Barriers And Facilitators To Community-Based Participatory Mental Health Care Research For Racial And Ethnic Minorities

Abstract

People with serious mental illnesses, particularly members of racial and ethnic minority groups, are rarely included in prioritizing research topics or developing the tools and measures important for improving their care. Community-based participatory research holds promise toward reducing mental health disparities. However, initiating research partnerships with community stakeholders is challenging and does not always lead to sustainable community health improvements. Using lessons learned from a project to improve understanding of patients’ preferences and discrimination in depression and diabetes treatment, we describe barriers and facilitators to initiating a meaningful partnership with disenfranchised groups. Barriers fell within four domains: trepidation of community stakeholders, complex research methods, uncertainty among academic partners, and unclear partnership decision-making protocols. Primary facilitators included the meaningfulness of the research topic to the community, the presence of a well-established community-based organization, academic financial investment, co-learning activities, and flexibility. Successful initiation of these partnerships holds significant potential for addressing health care disparities.

People with serious mental illnesses, particularly members of racial and ethnic minority groups, face significant obstacles engaging in ongoing treatment, with high treatment dropout rates. Mental health services generally do not take into account clients’ treatment preferences or sociocultural barriers specific to members of racial and ethnic minority groups.¹ People with serious mental illnesses are rarely included when developing clinical and research tools and measures, prioritizing research topics, defining ideal outcomes, or developing and implementing mental health research projects.²

Partnerships among academic researchers, clinicians, and community-based patient advocacy groups that include members of underrepresented minority groups can improve understanding of patients’ health care preferences and promote the meaningful engagement of people with serious mental illnesses in their treatment and in behavioral health services research.³ Community groups have knowledge about vulnerable populations’ most urgent needs and effective methods for meeting those needs. Academic partners and clinicians bring the frameworks, resources, and theoretical knowledge needed to create and evaluate interventions and services but are often not well connected with community members.³

Research partnerships that aim to drive social change based on community needs often use the principles of community-based participatory research, in which community members participate in all aspects of the research and share equitably with researchers in decision making, coalition building, and ownership of research products.⁴ Community-based participatory research recognizes the unique strengths of all stakeholders and aims to sustain research outcomes by developing research capacity among community members.⁴ These partnerships facilitate “co-learning,” the reciprocal transfer of knowledge, skills, and capacity. Common barriers to these partnerships include mistrust and resource and power imbalances between researchers and community stakeholders as a result of misaligned incentives and goals, lack of familiarity with each other, lack of community capacity, and academic pressure to obtain institutional funding.⁴

These challenges are greater when community stakeholders are people with serious mental illnesses, who face high levels of stigma and discrimination.⁵ Researchers commonly stereotype people with serious mental illnesses as incapable and undependable, and these perceptions may extend to the leaders of consumer-led organizations serving this population.⁵ Given that people with serious mental illnesses are likely to have experienced forced, coerced, or degrading mental health treatment, they can bring a sense of alienation, indignation, or both to treatment-related research discussions.

In addition, community-based participatory health services research may be difficult to implement in racial and ethnic minority communities because these communities have experienced systemic racism and discrimination in health care service delivery and mistreatment in the administration of research.⁶ When community stakeholders include people who are members of racial or ethnic minority groups and who have mental health diagnoses, they face a double stigma—that is, multiple levels of prejudice and discrimination.⁷

A few recent studies have assessed the process and impact of research collaborations that include as partners people who have serious mental illnesses, are members of racial and ethnic minority groups, or both.¹ Most partnerships develop consumer or stakeholder councils by recruiting community members directly.^3,8 These partnerships have developed successful community-valued research projects, but there is little information on how the partnerships were launched and limited evidence that they redress power imbalances or build long-term community research capacity.

