Abstract
Home COVID-19 test kits are increasingly available in the United States, and efforts are underway to develop ones that are more accessible to people with disabilities. The primary objective of this research was to assess the usability and accessibility of existing home COVID-19 tests among people with disabilities. The aim is to better understand their needs and provide evidence for improved product design. A survey that included short-response questions about user experience with various home COVID-19 test kits was completed by 219 people with vision and mobility-related disabilities. A thematic analysis identified three overarching themes: Ease of Use, Privacy and Autonomy in Home COVID-19 Testing, and Recommendations for Improvement. The results of this study contribute to an increased understanding of how to design appropriate, accessible home COVID-19 test kits for people with disabilities.
Keywords
Introduction
The COVID-19 pandemic posed challenges to people worldwide, and home COVID-19 testing kits introduced a quick alternative way to detect the virus without going to a healthcare provider. As additional variants of the virus (Delta and Omicron) became more prominent, demand for rapid home tests increased substantially (Rader et al., 2022). The surge in demand for home COVID-19 tests prompted a paradigm shift in testing strategies.
Recognizing this, the National Institutes of Health launched the Rapid Acceleration of Diagnostics (RADx) initiative which accelerated these tests’ research, design, and commercialization. Initially, the focus was on developing accurate virus detection tests, followed by obtaining regulatory approval for over-the-counter sales, ensuring quicker and more affordable access to testing for the general population (National Institutes of Health, 2023).
As COVID-19 test kits became more broadly available in the United States, efforts have shifted to focus on developing test kits that are more accessible to people with a range of disabilities, as the current process might not fully align with their needs (U.S. Access Board, 2023; Walsh et al., 2023; Wiley, 2022). Understanding the needs and challenges that people with disabilities encounter when using home COVID-19 test kits is essential to ensure equitable access and to inform the development of more inclusive testing procedures (Boyle et al., 2020). Therefore, the present work aims to better understand the following:
(1) What are the barriers and challenges faced by people with disabilities when using home COVID-19 tests?
(2) What recommendations can be made to improve the usability of home COVID-19 tests for people with disabilities?
Ultimately, this research aims to inform the development of home test kits based on an increased understanding of the needs of people with disabilities.
Methods
A survey was designed to capture information about the difficulties people with disabilities experienced when using a home COVID-19 test kit. Participants were asked to report any specific challenges they experienced throughout the testing process. They were also asked about their experience with the instructional materials and any assistive devices they used to complete the test. Participants were encouraged to provide detailed descriptions of their experiences. Lastly, participants were asked about smartphone and tablet proficiency so that researchers could better understand user needs and make design recommendations with that in mind.
Before distribution, the survey was checked to ensure it was accessible to people with vision-related disabilities and compatible with a variety of screen readers. A large Research partner in Atlanta, Georgia, distributed the survey online. People with disabilities who had previously used home COVID-19 tests were invited to participate. The survey took approximately 45 min to complete. To ensure high-quality data, duplicate and incomplete responses were removed.
Participants
A total of 219 participants were included in this study. Participants reported various disability statuses. Those include “very little to no vision” (n = 153), “low vision” (n = 71), “limited hand dexterity or limited fine motor control” (n = 2), or multiple disabilities (n = 15). “Low vision” refers to people who rely on visual correction (e.g., glasses or contact lenses). In contrast, “little to no vision” refers to people who are partially sighted, legally blind, or totally blind (Szpiro et al., 2016).
Approximately 72.60% (n = 159) of participants were under the age of 64. Next, 96.26% (n = 213) of participants reported owning or accessing a smartphone or tablet. When asked how they rated their skills using their smartphone or tablet, the participants (n = 213) indicated that 54.34% were extremely proficient, 26.48% were somewhat proficient, 14.16% were average, 2.28% were somewhat limited, and 0% said that they were extremely limited.
Results
These data were analyzed using a thematic approach to describe patterns across qualitative data (Braun & Clarke, 2006). Following this procedure, a thematic codebook was created and iterated upon until a final version was reached. A codebook is used to track common themes across participant responses. The codebook was subjected to an external review by another researcher, who assessed its alignment with the participant responses to the associated codes to ensure reliability and validity. In addition, a cost and benefit analysis (Jabban et al., 2022) was conducted to evaluate the implications of identified themes systematically.
Three overarching themes, Ease of Use, Privacy and Autonomy in Home COVID-19 Testing, and Recommen-dations for Improvement, were identified in addition to several subthemes. The following sections will provide an overview of these themes and the subthemes that contribute to them.
