CollaborativeMethods, Collaborative Change ...

CollaborativeMethods, Collaborative Change

CollaborativeMethods, Collaborative Change: Integrating Methodology and Partnerships in Research with Community Health Workers in the Midwestern, United States Ryan I. Logan, MA (PhD/MPH Candidate, University of South Florida, Department of Anthropology; [email protected])

Fostering collaboration with community partners is key for yielding mutually beneficial results and creating applied impacts. This article explores the development of a partnership with a community health worker (CHW) organization while carrying out my dissertation research. In 2016, I began a study with a CHW organization in order to document the lived experiences and health impacts of CHWs in the state of Indiana. However, in carrying out this research, it was imperative that the results produced would serve to mutually benefit both parties involved: myself as the researcher as well as the organization with which I was working. Thus, I worked closely with the community partner during the development of my project and continued to do so throughout the course of my data collection. Moreover, this paper examines the formation of the collaborative partnership with the research participants and how particular methodologies, such as photovoice, were chosen in order to produce data useful all parties involved. The use of collaboration and specific methods served to amplify the voice of the participants, increase the internal validity of the study, and craft research that can create an applied impact. This article also documents key ethical concerns in working with these methods and in collaborative partnerships generally. Ultimately, collaboration serves as a key means to increase the equitability between the researcher and community partner and in producing mutually beneficial results. Keywords: Collaboration, community health workers (CHWs), applied anthropology, photovoice Vol. 5, 2018

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Introduction Collaborative approaches are increasingly important in the development and enactment of research projects. In fostering collaboration, mutually beneficial results can be yielded for both the participant(s) and the researcher(s) while also serving to amplify the voice of the research participants. This article describes the formation and process of a collaborative research partnership between a community health worker (CHW) organization in Indiana and myself. I frame this discussion around the successes, challenges, and ethical concerns of creating this type of research partnership. The overarching goal of this partnership was to conduct my dissertation research while also ensuring that the data I collected would not only serve my own research interests but also directly benefit my collaborators. Aside from detailing the scope of the partnership thus far, this article more generally assesses the need for collaboration with community partners in anthropology. I also describe the potential for applied impacts from conducting this type of research partnership. A community health worker is defined online by the American Public Health Association (2017) as a “frontline public health worker who is a trusted member of and/or has an unusually close understanding of the community served.” In order to promote health, CHWs serve as a bridge between health care and marginalized populations. They provide a cadre of services including, but not limited to, health education, chronic disease management, prevention, and transportation. CHWs are unique in that they are typically nonclinical workers who also participate in community mobilizing and activism. This activism may be at the micro-level, such as advocating for

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hospitals and clinics to provide documents and signs in more than one language, or at the macro-level, such as attending protests to support state or federal legislation beneficial to their clients. These characteristics set CHWs apart from other health care professionals. The partner CHW organization in this research had recently formed in 2015. While only employing a couple of staff members, the organization serves essentially as a hub for CHWs throughout the state. The primary roles of the organization are to hold training classes for CHWs and those interested in becoming CHWs, secure grants, advertise the benefits of CHWs throughout the state, provide health outreach to the nearby community in Indianapolis, and connect nearby residents to local and state social services. The main population that is served by the CHWs in this organization is Latino immigrants but it also provides aid to a large number of Burmese refugees. This organization also partners with a variety of health and social service organizations throughout the state to better promote the health and wellbeing of the population of Indiana broadly. Overall, the organization’s primary purpose is to serve as a professional association for CHWs and to offer support to this component of the workforce in Indiana. My own research interests were multiple. The overarching goal of the dissertation was to document the lived experiences of CHWs and further contextualize their multifaceted roles in the United States. I was interested in examining their motivations for participating in this line of work in addition to considering successes and challenges in the context of their general exclusion from formal integration into the larger health care workforce. This project