The start-up phase of such partnerships is the most fragile and chaotic:⁹ Partners are likely to have not worked together previously, there may be mutual mistrust, and community stakeholders often face power and resource imbalances when attempting to assert themselves equally.^9,10 Federally funded research grants face long delays between proposal submission and funding. During this time, academic and community partners may have limited contact and likely have not established decision-making rules, and community priorities may have shifted—leading community leaders to reconsider participating in the project. Several early-phase outcomes are common: Partners or individuals quit, or research decisions made to meet early deadlines may lack meaningful community input, which eventually results in poorer research outcomes, products, and impacts.^11,12

The majority of barriers at the start-up phase involve specific aspects of group dynamics.¹³ The group dynamics aspects are made up of the following domains: structural (such as partnership agreements), personal (core values held by partners), and relational (such as flexibility).

In this article we describe the start-up of a community-academic-clinical partnership with people with serious mental illnesses that adheres to the principles of community-based participatory research. We summarize the process by which this partnership was developed, identify the primary facilitators of and barriers to launching it, and make recommendations for others embarking on similar partnerships.

Development Of The Partnership

Academic researchers associated with a safety-net health care system were interested in studying the treatment preferences of members of racial and ethnic minority groups with serious mental illnesses, while involving community stakeholders in the research process. Colleagues referred the researchers to a consultant with community-based participatory research experience and lived experience of serious mental illness (this article’s first author), who—based on his assessment of their good intentions—introduced them to a local mental health peer advocacy organization. Despite its lack of trust in researcher intentions, the organization decided to collaborate with the researchers because of the appropriateness of the research topic and their trust in the consultant. Together, this group applied for a Patient-Centered Outcomes Research Institute grant to study patients’ preferences for depression and diabetes treatment and how health care discrimination may influence these preferences. This proposal was subsequently funded for a three-year study.

The first-year project deliverables included developing and fielding a national survey of treatment preferences and discrimination experiences among members of racial and ethnic minority groups, featuring a discrete choice experiment that elicited patients’ treatment preferences. The community stakeholders included members of the peer advocacy organization (people of various races and ethnicities in recovery from mental illnesses, trauma, and addictions), as well as community-clinical liaisons (community health workers and patient experience team members) at a safety-net health care system. Academic researchers included health services researchers and clinician researchers whose aim is to improve physical and mental health in diverse communities. The community-based participatory research consultant was included to enable rapid team development. For a graphical description of the components of this community-based participatory research partnership, see online appendix exhibit A1.¹⁴

The researchers collaborated with a peer advocacy organization rather than with individual peer advocates to strengthen community voice, reduce power imbalances, and thus build community research capacity. The organization was selected because it had stable leadership and infrastructure to support active involvement, and it had served as community gatekeepers in other research projects. The organization is recognized as a leader in consumer-led advocacy for people living with mental illnesses and has years of experience gaining the perspective of and developing leadership among people living with mental health conditions from multiple marginalized communities (including black, Hispanic, and Asian and Pacific Islander Americans). Other than joint work on the proposal with the community stakeholders, little partnership was in place at the outset. Accordingly, four community-based participatory research principles guided stakeholders’ involvement: inclusion, education and training, clear communication, and individualized attention To achieve inclusion, the partnership included as equal members community stakeholder representatives from diverse racial and ethnic backgrounds with serious mental illnesses from the peer advocacy organization, together with a diverse team of community-clinical liaisons who interact regularly with patients. Education and training efforts included cross-trainings intended to create a more equal partnership. These were interactive seminars where community stakeholders learned about research design and methods, academic research partners learned about community and patient perspectives, and trust-building exercises were conducted to allow all team members to share experiences with the mental health care system. We developed clear communication through regular group meetings and one-on-one individual meetings between academic researchers and community stakeholders. Individualized attention was given as needed and included team meetings held at community stakeholders’ sites, in-person discussions (often following team meetings), and partner-specific phone calls or email communications. The community-based participatory research consultant coordinated education and training efforts, monitored group cohesion, and worked to maintain active community stakeholder engagement. Appendix exhibit A2 describes the project activities that were planned to fulfill each of the four community-based participatory research principles.¹⁴

