Inclusive online research with people labeled with intellectual and developmental disabilities during the COVID-19 pandemic: technological adaptations

Sara Michelle Miller (Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA)
Lieke van Heumen (Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA)

Journal of Enabling Technologies

ISSN: 2398-6263

Article publication date: 25 May 2021

Issue publication date: 28 June 2021

570

Abstract

Purpose

This paper aims to report process findings of two online inclusive research projects with people with intellectual and developmental disabilities (IDD). It includes a discussion of the potential benefits and barriers of online inclusive research and its impact on the future of inclusive research.

Design/methodology/approach

Two researchers describe the transition of their inclusive research projects from in-person to online formats and highlight how they operationalized the principles of inclusive research throughout these transitions.

Findings

Potential benefits of inclusive research include enabling participation of research participants with IDD when in-person methods are not safe or feasible, increasing participant control of the research environment, stimulating participants’ online skill development and reducing geographic and support barriers to participation in research. A barrier to participation in online inclusive research includes people with IDD’s lack of access to online spaces and Web-enabled devices. Additionally, people with IDD have support and communication needs that are not always accommodated by online skills training and access to the internet. To conclude, inclusive researchers need to develop skills and reflexivity specific to online research environments.

Originality/value

Inclusive online research with people with IDD brings unique ethical and methodological challenges that have not been well explored in the literature. Engaging people with IDD in research using online tools expands the terrain of inclusive research, opening possibilities for even greater inclusion and participation.

Inclusive abstract

Two researchers could not do their research studies because of the pandemic. They did them online. The studies were with people with disabilities.

Being online can make it easier for people with disabilities to be a part of a study. They can choose how to be a part of the study. They can also learn more skills.

Being online can be hard for people with disabilities. Some do not have a computer or smartphone. Some do not know how to use them. Researchers may not know how to help people with disabilities to be a part of an online study.

Keywords

Citation

Miller, S.M. and van Heumen, L. (2021), "Inclusive online research with people labeled with intellectual and developmental disabilities during the COVID-19 pandemic: technological adaptations", Journal of Enabling Technologies, Vol. 15 No. 2, pp. 122-135. https://doi.org/10.1108/JET-12-2020-0051

Publisher

:

Emerald Publishing Limited

Copyright © 2021, Emerald Publishing Limited


Introduction

In March 2020, as the COVID-19 pandemic was beginning to have widespread effects on everyday life in the USA, the authors of this paper were in the implementation stages of two separate inclusive research projects conducted with people labeled with intellectual and developmental disabilities [1] (IDD). The authors were challenged to consider how their research projects could continue or be re-imagined in online formats during an extended period of restricted in-person contact. In this paper, the authors discuss the transition of their research projects with people with IDD to an online environment. They highlight how they operationalized the principles of inclusive research throughout this transition, taking into account the technology and online access barriers many people with IDD experience. Additionally, they reflect on the impact of online research on the future of inclusive research methods.

The impact of the COVID-19 pandemic on people with IDD

Sixty-one million adults, 24% of the USA population, have a disability (Centers for Disease Control and Prevention, 2020). This includes approximately 7.4 million Americans with IDD (Larson et al., 2018). Throughout history, people with IDD have endured widespread abuse, neglect, segregation, and institutionalization (Braddock and Parish, 2001). Despite advances in public policy and destigmatization of disability, many people with IDD still experience marginalization, have low levels of participation in society and small social networks (Verdonschot et al., 2009). They also experience barriers to good health, are less likely to be physically active and are less likely to receive preventative care (Havercamp, 2015).

The consequences of long-standing inequities are resulting in dire outcomes for people with IDD during the COVID-19 pandemic. They are at increased risk of infection with COVID-19 and are negatively impacted by complicated health outcomes of infection. Many have lost support from an already limited pool of trained caregivers and community service providers and are increasingly socially isolated (Constantino et al., 2020).