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is also aimed at understanding how macrolevel (Affordable Care Act, Medicaid, Medicare) and micro-level (organizational, clinical, and hospital policies) laws and policies impact the work of CHWs. Finally, participation in activism is a unique component of the CHW model. Thus, documenting the health implications that could arise from this participation was of crucial importance to this project. Importantly, I wanted to ensure that the data I collected would be beneficial for CHWs and the organization, thereby creating not only academic but applied impacts. The partner organization could use these data to produce applied impacts with the potential for improving the situation of CHWs in Indiana, for example, by spreading awareness of this job and improving their ability to find employment. During pilot research conducted in 2016, I reached out to a CHW organization in Indiana that I had briefly collaborated with in the past. The president of this burgeoning organization was an enthusiastic to partner but was also clear that research should be collaborative in nature in order to produce data that would also benefit the CHW workforce in the state. As a result, I shared my own anthropological and public health research interests with my community partner but also incorporated particular methods of data collection to ensure mutually beneficial results would be yielded. This collaboration and dissertation project follows in line with a lasting call among anthropologists and other scholars for increased collaboration with research partners. The Call for Collaboration & Collaborative Partnerships Collaborative approaches to research projects are increasingly common in anthropology. Merrill Singer has argued

that, “collaborative work of this sort places anthropological skills at the service of communities as tools to be utilized in the process of self-development” (1993, 16). Following this call, many anthropological projects have incorporated collaboration or collaborative methodologies into their research endeavors (e.g. Atalay 2012, Bade and Martinez 2014, Campbell and Lassiter 2010, Kline and Newcomb 2013, Lassiter 2008, Pfister 2013, Stavrianakis 2015). These approaches incorporate the community’s interests, increase the participation of community members in the formation and process of the project, and may involve participants in the analysis of the data. In this way, collaborative approaches to research are vital in yielding results that create useful data for the community partner(s) and not solely for the pursuit of knowledge. Many scholars have specifically called for conducting collaborative research projects with CHWs (e.g. Cupertino et al. 2013, Everett 2011, Johnson et al. 2013, Maes et al. 2010, Nebeker et al. 2015, Pérez and Martinez 2008, Sánchez et al. 2012). Pérez and Martinez (2008) describe CHWs as “natural researchers” due to their intimate knowledge of their communities as well as the potential for their insights to influence macro- and micro-level policy. As a result, several researchers have called for collaboratively developing health interventions from inception, design, identification of community needs, outreach, and the ultimate delivery of said interventions (Cupertino et al. 2013, Nebeker et al. 2015). Overall, engaging with CHWs as equal research partners instead of passive participants is essential in conducting collaborative research and yielding applicable results in this field. This project’s approach was framed in a manner described by Bade and Martinez (2014) as “collaborative anthropology.”

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This process involves developing a longterm and committed partnership with community members (e.g., participants, stakeholders, and other key figures). The needs of all groups, including the researcher, are expressed and acknowledged and a horizontal relationship is established between those involved in the project. The researcher works with the community partner in the identification of the issues to be researched, throughout development and implementation of the project, and in the collection of data. Moreover, community partners are involved in the analysis and write-up of the project. This involvement is especially crucial as a means to increase the internal validity of the results, ensuring that the interests of both the researcher and community are equally addressed. Demonstrating all of the factors concerning these types of projects is crucial to building collaborative methodologies and showcasing a variety of means to establish these partnerships. There are several additional benefits to using collaborative anthropological approaches in research. These kinds of research partnerships have the potential to become long lasting relationships and to develop into sustainable future projects due to the integration of the needs of the community partner and researcher. Bade and Martinez (2014) also emphasize that collaborative anthropology is ethical due to its acknowledgment of the historic role of researchers as data extractors. The exploitative nature of the discipline’s past is addressed through collaborative development of the project and data collection in addition to analysis that is co-constructed between the researcher and the participant(s). As a result, Bade and Martinez assert that “collaborative anthropology transforms the ethnographic ‘self ’ and the ethnographic ‘other’ in to the ethnographic we” (2014, 322). 4

Overall, this conceptual framework was used to support the development of the partnership in this dissertation project. Forming the Research Partnership During the summer of 2016 I began pilot research for my dissertation. I had previously conducted a short study on the impact of CHWs in immigrant and refugee communities in Indianapolis during my time as a master’s student at Indiana University-Purdue University Indianapolis (IUPUI) and began pursuing a doctoral degree on a more expansive topic regarding CHWs. After reaching out to a statewide CHW organization initially through email and later via phone call, I met Lucia1, the president of the organization and a CHW herself. Lucia had conducted several smaller studies on the topic of CHWs with a local professor and had a clear idea of some facets of information that would be of help to the organization and CHWs in the state. We began sharing ideas back and forth, connecting my interests to types of data that could benefit the organizations and CHWs more broadly. These ideas were then included in the research proposal. Upon returning to Florida to finish the final year of coursework, I volunteered to chair a committee that would work to build rapport with the organization and to demonstrate my dedicated interest in CHWs. I put together this committee by reaching out to other volunteers in the organization who were either CHWs or worked with CHWs in order to collect “success stories.” These stories were voluntarily submitted by CHWs that documented a positive aspect of their care to a client. The stories were then posted on the organization’s website and in their email newsletter as a means of advertising the positive impacts of CHWs 1

This name is a pseudonym.

