Advancing Community-Based Participatory Research During the COVID-19 Pandemic: A Methods Commentary on the Lessons Learned from Working with Community Data Collectors on a Refugee Health Disparities Study

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Abstract

This methods commentary focuses on lessons learned from working with community data collectors on a refugee health disparities study during the COVID-19 pandemic. While there is a strong literature base for community health workers in refugee or migrant communities, there is less known about the procedural elements, challenges, and effectiveness of using community data collectors (CDCs) in research with refugee or migrant communities. Recognizing the cultural wealth and unique strengths of local stakeholders in the refugee community, the research team employed a robust collaborative approach by partnering with CDCs to design and administer the Telehealth and COVID-19 Knowledge, Attitudes, and Practices in New York Refugee Communities Survey. The study’s success was largely due to the CDC partnership. This methods commentary highlights the utility of Community-Based Participatory Research as a culturally-responsive framework well-suited to exploring health disparities as part of a broader agenda of public health communication research.

This methods commentary reviews and discusses the community-based participatory research approach employed by the Telehealth and COVID-19 Knowledge, Attitudes, and Practices in New York Refugee Communities Survey. The COVID-19 pandemic has highlighted and exacerbated existing health disparities in underserved communities, fueled by long-standing structural and social inequity (Bentley, 2020). Highlighting the deeply entrenched systemic drivers of health disparities in the United States, individuals of color were one and a half times more likely to contract COVID and twice as likely to die of COVID-19 than white individuals (Hill & Artiga, 2022). Refugees are more likely than native-born Americans to experience mental and physical health issues, including severe COVID-19 illness (World Health Organization, 2022).

A key reason for COVID-19 racial health disparities is the longstanding under-representation of people from minority ethnic and racial groups in research (Etti et al., 2021). Additionally, research that centralizes the perspectives of minoritized communities through partnership and collaboration is limited, potentially exacerbating existing disparities around health communication, service delivery, and health outcomes. Recognizing this notable absence of refugee-specific health communication research from the existing knowledge base, combined with the glaring negative effects of the COVID-19 pandemic on minoritized communities, and the near certainty of future pandemics, the research team sought to establish a collaborative community partnership by engaging local refugees as data collectors and co-researchers in a public health communication study.

Community-Based Participatory Research (hereafter CBPR) provides a paradigm through which to engage community members in genuine partnership with researchers and stakeholders. In CBPR, community members are considered to be co-researchers with essential knowledge that informs study design and related processes. With the shared goal of societal transformation through sustainably collaborative and mutually beneficial research, CBPR is conceptualized as a formidable tool for the reduction of inequities, including health disparities (Roberts et al., 2020; Wallerstein & Duran, 2006).

In addition to CBPR’s alignment with social justice-oriented values such as self-determination, cultural competence, and ethical practice, this methodological approach has also been found to increase participation rates and external validity, ultimately enhancing individual and community capacities (Viswanathan et al., 2004). Unlike traditional research methodologies, which can involve significant distance between the researcher(s) and the communities they study, CBPR effectively embeds research within the local cultural context (Ahmed & Veronis, 2020). According to Kirkness and Barnhardt (1991), the process of operationalizing CBPR is predicated on the development of trusting relationships between researcher and community, challenging prevailing – and often inequitable – research paradigms, creating opportunities for members of minoritized communities to determine their desired level of involvement in research processes, and strengthening research ethics. As suggested by Castleden Morgan, Lamb, and Lamb (2012), CBPR focuses on not just who is involved in the researcher process, but also how they are involved, reminding researchers that truly collaborative work is both intentional and carefully planned.

Finally, CBPR has been highlighted as a culturally appropriate approach to research, particularly with minoritized or marginalized communities, since it prioritizes a more equitable distribution of power within the researcher-participant relationship (Parker et al., 2020). The utility of collaborative community partnerships to ameliorate health disparities has been well documented in the case of community health workers (Scott et al., 2018), including with refugee populations (Shaw et al., 2022). However, the potential of such partnerships for data collection have received less consideration in the literature, especially health equity-focused communication research. This article describes the theoretical framework, study design, collaborative process, key insights, and implications of this study’s methodological approach.

