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Abstract

People with disabilities (PWD) face significant health disparities, yet they have largely been excluded from health research and clinical trials, including in-person and virtual focus group research. The lack of clear protocols for recruiting research participants with disabilities and designing fully accessible online focus groups may contribute to their exclusion. Additionally, barriers to screening, consent, and hosting focus groups with PWD have been exacerbated by the COVID-19 pandemic. However, with planning, flexibility, and creativity, researchers can anticipate and overcome barriers to inclusion and conduct critical research that is accessible to PWD. This article presents a concrete example and lessons learned from the application of principles of accessible research design to a project utilizing virtual focus groups. The examples shared demonstrate how to approach research with PWD by outlining universal principles to hosting focus groups and encouraging project-specific measures to make the research more accessible to the participants involved. We argue that accessible research design should prioritize inclusion and flexibility to meet the diverse needs of participants. Community engagement, financial resources for necessary accommodations and modifications, and a commitment to disability justice principles are all necessary components for successful research that fully includes PWD. By adopting disability humility and embracing universal research design that allows for accommodations and modifications, researchers can maximize the potential for inclusive and impactful research.

Keywords

accessible research design virtual focus groups accessible focus groups disability humility disability justice

Introduction

People with disabilities (PWD) comprise a significant part of the population; approximately 26% of all individuals in the United States have at least one disability (Centers for Disease Control and Prevention [CDC], 2020). Moreover, PWD experience some of the most profound health disparities, including both limited access to health care and poor health outcomes (Forman-Hoffman et al., 2015; Mitra et al., 2022; National Council on Disability, 2022). Yet, despite the critical input and experience they can share, PWD have historically been excluded from health research and clinical trials that seek to understand and ameliorate these health disparities (Feldman et al., 2013; Mitra et al., 2015). Similar to other underrepresented groups, PWD have been excluded due factors such as researcher-perceived difficulties related to inclusion (Kroll et al., 2007) or overly restrictive exclusion criteria, and, as a result, much health research fails to inform us about the individuals who may benefit the most from this work (Rios et al., 2016). Additionally, the use of proxy participants, such as caregivers or providers, as a way to represent the perspectives of PWD is insufficient, as caregivers and other proxy participants bring their own perspectives to bear on disability and cannot fully represent the lived experience of PWD (Kroll et al., 2007; Owen et al., 2016).

Online surveys and remote, web-based interviews and focus groups make participation in human studies research more accessible for PWD, however. Avoiding the risks posed by in-person meetings, immunocompromised individuals and people with mobility impairments can join online focus groups or interviews from home using any number of video-calling platforms, such as Zoom, Skype, Google Hangouts, Microsoft Teams, or Apple FaceTime. Likewise, the ability to mute or leave the conversation with the click of a button offers those who may need assistance navigating through new spaces, such as those with vision or mobility impairments, more agency vis-à-vis voluntary participation, specifically the ability to excuse oneself from a difficult or potentially triggering conversation. Many of these platforms provide captions or live transcripts, offering accommodations for those with hearing impairments or processing delays, and the live chat features allow text-based communication for those who do not converse through speech. Moreover, video calls enable live American Sign Language interpretation for Deaf or hard of hearing folks. Many of these accessibility features, such as live transcription, also benefit researchers, as they quickly produce a reasonably accurate interview or focus group transcript that can be reviewed against recordings of online video calls and subsequently analyzed.

Yet, while important recommendations exist regarding methods of planning for and facilitating focus groups and interviews to better include and engage those with disabilities (see Table1) (Caldwell, 2014; Hollomotz, 2018; Kroll, 2011; Rios et al., 2016; Trevisan, 2021; Verseghy et al., 2020), we found few explicit protocols to guide the recruitment of research participants with disabilities or best practices for the design and implementation of fully online focus groups that would be accessible to a pan-disability—i.e., any disability type (Owen et al., 2016)—study population when we began our research in late spring of 2022. In an effort to fill this gap, this paper provides a concrete example of virtual focus group research design, as well as lessons learned from our efforts to apply the principles of accessible research to accommodate the needs of a pan-disability population as part of a larger project designed update and expand health professions education related to caring for PWD. Accessible and inclusive research design requires creative adaptations; as such, while we predominantly describe our experiences and lessons related to virtual focus groups, we also share examples of how we pivoted to in-person focus groups and on-one-one virtual interviews. We share these as examples of how researchers must be flexible and provide accommodations or modifications (Rios et al., 2016) based on the needs of their participants.

Table 1.

Key Recommendations for Inclusion and Accommodations for Focus Group Accessible Research Design.

