Methods

In November 2021, we conducted semi-structured, small discussion groups with African Americans living in eastern North Carolina to identify barriers and facilitators to CVDST. Participants were recruited purposively and represented three age groups, including youth (ages 18–29 years), adults (ages 30–49 years), and older adults (ages 50 years and older). Groups were conducted in-person at a local public library between October and December 2021 and included 8–12 participants in each group. Each participant provided written informed consent, and two experienced members of the study team facilitated each group. This study was approved by institutional review boards at Wake Forest University School of Medicine and Duke University School of Medicine.

We developed an interview guide through an iterative process informed by existing literature on COVID-19 health behaviors and disparities. The guide was designed to explore participants’ perceptions regarding the impact of the COVID-19 pandemic on their daily lives, experiences with being diagnosed with or caring for someone with COVID-19, their engagement in COVID-19 prevention practices, including their testing-related experiences, as well as factors that either made it easier or more difficult to engage in COVID-19 testing. The guide was reviewed by our lead community partner for clarity, relevance, and flow and feedback was used to refine the questions and structure. Interviews were conducted in-person by 1–2 trained facilitators per group using a standardized protocol to ensure consistency across sessions. During the discussion groups, facilitators showed participants a short demonstration video depicting how to self-administer a COVID-19 self-test developed by a test manufacturer and publicly available online. We asked participants to share their opinions about self-testing and the kit being demoed, including their beliefs, motivations, and intentions regarding administering a COVID-19 self-test, and suggestions regarding product marketing and community-level interest in self-testing. We audio-recorded the small discussion groups, which were then transcribed by a third-party organization and reviewed for quality and accuracy by a research team.

Data were coded and analyzed using NVivo and deductive and inductive methods. Two researchers independently coded the first three transcripts and collaboratively developed a codebook, resolving discrepancies through discussion to achieve at least 95% inter-coder agreement. The remaining transcripts were coded by at least two members of the study team, with weekly meetings held to review coding consistency, refine the codebook, and ensure analytic depth. Specifically, we conducted codebook thematic analysis. This method involves developing a structured codebook that includes a list of codes, their definitions, and examples of how they are applied to the data [20,21]. Initially, codes were derived deductively from the interview guide and relevant literature. Additional codes were then developed inductively during the coding process to capture emerging themes [20,21]. The codebook was iteratively refined through team discussions to ensure clarity, consistency, and comprehensive coverage of the data. This approach supports transparency, strengthens inter-coder reliability, and facilitates collaborative analysis.

Results

Discussion

This study sought to explore community perceptions of CVDST among African Americans in rural North Carolina. Our goal was to provide insight on ways to improve the uptake of self-testing, particularly during a time in which information regarding COVID-19 was evolving, and self-testing was relatively new to the larger population. Our results suggested high acceptability of CVDST. Prior to the widespread availability of self-testing kits, preferences among participants varied, with some participants, especially older adults, reporting low self-efficacy largely due to concerns about their ability to follow the instructions and receive accurate results. Yet, most participants noted several benefits to using the kits, including convenience and privacy, and the absence of logistical challenges (e.g., the need for transportation, long wait times to receive a COVID-19 test, delays in receiving one’s results, and challenges scheduling an appointment at facilities-based testing sites). Our findings are consistent with those of previous studies, highlighting the usefulness of self-testing options in mitigating the impact of pandemic threats [22,23].