Technology and online access for people with IDD

Access to the internet and electronic devices influences educational, economic and community participation opportunities (Chadwick et al., 2013). There are indications that young people with IDD use social media more than the IDD community overall (Borgström et al., 2019), but compared to other groups, people with IDD are least likely to have access to the internet and benefit from the opportunities it provides (Chadwick et al., 2013). This is the result of financial and economic disadvantages, lack of attention to their needs in the development of technology, and the educational and training barriers they experience (Chadwick et al., 2013). Additionally, guardians, often family members who are court appointed to make legal decisions for adults with IDD, may limit online access because of fears about safety (Chadwick et al., 2013). As people increasingly live their lives online due to the COVID-19 pandemic, those with disabilities are yet again left behind due to persisting barriers to online access (www.shadac.org/news/internet-access-measures-impact-digital-divide-and-covid-19, 2020).

Inclusive research with people with IDD

Historically, research on IDD was about people with IDD (Hillier et al., 2007). It often perpetuated their marginalization by justifying segregation, promoting eugenic ideas and denying their human rights (Stone and Priestley, 1996). In the last several decades, the paradigm has shifted to prioritize inclusion of the perspectives of people with IDD in research. A growing body of research is conducted with people with IDD (Hillier et al., 2007). As a result, researchers have designed accessible and creative research methods that allow for the strengths of people with IDD to emerge (Booth and Booth, 1996). This includes research procedures in which people with IDD are included as more than just research subjects or respondents, also called “inclusive research” (Walmsley, 2001).

Inclusive research is a philosophical approach that can be applied to any method (Williamson et al., 2020). It is an umbrella term that is used across fields and disciplines and embraces a range of research approaches including participatory, emancipatory and community/peer-led research (Nind, 2014). When applied to IDD research, it captures collaborations in which community members with IDD work with researchers (Schwartz et al., 2020), and in some cases are called co-researchers (Bigby et al., 2014). Inclusive research aims to contribute to social change and improve the quality of life and belonging of people with IDD. Inclusive research pursues issues that matter to people with IDD and draws on their experience to inform the research process and outcomes. Inclusive researchers stand as allies with people with IDD in exploring and investigating their issues. In inclusive research, people with IDD are included in developing the research questions and procedures. Study materials and results are communicated in plain language that is short and clear and accessible to people with IDD.

To conclude, inclusive research recognizes, fosters and communicates the contributions people with IDD can make (Walmsley and Johnson, 2003; Walmsley et al., 2018; Schwartz et al., 2020). Participation in research for and by people with IDD is an avenue for this population to let their voices be heard, and to contribute to knowledge production that ultimately can benefit their lives and communities (Walmsley and Johnson, 2003; Walmsley et al., 2018). Such self-representation is key to the development of self-advocacy, the ability to speak up for oneself (selfadvocacy.net, 2020).

While online research methods were emerging as an important tool in qualitative research even before the COVID-19 pandemic began (Salmons, 2012), inclusive online research with people with IDD brings unique ethical and methodological challenges that have not been well explored in the literature. Inclusive researchers in online environments are responsible for attending to the accommodations that people with IDD need, such as using plain language and visual aids to respond appropriately to the difficulty many people with IDD experience with written and verbal communication (Atkinson, et al., 1997). Additionally, they need to address and respond to the social barriers that limit the participation of people with IDD in research, such as resolving lack of access to the internet and accessible technology. Researchers must consider how the online research environment might impact data collection with people with IDD, what barriers exist to this process and what opportunities it brings. Given the lack of data about best practices, operationalizing the principles of inclusive research is key to fostering its development (Schwartz et al., 2020) and process findings are as important as the research outcomes themselves (Walmsley et al., 2018). The two case studies below describe the process of recruitment, obtaining consent and data collection using online tools for two inclusive research projects.

Case study 1 – art-based participatory program evaluation with artists with IDD

Background

In the 1970s and 1980s community-based art studios for artists with IDD, sometimes called ‘creative art centers’, began to emerge in the USA By 2013 there were over 120 studios across the country (Finley, 2013). Art studios for people with IDD typically offer art materials, a space to create art and staff that provide personal assistance, skills training, and professional development (Sellen, 2008). In the USA, the art studios often have a social service mission aimed at having a positive impact on the lives of the artists by fostering their social networks and community inclusion (Vick and Sexton-Radek, 2008).