Citation	Target Community and Research Type	Key Recommendations for Inclusion and Accommodations
Rios D, Magasi S, Novak C, Harniss M. Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies. Am J Public Health. 2016;106(12):2137–2144. doi:10.2105/AJPH.2016.303448	Pan-disability; general accessible design	Plan research using universal design. They provide an extensive list of recommendations regarding recruitment, consent, accessibility, transportation, measurement, and interventions (Table 1) Be prepared to offer accommodations related to the setting, mode of participation, mode of presentation, scheduling/timing. Multiple examples of accommodations are presented Modification to the protocol may be necessary; be aware that this may result in alternate forms of testing, reduction in standardization, and possible loss of internal validity Conduct standard screening of accessibility needs with a set of questions related to vision including color discrimination, hearing, fine motor, mobility, speech and reading Consult with experts (participant, caregiver, others with similar disability) when unsure of how to include or accommodate PWD Document changes in protocol because of accommodations or modifications
Kroll T. Designing mixed methods studies in health-related research with people with disabilities. International Journal of Multiple Research Approaches. 2011;5(1):64–75. doi:10.5172/mra.2011.5.1.64	Mixed method design	Plan research using a mixed method approach. This allows for a more inclusive approach because PWD can be involved in different stages When obtaining informed consent, physical and cognitive capabilities of the target population should be considered – participants were given study information in multiple formats such as oral, written, and pictorial To overcome barriers that have traditionally excluded PWD: Positive attitude, inclusive stance, environmental accommodation, personal assistance
Trevisan F. Making focus groups accessible and inclusive for people with communication disabilities: a Research note. Qualitative Research. 2021;21(4):619–627. doi:10.1177/1468794120941846	Communication disabilities; focus groups	Plan research using a universal design approach. Make a more inclusive focus group – identify needs and preferences of participants by giving out screener questionnaires Two steps crucial to inclusion of people with communication disabilities: Organized data collection that guarantees equal opportunity, data analysis should be structured in a way that ensures appropriate interpretation of people Use of smaller focus groups of people who are already have preexisting friendships Choose focus group locations wisely. Non-medical settings are less stressful
Verseghy J, Atack L, Maher J. Key considerations when interviewing individuals with expressive language difficulties. Qualitative Research. 2020;20(6):960–970. doi:10.1177/1468794120909038	Expressive language disabilities; Interview	Qualitative Appreciative Inquiry approach can be used with individuals with developmental disabilities and expressive language difficulties Planning reflexivity – researchers need to recognize own biases; access – parents or caregivers may restrict access to reduce potential stress without asking individual if they wish to participate; complex issue, work early with gatekeepers Location and exchange: Rapport building is critical; interview should occur in location that is comfortable to participants Conducting interview: Inarticulateness – restricted language combined with self-esteem issues, power imbalance, isolation. Techniques to address can include use of symbols, sign language, successive approximations, use of a parent or caregiver to explain responses. Risk for marginalization with use of proxies Unresponsiveness – not responding; participant may not want to respond. Mix of open- and close-ended questions can address this. Requires flexibility on part of protocol and researcher and observation of behavioral cues Frame of reference and time – participants may have challenges with future and past; and have different frame of reference; use shorter, present-based questions Analysis and reporting: Put priority over participant’s own words (vs proxy), conduct member checking with transcripts and themes/results
Caldwell K. Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Research. 2014;14(4):488–507. doi:10.1177/1468794113490718	Intellectual disabilities; Interviews	Describes use of dyadic interviewing - used as an accommodation for individuals with intellectual disability – use of joint interviews with family or staff; assumes interdependence rather than independence with a focus on self-determination (for example, participants choose their own support person); does not place unrealistic demands on participants Opening the interview- build rapport and trust, spread interview over 2 or more sessions relieves pressure, reduces participant fatigue Consider the possibility that research participants may exhibit submissiveness, suggestibility or have difficulty in understanding content of questions – important to explain
Hollomotz A. Successful interviews with people with intellectual disability. Qualitative Research. 2018;18(2):153–170. doi:10.1177/1468794117713810	Intellectual disability; Interviews	Successful interview: Responsive approach to each participant's particular communication style combined with avoidance of inaccessible question formats Use of plain language, concrete reference tools, namely picture cards and photo-story vignettes, avoid metaphors and ambiguous expressions, avoid modifiers and negatively worded questions Interviews should not be lengthy – stop when respondents became tired of talking Flexibility in responding to communication preferences, ability to adjust expectations
Kroll T, Barbour R, Harris J. Using focus groups in disability research. Qual Health Res. 2007;17(5):690–698. doi:10.1177/1049732307301488	Disability research; focus groups	Positive attitude, inclusive stance, skilled moderation paired with environmental accommodation, and personal assistance Planning: Checklists on who to include in sample, how to contact individuals who meet inclusion criteria, what accommodations need to be made Recruitment: Recruitment material be available in multiple formats; can have budgetary implications Setting characteristics – focus group facilities need to be universally accessible – important to note size of focus group typically 4–8 or 6-12 participants Participant comfort takes priority in terms of mental fatigue

In the design of our recruitment materials and interview/focus group protocols, we sought general principals and best practices that would contribute to universal design for virtual focus groups accessible to those with any type of impairment, which we complemented by additional accommodation and modification as needed (Rios et al., 2016). Although the primary objective of our interview and focus group research was to identify learning goals for simulated patient encounters that would both impart the skills and knowledge necessary to provide high-quality care to patients with disabilities and dispel ableist stigma, we deliberately engaged our interview and focus group participants on the topic of potential accommodations we could provide, soliciting informal feedback on what worked well and what needed improvement in our recruitment and research design.