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in the state. While chairing a committee to gather these stories did not serve as a form of data collection, my volunteer work demonstrated my vested interest in the CHW community. These stories also informed the kinds of questions I would ask, as they provided a broad overview of CHW’s specific experiences (albeit mostly positive ones) that helped in the design of interview guides for the next phase of research. Additionally, as I constructed my research questions following the conclusion of my pilot research, I shared these questions and my semi-structured interview questions with Lucia to elicit her feedback. She provided key insights, critique, and feedback in shaping my semistructured questions that would not only support my own research interests but also help produce information that she was interested in. In this way, I further refined the scope of my research as well as the methodology to further reflect this collaborative partnership. In the winter of 2016, Lucia informed me that they had received a grant to train one hundred CHWs for a new state government supported certification. This certification is the first of its kind in Indiana and serves as a foundational training for CHWs. As another means of helping the organization, Lucia arranged for me to take the initial certification class in order to help her co-teach classes to new and current CHWs earning the certification. Additionally, in undergoing the training, I had the chance to gain deeper insights into the training of CHWs and attain firsthand knowledge of the implementation of a certification. Serving as a co-teacher for the CHW classes for the organization during the primary data collection phase served as another facet of the collaborative partnership and as an additional site for participant observation.

Overall, these activities were essential to foment and build the partnership. Selection of Data Collection Methods The selection of methodology was another collaborative process. Aside from utilizing traditional anthropological data collection tools such as semi-structured interviews and participant observation, Lucia and I were also interested in using photovoice as a primary collaborative data collection tool with CHWs. Photovoice is a research method in which participants take a series of photographs based on several prompts (questions or topics that participants address or respond to in the form of a photograph), share their photographs at a later meeting, and discuss their own interpretations with the other members of the photovoice group (e.g. Wang and Burris 1997, Guerrero and Tinkler 2010, Langhout 2014). These discussions also serve as an opportunity to co-construct meaning with members of the group. The purpose of the method is to highlight/ enhance the role of the participants in terms of participation, interpretation of data, and as a means of raising critical consciousness among participants. Photovoice amplifies the voice of the research participants since they collect the data, interpret the data themselves, and build meaning together – the identification of issues and the participants’ interpretations of the data supersede that of the researcher. In this project, photovoice served to reinforce data analysis and further contextualize the lived experiences of CHWs. Furthermore, the organization was interested in utilizing the photographs on their website in order to spread awareness of CHWs and in presentations to potential employers and policy makers. Thus, this method served as a means of attempting to produce an

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applied impact that responds directly to the situation of CHWs in Indiana. In order to carry out the photovoice portion, I crafted several prompts that the CHW participants would respond to in their photographs. I shared these prompts and collaboratively worked to refine them with Lucia. We edited some of the language of the prompt and shifted the focus of the prompts to highlight the individual feelings about being a CHW, an impact they have had, and a challenge they have overcome. We crafted these prompts to elicit a wide range of responses from the CHWs that would serve not only to illuminate the central research goals but also create an applied impact through spreading awareness of CHWs and sharing the photographs with potential employers and policy makers. Next, I drafted a presentation that would introduce this method in further detail, show examples of previous projects, explain ethical issues in taking pictures, show the prompts, and provide specific instructions. After assembling a group of CHW participants, we began the photovoice data collection. At the time of this article, the photovoice meetings had been completed and data analysis on the photographs was underway. Finally, in order to further amplify the voices of the CHW participants and strengthen the collaborative aspect of my project, several focus groups will be conducted with CHWs. The focus groups will consist of a presentation of the initial results from the project after early data analysis of the interview transcripts, field notes, and data from the photovoice project is conducted. These focus groups will provide an opportunity for the participants to further critique and assess these initial findings. In this way, CHWs will insert their voice further into the research findings and increase the internal validity of the results. 6