Arts of Life is a creative arts community with two different studio locations in the Chicago area serving a total of 60 artists. Arts of Life provides artists with IDD a collective space, training and support to practice as artists (artsoflife.org, 2020). Arts of Life was deeply impacted by the COVID 19 pandemic. Both studios were closed to in-person programming in March 2020. In August, the studio was able to reopen with restrictions on the number of artists and staff allowed in the studio at one time. No volunteers, students or researchers were permitted in the studio. Many of the artists were unable to return to the studio even months after the studio's ‘soft’ reopening due, in some cases, to restrictions in community access enforced by group homes and other residential facilities where some artists live.

In response to the prospect of long-term closure and isolation of the artists, the studio launched full-day online programming via Zoom in April 2020. Zoom is a popular Voice-over Internet Protocol (VoIP) technology which allows for synchronous, realtime audio and visual exchange across devices (Zoom.us, 2020). Online studio programming on Zoom included daily instruction on how to utilize the online platform, guided meditation, art making prompts, opportunities for artists to share artwork with each other and virtual studio and museum tours.

Research aim and procedures

Aligned with the inclusive research principle of focusing on issues important to people with IDD, the aim of the study was to include artists with IDD in an evaluation of their studio programming. The study used an approach to evaluation called appreciative inquiry. Appreciative inquiry is an inclusive approach to organizational and community evaluation that draws from the unique insights of community members and invites them to identify the strengths of their community and what they would like to see in their community in the future (Cooperrider et al., 2008). Data is collected through individual interviews and group interviews (Cooperrider et al., 2008). The original goal of the study was to recruit 31 artists at one of the Arts of Life studios. Data collection was planned to include in-person interviews and focus groups with a subgroup of six of these 31 participants, with the remaining 25 participants only participating in the researcher’s in-person observation at the studio. With in-person research no longer possible due to the COVID-19 pandemic, the research procedures were amended and approved by the University’s Institutional Review Board (IRB) to be conducted online through Zoom.

Recruitment and consent procedures

Staff at the Arts of Life studio agreed to assist with recruitment of participants. Staff distributed the researcher's accessible image-based recruitment flyers and plain language recruitment scripts to inform participants about the study. Inclusive researchers use plain language and image-based research materials to increase the comprehension and participation of research participants with IDD (Kidney and McDonald, 2014). Staff then provided the names and contact information of interested participants and their guardians to the researcher. During recruitment, participation in online programming dropped and was reduced to two hours per day as some artists moved back into the studio for in-person programming. The changes in programming and overall emotional toll of the COVID-19 pandemic caused strain on staff, artists and the researcher. Even though the goal of the study was to recruit 31 participants, the researcher scaled back recruitment efforts to secure only 6 participants to not overextend the staff and artists and studio community overall.

Six participants were engaged in participant observation, four 30-min individual interviews and three 1-h focus groups; 30-min interviews were designed to accommodate participants with a shorter attention span or who might experience interview fatigue especially on the Zoom platform. Most participants were able to maintain focus for 30min, but some interviews ended early because the participant appeared tired or distracted. The researcher asked participants throughout the interview if they wanted to stop or continue the interview, which created many opportunities for the participant to end the interview early. During the one-hour focus group, one participant left the room and returned periodically, indicating that it may have been difficult to maintain focus for a full-hour. The online format increased inclusivity in this case because it allowed for the participant to leave and return freely based on their needs.

All but one of the artists who were recruited for participation in the study had a guardian. Therefore, guardians had to provide consent for these artists to participate in the study, and the participants had to provide assent. Initially planned in-person, the consent/assent process for this project was moved to be completed by phone, Zoom and mail. The researcher first contacted the guardians by phone to briefly describe the study. Afterwards, three-way meetings were scheduled with the guardians and potential study participants to obtain consent/assent. Guardians and participants selected the platform for this meeting, by either phone or Zoom. Most decided to schedule this meeting via Zoom but some felt more comfortable with a phone call.

Before the meeting, the researcher sent the guardians and potential research participants a copy of the consent form and a self-addressed stamped envelope by mail. The consent form was accompanied by an accessible handout explaining the timeline of the study and its potential risks and benefits through images and plain language. This handout was designed to support research participants' understanding of the consent process. The participants were invited to use this document during the consent/assent meeting.