Synthesizing what we have learned through experience, informal feedback from our research participants, and a review of the published literature on accessible research design, this article begins by establishing the necessity for accessible research methods in healthcare contexts, especially, with a discussion of the motivation for our larger project and an overview of the barriers to inclusion in healthcare research experienced by PWD. Next, we consider the virtues of universal research design, accommodation, and modification, as described by Rios et al. (2016) in the design and implementation of accessible focus group research. We present an example of how we worked towards achieving inclusion for virtual focus groups and, drawing on the work of disability scholars and activists, we extend Rios et al.‘s approach to accessible research. We describe how we applied a Disability Justice framework which embraces disability humility and centers flexibility, community engagement, and a commitment to collective access.

Barriers to Inclusion in Health Research

PWD experience significant health disparities, and in September 2023, the National Institutes of Health designated PWD as a population with health disparities, citing “a wide and varying range of health conditions leading to poorer health and shorter lifespan” and “discrimination, inequality and exclusionary structural practices” contributing to pervasive health inequities (National Institutes of Health, 2023). Patient-centered care for individuals with disabilities, with an emphasis on avoiding assumptions and listening to patients, has been proposed as a necessary corrective (Iezzoni, 2006). However, most health professions curricula lack disability-focused education (Ankam et al., 2019; Edwards & Hekel, 2021; Iezzoni et al., 2021), and there is little research establishing best practices for disability education across the spectrum of health professions training (Ioerger et al., 2019). For example, despite the Association of American Medical Colleges (AAMC)’s decision to expand the definition of cultural humility within their list of core Entrustable Professional Activities for Entering Residency to include direct mention of “disabilities” as of 2014 (Association of American Medical Colleges, 2014), medical providers remain largely unprepared to meet the healthcare needs of PWD, in no small part because students still receive little, if any, formal disability education in medical school and what training is provided is sporadic and inconsistent, rather than standardized training in disability and the value of longitudinal training (Santoro et al., 2017). Moreover, existing health professions education is rooted in a medical model of disability centered on deficit and impairment (Reynolds & Wieseler, 2019; Sarmiento et al., 2016) and, unless complemented by perspectives from PWD, disabled activists, and scholarly work in the field of Disability Studies, risks perpetuating implicit, interpersonal, and structural bias and discrimination against PWD, known as “ableism” (Couser, 2011; Reynolds, 2018).

At the same time, research suggests that early encounters with PWD can both counter ableist thinking and aid in health professions students' development of core skills and knowledge necessary to provide competent, compassionate care to PWD (Santoro et al., 2017). Thus, with the intention of avoiding assumptions and heeding disability activists’ rallying call “nothing about us without us”, we set out to expand our disability-focused medical student curriculum with the input and guidance of our local disability community. We began our project with the design of focus groups and interviews. The goal of the focus groups and interviews was to collect information from (1) members of our local disability community, and (2) recently graduated medicine and pharmacy alumni from our health professions university to guide the development of simulated patient cases depicting patients with disabilities. Our project coincided with the height of the COVID-19 pandemic and we knew many of our focus groups and interviews would need to be conducted virtually given the higher COVID-19 risk for certain groups who comprised our pan-disability study population (Landes et al., 2021). We hoped that virtual focus groups would help remove some of the barriers for all of our research participants, such as reducing challenges of transportation for an in-person location (Rios et al., 2016) and decreasing the time commitment by eliminating travel times. At the same time, we recognized that virtual focus groups and interviews would introduce a new set of barriers for participants—as well as a new set of challenges for us as researchers—yet we discovered little information and few published guidelines related to increasing accessibility in virtual focus groups and interviews for either specific disability communities or pan-disability groups.

To meet the needs of our research population, we began by exploring general research design recommendations to ensure accessibility and inclusion, reviewing existing accessible research design best practices for in-person focus groups for PWD, and finally examining online resources related to increasing virtual accessibility to assist our planning and implementation for this research (see Table 1). Because our pan-disability study population included a mix of individuals who are blind and/or low-vision, Deaf or hearing impaired, have mobility impairments, have cognitive or intellectual impairments, or some combination of impairments, we also consulted guidelines specific to these communities. We anticipated additional barriers posed by virtual settings could include: (1) challenges logging into web-based meetings, (2) difficulty scheduling two separate meetings or one longer meeting to conduct the pre-eligibility protocol required by our IRB to determine decision-making capacity, and (3) providing written consent via scanning and uploading documents.

Throughout this process, we asked the participants for feedback and suggestions about the steps we were taking to improve inclusion. Additional barriers uncovered through conversations with participants revealed: problems with screen reader and document compatibility, challenges locating invitation emails that included virtual meeting links, and difficulties with sustained focus and attention during virtual meetings. As researchers, we also faced anticipated and unexpected barriers using the virtual format. For example, we were required by our IRB to develop and implement a virtual pre-eligibility protocol to determine decision-making capacity of disabled research participants and we faced challenges determining the best way to provide incentives. For example, virtual gift cards were not convenient for several of our blind/low-vision participants. Ultimately, we found that existing research design recommendations were a useful starting point and could offer valuable insight regarding establishing accessible protocols, but that applying a Disability Justice framework and embracing disability humility were essential to address the unique needs of our participants.