Ultimately, these activities – being open about my research interests regarding CHWs, describing my intent to produce mutually beneficial research, serving as a committee chair, eliciting Lucia’s feedback, collaboratively selecting data collection methods, and undergoing the certification training – were crucial in forming my collaborative research partnership with the organization. Although these activities exist at different levels and phases of the project, they were essential in building this collaboration. These activities built rapport and trust as well as demonstrated my commitment to the organization. This project was approved by the University of South Florida’s Institutional Review Board, and included a description of the partnership in addition to a required letter of support written by Lucia. Ultimately, operating in an open and honest manner in addition to incorporating the goals of my research partner and myself was vital in developing a sustainable and productive collaboration. Partnership & Research Thus Far Thus far, the research partnership has consisted of working at the CHW organization and conducting data collection. I have been directly involved in co-teaching three classes of CHWs, which were comprised of a mix of those new to the job and those who already had significant experience in the field but are earning the new certification (n=24 certified CHWs in total). Moreover, my duties for the organization have also included outreach and recruitment for these classes, interviewing potential students for admission to the classes, data entry, and serving as a mentor to the newly trained CHWs. As a mentor, I perform monthly check-ins as the CHWs enter the workforce (or return to the workforce) and

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offer aid and support for whatever their needs might be. I have also carried out a substantial portion of my own data collection. I have completed semi-structured interviews, participant observation (in the form of taking field notes of my classroom time and shadowing CHWs during their workday), and spearheaded the photovoice component. In this way, I have been able to maneuver an effective partnership while also attending to my own research pursuits for my dissertation project. As research continues, I will conduct followup interviews and assess the initial findings from the data to prepare for the CHW focus groups that will take place toward the end of data collection. Lucia has also been vital in providing suggestions for outreach for my research and helping to identify participants for the photovoice component. Furthermore, my work at the organization has built on the collaborative partnership as well as vitally informed by data collection. Continuing to work and volunteer at the organization contributes to the focus of collaborative anthropology through establishing a long-term partnership with the organization and demonstrates my commitment to the collaboration. Challenges in Dedication to Collaborative Research as a Student There were several challenges that emerged throughout the partnership, largely around balancing my responsibilities to the organization and to the dissertation. Time management became a key issue: CHW certification classes were structured as a nonconsecutive two-week training, Monday through Friday, and totaled 70 hours. This restricted my ability to collect data during training weeks. Additionally, as the initial rollout of the certification class

was backed by a grant, much of my time was spent updating a database to report back to the funding organization. Other facets of the mentorship, such as monthly phone call check-ins with mentees and traveling to conduct interviews with potential students, were not utilized as part of data collection and thus was time dedicated solely to the organization. This service work for the organization, however, was one way of “giving back” to the CHW community and helped to solidify my partnership with them. Addressing the Ethical Challenges of Collaborative Research While there are a plethora of benefits to conducting collaborative research, there remain key ethical considerations with regards to carrying out this kind of partnership. First, there are important boundaries to establish. In carrying out this research, I oversaw the data collection and followed the ethical guidelines of the American Anthropological Association (AAA)2. While Lucia aided me in guiding, critiquing, and shaping parts of my dissertation project, I was the sole overseer of data collection. And, although some of the emerging themes from the data were shared with the community partner, this did not include names or specific identifiable details of the individuals. Similarly, I was directly involved in overseeing the photovoice project but also included input from the research partner in terms of the final prompts that were presented to the CHWs. While my study population was primarily composed of CHWs, I recused myself from requesting interviews with my American Anthropological Association Code of Ethics (https://s3.amazonaws.com/rdcms-aaa/files/production/ public/FileDownloads/pdfs/issues/policy-advocacy/ upload/ethicscode.pdf) 2

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own CHW mentees, as this would have represented a conflict of interest as well as an added burden. I also ensured during the informed consent process that participants knew about my collaboration with the organization and that the data being collected was to inform the dissertation project. Participants were also apprised that all information (including name and affiliations), audio recorded interviews, and transcripts would be de-identified and not be shared with anyon. Finally, during participant observation, I made sure to make my presence known to CHWs and any potential participants in explaining the nature of my research, my affiliation with the organization, and that I was carrying out a dissertation project. In this way, I was able to function collaboratively with my community partner while also maintaining an ethical position and navigating the nuances of working within an organization but also considering any ethical issues that could arise. Overall, despite ethical pitfalls that are present in collaborative research, following established ethical guidelines aids in the collection of data and yields pertinent results to both researcher and community partner(s). Conclusion There has been a sustained and increasing call from scholars to incorporate collaborative approaches in conducting research projects. This dissertation project sought a collaborative approach since its initial conception and has maintained this partnership throughout its duration. This project follows a collaborative anthropology approach as described by Bade and Martinez (2014). Furthermore, specific methods were chosen to expand the involvement of the research participants, including, photovoice and focus groups. 8