Conducting consent/assent meetings via Zoom helped prepare research participants to use the platform. The consent/assent process is an important opportunity for researchers to build rapport with participants with IDD (Cameron and Murphy, 2006) and can also be important for establishing and building rapport with staff members and guardians who often have a gatekeeping role in the participation of people with IDD in research (Carey and Griffiths, 2017). Building in accessible tools, scheduling multiple meetings, giving participants choice and control about where and when they provide consent and making consent an ongoing process throughout the study served to reinforce inclusive research principles of accessibility, participation, and empowerment.

Data collection

The use of zoom.

Studies suggest that research participants’ familiarity with the VoIP platform being used is a key factor in building trust and rapport in online research (Archibald et al., 2019). Zoom was chosen for this study because participants were familiar with Zoom through their engagement in online programming designed by studio staff. This online programming included initial training conducted by studio staff and daily reminders on how to log-in and troubleshoot problems with the platform. This research project continued Zoom skills training by reminding participants how to troubleshoot technological problems before every interview and focus group. For example, participants were reminded to wait a few moments if their screen froze due to connectivity problems and were informed that the session could be rescheduled if connectivity problems persisted and were disruptive. Participants were tolerant of technological and connectivity problems. Freezing and pauses in the video stream were a persistent problem during some, and an occasional problem during most, individual interviews. All participants were given the option to have interviews conducted by phone, but only one participant selected this option. Connectivity issues also forced the researcher to ask questions more slowly and clearly and wait longer periods between responses, which may have been helpful for some participants who may have benefited from a slower pace that is more accessible to them.

Security and privacy.

Security and privacy are important considerations in inclusive research. A feature of some VoIP platforms, including Zoom, is password protection. Researchers can send a personal invitation to participants with a password and link to join the meeting. This creates more privacy because only invited participants can join the meeting, but it also created barriers for some participants. Many participants in this study did not have a personal email address or their own personal web-enabled devices such as a computer, tablet or smartphone. Those that did have access to a device and a personal email account were unsure how to use the device or sign into their email independently. Studio staff, residential staff and guardians set up the computer, received the Zoom link and opened the Zoom session for the majority of participants. This created an additional task for staff members and guardians, already strained by the pandemic. It also emphasized the gatekeeping role that staff and guardians can have in research with people with IDD. Without access to Web-enabled devices and training to use those devices people with IDD must rely on others to participate in some online research.

Study participants were reminded how to protect their own privacy and the privacy of those around them while using the online platform. One of these reminders consisted of participants being instructed to find a private space with a door or to sit against a wall so that background activity was not captured by the camera. These are skills that could potentially support participants’ safe engagement in online environments beyond the study.

Visual tools.

Some people with IDD have communication challenges that limit their participation in primarily talk-based methods (Hefron et al., 2018).Visual illustrations in handouts, interview guides and consent materials are used in inclusive research to improve the experience and understanding of people with IDD (Kidney and McDonald, 2014). Screen sharing, available through many VoIP platforms, makes this possible in the online research environment. The researcher used the screen-sharing tool to show an image based study timeline, to prompt discussion about specific works of art created by the artists and to provide visual prompts to questions. For example, when asking a question with multiple answers, possible answers were visually displayed on the screen and numbered or color-coded to differentiate them. Visual prompts at times were altered during the session to meet the needs of participants, for example, words were enlarged or language changed to better engage participants. Additionally, the screen-sharing tool was used during the final focus group for member checking, a strategy used to increase the authorship of participants in inclusive research. The researcher presented emerging themes from the study and participants suggested edits which were made directly into the document which was viewable by the entire group.

Video recording.

Many VoIP tools allow for video recording as well. In this study, participants were prompted to consent to being video recorded at the beginning of the interview and focus group both by the researcher and also by the VoIP platform. While video recording equipment might be awkward or distracting during an in-person interview, VoIP video recording was not noticeable to the researcher and perhaps equally unnoticeable to research participants. It has been suggested prior that participants in online interviews do not see, feel, or experience the difference between being recorded and the conversation not being recorded (Brown, 2018). Online researchers working with people with IDD should consider ongoing consent measures as an ethical component of inclusive research in which researchers remind participants they are being recorded, conceptualizing informed consent as a process that is confirmed throughout interviews and focus groups.

