The AzPRC commitment to addressing health disparities in border communities is rooted in partnerships with the Community Action Board (CAB) members that originated 25 years ago, with most organizations from the original partnership still reflected today in membership. The CAB provides guidance in all aspects of the AzPRC. As a partnership, we strive for shared leadership that is grounded in a high level of communication, exchange, and trust.⁷ CAB members include 20 representatives from health departments, federally qualified health centers, area health education centers, and community-based organizations from Yuma, Pima, Cochise, Santa Cruz, and Maricopa counties, as well as representatives from the Arizona Department of Health Services chronic disease programs. For the LINKS study, we worked together toward a common research goal by co-creating our collaborative activities.

An interdisciplinary team of researchers - including the first, third, and last authors - collected data. We are part of a larger research team made up of Latinx, multi-racial, and White faculty, staff, graduate students, and CAB members either employed by a university or by a public health agency located in the Southwest United States. All team members have experience and knowledge about the Latinx community and all participate in a collaborative effort to improve the public health issues that affect Southwest communities. Four CAB members are co-authors on this article (FB, GC, CE, and CD). They contributed their practice-based experience regarding CHW-led CCLs, participated in the focus groups, and gave feedback on manuscript drafts.

The first and second authors analyzed the data. The first author identifies as White and is a Ph.D. candidate in Public Health. She learned Spanish through coursework, volunteer experience abroad, and employment at a migrant health clinic. She is motivated by a desire to see that immigrant and marginalized communities are able to access healthcare resources. The second author is getting a Ph.D. in Mexican American Studies with a focus on undocumented Mexican immigration to the United States. As the daughter of formerly undocumented immigrants, she is committed to helping marginalized groups and fighting for justice, equity, and human rights.

CAB members and the academic team decided to conduct internal focus groups in order to synthesize lessons learned from implementing a CHW-led CCL across three sites.¹⁰ The research partners developed the discussion questions together which were designed to elicit conversation about the intervention. In conducting focus groups, we sought to cultivate a process of discovery - rather than a sharing of opinions - by engaging CHW and CHW supervisor partners in discussions about their experience implementing the intervention.¹¹ Because the CHWs and their supervisors are CAB members, and therefore research partners rather than study participants, Institutional Review Board approval was not required for this data collection.

We held the CHW focus group in-person on March 21, 2019. Five CHWs participated. All of the CHWs speak Spanish as a first language therefore we conducted the discussion in that language. We split the CHW supervisor focus group into two parts due to challenges with technology and scheduling conflicts. On February 14, 2019, we conducted the first half of the focus group over Zoom videoconferencing software and then we finished the discussion during an in-person meeting on March 22, 2019. All three CHW supervisors spoke English fluently, consequently the CHW supervisor discussion was conducted in English. Each focus group lasted between two to three hours. We audio-recorded and transcribed all discussions.

Keeping the discussions in their original language, a bilingual qualitative coding team - the first (AL) and the second (SA) authors - analyzed the data. The last author (AWL) provided guidance and oversight as needed. We followed Maguire and Delahunt’s six step thematic analysis guide.¹² First, we became familiar with the data by individually reading all the transcripts. Second, we generated initial codes together and coded a small section of each focus group discussion. Afterwards, we compared our coding, reconciled differences, and adjusted the code book accordingly. Next, we individually coded the entire data set using NVivo Software version 12. Third, we identified themes by reading through all the statements captured by one code and searching for significant or interesting overarching ideas that related to our objective of outlining the lessons learned from a CHW-led CCL intervention. Fourth, we reviewed the themes for clarity and ensured that the data supported each theme. Fifth, we defined the themes and clarified the relationships between the themes and subthemes. We regularly engaged our community partners throughout the theme development process to make sure the themes aligned with community member experiences and opinions as well as to guarantee the accurate translation of quotes. Sixth, we wrote up our results.

Through peer network trainings and the use of the REDCap messenger, CHWs learned from each other, built camaraderie, and supported one another when they struggled to use study-related technology. During the focus groups, LINKS CHWs also expressed great admiration and respect for their CCL counterpart (the CHW based in the alternate setting), recognizing their strengths and ability to support participants together. This culture of sharing made CHWs feel empowered by their work and confident that they were helping LINKS participants.

