Community health workers as focus group facilitators: A participatory action research method to improve behavioral health services for farmworkers in a primary care setting

Abstract

Farmworkers living in US-Border communities experience numerous stressors in their daily lives that place them at risk for behavioral health problems, particularly anxiety and depression. Given challenges to accessing care, farmworkers are most likely to receive services in the primary care setting. In this paper, we describe a participatory action research (PAR) approach in which community health workers (CHWs) use focus groups to engage the patient population in discussing behavioral health issues and identifying preferences for care within a Federally Qualified Health Center. The CHWs were trusted members of the community who participated in the articulation of research questions, development and implementation of protocols, participant recruitment, and data collection. CHWs encouraged focus group members to represent their community in the co-construction of knowledge regarding perceptions of behavioral health and priorities for care. This research illustrates that CHWs, as representatives for patients’ needs and a bridge between the health care system and communities, can play a vital role as intermediate actors in generating patient participation in PAR.

Keywords

Participatory action research community health workers focus groups US–Mexico border farmworkers

Background

Farmworkers in the United States are a traditionally marginalized and nearly invisible workforce, despite their pivotal role in feeding the nation. The nature of agricultural work, which is made up of long work days, hard physical labor, and exposure to sun, dust, pesticides and other environmental contaminants, contributes to a high need among farmworkers for health services (Hovey & Magana, 2000). Accessing health care is challenging, however, given that only one in four farmworkers has insurance and many are discouraged from seeking care due to migrant status, language barriers, or loss of work hours (Arcury & Quandt, 2007). A comprehensive study of farmworker health in California found that only one in three male farmworkers had ever seen a doctor (California Institute for Rural Studies, 2000). It is in this context that Federally Qualified Health Centers (FQHCs), funded by the US Health Resources Services Administration, provide the major source of primary health care for farmworkers (Arcury & Quandt, 2007). Since 1965, FQHCs have provided a safety net for the uninsured and major source of care to those enrolled in public health insurance programs. The distinguishing characteristic of the program is the concept of community governance in achieving the main objective to provide holistic, comprehensive, and culturally competent primary care to low-income and medically underserved areas (Adashi, Geiger, & Michael, 2010; Shin, Sharac, Alvarez, Rosenbaum, & Paradise, 2013).

Their historical commitment to community guidance, accomplished most often through majority representation of those served on a governing board, makes FQHCs a natural partner in participatory action research (PAR) directed at improving access and quality of health care. PAR that is responsive to problems identified by the primary care facility and engages consumers directly in describing issues and preferred solutions has the potential to address systemic issues related to health care delivery. Involving farmworker patients in PAR, however, requires accommodating challenging occupational and economic realities in addition to coping with the hierarchical nature of the medical system that tends to discourage patient participation. In this paper, we describe and reflect upon a strategy to engage FQHC patients from the farmworker community in Yuma, Arizona in a PAR process to improve the delivery of behavioral health care in the primary care setting. Community health workers (CHWs), as representatives of community needs, were essential in involving patients in PAR because they effectively engaged patients in the co-construction of holistic definitions of emotional wellness and the prioritization of behavioral health services.

Study setting

In Yuma County, located on the Arizona-Sonora Border with Mexico, the FQHC is the primary care provider for approximately 5500 migrant workers and their families. South Yuma County is an important region for the US agricultural industry due to the climatic conditions that allow for a vital winter growing season. South County residents are over 90% Mexican/Mexican American and experience high levels of unemployment during the off-season resulting in economic hardship. Since 1987, the FQHC has collaborated with CHWs from community-based agencies to conduct health outreach to farmworkers. CHWs, known as promotores de salud in the Latino community, have been part of the health care system along the US–Mexico border for several decades. They are community members who work to increase healthcare utilization, provide health education, and advocate for patient needs (Rosenthal, Wiggins, Ingram, Mayfield-Johnson, & De Zapien, 2011). Working both inside and outside of the clinical setting, CHWs have an intimate knowledge of community issues, extensive awareness of community resources, and are considered leaders among their peers. The FQHC began hiring their own CHWs in 1998 to provide patient education and emotional support for diabetes self-care. Since that time, the FQHC CEO has gradually integrated CHWs into clinical services in an effort to increase personalized care and address needs related to chronic disease prevention and management.