Theoretical Framework

Critical Race Theory (CRT) provides a powerful lens through which to assess and challenge the ways in which the social construct of race forms the basis for societal power, privilege, and opportunity (Delgado & Stefancic, 2001). Given the study’s focus on health disparities in racially, ethnically, and culturally minoritized communities, CRT’s analysis of the ways in which societal institutions, such as academic research, galvanize existing power dynamics (Crenshaw, 1991), formed the theoretical backbone of the current study. Additionally, CRT seeks to challenge the traditional power dynamics of the participant-researcher relationship, which in this study meant that the community data collectors were held as essential sources of expertise (Dixson, James, & Frieson, 2018).

Moreover, Yosso’s concept of “community cultural wealth,” was employed as a theoretical lens (Yosso, 2005). As described by Yosso (2005), community cultural wealth occurs in multiple forms, including linguistic capital, social capital, and navigational capital (Yosso, 2005). Linguistic capital refers to the ability and experiences of minoritized communities to communicate in multiple languages or styles. Social capital describes processes of network-creation to provide support and mobilize community resources, ultimately enabling emotional well-being and success. Navigational capital involves the unique ability of minoritized communities to navigate societal institutions that actively maintain societal status quos. The CDCs held unique linguistic, social, and navigational capital – not held by the researchers - which could benefit the study design and data collection.

Study Design

This exploratory study used a survey design to assess several COVID-19-related domains, included telehealth and health communication needs, knowledge, attitudes, and practices. Participants were from Arabic, Dari, and Pashto-speaking refugee or migrant communities in New York State. Recognizing the cultural wealth and unique strengths of local stakeholders in the refugee communities, as well as the dearth of refugee perspectives related to health disparities in existing empirical work, the research team employed a collaborative approach by partnering with community data collectors to design and administer the study. Feedback from CDCs was solicited throughout this process to ensure meaningful collaboration and equity-centered research. As mentioned previously, the use of CDCs was selected because CDCs possessed linguistic skills and unique community knowledge, thus allowing for increased participant trust and buy-in.

Overview of Partnership and Collaborative Process

Partnership with CDCs

After IRB approval was secured, the multidisciplinary research team recruited and hired four CDCs from New York’s Capital Region. The research team engaged the CDCs in an initial training via Zoom, which included discussions related to research ethics, informed consent, and the CDC role. For example, the research team understood from the literature the potential challenge for CDCs who, as leaders in their communities, are accustomed to being a source of information and may unintentionally influence study results if not discussed explicitly prior to data collection (Marsh, Derose, Rios, & Cohen, 2015). For this study, the CDCs were discouraged from providing information, other than survey term definitions, during the survey administration. COVID-19 health prevention information from the World Health Organization was included at the end of the survey, and CDCs were encouraged to provide factual health information at that time as they felt comfortable.

The CDCs were tasked with recruiting participants from local social networks and administering the survey, and they were compensated for their time. The research team intentionally recruited across national origin and gender to potentially expand community networks and subsequent participant recruitment. Like New York’s refugee population itself, the study’s team of CDCs were multilingual, with diverse backgrounds: of the four CDCs, two CDCs were native Arabic speakers, and two CDCs were native/fluent Dari and Pashto speakers; countries of origin were Afghanistan, Sudan, and Syria. Three CDCs were female, and one was male. There were thirteen applicants for the four CDC positions, and the CDCs were hired in part because of their prior educational and/or work experience complementary to the CDC role, including social work, teaching, hospitality, and previous research experience. All CDCs had some level of proficiency in English.