Study Data And Methods

METHODS TO IDENTIFY FACILITATORS AND BARRIERS

To identify facilitators of and barriers to launching the partnership, we borrowed principles from case-study methodology, a qualitative research method that empirically investigates a contemporary phenomenon within its real-life context.¹⁵ Four main data sources were used: group meeting observations (for example, notes and attendance from team meetings and cross-trainings); postmeeting debriefings of the academic researchers; informal interviews with team members (two representatives from the peer organization, three community-clinical liaisons, and three academic researchers); and meeting agendas, attendance sheets, and minutes. The debriefings and informal interviews posed four key questions: Is the purpose of the collaboration clear? What have been the challenges and facilitators toward implementing this collaboration? Are we making progress to accomplishing our objectives? What have been the benefits of this collaboration? At partnership team meetings and during debriefings and informal interviews, community stakeholders were forthright in voicing concerns regarding partnership development. The academic researchers, when necessary, encouraged community stakeholders to describe these concerns so they could be better understood and collaboratively worked with community stakeholders to identify solutions to overcoming these concerns.

DATA REVIEW

Data were systematically reviewed by the study authors, who included the community-based participatory research consultant, three academic researchers, and two peer advocacy organization members.¹⁶ The consultant and two researchers identified draft themes based on the data and presented them in writing to the other authors, who offered new and different perspectives and suggested changes. After authors reached agreement on the themes related to the facilitators of and barriers to initiating the partnership, they were shared with other members of the larger partnership team, and those members’ suggestions were incorporated. The authors then developed a list of key strategies for initiating a robust community-academic-clinical partnership.

Bias and subjectivity are inherent when attempting to summarize in-depth processes in a real-life context. To minimize this concern, we triangulated numerous sources of data across multiple research analysts and reviewers and continuously reviewed data and themes to address contradictions.

Study Results

BARRIERS

Barriers fell into four domains: concerns and trepidation of community stakeholders, the complicated nature of the project’s research process, uncertainty among the academic researchers about how to use community-based participatory research principles to add value to the partnership, and unclear partnership decision-making protocols (exhibit 1).

Exhibit 1.

Barrier domains and strategies observed to overcome barriers

Barrier domain	Strategy observed to overcome barrier
Community group concerns and trepidation	High relevance of research topic Co-learning activities Development of individual relationships and individualized attention to partners and individuals
Challenging research process or methodology with tight deadlines	Community research trainings Established communications channels, such as regular meetings
Academic researcher uncertainty about community-based participatory research and its value and process	Demonstrated commitment through leadership example and funding set aside Well-established strong community group gatekeepers
Undetermined decision-making and other partnership protocols	Mutual respect Mutual flexibility

SOURCE Authors’ analysis of qualitative project data.

Regarding trepidation of the community stakeholders, the peer advocacy organization staff members were concerned that they were not receiving full information on how the findings and research would be used. These sentimentsarose in part because the organization had been invited to participate in or been involved in several research projects over the previous twenty years, but without sufficient funding and support for active participation. During those prior experiences, the organization found that its ability to contribute value was limited and its role minimized (for instance, people felt that they were treated as a token community stakeholder in a previous advisory board experience). Because they were serving as the gatekeeper for consumer involvement, their noncooperation or exit from the study would have slowed things down considerably and perhaps ended the project.¹⁷

The peer advocacy organization, like many similar groups that organize disenfranchised groups, was stretched because of its broad scope of activity: providing training, developing and providing peer support initiatives, and advocating for its constituents. The overall budget of the advocacy organization was not research driven, so this relatively small research project was potentially disruptive because it required the diversion of skilled staff members from other prior-funded projects that were more immediate and central to their operations.

The complicated nature of the research project was especially salient here because the academic research team proposed a discrete choice experiment to assess patients’ preferences for different attributes of depression and diabetes treatment—a fairly complex method of preferences elicitation that was new to the community stakeholders.

There was uncertainty among the academic partners about how to operationalize community-based participatory research principles. The first-year research deadlines, combined with an emphasis on partnership-building activities and the complex research methodology, created a tension between a goal-oriented, timeline-driven research agenda and the slower and less linear process of trust and relationship building.