As academic partners, the first and third authors on the study have collaborated with the FQHC over the past 20 years in various projects involving CHWs. We approached the FQHC in response to a specific grant opportunity to identify methods to engage patients in improving the quality of care, which seemed to us to be an ideal role for a CHW. The second author, the FQHC Outreach and Community Relations Manager and member of the farmworker community, learned about the CHW model as an employee in a grassroots organization. She raised the profile of CHWs in the health center first by educating providers about their unique contribution to patient care and then by identifying and communicating specific patient outcomes that would resonate with physicians. She, the researchers, and the CEO felt that this project was an opportunity for us to highlight and extend the role of CHWs as representatives of the community in the FQHC. Over the course of the project, the collaboration between the authors in facilitating CHW ownership of research activities transformed not only our research practice but also how the CHWs perceive and interact with patients related to behavioral health.

Farmworkers and behavioral health

There are many aspects of daily life that place farmworkers at risk for a range of behavioral health problems, particularly depression and anxiety. Farmworkers work extremely long hours during the peak agricultural season, suffer from unpredictable employment, and rarely have access to employment benefits such as health care, sick leave, and vacation. Other stressors include isolation from family and friends, worries about family and children, poverty and limited resources, poor housing conditions, unreliable transportation, discrimination, and exploitation by employers, which appear to be manifested in the behavioral health of farmworkers. Studies have documented high levels of depression (40%) and anxiety (30%) in the farmworker community (Hovey & Magana, 2002, 2000), particularly among women who experience anxiety due to the added burden of domestic responsibilities, sexual harassment, and lack of maternity leave (Alaniz, 1994). A recent household survey in Yuma found that 20% of farmworkers experienced depression for more than two weeks in the previous 12 months (Carvajal et al., 2012).

In spite of tremendous need, culturally competent and responsive behavioral health care services are not readily accessible due to lack of insurance, language, long wait times for providers, discontinuity of care, unavailability of behavioral health specialists, and perceived stigma associated with receiving such services (Croghan & Brown, 2009). In South Yuma County, those few farmworkers who are covered by federally-funded insurance are served by a regional behavioral health provider which provides most services 20 miles away in the city of Yuma. Thus, the FQHC by necessity addresses behavioral health as a component of physical wellness, particularly with respect to pediatric care, maternal health, and chronic disease management. For example, in caring for patients with chronic disease, primary care physicians find themselves treating behavioral health issues such as depression and anxiety that adversely impact the course of illness (Tew, Klaus, & Oslin, 2010). Attitudes of both patients and primary care providers toward depression and treatment pose challenges to successful primary and behavioral care integration (Van Beljouw et al., 2010). Our challenge was to use PAR in developing patient driven understandings of behavioral health and its treatment as an essential element of primary care (Ismail, 2009).

Approach/Methods

Broadly defined, PAR is a co-learning process in which the community is intrinsic to the development of knowledge and requires that those directly affected by the issue under study be involved in the research (Cargo & Mercer, 2008). In a review of PAR in primary care settings, Macaulay and her colleagues recommend that the involvement of community in every aspect of research will ground knowledge production in social and historical contexts and increase the likelihood that findings will be translated into actions that improve health. The inclusion of community ways of defining or experiencing health and illness is thus recognized as influential in health outcomes (Macaulay et al., 1998). Hampshire documents projects in which action research resulted in organizational changes to improve health care delivery and stresses that the impetus for organizational change is more successful when the research process is internal to the health organization. In these studies, the research team included members of the care team, with patient perspectives being collected through focus groups, questionnaires, observations, and clinical notes (Hampshire, 2000).

In the development of our PAR process, our inquiry was guided by the conviction that not only can patients best define and solve their problems, but that, as emphasized by Reason and Bradbury (2001), they have a right to do so. In thinking about how to define participation, we were inspired by the principles of popular education which seek to validate voices of those most affected but least recognized by the issues being investigated (Freire, 2003). Our aspiration was to involve patients more directly in a more comprehensive and holistic understanding of behavioral health problems and services. The challenge was to facilitate such involvement where we, the researchers, were remote from the study area, and lacked personal history, networks and relationships to build trusting interactions with patients. We turned to the CHW model to close this gap because it shares key principles with popular education in the value placed on community knowledge and community leadership (Wiggins, Hughes, Rodriguez, Potter, & Rios-Campos, 2013). Our prior experience in developing and evaluating projects with CHWs had taught us that CHWs are the ideal bridge to their communities because they identify themselves as community change agents whose actions seek not only to benefit the health of the community, but also to advocate for the rights of the patients. We believed CHWs could create a genuine process for patient involvement, and, already recognized as community experts by the FQHC, could also serve as intermediaries with the administration and other staff.