As a result, the findings would have further relevance to the research partner who could use the data to appeal to politicians and employers to further aid the awareness and employment of CHWs throughout the state of Indiana. Establishing and building rapport was a vital component of this partnership that began during pilot research in 2016. In volunteering with the organization over the course of nearly a year prior to beginning data collection, I demonstrated my commitment to the partnership. Research methods were also edited based on feedback from the organization’s leadership. Additionally, specific methods such as photovoice and the use of focus groups were incorporated as methodologies that would amplify the voice of the research participants. There were also several challenges throughout this process. Time management was a key issue. It was vital to demonstrate my commitment to the partnership in working as a co-teacher and mentor in addition to traveling to conduct interviews for the class. These responsibilities had to be balanced between adequate data collection for the dissertation. While these responsibilities were not always part of data collection, they functioned as a means to “give back” to the organization. Ethical considerations were an additional challenge to navigate during a collaborative project. Drawing on the American Anthropological Association Ethical Guidelines, recusing myself from particular interviews and being transparent about the collaboration during the informed consent process were essential actions in addressing ethical issues. While I am still finishing data collection and analysis, there are several key directions and recommendations that can be made for future collaborative research projects. First, building rapport

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and establishing long-term and sustainable relationships with research partners are crucial. One key benefit of collaboration is the ability to create a sustainable partnership that is committed to the needs of the community (Bade and Martinez 2014). Next, collaborative research projects should document and publish their methods for establishing the partnership and noting the successes, challenges, ethical dilemmas, and other factors associated with such work. In doing so, we can continue crafting a methodology in order to further develop and refine collaborative partnerships in social science research. Ultimately, there is a need to create and foster these partnerships as a means of ensuring the relevancy and survival of anthropology (and other social sciences) outside the walls of academia (Rylko-Bauer et al. 2006; Singer 1993, 1995). The research produced through these partnerships benefits not only the researcher but also the community partner. In doing so, anthropology will demonstrate its utility to society in producing applied impacts that also emphasize its relevance to research partners. In addition, this increased involvement of the research participants and the public more broadly will further showcase the relevancy of anthropology. Overall, a collaborative approach to research that involves research participants at the onset, duration, and analysis of projects will be crucial to both creating academic and applied impacts.

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Langhout, Regina D. 2014. “Photovoice as a Methodology.” In Migration and Health: A Research Methods Handbook, edited by Marc B. Schenker, Xóchitl Castañeda, and Alfonso Rodriguez-Lainz, 327-342. Oakland: University of California Press.

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Nebeker, Camille, Michael Kalichman, Ana Talavera, and John Elder. 2015. “Training in Research Ethics and Standards for Community Health Workers and Promotores Engaged in Latino Health Research.” Hastings Center Report 45 (4): 20-27. Pérez, Leda. M. and Jacqueline Martinez. 2008. “Community Health Workers: Social Justice and Policy Advocates for Community Health and Well-Being.” American Journal of Public Health 98 (1): 11-14. Pfister, Anne E. 2013. “Ethnographic Strategies for Engaging Deaf Youth Participants: Photovoice and Participatory Analysis.” Student Anthropologist 3 (3): 34-46. Rylko-Bauer, Barbara, Merrill Singer, and John Van Willigen. 2006. “Reclaiming Applied Anthropology: Its Past, Present, and Future.” American Anthropologist 108 (1): 178-190. Sánchez, Jesús, Georgina Silva-Suarez, Claudia A. Serna, and Mario de la Rosa. 2012. “The Latino Migrant Work HIV Prevention Program: Building a Community Partnership Through A Community Health Worker Training Program.” Family & Community Health 35 (2): 139-146. Singer, Merrill. 1993. “Knowledge for Use: Anthropology and Community-Centered Substance Abuse Research.” Social Science & Medicine 37 (1): 15-25.

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