Universal Research Design, Accommodation, and Modification

The principles of universal research design are the foundation of accessible research projects, encouraging researchers to preempt barriers to inclusion by developing protocols that meet a robust array of needs and preferences. Adapted from the principles of universal design, which addresses the design of accessible products, buildings, and spaces, the goal of universal research design is for the greatest number of people to be able participate in a research study without the need for additional accommodations or modifications (Williams & Moore, 2011). We looked to the work of Rios et al. (2016), which provides a useful structure for planning and implementing research designs that ensures inclusion of a pan-disability population, to guide the development of our project. Rios and colleagues’ framework suggests starting with universal research design to benefit the most number of people, supplementing with additional accommodations as needed to ensure those with more specific needs are included without altering the fundamental constructs to be measured, and finally, if individuals still face barriers, implementing targeted modifications which alter the design in order to achieve inclusion (see Rios et al., 2016, p. 2140, Table 1 for examples of universal research design). As defined by Rios et al., when universal research design is not sufficient to ensure inclusion, “accommodations” change the way a task or activity is presented or conducted to further include additional participants, however, the fundamental constructs to be measured remain the same (see Rios et al., 2016, p. 2141, Table 2 for examples of research accommodation). Finally, “modifications” to the research design may be required if target participants continue to be excluded from the study. While modifications increase inclusion, they can reduce standardization and the underlying construct being measured through, for example, alternate versions of assessments. Following Rios et al. (2016) in our own research, we aimed to standardize as much as possible using universal design principles in the initial research design and planning options for accommodation where necessary, yet we found true inclusion will require modification in some instances. Modifications impel researchers to interrogate their priorities and to decide whether the inclusion of PWD warrants potential deviations or inconsistencies in their data set. In our experiences, the reduction of standardization and risk of reduced validity introduced by modifications were a justified tradeoff for increased inclusion, especially given the widespread exclusion of PWD from existing health research. Moreover, the nature of our focus group research meant that modifications to the research protocol did not considerably impact our qualitative analysis.

Table 2.

Virtual Focus Group and Interview Considerations: Universal Design, Accommodation, or Modification.

	Universal Design Recommendation	Accommodations	Modification
Recruitment	• Seek out existing groups; use networking and connect with potential participants through a centralized point person (note that this can result in selection bias and potentially less representative group)
Screening	• Conduct survey or gather information regarding accessibility needs that move beyond universal design• If survey-based, test to ensure compatibility with screen readers
Scheduling	• Send email reminder with meeting link 30 minutes prior to session	• Separate into two sessions consent meeting from focus group or interview as needed for groups due to fatigue or attention concerns• Consider scheduling with the help of a caregiver, aide, caseworker, etc. This is especially important for those who may not have their own email addresses, may have difficulty logging in to sessions and using the software features• Limit focus group to smaller number of individuals to increase participant comfort and opportunity for participation	• Smaller size could result in confidentiality concerns; be prepared to accept request for interview or to share written information after the session; recognize this may result in loss of study internal validity as the assessment method has been altered
Consent	• Provide consent information in multiple formats. For example, pre-record a video PI’s reading aloud consent information and include closed captioning. Post link and share with pdf copy• Ensure consent forms are compatible with screen readers• Be prepared to conduct and record verbal or alternate method of consent	• Consider including a caregiver, aide, caseworker, etc. to remain during the session to assist with rephrasing questions and content, without altering or influencing the nature of the content, as needed
Participation	• Enable closed captioning• Send questions in advance of session to give participants time to consider content before session• Allow participants to respond to questions and discussion using chat features; post focus group questions into chat• Periodically stop conversation to give participants a chance to consider their responses	• Provide ASL interpretation as needed• If ASL interpreter is being used, “pin” interpreter so they remain visible despite who is speaking• Consider revising from online to in-person, phone or other methods for certain groups that may find online especially difficult to navigate• Consider including a caregiver, aide, caseworker, etc. to remain during the session to assist with rephrasing questions and content, without altering or influencing the nature of the content, as needed	• Consider switching to alternate technique such as interview, nominal group technique, Delphi group if focus group is not accessible. Recognize this may result in loss of study internal validity as the assessment method has been modified• Offer option to follow-up and share thoughts after the focus group or interview because of processing delays

Prioritizing Inclusion: an Example of Accessible Research Design

Rios and colleagues’ (2016) attention to modification and accommodation within universal research design highlights the ways in which accessible design is a dynamic of ongoing refinement rather than the adoption of a fixed, standardized set of protocols. While there are certainly accessibility practices all researchers can, and even should, adopt to ensure their projects will accommodate the needs of a diverse participant population—e.g., using the automatic transcript or closed captioning feature in a video calling platform, such as Zoom—truly accessible design is tailored to the specific needs of a research population. The accommodation and modification prescribed by accessible research design thereby necessitate flexibility, community engagement, and commitment to disability justice—all dimensions of what disability theorists and activists describe as “disability humility.” Here, we describe our project development, guided by the principles of universal design, and identify where there was need of accommodation and modification to ensure inclusion of our study population, demonstrating accessible research design in practice. Our modification and accommodation efforts were complemented and enriched by our commitment to practicing disability humility, which we define and describe here as a necessary component of accessible research design. We aim both to present reproducible research methods and protocols that fellow researchers may implement when convening virtual focus groups, as well to encourage researchers to cultivate disability humility.