Summary of strategies that increased inclusion in this online study:

  • Consider limiting recruitment size to ensure that sufficient online support and accommodation can be provided to study participants.

  • When necessary, work with guardians and caregivers to help participants log-in to online platforms.

  • Support participants to manage their needs in online research, for example by taking breaks or turning off their video stream.

  • Take time to address technological and online privacy issues.

  • Use the screen-sharing tool to share visual aids like question prompts and study timelines. Visual aids can be altered in real-time to accommodate individual needs.

Case study 2 – inclusive translation and dissemination of Special Olympics health data

Background

The mission of Special Olympics International (SOI) is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities. Over 170 local Special Olympics Programs implement a variety of sport, health, and education activities to facilitate inclusion of people with IDD in communities throughout the world (www.specialolympics.org/about/our-mission, 2020). The Special Olympics Research and Evaluation (R&E) department measures the impact of SOI’s strategic plan and local Special Olympics Program-led activities by collecting and analyzing health data and evaluating the implementation of new health programming (www.specialolympics.org/our-work/research, 2020).

The analysis of Special Olympics’ health data shows that people with IDD have poor health. Almost half of athletes have hypertension (Schroeder et al., 2020) and they have as many chronic health conditions at age 20 as nondisabled people have at age 50 (https://resources.specialolympics.org/research/health-research-and-evaluation, 2020). Addressing health inequities experienced by people with IDD requires their input. Research that engages with this community can impact the formulation of policy solutions that can benefit them (Cacari-Stone et al., 2014). Additionally, people with IDD need information about health that is accessible to them. There have been favorable reports on the reception and uptake of adapted health information by people with IDD and those who support them (Chin and Homeyard, 2016).

Research aim and procedures

The goal of the collaboration between Special Olympics R&E and the University researcher was to increase the accessibility of SOI health data for a variety of audiences, including Special Olympics athletes themselves. The researcher reviewed the data reports published by SOI and developed a series of accessible resources in plain language and videos that explained the outcomes of SOI’s health evaluation. Some of the topics included an introduction to Special Olympics R&E, blood pressure, oral health and aging. The researcher created scripts which provided the foundation for brochures and videos.

The aim of the study was to acquire feedback from Special Olympics athletes on the accessible resources so that they could be more inclusive and effective. Before the outbreak of the COVID-19 pandemic, the researcher had planned to host two sets of two focus groups with five Special Olympics athletes each.

Collaboration with co-researchers.

The researcher recruited a Special Olympics athlete to serve as a paid co-researcher for this project. The co-researcher was able to independently complete the University’s online human subjects research training in about eight hours. He met with the researcher twice to provide feedback on drafts of the scripts and accessible resources. The co-researcher indicated which word usage was preferred by athletes. Additionally, he helped rewrite sections of scripts to make them more accessible by dictating sentences to the researcher. When the co-researcher received a full-time job offer, he had to withdraw from the project. The collaboration with a co-researcher with IDD was key to this project, and therefore the researcher recruited another Special Olympics athlete who was interested to serve as a co-researcher for the project. Both co-researchers had access to a web-enabled device and had internet access at their home and communicated with the researcher by email and through VoIP meetings both before and during the COVID-19 pandemic.

Several structural barriers complicated the inclusion of co-researchers in the project. The co-researchers had to be hired as consultants for Special Olympics as the University’s HR department did not allow for individuals without prior research training to be hired. To ensure co-researchers with disabilities are paid appropriately, this barrier at Universities like the one this study was conducted at needs to be removed. Additionally, University mandated human subjects research training is often inaccessible to people with IDD. The second co-researcher (henceforth referred to as ‘co-researcher’) had to meet with the researcher five times (both in person and through Zoom) to complete the 17 modules of the training so she could participate and assist with data collection and analysis for the study. These meetings became part of the research training provided by the researcher to the co-researcher, and part of the research process (Strnadová et al., 2014).

