1.1 What is a community group?

A community group is a social unit of any size that shares common values. Embodied or face-to-face communities are usually small. The identity of the participants and their degree of cohesiveness is affected by conditions such as intent, belief, resources, preferences, needs; risks may be present and shared in common.

When members of communities work alongside the researcher to plan and implement the research findings, the activities then make sense for those directly affected, the community members themselves. This strategy assures the empowerment of the community group and the development of ownership of actions to reduce health disparities outcomes.

1.2 Academic-community relationships

While the partnering of academic researchers with community groups has shown promising and sustainable results, the continued distrust of researchers and the research enterprise by many racial/ethnic minorities and indigenous populations have been well documented [3,4]. Ethnic and racial populations have experienced generational cultural trauma and racial/ethnic exploitation. Often social research findings portend a negative context and an escalation of mistrust [5]. Yet, ethnic and minority populations are most at risk for poor health outcomes and their participation is vital for translational research studies.

1.3 Community-based participatory research

The CPBR methodology is widely recognized for engaging communities in research [6]. Community-based Participatory Research (CBPR) is a methodology with potential to address challenges of translating research findings into community actions and overcoming the fears of partnering with academic researchers in general. The CBPR method addresses many of the barriers in the traditional researcher-subject relationship, including mistrust [7], challenges to power sharing [8], lack of engagement by the participants, and lack of sustainability of programming in community settings [9].

The practice of CBPR has evolved over the past 20 years as a research methodology that bridges the gap between science and practice through community engagement and social action to increase health equity. The goal is to make research more responsive to existing needs and to enhance a community’s ability to address important health issues. Thus, successful implementation of the CBPR process is contingent on a collaborative process between community-based organizations and academic investigators [10].

The CBPR approach has been successfully utilized in health disparities research collaborations with disenfranchised small faceto face communities who share common health disparities [11]. This approach is appealing to communities because it prioritizes community-cultural engagement, inter-personal relationships, and includes the community voice throughout the entire research process.

The development of research partnerships between academic institutions and members of communities facilitates active engagement in a mutual process which is used to address an issue of concern of the community group. Typically the selected issue represents a health disparity experienced by the community group. The goal of the CBPR process is to empower the community group to develop their own capacity for developing a realistic and achievable solution to the issue. Solutions that are generated by the community group have the group’s buy-in, and are thus more sustainable. One of the roles of the academic researcher is to provide the community group with knowledge generated from research findings. The community group then translates the knowledge into actionable steps which the group then implements and later on, uses their own results to form their own health policies.

The community group is known as the ‘community partner’ in the CBPR methodology; the academic researchers are known as the ‘academic partners’. The success of the CBPR approach results from equitably partnering academic researchers and community partners. The expertise of the academic partner informs the research design. Since the community partners are those directly affected by the health disparity, they are knowledgeable of the local circumstances that impact health and the feasibility of intervention approaches [12,13]. The success of the community-based research project is determined by the collaborative investment in team building, sharing resources, and mutually exchanging ideas and expertise [14-16].

More recently, the literature has begun to address contributions of CBPR to the development of intervention research [17]. Health equity is best achieved when academic researchers form collaborative partnerships with communities. CBPR expands the potential for the translational sciences to develop, implement, and disseminate effective interventions across diverse communities through strategies to redress power imbalances; facilitate mutual benefit among community and academic partners; and promote reciprocal knowledge translation, incorporating community theories into the research [18].

Two potential facilitators to CBPR participation are suggested in the literature. The first is the attributes of the participants: ability to collaborate [19], and capacity for reflection [20]. The second are the situational processes: collaborative responses to challenges [21], group process and conflict techniques [22], and sharing of power and influence [23].

The existing literature tends to focus on either descriptions of researchers’ perspectives in working with academic-community collaborations or the spectrum of strategies used by researchers to engage community members [24-28]. The present study contributes to the literature by (1) assessing the perspectives of community participants about engaging in CBPR and (2) developing a model to guide academic-community partners’ approach in their community interface. The model is developed from our assessments of how community partners perceive what works, what doesn’t, and the relationship between their involvement and nature of the research.