Theme 1: Ease of Use
Participant responses regarding the experience of home COVID-19 testing are included in this theme. This theme comprises three subthemes. First, participants faced difficulties in choosing and obtaining kits. When it came to brand decisions, they were influenced by factors such as family recommendations and government guidance. Additional obstacles included financial constraints. Second, participants faced challenges with support resources. They emphasized the role of sighted assistance and that they often lacked it. Moreover, there is a need for additional tools to help them complete the test procedure. Lastly, many participants experienced self-doubt during the testing process. This is described in more detail in the subthemes 1.1 to 1.3.
Subtheme 1.1: Choosing and Obtaining a Test Kit
Participants formed attitudes about using home COVID-19 test kits that were influenced by family and friends, government initiatives, and personal experiences. Some participants followed family recommendations for test kits that were easy to use. Meanwhile, some indicated they used the test that government officials recommended, while others preferred familiar tests they had used before. Lastly, in some cases, participants expressed skepticism about the virus and questioned whether the tests were necessary.
Among those who chose to test for the virus, participants indicated they faced challenges when obtaining available tests. This was due to multiple reasons, such as financial cost, product availability, and concerns over being unable to find sighted assistance when purchasing the test. Some participants indicated that test kits designed for accessibility are more expensive than those not accessible. Other participants suggested that the difficulty of obtaining the test kit and completing the test procedure exceeded the benefits of taking the test.
Subtheme 1.2 Availability of Assistance
Participants identified issues regarding the resources and assistance needed for the test procedure. Examples include difficulties with screen readers, instructional videos without playback options, and manipulating test components. Participants also expressed concern over difficulties encountered when they could not receive sighted assistance from others. Sighted assistance refers to instances where a sighted individual, through in-person meetings or phone calls, gives verbal assistance to a person with a visual impairment (Xie et al., 2023). Most participants referred to family members for sighted assistance. However, many did not have access to sighted assistance, which introduced challenges during the testing procedure and interpretation of the results.
“There needs to be a way for physically disabled individuals to receive human assistance if self-testing is not possible.” -Person with low vision and limited hand dexterity or fine motor control.
Subtheme 1.3 Facing Uncertainty
Participants expressed uncertainty about administering the test due to doubts about their competence and ability to complete the procedure successfully. Examples of participants expressing uncertainty include instances of questioning if they were performing the procedure and interpreting the results correctly. Participants expressed hesitation when completing the test independently, with some taking extra time during specific steps. This often led to feelings of frustration and failure.
“If I had to perform the test independently, I feel confident that it would be nearly impossible to achieve.” -Person with very little to no vision.
The number of test components also made participants feel uncertain. While some participants desired multiple test kits as a contingency in case of mistakes, others indicated they were confused about the number of components, leading to concerns about errors. Regarding the test procedure, participants expressed that test kits requiring the user to drop specific amounts of the solution into the sample well were difficult to complete. For those with vision-related disabilities, counting the drops was a serious concern, while those with mobility-related disabilities found the small components difficult to manipulate.
“The process to drop the sample in the sample well involves counting 5 drops, yet you have no way of knowing whether a drop dropped, let alone figuring out how many drops you dropped. It would be great if the app can make a sound or some indication that a drop has been added to the sample well.” -Person with very little to no vision.
Theme 2: Privacy and Autonomy in Home COVID-19 Testing
This theme emphasizes the role of privacy when conducting a COVID-19 test at home. The participants who completed tests independently felt their privacy was maintained, while those requiring assistance expressed concerns. Moreover, this theme conveys the participants’ desire for autonomy when completing the testing procedure, often emphasizing discomfort with external assistance and concerns over spreading the virus. This theme demonstrates the complexities of preserving health privacy and individual autonomy. This is described in more detail in the subthemes 2.1 and 2.2.
Subtheme 2.1 Health Privacy
Participants emphasized that part of the motivation to use the home test was the ability to complete the test without the presence of unfamiliar individuals. However, many participants were not confident they could complete the test procedure independently. Participants who required assistance from another person, whether physically or remotely via phone or video call, indicated concerns over maintaining their privacy during the testing process. Participants expressed that requiring another person for assistance meant an invasion of privacy due to concerns about divulging personal details and sharing test results. Participants sometimes opted to use a more difficult test independently rather than seek assistance to protect their privacy.
“Add something tactile, braille, or something else to the boxes so people know what they are. Don’t require blind people to give up their privacy to take a test.” -Person with low vision
Subtheme 2.2: Desired Autonomy
Participants frequently expressed feeling uncomfortable requesting assistance, especially those who lived alone. Even if friends and family were available, participants hesitated to ask for help due to concerns over transmitting the virus. Ultimately, the safety of others was a priority.