During in-person and Zoom meetings and sometimes through email, the co-researcher reviewed the scripts and health topics, and provided feedback to the researcher on information that would be most useful and language that would be easily understood by people with IDD. The co-researcher also provided written feedback. For example, she recommended to tell athletes what they can do to keep their blood pressure in a normal range. Additionally, the co-researcher provided feedback on the brochures and pencasted videos that were created after the completion of the scripts and gave insights into different learning and communication styles athletes with IDD may prefer. The researcher used the co-researcher’s recommendations in producing final drafts of the scripts, brochures and videos to share with a sample of Special Olympics athletes for feedback through focus groups. The researcher also met with the co-researcher to discuss the focus group protocol.

Changes to the research protocol after the outbreak of the COVID-19 pandemic.

Immediately after recruitment for the focus groups with athletes from the Chicago area was completed, stay at home orders due to the COVID-19 pandemic were issued and in-person research was suspended. The researcher and co-researcher met through Zoom to discuss an alternative approach to completing the data collection as the focus groups could no longer be completed as planned. The first option discussed was to wait and conduct the focus groups when in-person research could resume. However, it was unclear how long this would take. Therefore, it was decided to explore options to complete the data collection through an online format. Both the researcher and co-researcher had some concerns about how to conduct a focus group with five individuals with IDD online while ensuring the participants would receive sufficient individual support to be able to successfully participate. The co-researcher also anticipated that participants who did not know each other might feel shy or uncomfortable in an online setting. Additionally, both the researcher and co-researcher did not have experience facilitating focus groups with people with IDD online. Therefore, they decided together to change the focus groups to online individual interviews with five athletes on a VoIP platform of their choosing to allow sufficient individual support being able to be provided to participants. Each athlete would receive a stipend for participating in an interview. Accessible handouts were emailed to athletes to use during the interviews. They contained pictograms and short sentences to describe the interview questions and topics.

Recruitment and consent procedures

The co-researcher indicated that many Special Olympics athletes use social media. Therefore, information about the interviews was shared by Special Olympics International on a social media platform viewed by athletes. Interview participants were recruited nationally spanning several time zones. Five athletes contacted the researcher from their personal email addresses to express their interest in the study within a few hours after the social media post. As soon as recruitment was completed the social media post was closed. After recruitment, the researcher sent the participants the consent forms. Four of the five participants printed out the form from an email, signed it and sent it back by email or mail to the researcher. One participant could not print the form and received it by mail with a self-addressed envelope for return. Two participants had guardians and they independently obtained their guardian’s signature for consent.

Data collection

The researcher sent the interview handouts, brochures and weblinks to the participants by email as well as the accessible resources for review. All participants were able to download the files and access and view the videos. Participants were given the option to complete the interview by phone, Zoom or Webex and all requested for the interview to be completed by Zoom as they had familiarity with the platform. Participants were asked to indicate when they were available for an interview. The researcher invited the participants to a scheduled Zoom meeting including a link in an email for them to access the platform. All participants had a web-enabled device and internet access.

All participants lived independently or with a family member, versus in a group home or other residential facility. All but one of the participants participated in the interview ndividually without evidence of others present nearby. One participant had her mother participate in the interview with her. It is important in inclusive research to support individuals with IDD to participate in research on their terms, which includes the presence of an advocate or someone who supports them like a staff member or relative if they so choose. This approach recognizes the value of interdependence and support in providing accommodation for persons with intellectual disabilities in research participation (Caldwell, 2013).

The interviews started with an introduction to the study by the researcher who also asked participants for permission to record the meeting which was granted by all participants. Introductions were then exchanged. The co-researcher included in her introduction her involvement in Special Olympics. The presence of the co-researcher helped build rapport with the participant, as they shared the same community. The interview protocol was intentionally kept brief so that the interview length would be manageable for participants. The interviews lasted between 20 and 40 min. Participants remained focused for the duration of the interviews and did not express fatigue.

The co-researcher expressed interest in learning how to conduct research interviews independently. The interview with the first participant was conducted by the researcher and the co-researcher shadowed, during the second and third interview the co-researcher asked part of the questions. During the final interviews, the co-researcher led the conversations and the researcher provided support when necessary. The researcher transcribed the interviews and took the lead in editing the accessible resources to incorporate the athletes’ feedback and reflect their preferences. This division of work reflects one of the main approaches in inclusive research when people with and without IDD work together based on their different skills and interest (Bigby et al., 2014).