We used existing guidance regarding in-person focus groups as well as best-practices regarding universal design for virtual meetings to structure our virtual focus groups (Table 1). Table 2 provides considerations for inclusion based on the actions we took during recruitment, screening, scheduling, consent, and focus group participation to ensure our study was inclusive of our population, categorized by whether these actions would be part of universal research design, accommodation, or modification.

Recruitment

Our first step included connecting with and recruiting participants through local disability-focused community organizations (Kroll et al., 2007). We reached out to a variety of organizations and made connections with organizations devoted to serving and advocating for the blind or low-vision, Deaf or hearing impaired, those with cognitive or intellectual disabilities, and mobility impairment. We asked our contacts to share our recruitment materials, which included an interest survey and a copy of the informed consent form, as well as a link to a video that described the study. We acknowledge that there can be limitations with recruiting from such groups, particularly selection biases. For example, members of organizations may be less representative than non-members, as they may be more involved in their own care and/or better advocates for themselves compared to non-members; alternately members of disability groups may receive many requests to participate in research and the perspectives of those who repeatedly agree to participate may be overrepresented (Kroll et al., 2007). To expand our reach, we also asked that participants share recruitment materials with friends and others in the community.

We discovered one of the best ways to provide information about the study was to pre-record a closed-captioned video of the principal investigators describing the study and then reading aloud the informed consent documents. We then shared this video with our contacts and asked that they provide the link to interested individuals. The use of the captioned video also helped to streamline our screening and consent processes, detailed below. To engage participants with developmental and intellectual disabilities, we partnered with a contact such as a caseworker, caregiver, or family member as needed through all steps of the research process. We asked them to assist as needed with logging in, to remain nearby during the session, and/or reiterate or clarify our questions or participant comments. Crucially, we engaged caregivers and family members to enable the participation of disabled participants rather than as proxies recruited to speak on behalf of PWD. We recognize that this modification may have influenced the validity of the study, however, participation was not possible without those modifications. For example, caregivers helped to rephrase questions in terms more easily understood by the participants and when we did not necessarily understand the speech patterns of some individuals, rephrasing akin to translation was necessary in some instances. We interpreted these modifications as communication aides and took care to prevent the assistant from asserting their own perspective and masking the true voice of the participant. To ensure the individual assisting was not speaking on behalf of the participant, we (1) held discussions with the assistant at the beginning of the session and set clear expectations in advance regarding their role, (2) we allowed the participant decide if they wanted the assistant present during the session, and (3) ensured we, as experienced facilitators who are trained to communicate with individuals with disabilities, communicated directly with participants rather than caregiver and redirected as needed. We recommend researchers engage in similar training and preparation when providing these types of modifications.

Screening

To facilitate focus group scheduling, an online survey requested contact information and availability of interested individuals. Additionally, we asked participants to report any of their accessibility needs to participate in an online focus group (see Table 3; Kroll, 2011; Kroll et al., 2007; Rios et al., 2016; Trevisan, 2021). Our questionnaire began with the stem: “Would any of the following help you join the Zoom focus group conversation? Pick all the ways that will help you join the conversation.” and listed several options. Several options also included branching questions, for example, if an individual indicated “I will need an ASL or other interpreter,” the survey branches to ask, “If you will use an ASL or other interpreter, will you have someone with you or do you need us to provide an interpreter?” Based on the accommodations requested, we adapted our screening and consent processes to meet the needs of our study recruits. Indeed, we created the captioned video describing the project and narrating the informed consent document at the request of our blind and low-vision participants as an alternative to using a screen reader.

Table 3.

Virtual Focus Group Screening Survey Items.

Would any of the following help you join the Zoom focus group conversation? Pick all the ways that will help you join the conversation.

Please stop the conversation from time to time to give me a chance to think about my responses

Please call on me so I can respond if I want. I Can choose not to respond.

Please provide the Zoom closed-caption feature so I can read the conversation as it is happening

I would like to have a copy of the focus group questions before the session

I will need an ASL or other interpreter

Branching Follow-up: If you will use an ASL or other interpreter, will you have someone with you or do you need us to provide an interpreter?

I would like descriptions of images, or other visual materials, to be said out loud during the focus group

Branching Follow-up: Would you like the focus group leader to provide image descriptions or is there someone else you would prefer to do this during the focus group?

I would like to use the Zoom chat to give responses and comments

I will use assistive technology (for example iPad or other device) to speak during the focus group

Branching Follow-up: If you use assistive technology, what should we know or do to help you use this technology during the focus group?

None. I do not need any help to join the conversation.

Please share any other ways or things we can provide that will help you join the conversation.

Consent

After completing the survey, the IRB overseeing our project required we meet individually with participants from the disability community via Zoom to ensure eligibility and capacity to independently consent to participate in the study. Part of this process required participants to respond to basic questions about the study and provide their reasons for wanting to participate. We encouraged participants to review the video describing the study and the informed consent form as many times as needed before meeting with the principal investigators to complete the eligibility and consent processes. Rather than seeking a specific correct or incorrect answer, we sought to ensure participants had a general understanding of our procedures. For example, to assess for understanding of confidentiality, we held a discussion with each individual until it was clear to us that they understood that we would not share their data with their health care providers, family, or friends. Some method of screening for capacity to consent was required by our IRB for some of our population, and this process did screen out a few potential participants. However, applying this method broadly across all disability populations as stipulated added an additional, often unnecessary, access challenge. For example, bias and stereotypes often conflate sensory impairment with incompetence (Fischbein et al., 2023; Heydarian et al., 2021); requiring all participants with disabilities prove their decisional capacity during the consent process is problematically paternalistic, similarly conflating disability with incompetence. Pre-screening for decisional capacity was unnecessary for the majority of our participants with mobility and/or sensory impairments and thus a well-intentioned requirement of the IRB to protect a vulnerable population had the unintended effects of undermining the autonomy of PWD. Unfortunately, this type of requirement perpetuates ableist stereotypes vis-à-vis intelligence and competency, and, paradoxically, limits the voices of those with disability (Bard, 2021).