It was difficult for CHWs to provide emotional and social support to participants and themselves due to inherent institutional structures, system protocols, and technological barriers. They found that LINKS participants frequently expressed frustration with providers due to the fast pace of appointments. In contrast, CHWs learned details about participants’ lives beyond the routine data collected at provider visits as they gathered additional pertinent information such as social support, and as they spent more time with participants which often included many follow-up calls or visits. As a result, CHWs filled this emotional gap by tailoring their approach to meet the needs identified by the participant. Yet, at an institutional level, CHWs struggled to gain necessary private spaces where they could build a trusting relationship with participants. They also had to regularly change offices and navigate tense interactions with other providers who were not participating in the LINKS study. Additionally, CHWs struggled to create technologically supportive spaces. For example, after recruiting participants at the clinics, community-based CHWs often found that when they called to follow-up from the county health department, LINKS participants would not answer their phones because they did not recognize the number. This problem could have been easily rectified by better alerting LINKS participants that they would be receiving phone messages from the county health department rather than from and the clinic. Overall, CHWs need more support at an institutional level.

CHWs’ access and ability to create these nurturing spaces impacted LINKS participants. The CHWs felt that if they could create these private and nurturing physical spaces, it would better enable disclosure of participants’ emotions. Through releasing emotional struggles, the CHWs believed LINKS participants could begin to tackle their physical ailments. Yet, this type of community-based work can be stressful and draining for CHWs.⁵ In order to keep their passion for the profession, CHWs need to also ensure that they create self-nurturing and peer-nurturing spaces to maintain their work stamina. By taking care of themselves and supporting each other, CHWs are able to work long term. To facilitate the creation of nurturing spaces, future iterations of LINKS should include more frequent CHW peer network trainings as well as promote CHW self-care to alleviate burn-out and potential emotional burden.

Focus group participants appreciated regular support from the academic team which involved providing opportunities for CHWs to tell the stories behind the data at meetings and conferences.^13–15 As a result, both supervisors and CHWs felt empowered as CCL subject matter experts and CHWs had space for self-reflection. Conversely, focus group participants disagreed on whether the LINKS implementation was a success or a challenge. During conversations, there was a push and pull between creating a community-based participatory research (CBPR) project through an iterative process versus having more structure from the beginning. One supervisor embraced the lack of detail and instructions in LINKS and enjoyed the challenge of figuring out how to implement the intervention. In contrast, some CHWs felt there was a lack of communication between themselves and the research team on how to create the CCL as well as what their role entailed. This resulted in challenges associated with research timing. For example, it took longer than expected to establish the CCLs. Moving forward, we imagine this tension will continue as this is part of conducting a study using a CBPR framework. We also acknowledge that it is important to collect and apply all lessons learned to future iterations of LINKS.

An additional research-related challenge occurred when, after a brief training, the academic team assumed the LINKS CHWs had the needed skills to use Ipads and REDCap software. The CHWs found the pressure to use these tools stressful and overwhelming, especially when they were not functioning as expected. Future projects like LINKS should include more technology training for CHWs.

Both CHWs and supervisors said their relationships were positive. They described one-on-one troubleshooting and CCL process discussions as well as professional development - such as providing and seeking CHW training - as helpful. Some CHWs also felt that their supervisor understood their role and was capable of supporting their work. They believed their supervisors provided the emotional support they needed, especially during tough times in the research project. Other CHWs mentioned that it would be beneficial for their supervisors to receive more training on CHW professional development, skills, roles, and performance evaluation.

A key obstacle in LINKS was the absence of clinical CHW supervisors during CCL planning. Due to limited funding and time allocation, the clinical CHW supervisors were not able to participate in the CCL planning. Instead, the funding was primarily assigned to the clinical CHW rather than both the supervisor and CHW. This created logistical barriers such as struggles to establish the CCL recruitment and referral process and misunderstandings about communication between the county health departments and the clinics. As a result, the clinic CHWs had an unsustainable amount of work as they tried to create CCLs without full support from their supervisors. In the future, it is essential to provide appropriate funding for both clinical supervisors and CHWs to be involved in the CCL development process from the beginning, especially when discussing recruitment and referrals. In this way, clinic CHWs will hopefully have more dedicated time and funding that would be in line with supervisor expectations.

In the end, focus group participants believed that LINKS, a systems-level CHW-led CCL, benefited participants. Once a CCL was established, they felt that clinic-based and community-based CHWs could balance their personal and institutional strengths and weaknesses through collaboration. For example, in one county, the clinic CHW offered an emotional well-being course while the county health department had a diverse menu of chronic disease management educational opportunities available in a group setting. The CHWs could refer participants to the unique programming offered by each institution. Focus group participants also described how being part of a CCL gave all organizations involved access to more resources. As a result, participants engaged and received the resources they needed and became better managers of their health and social determinant needs. When asked about sustainability, supervisors said this was a challenge and that programs such as LINKS have to be adaptable to be maintained beyond an externally supported funding structure.