Participants noted several barriers to the uptake of CVDST, including low self-efficacy, concerns about test accuracy, and cost. Specifically, some participants, primarily older adults, expressed doubts about their ability to accurately follow the instructions provided within the self-testing kits. Multistep instructions, those with verbose descriptions, and those at higher reading levels, may be difficult for many participants to follow. As such, developers should be intentional about creating instructional materials that rely upon pictural graphics, use words parsimoniously, and are written at a third or fourth grade level. This is consistent with previous research suggesting that simplistic and straightforward instructions increase the accessibility of health-related information [22]. Participants also raised concerns about the accuracy of self-testing, questioning its usefulness given the potential for false positive or negative results. While such concerns are valid and relevant to various types of disease self-testing kits [24], it is important that public health professionals develop health communication campaigns that emphasize the potential benefits of self-testing kits. By addressing the practical challenges associated with facilities-based testing, such as transportation issues and lengthy wait times, self-testing presents as a convenient and accessible alternative. Additionally, culturally and community-tailored campaigns that suggest when these kits are most useful, such as when experiencing symptoms, before and after large gatherings, or following suspected and confirmed exposure) may help increase their uptake. Such strategies may increase self-testing uptake among community members, fostering a more proactive approach to managing the spread of infectious diseases.

Our findings are consistent with interpretations of well-known health behavior theories and models. The Health Belief Model (HBM), for example, posits that individuals are more likely to engage in health behaviors when they perceive themselves to be susceptible to a condition, believe the condition has serious consequences, and view the benefits of action as outweighing the barriers [19]. Research in the US as well as other countries, including China, have made similar assertions [25,26]. In our study, people more concered about CVDST barriers, such as cost and complexity of instructions, also shared beliefs consistent with low testing self-efficacy, while those more intereste in benefits, such as convenience and comfort shared beliefs consistent with high testing self-efficacy. As such, public health messaging emphasizing susceptibility, severity, and the benefits of self-testing, while anticipating and addressing potential barriers, may improve uptake.

Our findings also highlighted concerns about the potential cost of self-testing kits, with participants expressing reluctance to invest in self-testing kits, especially knowing that the results could be inconclusive or inaccurate. The perceived financial burden and the uncertainty of accurate results were key deterrents, particularly for individuals on fixed incomes. Some participants expressed a willingness to endure the logistical challenges associated with facilities-based testing because it was offered at no cost. Later in the pandemic (and after study completion), the government mailed free self-test kits to much of the country. While data on actual use of these kits are limited, many people requested the kits via online platforms. As the pandemic landscape continues to evolve, we face threats from both novel and reemerging viruses. These threats are exacerbated by politically motivated anti-vaccine rhetoric that undermines public health efforts, may contribute to conditions that enable future pandemics. In response, it is imperative that we identify strategies that ensure self-testing kits are both affordable, available, and widely used, and that the messaging on their appropriate use is clear. Such kits should be provided for free or at a low cost during the early stages of viral outbreaks to encourage widespread adoption and mitigate financial barriers.

Participants noted several facilitators of CVDST, including convenience and comfort. Regarding convenience, in addition to the elimination of travel and scheduling challenges associated with facility-based testing, participants cited the ability to perform tests in the privacy of one’s home thereby avoiding potential viral exposure and transmission, as a key facilitator to uptake. They also highlighted concerns about the discomfort associated with facility-based testing, with several reporting the pain of the procedure as off-putting. The perceived pain reduction, paired with the control participants felt over the testing process, contributed to a preference for self-administered tests. Relatedly, participants provided suggestions aimed at improving the uptake of CVDST. Clear and concise instructions are essential, with a particular emphasis on readability. Video demonstrations were recommended, underscoring the need for visual aids to supplement written instructions. Additionally, participants advocated for a toll-free number to get help, emphasizing the importance of accessible guidance from health professionals. From a diffusion of innovation perspective, CVDST can be viewed as a public health innovation that follows a predictable adoption curve, with early adopters being more open to new technologies and late adopters needing more support and reassurance [27]. Our findings suggest that younger participants were more likely to adopt CVDST early, while older adults expressed hesitancy. Tailoring outreach strategies to each adopter group, such as using peer testimonials for early adopters and offering hands-on demonstrations for late adopters, may accelerate adoption and reduce disparities.