However, the opportunity to meet individually with participants to describe and explain the study was beneficial for ensuring accessibility more fully. Rather than mandating a required assessment of capacity for all those with disabilities, we advocate for a robust informed consent process that includes sharing an accessible video describing the informed consent material to be reviewed in advance of the formal consent process, and then seeking clarifying questions at the beginning of the consent process. We found that this approach provided additional room to ascertain further accommodations that may have been needed. We also note that modifying procedures to capture the true capacity for consent still ensures participant understand of project as well as provides opportunities to discuss participant questions and concerns. We encourage researchers to follow the guidance provided by Celia Fisher, director of the Center for Ethics Education at Fordham University, to “engag[e] adults with mental disorders as partners in creating respectful and compassionate consent procedures” (Howgego, 2014). For future projects we plan to include those with disabilities, particularly those with intellectual disabilities, in the planning process to help design the tools we use for determining consent capacity.

As noted above, during the consent process, we also reviewed individual results from the combined interest, availability, and accessibility needs survey, asked about any additional assistance we could provide, and then, based on participant preference, either recorded verbal consent or received signed consent via scanned pdf. The survey review was an essential step in ensuring accessibility, as it offered our participants the opportunity to share access needs that were not captured on our survey. One such practice we adopted because of these conversations with participants was to send reminder emails 30 minutes ahead of the scheduled start time with a link to join the virtual focus group; this was requested by a blind/low-vision participant for whom searching their email inbox to find the link was inconvenient and time-consuming. As is true of so many accessibility practices, this design element was appreciated by all our research participants and became a standard practice in our universal research design.

Focus Group Scheduling

Focus groups were scheduled to last 60 minutes. Recommendations from the community were to separate the consent/eligibly review process and the focus group into two separate events. While this required all participants to log in twice on two separate times or days—posing logistical challenges, such as assistance logging into a virtual meeting, or the added cost of scheduling American Sign Language interpretation for two separate events, for example—our recruits shared that this was preferrable for those who may be easily fatigued or have difficulty focusing during meetings that last more than an hour. We also found that separating the consent process from the focus group allowed our recruits additional time to weigh their choice to participate, which was especially important for those with cognitive or intellectual disabilities. Recruits had the opportunity to ask questions about the project and reflect before making a truly informed and intentional commitment to participate, and some opted for a more private interview over focus group participation given the small, close-knit nature of their disability community.

Focus Group Participation

During the focus group, we included many of the elements endorsed on the screening survey as part of our universal research design process, regardless of number of individuals who requested them. For example, for all meetings we enabled closed captioning, permitted participants to respond to questions and discussion using chat features, posted focus group questions into chat, and periodically stopped conversation to give participants a chance to consider their responses. Interestingly, one commonly endorsed item from the interest, availability, and accessibility needs survey was the request to have access to the focus group questions in advance, and we incorporated this as part of our universal research design. We noted this design element was particularly useful for our focus groups with individuals with cognitive or intellectual disabilities, but also appreciated by all participants. Early access to questions provided an opportunity for participants to think through the topic prior to the session. Many participants from this population came to the sessions prepared with their answers already written down. While not the standard procedure for focus group research, similar methods, which ask participants to consider a discussion topic alone in advance, such as the Nominal Group Technique (NGT), have been successfully used with similar populations (Owen et al., 2016). NGT provides questions to participants, asks them to consider the topic on their own for several minutes, and then write down their responses with help from an aide, and then the facilitators ask the participants (or aides) to share one idea. Ideas are eventually grouped into themes and approved by all participants. Again, we note that design elements such as allowing participants to write their responses in advance or share additional thoughts after the session with the aid of an assistant could have reduced the validity of the study. Researchers should work to ensure the assistant does not unduly influence the content of written responses through similar methods described previously, namely discussions with the assistant about their role. However, we argue that the benefit of inclusion is well worth the potential risk to validity.

Disability Humility in Universal Research Design and Practice

As we engaged with our research population, our design evolved, per Rios and colleagues’ accessible research design process, through accommodation and modification to better meet the needs of our participants (Rios et al., 2016). Our efforts were guided by the work of disability scholars and activists as well as our local interlocutors, from whom we learned the irreplaceable value of disability humility in the design and implementation of accessible research protocols. As defined by Reynolds, “[d]isability humility refers to learning about experiences, cultures, histories, and politics of disability, recognizing that one's knowledge and understanding of disability will always be partial, and acting and judging in light of that fact” (Reynolds, 2018, p. 1184). Thus, when it comes to conducting research with or about PWD, it is crucial that researchers—even those who may identify as disabled—both recognize the limits of their own knowledge and experience and elevate the voices and perspectives of those within the disability communities included in the study population to help identify access needs, accommodations, and modifications to the research protocol. When working with a pan-disability research population, especially, leading with disability humility foregrounds the necessity for ongoing accommodations and modifications to promote inclusion across the full spectrum of disability.