Unclear decision-making rules constituted the fourth major barrier. While the proposal identified the broad scope of partnership plans, the process by which specific decisions were made was unclear during the launch of the project. Questions arose as to when decisions should be made jointly and when they could be handled solely by the academic research team. These included both research content decisions, such as what measures would be used to elicit certain constructs in the survey, and plans to implement the piloting and refinement of the survey. There was skepticism among the community partners about whether they would play a meaningful role in these decisions, particularly since much of the research process had been defined in writing the grant proposal.

FACILITATORS

We identified eight facilitators that helped overcome these barriers to successfully launching this research partnership.

▸ MEANINGFULNESS OF THE RESEARCH TOPIC:

The research study topic was in line with community stakeholders’ strategic priority to address racial and ethnic equity in access to mental health treatment by understanding and promoting policies and practice changes that are community responsive and culturally relevant.

▸ FINANCIAL INVESTMENT IN THE COMMUNITY PARTNERS:

The grant set aside significant funding for the community-clinical liaisons and peer advocacy organization to assign qualified staff members to actively participate in the research, including preparation and engagement in team meetings, survey development, data review, and co-learning activities (for example, preparing for and taking the required human subjects exam). These financial agreements were critical in fostering trust and ensuring that community stakeholders felt valued and compensated for their input. This overcame a common pitfall of other partnerships that expect community members to “donate” their time.

▸ INCLUSIVE LEADERSHIP:

Leaders of the academic research team and the peer advocacy organization shared several leadership traits and values that promoted effective collaboration. They were considered by team members to be friendly, calm, approachable, and credible in their respective areas of expertise and their commitment to the partnership. In addition, leaders demonstrated “cultural humility,” an attitude of being open and willing to learn what one does not know about another’s cultural worldview and conceptions of mental health, with humility and respect.¹² Leaders gained commitment and broader approval through what one community stakeholder and coauthor called a “give-and-take” process that addresses power imbalance.

▸ KNOWLEDGEABLE AND EXPERIENCED COMMUNITY RESEARCH GATEKEEPERS:

As both a researcher with experience leading other participatory research projects and a member of the peer advocacy community, the consultant performed a broker function between the peer advocacy organization and the academic researchers. For example, when members of both groups were frustrated and confused about their respective roles in establishing community engagement while meeting tight grant deadlines, the consultant helped navigate the conflict by encouraging in-person meetings and coaching both groups to better understand each other. During these meetings, clarity of roles was discussed, personal experiences were shared, and community stakeholders provided suggestions to improve communication and partnership development based on their negative prior experiences with researchers. For community stakeholders of color with lived experience with serious mental illnesses, these meetings were important, because team members arrived at an improved understanding of community stakeholders’ experiences of being oppressed and the high value they placed on justice, freedom, and empowerment. Through this process, the peer advocacy organization and project consultant strongly emphasized meeting the priorities of community members. The peer advocacy organization continued to engage with and be informed by the perspectives of people of color with mental health conditions outside of meetings and presented a perspective enriched by this context to researchers.

▸ REGULAR TEAM MEETINGS AND CLEAR COMMUNICATIONS:

Monthly or bimonthly team meetings provided the team with an understanding of the overall progress of the project and a feedback loop to monitor how changes in research activities and cross-trainings influenced group dynamics. The academic researchers helped community members prepare for and process meetings by creating succinct materials about the research process, such as tables and graphics. During meetings, academic researchers obtained feedback on specific measures of the survey instrument and strategies for recruitment and administration of the survey. A community stakeholder reported that having food and drink at these meetings gave the impression of nurturance, positive regard, and being valued as a special guest whose input was seen as important.

▸ CO-LEARNING ACTIVITIES:

Co-learning during the launch of this partnership primarily took the form of cross-trainings and collaborative activities. In several cross-trainings the academic team described relevant research methods, including survey development and discrete choice analysis, and community stakeholders appreciated being treated as valued team members. Staff of the peer advocacy organization presented to team members on the role of peer support in improving mental health services. Community stakeholders also facilitated the reporting of stories from all team members of their personal experiences of interacting with mental health services, both positive and negative. Attendees identified provider- and system-level characteristics that were helpful and made suggestions to improve those that hindered health and wellness. These suggestions were incorporated into the survey.