Co-construction of knowledge through a participatory framework

Koch, Selim, and Kralik (2002) describe PAR as a process through which members of a group work together to reveal and validate individual constructions of meaning as a step in the process of developing a shared and cooperative assessment of a situation which can then be acted upon. In the first phase of our study, CHW-facilitated focus groups provided an opportunity for researchers, clinic staff, CHWs, and patients to engage in the co-construction of knowledge about behavioral health in order to elucidate patient priorities in addressing behavioral health needs. For the purposes of this study, co-construction of knowledge is defined as the process through which focus group participants, CHW facilitators, clinic staff, and the research partners shape our understanding of emotional wellness, what causes illness within a social and cultural context, and how best to address it (Wilkinson, 1998a). The co-construction of knowledge through discussion and clarification is imperative because it allows context to become more central to the experience. The ways that farmworkers articulate their understanding of mental wellness and illness within the context of long working hours, financial obligations, status, and other concerns is central to their decisions to seek treatment (Basu & Dutta, 2007). Ultimately, our goal is to incorporate the patients’ perceptions about behavioral health into the protocols of the FQHC health care delivery system in such a way that patient preferences will be clarified and prioritized.

A focus group is designed as a group interaction in which questions are presented as themes that engage participants in an interactive discussion and produces insights that would otherwise not be revealed (Wilkinson, 1998a). Participants determine the language of the focus group, and the quality of the interaction reflects their cultural framework. Focus groups validate lay knowledge regarding health and wellness because they create an open forum in which each participant is encouraged to share, building on and sometimes disagreeing with, the statements of their peers. The process of the focus group was thus a co-construction of meaning regarding emotional distress and how to address it within the community, facilitated by representatives of both the community and the FQHC (Wilkinson, 1998b). The CHWs set the tone of the discussions by collaboratively forming the focus group questions and by acting as representatives of the clinic’s concern and commitment to the wellbeing of their patients.

The focus group as a participatory method is less than ideal: the subject matter is predetermined, in this case as behavioral health, and the role of participants is merely to provide information from a personal perspective, informing a research question or intervention, but not actually involving the community in guiding the research or developing an action agenda. In our case, these flaws are mitigated in two ways. First, the focus groups themselves legitimated the urgency of behavioral health needs in the prominence participants gave the issue in describing impacts on individuals and the community. Second, CHWs are arguably better able to reflect community interests than individuals. It is problematic to involve a handful of community members in the research process and be assured that these individuals in fact represent the community. The CHWs can more holistically represent community interests because this is their primary role. The CHWs also bring a wealth of experience interacting intimately with an array of community members.

In order to situate the focus group in a participatory framework we looked to Kahn’s model of the spectrum of public participation as adapted by Ismail for the health care setting (Ismail, 2009; Khan, 1999). In Figure 1, which incorporates CHWs as agents of engagement, community participation in health care decisions are described as situated along two continuums. The first ranges from individual to collective participation describing the extent to which focus group members participate as individuals reflecting their personal interests or as representatives of the broader community. The second represents the range between particularistic and holistic, that is, whether the knowledge emerging from the interaction of the focus groups is focused on a specific complaint or clinical service or responds to a common interest or good. We anticipated that CHWs would move focus groups toward the collective end of the spectrum by encouraging them to express their opinions or personal experiences as a contribution to a contextualized definition of behavioral health that could be acted upon by the clinic in the comprehensive improvement of services rather than as an isolated response to an individual complaint. In turn, the CHWs as community representatives would feel accountable to the expectation of focus group members that the FQHC will respond to needs expressed.

Figure 1.

CHWs as mediators of patient participation in PAR (Ismail, 2009; Khan, 1999).