If the goal of accessible research design is inclusion for as many participants as possible through intentional design and strategic utilization of accommodations and modifications as needed, then disability humility can be understood as the mindset and practices through which that goal can be achieved. In our research design, disability humility in practice took the form of community engagement, flexibility, and collective access—practices we detail below as essential for fostering accessibility and inclusion. Alongside any standardized set of accessible research design parameters, we urge researchers to adopt these transferrable practices of disability humility.

Community Engagement

Ensuring accessibility for mixed ability and pan-disability research participants necessitates a dialogic exchange, meaning that researchers cannot adopt a framework or develop a protocol without input from their research participants. As researchers striving for access and inclusivity, we must create protocols that allow space for participants to tell us what they need, and to adapt to those needs. This might mean permitting participants to share insights in an interview rather a focus group or limiting the size of these groups to prevent overstimulation, or the ability to pivot between online only and in-person focus groups for local participants, as was necessary to accommodate the needs of our blind or low vision participants. But we as researchers cannot know for certain unless we ask.

To be guided by disability humility in our efforts toward ensuring accessible research design, researchers must recognize and honor the authority of PWD as experts of their own bodyminds, as well as of what is needed to make spaces—whether physical, virtual, or social—accessible to them. Indeed, disability scholars working toward improving healthcare access for PWD stress the importance of collaborative care that starts with the recognition that PWD know their bodymind’s abilities and limits, as well as what accommodations or modifications are most impactful, better than anyone else (Reynolds, 2018; Reynolds & Wieseler, 2019). Adapting this collaborative approach for research design entails first recognizing the marginalization experienced by PWD, whose perspectives too often go unheeded, and the ableism—either interpersonal or structural/institutional biases against PWD—within the research enterprise (DeCormier Plosky et al., 2022) then actively countering marginalization and ableism by empowering PWD to inform accessibility efforts.

Because it is challenging to anticipate the needs of a pan-disability study population, opportunities to solicit guidance from recruits must be built into a research protocol. One practice we recommend to facilitate community engagement is a conversational eligibility interview wherein researchers explain a study and present participants with the opportunity to articulate what they need. While efforts must be made to ensure that initial recruitment materials and the processes to schedule and attend an eligibility interview are widely accessible—e.g., ensuring all written materials are compatible with a screen reader; using clear and simple language; presenting written materials in an alternative format, such as a captioned video—these conversations center the needs of research participants. Likewise, we encourage researchers committed to inclusive, accessible design to partner with disability community organizations to determine the needs of the community (e.g., what sorts or research projects would benefit the community), develop an inclusive protocol by preempting access needs, and recruit participants. For example, working closely with the strategic partnerships manager at a community center for the blind and low-vision enriched our project by enabling trusted, word-of-mouth recruitment, convenient scheduling, and the opportunity to conduct focus groups in a familiar, accessible space. In this way, researchers humbly enter into partnership with disabled participants and thereby enact the second principle of Disability Justice, leadership of the most impacted, which, as defined by the activist collaborative Sins Invalid, holds that “we must be led by those who know the most” about disability, ableism, and access (Berne et al., 2018, p. 227).

In short, rather than pre-determining or presuming we can think of everything to make research participation fully accessible; researchers must include community partners in their project design. Our experience suggests that this is perhaps the most important practice researchers need to adopt to promote accessible research design.

Flexibility

To be responsive to the accessibility needs of research participants that emerge through the practice of community engagement demands flexible research protocols designed to adapt to both expected and unforeseen accommodation and modification requests from participants. As we gathered feedback from our participants about the research process, we learned firsthand that flexibility must be a critical component in our methods and protocols, enabling our ability to provide accommodations and modifications. For example, for most of our blind or low-vision participants, our community partner identified interested participants and arranged a date and time to hold the focus group and then invited interested participants to attend. Therefore, while we had intended for all participants to complete the interest and availability survey, in this case it was unnecessary, as the community partner facilitated these activities for us. In addition, even though we had anticipated all focus groups would be virtual, these focus groups were held in-person at the local sight center because it was most accessible for these participants to attend in a familiar, in-person location than to navigate the online video conferencing software at home.

Therefore, although we had presumed that virtual focus groups would be most inclusive, this format simply did not meet the needs of these participants, requiring modifications to the research protocol as dictated by the research participants. Likewise, to respect some participants’ concerns about confidentiality, we pivoted from virtual focus groups to virtual interviews as requested due to the small, tight-knit community of potential participants representing a specific disability. We also offered participants the option to follow-up and share thoughts after the focus group or interview via email because of processing delays. We recognized that modifications such as interview may have affected study validity since we were losing the element of group dynamics associated with focus groups, however we determined that the insights gained from greater inclusion—our top priority in research design—outweighed the losses to validity that may have occurred. We recognize, as well, that some of these accommodations may not be possible for all researchers, such as the pivot to in-person focus groups, yet we encourage researchers to critically consider the relative strengths and limitations of virtual modalities, as well as the unique access needs of their study population. Is a virtual format most accessible for participants, or more convenient for researchers? Is inclusion a guiding priority? Have PWD been consulted in the study design? These are critical considerations that illustrate the need for flexibility.