2.1 The Study Investigators

The Hui A'oIkaika research team is composed of a senior faculty member representing a large school of nursing at a flagship university (academic partner) and three community collaborators (community partners): the projects coordinator andprograms director of a Native Hawaiian health services organization, and a social services director of a locally based human services organization The literal translation (hui = group, a'oikaika = discipline) has symbolized the group’s transformational endeavors as an academic-community partnership. In the process of providing community-based training to research partners [29], we realized that while many resources existed about how to engage in CBPR, yet there were few resources about the community’s expectations of approaches of data collectors within their neighborhoods. This led to the development of our study [30].

3.1 Study advisory board

We used a series of qualitative methods to address the research question. Prior to designing the interview guide, we developed a community advisory panel which consisted of ten native Hawaiian elders. The advisory group represented grass roots organizations and individuals with experience in community-based research methods. The advisory board provided oversight of the study, assisted with developing the tools for the key informant interviews and focus groups, identifying and recruiting participants. Informant interview questions were finalized and piloted with the advisory group. The interview guide represented expectations of community members about engaging in participatory research (Table 1).

Table 1: Key informant interview questions.

3.2 Participant identification and recruitment

A diverse group of native Hawaiian community-dwelling participants was purposively sought. Individuals who self-identified as espousing native Hawaiian cultural lifestyle and viewpoints were eligible to participate; it was not necessary for the individuals to meet the contemporary legal definition of “native Hawaiian”, which is a “descendant with at least one-half blood quantum of individuals inhabiting the Hawaiian Islands prior to 1778.”

In the State of Hawai‘i, five Native Hawaiian Health Care Systems exist. This research was performed under the auspices of Ke Ola Mamo, which is the largest native Hawaiian Health Care System in the State of Hawai‘i and encompasses the Native Hawaiian Community on the island of O`ahu. Since the Health Care System covers the entire island, the four local native Hawaiian communities representing the four service districts were included. The districts also provided representation of differences between rural vs. urban locations, socioeconomic status and participants’ experience in CBPR methodology. The project was determined exempt by review of the Institutional Review Boards of the University and the Native Hawaiian community.

3.3 Protocol development and data collection

The staff (N=8) of the community partner organization received community-based focus group implementation training by the academic partner. The community outreach staff, who are trained assistants representing native Hawaiian communities, were the core audience of the training. While only three outreach staff were ultimately engaged in conducting the project’s focus groups, one of the tenets of the CBPR approach is to engage community partner organizations in the entirely of the process. The purpose of this transparency aims to benefit the community-based organization in terms of development of academic-community partner camaraderie, trust development of the research process, and knowledge about use of community participation as an assessment methodology.

The outreach staff engaged in network or snowballing sampling techniques within the four service regions for the focus group recruitment. Data collection consisted of digitally recorded openended and semi-structured focus group interviews, addressing community members’ perceptions of CBPR. The focus groups were informally scheduled, based on the convenience of the individuals in that community local. For example, the outreach staff interviewers spontaneously convened a focus group if a minimum of 3-5 interested individuals were present. This strategy was used to increase the convenience of community members’ participation. Twenty focus groups ranging in duration from 30 to 60 minutes were accomplished. The Hui A'oIkaika research team provided procedural oversight, methodological and technical support for from behind the scenes and debriefing for the three outreach staff interviewers.

This process developed several outcomes consistent with the CBPR methodology: (1) power sharing between the Hui A'oIkaika research team and the outreach staff interviewers who represented several different communities; (2) trust facilitation from the research team to the interviewers, and from the outreach staff interviewers to the participant members representing local communities; and (3) mentored research skill development by the academic partner.

5.1 Theme 1: Reciprocal trust is needed between the academic researcher and the community partners.

In order to develop trust, participants identified expectations of the researchers as they approached the community. The notion of “circles of relationships” evolved. The “circles” represented different boundaries in relationships between researchers and community participants. For example, prior to entering into a collaborative approach, a boundary perceived by community members was the need to develop respect for the needs of the community first before introducing what the research team would lend to the process.