CHWs and the focus group process

A review of CHW interventions with Mexican Americans documents the benefits of partnering with CHWs to improve the quality of health research projects (Rhodes, Foley, Zometa, & Bloom, 2007). The CHWs were research collaborators participating in articulating research questions, developing and implementing research protocols, recruiting participants, and collecting research data through patient focus groups. The four CHWs were engaged in the research process under the leadership of the second author and drove the direction and implementation of the research with the support of the researchers. These young women (under 40 years of age) were all born in communities on the Mexican or US side of the border. They have family members who work in the fields and, at the time of the study, had at least five years of experience as CHW. Two of the CHWs were fully bilingual while the other two were in stages of learning English. The researchers trained the CHWs in focus group facilitation through interactive dialogues and group role play activities demonstrating focus group. Already skilled in group dynamics, the CHWs were challenged as facilitators, however, by having to refrain from responding to the needs of participants when they raised personal issues during the focus group. We discussed ways in which they could clarify the difference between a support group and a focus group prior to beginning the groups and to speak with participants after the focus groups to address any needs expressed. We collaboratively developed focus group questions based on the objectives of the research. We then developed protocols under which we agreed the CHWs would guide the focus group process.

Based on our conversations about how to represent perspectives from FQHC patients with different health experiences, we designed criteria for four focus groups: two groups of individuals under 45; two groups of individuals over 45; two groups of individuals experiencing chronic disease; and two groups as a general cross section of the population without specific criteria. The CHWs created a random list of patients from the patient record and contacted them by phone to confirm if they fit the criteria and to provide a personal invitation. They also recruited from patients who had participated in their programs. The CHWs informed participants of their rights in the study through a disclosure process approved by the academic Human Subjects Committee. Confidentiality and respect were emphasized as part of the protocol.

As the process unfolded, the CHWs modified the researcher original notions of the research processes. They developed their own methods for facilitation that reflected their expertise in working with communities and their ownership of the research. While the first author trained the CHWs in a conventional structure in which two CHWs run the focus group, one as the lead facilitator and one in a support role, the CHWs chose to work collaboratively. All four participated in the focus groups, each with specific and interchanging roles. Two of the CHWs ran the groups and two took detailed notes. When they encountered a question that was not being interpreted consistently, they changed the wording and informed the researchers. The CHWs designed a format for the focus groups and began by explaining the purpose and the importance of the participants’ contribution in addressing services being provided by the clinic. They developed an ice breaker exercise in which they handed each participant a coin and asked them to describe an important life event that occurred that year. At the close of the focus groups they thanked everyone and shared an inspirational poem.

The CHWs conducted the focus groups in Spanish and with the consent of participants recorded the sessions. The researchers transcribed the tapes and compared them to the notes taken by the CHWs. The CHWs became increasingly thorough in the notes and by the end were essentially providing their own transcription. The researchers merged the CHW notes and transcriptions to create detailed documentation of each focus group for analysis.

Results

The CHWs recruited patients and facilitated eight focus groups with a total of 64 people in two border communities served by the FQHC. Typically, in conducting qualitative analysis, the data is coded and categorized into themes and patterns that describe characteristics, interpretations, and influences related to the issue of study. For the purpose of exploring and describing CHW-facilitated focus groups as a tool to facilitate patient involvement, we examined specific focus group questions that elicited conversations between participants about the meaning of behavioral health and how to address it. These included: (1) how would you describe mental health? (2) What causes people to feel sad, depressed, or worried? (3) How do people in the community resolve mental health issues? (4) What can the FQHC to do to better serve people with mental health needs? In Spanish, the preferred term for behavioral health is “salud mental” (mental health), thus in the focus groups and in translation we used this term. Two members of our research team individually and then collaboratively identified conversations in which CHWs encouraged participants to represent the community in a collective manner rather than focus on their own needs as patients. We looked for examples in which participants expressed their own opinions and then worked with others to elaborate and expand upon their perspectives to co-construct definitions of health and wellness. In the following section, we provide examples of these interactions.

Focus group participants as community representatives

In introducing the focus groups, the CHWs followed the protocol developed collaboratively during our workshop. However, their choice of words in emphasizing the importance of the participants and their role as community representatives was notable. With respect to taping the focus groups, for example, the CHW explained:

You may have noticed that we have a tape recorder here and that is because everything that you share with us is very important and we don’t want to miss anything in the notes.

The CHWs then explained that their involvement in the focus group was part of a larger effort to improve services, and encouraged them to represent the needs of the community.

You are all considered to be leaders in your community and we chose you because of the support that you have provided in the nutrition classes and to the health promoters.

They also made a distinction between the participants talking about personal needs versus reflecting what they see as issues in the community.

We all know that behavioral health is a delicate issue, and we are not asking you to share your personal experiences in any way, but to share what you want to and what you know of the community related to this issue.