Evolution of Collaborative Process with CDCs

After the research team provided the CDCs with an initial training on the study goals and proposed survey methodology, CDC input was solicited during several Zoom meetings to identify the most efficacious approach to recruitment of participants and survey design. During this phase, CDCs provided critical expertise on the ways in which local refugees might react to survey questions and survey recruitment, particularly via social media (for newer refugees) or more traditional in-person methods (for refugees with more time spent in the U.S.) For example, one CDC communicated an in-depth knowledge of community-based Facebook groups, which he then utilized as sources for participant recruitment. CDCs also engaged in a discussion around spaces that felt culturally inappropriate for raising the possibility of study participation, such as the community mosque. Finally, CDCs provided feedback on survey questions, often strategizing ways to make questions clear and straightforward to participants. The survey was revised, accordingly, and the IRB was notified of the survey revision. As a result of the sharing of such nuanced expertise by CDCs, these meetings proved vital to the collaborative process, and once data collection was underway, two additional consultation meetings were held in which feedback from CDCs was obtained. While these meetings were not recorded, a designated scribe from the research team took detailed notes during the meetings, and the research team collaboratively reviewed and added to the notes immediately following the meetings.

Data Collection

Returning to Yosso’s conceptualization of community cultural wealth (Yosso, 2005), CDCs demonstrated the utility of their unique forms of linguistic, navigational, and social capital. By identifying, recruiting, and engaging study participants in a culturally appropriate manner, CDCs were able to secure a sample size of 353 refugee-identifying individuals in a nine week period. Through the process of data collection, CDCs reported that translated surveys were often relatively easy to administer, with less confusion from participants about the meaning of certain concepts and phrasing. They hypothesized that this was because participants who spoke the same language as the CDC benefitted from their linguistic capital, or their shared communication ability and common language. This underscores the power of shared language to yield not only a more nuanced, in-depth consideration of study constructs, but also a sense of solidarity between CDCs and participants (Straubhaar, 2013). In addition to a robust sample size in a short period of time, the quality of the data was robust, as evidenced by almost no missing data.

Highlighting the value of CDCs’ navigational capital as trusted sources of information and resources, refugee participants frequently asked CDCs for clarification not only about survey questions, but also related to general healthcare. For example, one refugee participant asked a CDC about the process of obtaining health insurance. Questions related to the COVID-19 vaccine and to telehealth access were common. This underscores the lack of culturally appropriate, accessible information and resources necessary to navigating the U.S. healthcare labyrinth for many refugee individuals. This need felt particularly pressing for newly resettled refugees with limited English proficiency, who were observed as being overwhelmed, ultimately prioritizing basic survival over COVID-19 concerns or methods of health communication or healthcare service delivery. As described by one CDC, “In many cases, newly arrived refugees are overwhelmed by the complexities of the health care system, immigration, education, employment, and the biggest of all is the language barrier.”

Interestingly, CDCs reported that the data collection process coincided as a conduit through which to provide newly resettled community members with essential information related to life in the United States. The research team considered that some of the reason for participation by the newer arrivals was the opportunity to engage with a knowledgeable, acculturated community member. Additionally, CDCs used their expert knowledge of cultural values to inform their strategies for potential future research projects, both exploratory and intervention. For example, one CDC suggested that future public health messaging could be targeted for dissemination at cultural events, such as religious feasts, and several CDCs cautioned against scheduling data collection near the month of Ramadan. These insights were of critical importance to the study’s success, as they enhanced connection, trust, and engagement with the communities of interest.

After data collection was completed, CDCs were invited to share their insights, expertise, and reactions to the collaborative research process. In hopes of making this final aspect of soliciting feedback minimally burdensome, the research team opted to ask the following questions via e-mail and WhatsApp. Please see Table 1 for feedback questions for CDCs following the project’s conclusion. Their insights and feedback will be discussed next.