Summary of strategies that increased inclusion in this online study:

  • Choose online data collection strategies that are accessible and allow people with IDD to fully participate.

  • When possible, choose an online platform that most participants are familiar with.

  • Take into consideration the researcher and co-researcher’s levels of technological skill.

  • Do not neglect the need of participants with IDD to have a trusted individual of their choosing to support them in online research.

  • Send visual aids with information about the study to research participants before data collection commences so they can be referenced while conducting the interview remotely.

  • Keep interview protocols in online research brief so that they are manageable for participants with IDD.

Conclusion

The inclusive research projects presented in this paper reflect both the capacity of people with IDD to adapt to creative and unconventional ways of communicating and the flexibility of qualitative research methods. During a difficult time, for both research participants and researchers dealing with stressors caused by the COVID-19 pandemic, both studies were able to be redesigned. Recruitment, consent and interviews were transitioned by the research teams from in-person to online environments using online tools including VoIP (Zoom) and email.

Participants in the first case study had less familiarity with Zoom, most had no personal email address or personal web-enabled device and therefore depended more heavily on staff members and guardians to connect them to the platform for the study. But, once connected, participants used the platform to communicate their perspectives to the researcher over the course of multiple interviews. They also used the online platform to connect with each other during focus groups during an extended period of separation due to the pandemic. Several aspects of online research increased the studies’ alignment with inclusive research principles including that participants had more opportunities to take breaks and that the screen sharing tool allowed visual aids to be altered and shared in real-time. Further, participants gained familiarity with troubleshooting technological challenges and protecting their privacy online.

In the second case study, research participants were more experienced with being online, had personal devices, email addresses and access to social media. Nevertheless, the researcher and co-researcher decided to use online individual interviews over focus groups. Online research supported the inclusion of participants with IDD in this project by allowing them to participate in the research on their own terms, which included selecting the online platform and someone to support them during the interview. Additionally, the inclusion of a co-researcher in the project helped build rapport with interview participants and increased a sense of comfort in an unfamiliar online space.

These differences in approaches by the research teams highlight the complexity of inclusive research. Key to successful inclusive research is being responsive to the heterogeneity of people with IDD (Stack and McDonald, 2014). This includes meeting their unique individual support needs, following their various communication styles and supporting their different preferences for participation. This is important both in in-person research as well as in online research.

Benefits of inclusive online research with people with IDD.

Some of the potential benefits of inclusive online research include allowing for participation when in-person methods are not safe or feasible and allowing for more participant choice and control of the research environment. For example, some participants in the studies discussed in this paper engaged in interviews from their home in spaces familiar to them. Some participants walked away from the camera or turned off the camera when they needed a break, exercising control over their experience of being interviewed. Brown (2018) also observed the convenience of completing interviews online with individuals with physical disabilities, allowing for additional flexibility in scheduling and rescheduling and allowing for individuals to be in a comfortable space like their home. It is less invasive for participants to complete an online interview from their home than to actually have the researcher physically present in their home (Brown, 2018).

In some cases, online inclusive research also supports research participants with IDD to gain online skills. For example, procedures designed to protect the privacy of participants, being aware of what the camera captures behind them and that they are being recorded, are important to be aware of online in general. Teaching and practicing the use of online skills in research may support participation in online environments outside of the research context, potentially expanding the social networks of people with IDD (Cumming et al., 2014). Additionally, online methods have the potential to reduce geographic and support barriers to participation in research, a benefit which may extend to other marginalized groups. For example, many people with IDD depend on others for transportation and support in navigating the community. Without the burden of travel, it becomes easier to meet with disabled research participants (Brown, 2018).

Barriers to inclusive online research with people with IDD.

Despite the potential benefits, there are barriers for people with IDD to participate in online research. People with IDD generally have less access to online spaces and online skills training than people without IDD. Supplying web-enabled devices and building online skills training into inclusive online protocols may help some people with IDD gain online skills, but offering online skills training for relevant people in the lives of participants who will be helping them connect to online platforms or use and care for personal devices may also be necessary (Cumming et al., 2014). Such approaches add to the significant time and resources already required to conduct inclusive research (Stack and McDonald, 2014).