The notion of the “circle of relationship” was also depicted as the research team’s role to bring [new] information from outside the community’s “circle”, e.g., news of related events from other communities. Knowing the experiences of other communities provides a springboard for negotiations with the research team. These types of negotiations represent boundary settings. There was an expectation that researchers must be flexible to changes in the relation boundaries that occur as the research project evolves.

An expectation was the researchers had responsibility to take the lead to build relationships with the community. The research team was seen as the entity entering the neighborhood domain.

There was general agreement that the context /activities of research activities gave meaning for research. The topics, even if proposed by the academic partners, will determine the amount of energy to be invested. There are many perspectives of the worthiness of a topic.

Respondents indicated a gradient of how much to invest in community-based research participation. There was a general agreement that individuals had a choice about participating. Participants pointed out their power to not participate and cause the project’s demise or in contrast, to contribute some type of expertise to enhance the project.

5.2 Theme 2. Perceptions about the purpose, research intent and expectations led to the vetting of researchers

Respondents identified key beliefs that research teams should match the community’s culture, norms and mores. Patience is needed to determine the types of researchers who can blend with the community. Routine and casual interactions were identified as important in the researcher selection process. The participants expressed it was the responsibility of the research team to adapt themselves to the culture in the community. The main viewpoint may be summarized as the fit of the research agenda with the community’s realities. Four supporting key viewpoints guided how communities elected to partner with research teams.

• Personal relationships were conveyed as key to establishing the credibility of the research team. These included personal connections, word of mouth, as well as past knowledge and experience. Specific individuals were identified to meet the community’s needs.
• The local media was depicted as a credible source for obtaining assistance in research engagement. Participants conveyed an underlying expectation of the “distance” to which their community problems should be ‘broadcasted” in their quest for seeking assistance. Going too far was seen as “showing the dirty laundry” yet not reaching far enough would not bring the needed resources. For example, use of the local media provided the vehicle for fostering interaction among communities with neighboring communities, while broadcasting the issue throughout a city may be deemed too broad in scope. Participants described using the local media to create, share or exchange information and ideas in among networks. Several social media options were named, such as Face Book, local radio stations and the local TV station “`Ōlelo”. One active community developed a network called “Red Alert”, consisting of simultaneous use of several modalities, such as email blasts, posting on bulletin boards, and word-ofmouth to keep their community members informed.
• Existing local organizations and groups were identified. Institutional factors perceived to aid communities were ones that made use of existing community structures, provided an array of needed services, and had knowledge of how the local system worked. Participants described establishing trustable linkages in a “step ladder approach” – that is, building relationships one stepat- a time. The view held by the group was that the community trusts its own members, and hence, the agencies if some of their own were employed at the site.
• Finally, community gatherings were identified as mechanisms to garner and locate resources for addressing the community issues. The benefits of this approach enabled participants to use all three modalities: knowledge of personal relationships, evaluation of local media, and sorting through local organizations based on others’ experiences.

5.3 Theme 3. Expectations of roles and responsibilities of the researcher(s) reflected meaningfulness of the interaction

Many participants assigned attributions to the research team which then influenced the depth of the CBPR partnership. The research team is expected to balance their participation with other roles and responsibilities. Comments focused on the team’s performance at multiple levels of investment. The levels of community investment were described in terms of strength, ranging from weak to strong.

Five areas were identified that include the research team’s prior knowledge of the community, their actions and appearance, gaining community support, and the researchers’ characteristics.

Participants identified the importance of knowing the community before coming into it. Respondents indicated a strong sense that each community is different. The research team’s experiences with one group may serve as a guide for their approach to another group, but there is always a need to address the unique differences.

Research teams’ actions before, during and after the interactions in the community were evaluated by the participants. Participants’ expectations were that research teams use approaches to foster community collaborations. The research team was seen as given responsibilities in exchange of entering the community and collecting data. These responsibilities focused on professional, responsible and ethical conduct of research.

There was high agreement of the need to gain community support. For example, gaining support included making sure the research is needed by the community, entering into the community, and being open to the specific situation-at-hand.

The researcher characteristics were also noted as either facilitating or posing a barrier when interfacing with the respondents. There is an intricate network within each community. As researchers enter the community, a process of decoding community expectations is needed.