Understanding the barriers and facilitators of disease self-testing, particularly during a viral outbreak, could help us with developing responsive public health interventions that consist of tailored educational materials that address low self-efficacy concerns, provide clear instructions and video demonstrations, and consider cost reduction strategies. Public health campaigns could emphasize the convenience and comfort of self-testing, addressing the barriers identified in this study. Moreover, the inclusion of a toll-free helpline can bridge information gaps for those without regular access to mass and social media and offer support, contributing to a more inclusive and accessible testing approach. Further, the lessons learned from our study can contribute to devising strategies for overcoming barriers to the uptake of CVDST if another novel pandemic threat emerges. Firstly, recognizing the financial constraints associated with self-testing kits, public health initiatives, such as those launched during the COVID-19 pandemic, should explore avenues for securing funding to make these kits available at little to no cost. This could involve collaborations with governmental bodies, private sectors, and philanthropic organizations to ensure the affordability of self-testing kits for the broader population. Moreover, enhancing the clarity and accessibility of instructions is also important. Designing user-friendly instructional materials at lower reading levels and incorporating video demonstrations can demystify the self-testing process, potentially boosting confidence and reducing the perceived complexity. Establishing toll-free helplines staffed by healthcare professionals or other trained personnel, as suggested by participants, could serve as a crucial resource for addressing concerns, clarifying doubts, and ensuring proper test interpretation, further overcoming potential barriers. The proactive integration of these strategies into public health preparedness plans can enhance community resilience and empower individuals to engage in self-testing during unpredictable viral threats, ultimately contributing to a more effective and equitable response.

While this study contributes valuable insights, it is not without limitations. Primarily, the assessment of self-test perceptions was geographically confined to communities in rural eastern North Carolina, potentially limiting the generalizability of findings to other areas of the state, as well as other regions in the US and the international community. Additionally, our study focused only on the perceptions and experiences of African Americans, which may limit generalizability to other ethnic/racial groups. Still, our findings were similar those from other studies focused on people living in the northeast and/or urban settings where a sizeable proportion of the sample identify as African/Black American [19]. Moreover, our sample offered valuable insights into the perceptions of CVDST within a distinct African American community context. A localized focus could not only improve our understanding of community-specific dynamics but could also lay the groundwork for future research to build upon this foundation and explore variations in perceptions across diverse regions. Another limitation pertained to our study’s focus on a self-testing kit that used a nasal swab rather than a saliva test. As such, the degree to which the knowledge and availability of other types of self-tests could affect willingness to test or engage is unknown. Additionally, the study relied on self-reported data, which may be subject to recall bias or social desirability bias. Participants may have over- or under-reported their comfort with or willingness to use self-testing kits given the group setting. Future research should consider triangulating self-reported data with behavioral data or follow-up interviews to validate findings. Finally, while our study captured early perceptions of CVDST, attitudes may have evolved as the pandemic progressed, and self-testing became more widely available. Longitudinal studies assessing how perceptions and behaviors changed over time and in response to public health interventions would have been greatly useful.

The results of this study offer actionable insights and lessons learned that can shape the trajectory of future self-testing campaigns not only for COVID-19 and other respiratory viruses, but also for conditions, such as HIV and other sexually transmitted infections. By addressing affordability concerns, emphasizing benefits, and considering community-specific needs, public health initiatives can better navigate the complexities of testing behaviors during public health emergencies. Additionally, our findings underscore the importance of tailoring self-testing strategies to address barriers such as low self-efficacy, perceived inaccuracy, and cost. Facilitators like convenience, comfort, and privacy should be emphasized in public health messaging. Integrating behavioral theories such as the Health Belief Model and Diffusion of Innovation Theory can guide the design of interventions that resonate with different segments of the population. As society continues to grapple with the aftermath and ongoing challenges of the COVID-19 pandemic, this work highlights the importance of preparedness efforts to prevent future pandemics. Public health professionals have an opportunity to leverage the lessons from this and other studies to mitigate barriers community members may encounter during emergencies or future pandemics, thus contributing to efforts to reduce health disparities and promote equitable access to testing.

Supporting information

Acknowledgments

We would like to thank our study participants for their willingness to share their experiences and insights, making this research possible. We appreciate their time, effort, and commitment to advancing our understanding of this important topic to inform future public health responses to viral outbreaks and pandemic threats.