“Having to ask a sighted person to help defeats the purpose of having a home test for the visually impaired. I did not want to risk any of my friends or family getting sick to assist me in completing the test.” -Person with very little to no vision.
Theme 3: Recommendations for Improvement
Lastly, participants called for inclusive design and simplified procedures, emphasizing the importance of improving accessibility and reducing complexity in home COVID-19 testing. Participants often attributed errors in completing the testing procedure or interpreting results to their disabilities. This ultimately highlights the need for test kits that reduce the likelihood of error and foster confidence in the user. Participants indicated that smoother test performance, with minimal complications, would improve their confidence and contribute to a more positive testing experience. This is described in more detail in the subthemes 3.1 and 3.2.
Subtheme 3.1: Product Design
Participants suggested changes to product design and procedure. Specifically, some found the task of squeezing the test tube and dropping the test solution into the sample well to be difficult. To address this concern, participants recommended puncturing the solution tube for a smoother liquid flow into the sample. They also suggested using a dropper that generates defined drops or eliminating the need for measurement.
Some participants compared the types of tests they used. Often, it was indicated that the card-style test kits were favored over the tube-style test kits due to fewer measurement steps. Participants suggested that the number of steps to complete the testing procedure was complicated and that fewer steps would improve ease of use.
“I hope that one can find a way to do the test that blind people can feel everything, and when the results appear, there could perhaps be one sound for negative and another sound for positive.” -Person with very little to no vision.
Lastly, participants desired braille instructions, clear procedures, and simple diagrams. They also stated that improved descriptions of the test components and their functions would be desirable. One participant indicated they would prefer to have the instructions available before obtaining the test kit to determine if it is appropriate for their needs.
Subtheme 3.2 Technological Aids
Regarding instructional materials, participants suggested providing digital instructions that could be downloaded or accessed by scanning QR codes. Suggestions were also made for technological aids such as audio output from a mobile application. More specifically, an application that could guide them verbally through the testing process and interpretation of results would be beneficial. Alternatively, some participants suggested that text message notifications with results would be easier because they would not require additional application downloads.
To address privacy concerns regarding needing a sighted assistant, participants proposed using nonvisual cues or audio to communicate test results, incorporating braille for instructions, and emphasizing nonvisual or deaf-friendly feedback. The addition of technology as a method of assistance also helps address autonomy concerns by fostering the ability of people with disabilities to complete the home testing procedure independently.
Discussion
These results demonstrate the challenges faced by people with disabilities throughout the home COVID-19 testing process, from test acquisition to procedure completion and result interpretation. Manufacturers and policymakers should consider these insights to refine future home COVID-19 test kits and ensure that they can be completed independently by people with disabilities. This involves engaging people with disabilities in all phases of the design process.
Specific recommendations for the design of test kits include user-friendly, clear, and concise instructional designs available in various modalities (e.g., text-based, audio-based, or video-based). Test kits should also contain easily identifiable and manipulable components that accommodate a range of dexterity and mobility limitations. This could be done by enhancing tactile feedback, simplifying package design, and reducing the need for fine motor skills. Test kits should also be able to convey and provide results both visually and audibly. Lastly, test kits should be labeled for accessibility, highlighting that some products might work better than others depending on a user’s unique capabilities and limitations.
Future Work
With the increased availability and popularity of home testing, recent efforts have been made to develop kits that can detect multiple viruses within one test (e.g., test for COVID-19 and Influenza). The Food and Drug Administration (FDA) recently authorized the first over-the-counter multiplex home test kit in 2023 (McKinney, 2023), and similar products are anticipated to follow. The demand for more advanced home testing kits provides a unique opportunity for researchers and designers to utilize the overall results from this work when developing multiplex tests that are accessible for people with disabilities. However, kits that assess multiple viruses present new challenges. Specifically, little is known about effectively designing instructions for these more complex tests and how the tests should convey the results to the user in an easy-to-understand format. Future research is needed on designing these tests for people with disabilities.
Conclusion
People with disabilities experience various challenges throughout the home COVID-19 testing process, from test acquisition to procedure completion and result interpretation. Results indicated that many improvements to the product design and instructional materials are needed to improve home COVID-19 test kits so that people with disabilities can complete the testing procedure independently and confidently. Moreover, these results emphasize the importance of including people with disabilities in all phases of the design process, thereby creating equitable products for all users.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work is supported by NIH grants U54 3EB027690 02S1 and U54 3EB027690 05S1. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
