and cooperation - is a common feature of Pacific Islander cultures (Sripipatana et al. 2010). This manifests itself in cross-Pacific Islander collaboration in local social service provision and pan-Pacific Islander cultural festivals. However, there were also important differences between Pacific Islander groups, not only culturally and historically but also in ways directly relevant to the health disparities research we were doing. For example, Southern California Pacific Islander groups held variable immigration and citizenship statuses affecting health benefits eligibility (e.g. US states versus US territories versus sovereign states; Indigeneity; Compacts of Free Association). There was also unique cancer epidemiology in the source countries of Pacific Islander immigrants. The WINCART projects provided a

Equity and rigour in peer research 37 formal structure in which these diverse Pacific Islander groups could leverage the strength of their shared cultural backgrounds while acknowledging the unique attributes of their communities.

Working with community researchers on WINCART projects

All projects depended on community researchers who were members of local Southern California Pacific Islander communities. In most cases, community researchers were staff members at the Pacific Islander-serving community-based partner organisations; several projects were led by Pacific Islander investigators based at academic institutions. Most community-based partner organisations did not maintain research staff on a full-time basis, so community researchers usually occupied additional roles, such as health educators, health practitioners, case managers, programme staff and administrative personnel.

Nearly all staff at community-based partner organisations had a similar ethnic background to the Pacific Islander communities they served. This was helpful in providing culturally humble services and programming. Shared ethnic identities allowed staff to better navigate cultural norms, expectations and taboos and ensured linguistic competency for monolingual clients. Many staff members also brought other identities and relationships that served service provision and research needs - including access to religious denomination networks, extended family networks, school alumni associations, generational associations and other geographical areas of Southern California. These ‘peer’ relationships and shared identities were critical in helping project staff fulfil their roles as service providers and community researchers, alike.

Academic and community researcher collaboration

Initially, the role of the academic partners centred on managing the research projects, strengthening the scientific process and maintaining relationships with funding agencies. In contrast, the role of the community partners centred more on engaging communities in study implementation and enriching the process with community insights. With time, however, the collaborative grew beyond those roles. Over the 10-year period, the collaborative invested heavily in building the capacity of community-based partner organisations to respond to emerging research opportunities, establish sustainable research and administrative structures, and train other Pacific Islander scholars to conduct research in the future. Community researchers leveraged their community access to raise awareness about research within their informal relational networks. As a result, over time, communities became increasingly familiar with research processes and associated issues related to power dynamics, expectations about the benefits of research, and meanings of risk to participants and their communities. Building community capacities around research was a collective undertaking by all members of the collaborative, intended to enable community researchers and participating communities to be equitable partners in rigorous research.

Community researchers were partners on, and in some cases led, all parts of the research process - from the identification and approval of research opportuni' ties through to study implementation and data collection, research oversight and governance, and dissemination of findings. They were able to draw upon their community connections and cultural perspectives to make substantive contribu-tions in each of these areas. Formal training was provided to community research' ers by representatives from academic and more experienced community-based partner organisations on topics including study design, quantitative and quali-tative data collection and analysis, and research dissemination. A mentorship programme for researchers from participating communities - from undergraduate to postdoctoral level - was also implemented to further bridge the gap between academic and community researchers. The project responsibilities of community researchers and community-based organisations subsequently broadened as they strengthened their technical skills through this training and their direct experi' ence on projects. Community researchers presented and co-presented findings at academic conferences and co-authored peer-reviewed publications. In turn, academic research partners received training to enhance their ability to work respectfully, effectively and inclusively with community stakeholders in research. Community stakeholders included not only partner organisations within the collaborative but also elders, religious and social group leaders, local health and social services providers and regular community members who were not part of the research teams. This training typically took the form of informal coaching by other academic partners who were more seasoned in community-based participatory research, but it also offered opportunities for community researchers and community stakeholders to provide guidance on key cultural relationships and dynamics.

Projects undertaken as part of the collaborative were overseen by a collaborative-wide steering committee with a peer researcher majority, and separate project-specific community advisory boards. These committees and boards were responsible for helping all research partners navigate challenging situations, including issues of mutual trust and credibility, managing Pacific Islander reli-gio-cultural taboos, and overcoming fears of community gossip (DiStefano et al. 2013), as well as balancing concerns of research equity and scientific rigour with the aim of maintaining a just and productive research experience.

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