Table 1. Feedback questions for CDCs upon project’s conclusion

1. What has been your experience as a community data collector for this project?

2. What went well in collecting data?

3. What challenges did you experience in collecting data?

4. What advice would you have for future community data collectors?

5. What kinds of responses did participants have to the telehealth and vaccine topics?

6. Did anything about the participants’ responses surprise you?

7. What next steps after this study would you like to see?

8. Anything else that you would like to share?

Key Study Design Insights from CDCs

CDC Feedback on Recruitment

Related to recruitment of participants, one CDC described dynamics of initial hesitance around participation in his network of Afghan refugees, observing that newly resettled Afghan refugees seemed more willing to participate in the survey, particularly when invited via social media, than those who had been in the United States longer. CDCs highlighted the power of social media for participant recruitment. CDCs were divided on the degree to which participants were motivated to engage with the study by the small financial incentive, and most CDCs felt that the process of recruiting participants was challenging during Ramadan (which fell during the data collection window).

CDC Feedback on Data Collection

CDCs agreed that most participants had some questions about study wording and concepts when first encountering the survey, highlighting the utility of survey administrators who are bicultural and hold fluency in multiple target languages. CDCs voiced concern about some linguistic and cultural challenges of survey participation, specifically difficulty understanding concepts such as telehealth in English for participants who were new or newer arrivals to the U.S. Related, several CDCs reported that when participants needed interpretation, technological assistance, or had study-related questions, the survey took longer than the originally allocated 20 minutes to complete. For participants who held English literacy, did not need technological assistance, and did not have numerous study-related questions, the allocated 20 minutes was sufficient.

CDC Feedback on Results and Implications

While the study results provided quantitative results, the CDCs were able to provide their perspective, based on the conversations with participants during the data collection, that helped to contextualize the study results and implications. For example, despite less than half of participants reporting that they would not prefer a telehealth visit, CDCs shared that participants were vocal about their interest in telehealth, if the structural barriers were not a problem (i.e., access to Wi-Fi, digital literacy issues, language barriers). Returning to the study’s collaborative methodology, CBPR emphasizes the importance of extending research collaboration to subsequent processes of intervention design. As the initial step in this process, CDCs shared ideas for improved delivery of public health services in refugee communities (Burke et al., 2013). For example, one CDC pointed out that all newly arrived refugees receive government-provided cellular devices, which would be an excellent entry to standard telehealth services via a pre-loaded app. Based on their participant observations during data collection, CDCs identified a dearth of culturally and linguistically appropriate public health messages targeted to the refugee populations and described a desire to increase awareness pathways to telehealth for recently resettled refugees.

Implications for Methods

The study’s success was largely due to the expertise and guidance provided through the CDC partnership, demonstrating the utility of CBPR as a culturally-responsive framework well-suited for health disparities research. The study methodology and design, including the survey tool, were informed by the cultural wealth of the CDCs, thus allowing the study to be culturally appropriate to local refugee communities. Similarly, the partnership with CDCs allowed for in-depth dialogue on specific cultural considerations (i.e., not scheduling data collection around Ramadan). The research team believes that both the significant sample size (N = 353) (given the limited study resources and short time frame) and the low incidence of missing data can be largely attributed to the use of CDCs in the process of study design and data collection. Moreover, the research team was able to apply a more contextualized lens to data analysis thanks to the nuanced cultural knowledge shared by CDCs.

Therefore, to create systems of service and information delivery that are culturally appropriate and responsive, and to address the existence of health disparities in minoritized communities, the field of health communication should embrace more such participatory, partnership-driven methodology (Synnot et al., 2018). The employed study design highlights the benefits of CBPR at both the methodological and practical levels. By collaborating with community-based cultural experts, health communication and public health researchers not only glean more targeted, in-depth data on health disparities and needs, but also lay the groundwork for ongoing partnerships to facilitate community health equity research. Given the disproportionate impact of the COVID-19 pandemic on minoritized communities and the near certainty of future pandemics, such partnerships are essential to the success of health communication and health disparity research.Augusterfer, et al., 2018

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

We would like to thank the CDCs, who made this study possible. We would also like to thank the University at Albany for funding the project