Collaborative activities were also used to discuss sensitive topics related to race, ethnicity, prejudice, and discrimination. For example, the peer advocacy organization led an exercise that stimulated open and honest discussion of the role of privilege within the research partnership. In another co-learning session, academic partners shared their background and stories of why the work of solving critical racial and ethnic mental health disparities and engagement issues was important to them. Academic researchers afterward reflected that although they had been collaborating for many years, they often had not heard these deeply personal stories of what drove researchers to the work. A community stakeholder and coauthor commented that during these exercises her thoughts, impressions, feelings, and experiences were valued without judgment, helping her see that she indeed had something to contribute to the partnership. These activities allowed members of the group to share their stories and connect on a personal level, which created a sense of attachment to the project and helped deconstruct the preconceived notions of power within the group.

▸ FLEXIBILITY:

Community stakeholders were flexible enough to forgo some early partnership-building activities to adhere to strict research deadlines. On the other hand, while the academic research team was engaged in detailed planning to meet project goals and deadlines, they were also willing to alter plans and ask for extensions from the funder as needed. Keeping the “big picture” goal in mind, community stakeholders and academic researchers adapted swiftly when needed, which reinforced trust and contributed to the collective nature of the project.

Academic research and clinical partners were flexible with their meeting schedules, added time for individual attention, and divided the sections of the research project goals into smaller objectives, making it easier for partners to find traction and relevance in the work. Academic researchers also frequently modified the study protocol to conform to changes brought about by community input on the survey instrument, data collection, and recruitment procedures.

▸ PERSONALIZED ATTENTION:

Academic researchers ensured that individual and staff community representatives were up-to-date with the research agenda, understood the development of the survey tool, and were granted the opportunity to air concerns in other venues besides the full group meeting. Personalized attention from academic researcher staff took the form of in-person meetings, telephone calls, emails, and texts.

EVOLUTION OF THE PARTNERSHIP OVER TIME

During the first year the team held seventeen partnership meetings, not including many other separate meetings within the research team: nine all-team meetings, four research trainings for community-based stakeholders, three individualized meetings each with community-based stakeholder teams, and one group outing (attending a local museum’s art exhibit about mental health stigma) (exhibit 2). On average, across all meeting types, 71 percent of these meetings included cross-trainings; 85 percent of attendees participated in-person (versus by phone), with a mean attendance of 12.1 people; and the average ratio of community-based stakeholders to academic researchers across all types of meetings was 1.1 (data not shown). Evidence of increasing strength of the partnership was that attendance was sustained over time and that the ratio of community-based stakeholders to academic researchers at the larger, all-team meetings increased over time from 0.5 to 1.0.

Exhibit 2.

Summary of key partnership activities in the first year of the partnership

Type	No. of meetings	Average no. of attendeesa	Average ratio of CSs to academic researchers	Average in-person attendance	Average with cross-trainingsb	Type of cross-training activity
All-team meeting	9	15.1	0.7	80%	78%	Interpersonal, professional, and research based
Research training	4	9.8	1.9	80	100	Research based
Individualized meeting	3	5.0	1.5	100	0	Interpersonal, professional
Group outing	1	15.0	0.9	100	100	Interpersonal

SOURCE Authors’ analysis of meeting minutes, attendance records, and agendas from the first year of the partnership project.

^aAttendees included only research partnership team members. Several of the individualized meetings included a number of additional staff members at the clinic or site location of the community stakeholder (CS).

^bCross-trainings included intentional activities to share personal or professional expertise between partners (for example, academic researchers or community-based participatory research consultant sharing research expertise or training with nonresearcher CSs, or CSs sharing professional or personal experiences with the research team leadership and staff).