After setting the stage for the focus group, the second facilitator then reiterated the information and the confidentiality and voluntary nature of the group using the language of the disclosure form approved under human subjects review.

Defining behavioral health

The CHWs initiated the conversation around personal meanings of the term mental health. Across the focus groups there was agreement that mental health was in some way an attitude toward life and responding to inevitable problems that arose. As the conversations progressed, participants recognized the many challenges they faced, with economic hardship, in dealing with their own health and the health of their family members, and often in responding to the emotional needs of their children. For example, a discussion among older participants began as a description of emotional wellness and an attitude toward life. The definition shifted towards a failure of the mind, which one participant interpreted as Alzheimer’s perhaps reflecting a general fear of this illness among the older population. The impact of memory loss then became the focus, perhaps not only as a symptom of Alzheimer’s, but also as a more general issue.

For me, mental health is above all to be okay with yourself. From all bad things you can take away something good. Learn to live with problems because if you don’t your life goes downhill.

Agreeing with what he says, and in God’s hands I have lived through everything. When you have your health, and that includes mental health, that is number one for me.

I understand it to be a matter of the mind, when your mind is failing you.

I say that the issue of mental health is very extensive and one of the reasons that people are becoming mentally ill is drugs, another thing is when someone is sick and they seek refuge within themselves to escape from their problems.

I define it as Alzheimer’s, including at times now that I have diabetes that I forget things, like where I left the keys or a pen.

That has happened to me too, driving sometimes my mind gets blocked and I wonder where I am going.

A focus group consisting of younger participants also began exploring the meaning of mental health as an attitude toward the world, with the family’s wellbeing at the center. In this conversation, participants elaborated on the concept of behavioral health as the ability to view the problems of daily life as issues for which they must make decisions that are most likely take their family in a positive direction.

It’s to be prepared for each day and to be optimistic in front of your children. You have to forge ahead and not think about your problems. Don’t think about the bad things, but the positive.

Well, we understand emotional health to be if everything is good with your family, if you are not doing well this gets transmitted to your family. At times I don’t have the words to say that things are not right with me.

For me, mental health is to be ready to make decisions every day, to be optimistic and look ahead. To help your children in school, help your husband with finances and think about how to get ahead. Not if you’re thinking about your problems, if you’re thinking about bad things; it’s to be positive.

Participants in another focus group became involved in a discussion about internal versus external causes of emotional distress and over the course of discussion they connected the two, emphasizing the impact of external issues, such as the death of a loved one or chronic disease on behavioral health.

I used to think it was an external thing that happened, but it could be for internal reasons.

Many times I’ve felt depressed and I thought that it was because of external factors, and now I have read that there are things as well, at times, that something is missing inside. Physical health can also affect mental health. It’s interesting because we think that mental health is shameful, taboo, like a disgrace, and it could be nothing more than older people with their kids, their spouse, financial issues, and in their kids too.

At times it is external but it is more difficult I think when it is internal.

Changes in your job, or your spouse, stuff like that. Yes it is internal, but these changes don’t help.

It’s a question of health. I have had a lot of health problems and I wanted to be like I was before, happy, contented. Someone who can’t be the same as they were before because of their health always feels depressed.

When my husband died I didn’t feel anything, just sleepy. My doctor told me it was depression; you feel nothing, just sleepy.

That is what happened to me when I got diabetes; I just wanted to close my eyes and sleep, nothing else.

In these conversations, behavioral health is often described as an individual’s response to life events such as physical illness or financial problems. Ideas about behavioral health flow between general attitudes and personal experiences and between broad approaches and specific coping strategies. The interactions reflect the process through which participants use their experiences to illustrate or expand upon the ideas of their peers or to fit their own experiences of behavioral health into a community context.

The need for integrated behavioral services

Participants had many ideas about how to address behavioral health. The initial discussion centered on individual coping skills, most importantly talking to someone about your problems, praying, and dealing with one issue at a time. As discussions moved to a community level and how the clinic might improve services, participants threw out ideas, agreeing and building off each other as the ideas of one person initiated thoughts in the next.

They should learn how to treat mental health.

They need a counselor in the clinic to give us more information.

They could have a telephone line where you could ask questions related to mental health.

They should provide mental health assistance in the moment we need it and not have to make an appointment and wait three days or more when the need has already passed.

Or tell us how to refer a person with mental health issues.

We need to be able to talk in the moment when a crisis is happening and not when it is already too late.

They should have a group where you could talk about this issue.