To streamline the processes of accommodation and modification integral to accessible research design, we recommend that researchers develop protocols and secure IRB approval for multiple modes of participation—virtual/remote and in-person, focus groups and interviews, etc.—so that they can quickly meet the access needs of participants without having to wait on approval from an IRB for an amended project design. Accessible research design anticipates the need for flexibility, acknowledging that accommodating the access needs of a pan-disability population may require the option for multiple modes of participation tailored to specific sub-populations as determined in consultation individual recruits and community organizations.

Collective Access

Community engagement and flexibility work hand-in-hand to foster “collective access,” another core principle of Disability Justice (Berne et al., 2018). Collective access is guided by an appreciation for the ways in which we all—disabled and nondisabled alike—“have various capacities which function differently in various environments,” and, thus, all have access needs (Berne et al., 2018, p. 228). Collective access destigmatizes the need for accommodation while also recognizing that some access needs may be at odds with each other—for example, low-lighting that accommodates one participant’s sensory disability may make it impossible for a low-vision individual to participate—within a pan-disability community, a reality that underscores the admirable aims but ultimate impossibility of truly universal design. Consequently, accessible research design is less about “cracking the code” for finding the single, all-encompassing framework of universal design, however desirable that might be, but instead a humble commitment to the principles of disability justice. Indeed, the aims of collective access are ultimately optimistic, celebrating diversity and the power of community to creatively ensure inclusivity: “We can share responsibility for our access needs, we can ask that our needs be met without compromising our integrity, we can balance autonomy while being in community, we can be unafraid of our vulnerabilities knowing our strengths are respected” (Berne et al., 2018, pp. 228–29). As researchers, committing to collective access allows us to acknowledge the shared benefits of accessible research design for all participants, not only those who identify as disabled, and promotes the widespread development of inclusive practices whenever planning any virtual focus group or interview project, not only when PWD are the target study population. A commitment to collective access ensures that PWD can be included in any research project, and the resulting “mixed groups” comprised of those with and without disabilities promises more robust data that better represents the general population (Owen et al., 2016).

Conclusion

Acknowledging that universal design is an impossible ideal, perhaps a research design accessible to all does not mean that everyone will be able to participate to their best ability in the same session, but rather that researchers are willing to make as many different accommodations and modifications as needed to ensure everyone has an opportunity to participate when and however is best for them. For this to occur, the research protocol and the researchers alike must be flexible enough to support the necessary adjustments determined in close consultation with the research participants. From the start, ensuring inclusion of PWD requires the careful planning of a maximally accessible research design, which includes ongoing accommodation and modification to ensure inclusion (Rios et al., 2016). But to implement the necessary accommodations and modifications requires humility, community engagement, and flexibility.

Moreover, in the spirit of collective access, researchers must dedicate the time and financial resources necessary to ensure inclusion, approaching, for example, the cost of an American Sign Language interpreter or survey software compatible with a screen reader as non-negotiable necessities, not “additional” expenditures. PWD have been excluded from critical health research and clinical trials because accessibility has been perceived as optional and, accordingly, too difficult to negotiate (Bard, 2021). The exclusion of PWD is thereby justified as efficiency or necessary to preserve data validity, yet the principles of Disability Justice demand that researchers start from a place of disability humility. When we made inclusion our top priority, we discovered easily implementable protocols that enriched our focus group research and eased participation for all, such as individual consent and eligibility interviews that normalized accessibility needs, pre-circulated questions that elicited thoughtful responses, reminder emails that helped everyone join on time, and a captioned video to streamline the consent process. Further, committing to making the necessary accommodations and modifications to our protocol prompted self-reflection on our own implicit biases and the institutional ableism that peripherally structure the research process, such as IRB requirements that presume the incompetence of all disabled participants or fail to engage those with disabilities in the design of consent procedures. While there is still a lot of work to do, when guided by disability humility and the principles of Disability Justice, which fuel a commitment to inclusion that goes beyond the implementation of an accessibility checklist, we contend that researchers are better able to maximize the potential of accessible research design.

Footnotes

Acknowledgments

We would like to thank the many community partners and participants who made this work possible, especially those affiliated with the Cleveland Sight Center, The Improvaneer Method, Cleveland SignStage Theatre, and the Down Syndrome Association of Northeast Ohio.

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: Funding for this project was provided by Northeast Ohio Medical University (NEOMED) Strategic Initiative Funding and the NEOMED Office of Sponsored Research.

ORCID iD

Rebecca Fischbein

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Beyond Universal Research Design: Lessons for Developing Accessible Virtual Focus Group Research

Abstract

Keywords

Introduction

Barriers to Inclusion in Health Research

Universal Research Design, Accommodation, and Modification

Prioritizing Inclusion: an Example of Accessible Research Design

Recruitment

Screening

Consent

Focus Group Scheduling

Focus Group Participation

Disability Humility in Universal Research Design and Practice

Community Engagement

Flexibility

Collective Access

Conclusion

Footnotes

Acknowledgments

Declaration of Conflicting Interests

Funding

ORCID iD

References