Discussion

The initial process of building and committing to a community-academic-clinical partnership was complicated by the intersecting types of marginalization experienced by patient groups with serious mental illnesses from racial and ethnic minority backgrounds. Even when people of these communities are provided with resources to participate in a research collaborative, their consistent participation can be difficult to achieve if values of freedom, empowerment, and justice are not upheld. At the same time, academic researchers attempting to build these partnerships are often unaware of the lasting impact of community stakeholders’ prior experiences of these inequities.

The launch of the partnership described in this article faced barriers that are likely to be encountered by other researchers who attempt to incorporate authentic consumer voices into research, based on an initial lack of trust between academia and the community because of personal experiences and knowledge of historical incidents in which research harmed minority participants. These barriers usually represent the complexity of group dynamics¹³ of a partnership diverse in terms of education, income, race, ethnicity, first language, role function, and identified mental health history. Thus, most of the facilitators identified in this study addressed the characteristics, beliefs, and actions of the research team members. At the outset, group-level facilitators were put in place that addressed personal (for example, inclusive leaders) and structural (such as financial investment in partners and regular team meetings and communications) factors. This set the stage for the more relational facilitators (for example, co-learning and flexibility).

Accordingly, the peer advocacy organization members, the community-based participatory research consultant, and the community-clinical liaisons were positioned to ensure that the academic researchers provided sufficient time to deeply understand how people with serious mental illnesses, especially those from racial/ethnic minority backgrounds, experienced the challenges of the health care system. The allocation of time and resources to building this understanding was intensive but necessary to reaching a common understanding that helped the team meet early research goals while not losing the meaning and relevance of the research to community stakeholders.

Based on our findings and the literature, we propose five additional core elements to developing a sustainable partnership when working with people with serious mental illnesses from diverse racial/ethnic backgrounds.

First, researchers and other stakeholders must have a genuine commitment to working with organizations that represent disenfranchised people as co-partners; understanding their expressed challenges and hopes; and sustaining continued research, evaluation, discussion, and meetings to drive change. This requires that all partners understand that new partnerships are difficult to initiate and that planning, time, and resources will be necessary.¹⁷ Adequate funding needs to be budgeted for the explicit purpose of ongoing outreach, communication, and cross-training with community partners throughout the project.¹¹

Second, stakeholders—particularly academic researchers—must learn about the priority needs and preferences of consumer groups to see whether they are in alignment and approach conversations with a humble respect.^8,12 If they are not in alignment, it is important for the team members to understand and respect these differences. Otherwise, a partnership will be difficult to launch.

Third, partnership initiation with disenfranchised group members benefits greatly from stable and experienced community-based intermediaries such as the consumer research consultant and the peer advocacy organization, which had already organized capable staff and care priorities and has the capacity to help sustain the process. Organizational and consultant gatekeepers created smooth and direct connection to the communities, and regular meetings among partners led to the development of clear expectations of the parties.¹² With the peer advocacy organization serving as the gatekeeper and able to present a unified perspective to researchers, there was a more equitable relationship with the academic partners.¹³

Fourth, among and between partners, there should be open communication that includes “active reflection on implicit and explicit biases and collaborative strategizing to incorporate knowledge of existing biases constructively into community dialogue.”^6(p327) Building cross-training and co-learning activities into the initial team meetings was effective.³ Building trust with partners requires communications that are personable and respectful.^9–11

Fifth, to bridge the trust gap, academic researchers and consumer groups should be represented by effective and respected leaders who are empathetic and communicate respectfully, with a clear message.^9,11

Conclusion

The initial stages of establishing a meaningful research partnership can be challenging and costly. However, if these challenges can be overcome, the full participation of underserved groups in research holds great potential toward achieving a more informed understanding of how disparities in treatment arise, leading to the development of successful disparity-reducing interventions. Future research should assess how the lessons learned improve the development and outcomes of community-based partnered research with disenfranchised communities, as well as other types of collaborations between consumer groups and government entities, insurance companies, health plans, providers, and colleges or universities, whose aim is to partner with marginalized communities to improve health care.