They could have support groups with promoters (CHWs) once a month to talk about these issues.

The ideas emerging from this discussion are reflected in other focus groups in which participants often talked about the importance of communicating your problems to other people as a way to find a solution. Many participants asked for support groups that addressed behavioral health generally, as well as domestic violence, marital issues, and issues with children. While the need for a specialist in town was broadly expressed, participants also seemed to be aware of resource limitations.

They need to have a specialist here, even if they can’t be here every day, maybe two times a week.

They would not need to come daily, two times a week to offer assistance.

In the following discussion, participants felt that the clinic was offering what it could and their requests were more limited.

I think they are offering everything here, because although they don’t have a specialist they send you to one because it is impossible to have every type of specialist in the clinic.

What they are doing now is okay, but bringing specialists here would be better.

A van for people that don’t have transportation.

Reflection

The principle contribution of this research is the elaboration of CHWs in the PAR process. The members of this project are deeply invested in the CHW model and our conviction that, to the extent that they are recognized within the medical hierarchy, CHWs can bridge the cultural gap between communities and the health care system and act as a voice for community residents in defining health care needs (Johnson, Sharkey, Dean, St John, & Castillo, 2013). In writing this paper, it was our intent to reflect upon the capacity of our partnership with CHWs to generate meaningful patient participation in PAR projects, or more specifically to assess the capacity of CHWs to elevate focus groups from a conventional qualitative research tool designed to gather input from marginalized populations, to an authentic form of community engagement. As PAR researchers we reflect upon the definition of participation of Heron and Reason (1997) that is characterized by involvement in the decisions driving the research content and inquiry, as well as by opportunities to reflect and act upon the knowledge being generated to transform our lives and the lives of others.

Focus group participants themselves verified the intermediary role we anticipated for the CHW. They emphasized their desire and confidence that the CHWs would represent their interests. In the final comments, participants said:

You all are supporting better services for mental health, right? Well, that is what I want to say.

We’ll see if this issue can be resolved, hopefully.

We had several reflections with the CHWs about their perceptions of patient involvement and how we should involve the community moving forward. We discussed holding a community forum or updating the focus group participants by phone or by mail. The CHWs were hesitant to contact their participants before they had a concrete response about how to address behavioral health in the FQHC, but they also felt accountable to move the process forward. One CHW suggested that we should “let them know that we are working on this and that we are concerned about the community … that we need their support and we need to work together.” Another CHW stated that continuing the connection with community members was important to their role and legitimacy going forward. Another CHW added, “They were also defining mental health, and that is what will help us, because promotores (CHWs) are not expert in that. A person can do training, but this information comes straight from the people and this is much better”.

The research verifies that the PAR focus group functioned as a change agent not just among participants but also with the CHWs. They discovered that contrary to their expectations men were willing to come to the focus groups and be vocal about mental health. One CHW explained, “I had the idea they wouldn’t say anything because they are men, especially in our culture and our origins, but it surprised me a lot, and it changed my perspective when they started to talk and give their input”. And the men also challenged the CHWs’ preconceptions about men’s desire to talk about mental health, “There were men of various ages, but they accepted that they were not working and that their wives were working, it was an emotional feeling they were having and it surprised me to hear it because I would not know it looking at them that they had all these experiences”. As a consequence of the PAR, the CHWs are now more aware of the emotional and behavioral aspects of the health of their patients. CHWs also learned to see health issues from a community as well as an individual patient perspective. Further, they learned to distinguish their roles as CHWs and focus group facilitators. They described being challenged by not responding to individual needs within the group, but commented that it was a good experience not being the expert: “We learned how to listen; we listened in a different way.”

In further reflecting on the CHW model as a strategy of patient engagement, we found that CHWs effectively encourage participants to apply their individual, clinic experience to a holistic, community perspective. Our approach benefited from circumstances that enabled the CHWs to take ownership of the research process. First, the geographical distance between the academic institution and the community clinic located in a rural farmworker community necessitated the research partners relying entirely on the ability of the CHWs to recruit patients and effectively facilitate focus groups. A second factor was the team-based approach initiated by the CHWs. They met regularly and often during the process and took initiative to improve upon the protocol by requiring that each CHW be involved in every focus group. They also modified the focus group timeline in order to maximize participation of farmworkers who would not be available once the harvest began. A third factor lay in the personal qualities of the CHWs; their recognition of the behavioral health needs of the patients, their interest in focus group facilitation as a new skill of their position, and their desire to do the work methodologically and thoroughly. They found that when a participant had trouble thinking beyond their personal issues, repeating questions more than once facilitated the participants back to the theme and the community focus. They found it helpful to utilize their skills as CHWs to listen to participants and not pressure them to speak, but give them time to respond. Because there were four CHWs, they were able to be attentive to everyone in the group and they observed people when they were not talking. The CHWs were struck by the compassion expressed by focus group members and their awareness of the behavioral health issues and desire to address the needs of the whole community.

The next stage of our research is to conduct structured interviews with FQHC staff and providers and to incorporate their perspectives into a comprehensive understanding of behavioral health care delivery. A stakeholder group comprised of providers, staff, board members, patients and two of the four CHWs have volunteered to integrate findings into new models of care. Acting upon the recommendations emerging from this research is vital to the integrity of our partnership, not only in this primary care setting where time is precious, but also in responding to the expectations of the community. Fortunately, the major role of the CHWs in conducting the research will enable them to play a pivotal role in developing and implementing an action agenda that will impact the delivery of care to this community.

Conclusion

CHW models are utilized in many countries and in many places CHWs are well integrated into the health care system. While application of the model varies depending on the health system and the local context, a common thread is the role CHWs play in connecting community members to health services and representing their needs with health personnel ill-equipped to work on a community level. In terms of their involvement in research, CHWs are recognized for their ability to recruit participants into more traditional studies. This research, using the PAR framework, empowers and enables CHW to more directly give voice to the community in developing an action agenda. Since it is often difficult to directly engage individual patients from marginalized communities in a meaningful PAR process, the research shows that CHWs can play the role of mediators and connectors in convening and running focus groups. As facilitated by CHWs, focus groups in this study encouraged participants to use individual experience as a launching point from which to address the broader experience of the community. Consulted as experts by the CHWs, the participants worked together to move beyond specific health care needs and to think comprehensively and contextually about behavioral health. Having established the importance of behavioral health, participants then considered many aspects of the health care delivery system and developed recommendations for improved behavioral health care delivery for the entire population. While the experience of this study may not be directly applicable to other situations, findings suggest that intermediary agents like CHWs can facilitate meaningful PAR.

Footnotes

Author biographies

Maia Ingram (MPH), is the Deputy Director of the Arizona Prevention Research Center at the University of Arizona College of Public Health. Ms. Ingram has 20 years of experience in developing and participating in community-academic partnerships and conducting meaningful, participatory evaluation of community health worker (CHW) programs. Ms. Ingram partners with CHWs in federally-qualified community health centers and grassroots agencies to address the structural underpinnings of health disparities in rural, urban and US-Mexico border communities.

Lucy Murrieta's family migrated to the United States and like many before and after them, the Murrieta's came to this country seeking opportunity. After witnessing her parent's endless labor in the agricultural fields, she realized that education was the only way to a better future. Through education she could empower herself, her family and others in the community. The desire to advocate leads her to Sunset Community Health Center where she began as a Community Relations Coordinator for some time, Lucy now serves as the Outreach and Community Relations Manager.

Jill Guernsey de Zapien is the Associate Dean for Community Programs at the University of Arizona Mel and Enid Zuckerman College of Public Health. Ms. de Zapien has been involved in community based public health interventions, policies and research in Arizona and throughout the Southwest and Mexico for more than thirty years. As co-investigator of numerous initiatives focusing on underserved populations, Ms. de Zapien partners across the university to work directly with communities to develop strategies for prevention interventions and the elimination of health disparities.

Patricia M Herman is a senior behavioral scientist at the RAND Corporation. Her research centers on health economics, innovative care models, individuals' health decisions, and overall quality of life. Herman is an NIH/NCCAM-trained methodologist, resource economist, and licensed naturopathic doctor. For more than 30 years, Herman has conducted policy and cost-effectiveness analyses concerning water rights, waste recycling, energy and water conservation, and health care.

Scott C Carvajal (PhD, MPH), is the Director of the Arizona Prevention Research Center at the University of Arizona College of Public Health. He is a multi-discipline trained applied social and quantitative psychologist with expertise in health promotion theory, Latino/cultural behavioral research methods, intervention design and evaluation methods. His principal research has focused on understanding a range of health behaviors that convey risk or protection and mental health outcomes with a major emphasis on testing social ecological models within minority populations.

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