People with IDD sometimes have support and communication needs that require accommodations not always resolved by training alone. For example, some people with IDD have difficulty with the fine motor skills required to press the video or mute button on a screen. Inclusive researchers may have experience accommodating these kinds of needs in an in-person research environment but have not yet fully developed strategies for online research. Because access is a key value in inclusive research, inclusive online researchers need to engage with creating accessible online spaces that address these needs. Ultimately, online methods may not be best for or preferred by some people with IDD.

Future directions.

Inclusive researchers need to develop new kinds of reflexivity specific to online research which allows participants to be interviewed from a wide range of settings including their private residences (Brown, 2018). Online inclusive research requires researchers to assess their own level of technological knowledge and comfort because this may impact their ability to build rapport in online research (Gray et al., 2020). Inclusive researchers should recognize that working online has an impact on what data is gathered, for example, less body language is visible when the camera captures only the face and shoulders. Further, how researchers interpret data collected and how others perceive those interpretations are also impacted (Carey and Griffiths, 2017). The online environment gives the data a new context, one that inclusive researchers may have little experience deciphering. For example, research participants may behave differently in their homes than in an office or university setting. This should be considered in the researcher’s analysis of data. Reflection on data analysis and dissemination procedures and how those aspects of research are impacted by working online was beyond the scope of this paper but requires a close review.

To conclude, engaging people with IDD in research using online tools expands the terrain of inclusive research, opening possibilities for even greater inclusion and participation. To meet this goal, inclusive researchers must address access and support barriers that impact people with IDD and must expand their reflexivity to include unique aspects of online data collection, analysis and dissemination. This will require the inclusion of people with IDD in the development and implementation of innovative inclusive online research methods. The potential of inclusive online methods may be best explored post pandemic through flexible hybrid models that give people with IDD more choice and control by offering online and in-person options. Inclusive researchers should then engage in reflexive evaluation of the research process, inviting participants to describe their experiences and preferences to move the field forward.

Note

1.

Self-Advocates Becoming Empowered, the largest self-advocacy organization for people with intellectual and developmental disabilities prefer person-first language and therefore is used in this paper (sabeusa.org, 2014). The authors also acknowledge that IDD is a socially constructed label (Rapley, 2004).

References

Archibald, M.M., Ambagtsheer, R.C., Casey, M.G. and Lawless, M. (2019), “Using zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participants”, International Journal of Qualitative Methods, Vol. 18, p. 108, doi: 10.1177/1609406919874596.

Atkinson, D., Jackson, M. and Walmsley, J. (1997), Forgotten Lives: Exploring the History of Learning Disability, BILD Publications, Kidderminster.

Bigby, C., Frawley, P. and Ramcharan, P. (2014), “Conceptualizing inclusive research with people with intellectual disability”, Journal of Applied Research in Intellectual Disabilities, Vol. 27 No. 1, pp. 3-12.

Booth, T. and Booth, W. (1996), “Sounds of silence: narrative research with inarticulate subjects”, Disability & Society, Vol. 1 No. 1, pp. 55-69, doi: 10.1080/09687599650023326.

Borgström, Å., Daneback, K. and Molin, M. (2019), “Young people with intellectual disabilities and social media: a literature review and thematic analysis”, Scandinavian Journal of Disability Research, Vol. 21 No. 1, pp. 129-140, doi: 10.16993/sjdr.549.

Braddock, D.L. and Parish, S.L. (2001), “An institutional history of disability”, in Albrecht, G., Seelman, K. and Bury, M. (Eds), Handbook of Disability Studies, Sage Publications, Thousand Oaks, CA, pp. 11-68.

Brown, N. (2018), “Video-conference interviews: ethical and methodological concerns in the context of health research”, Research Methods Cases, SAGE Research Methods, London, doi: 10.4135/9781526441812 (accessed 26 February 2021).

Cacari-Stone, L., Wallerstein, N., Garcia, A.P. and Minkler, M. (2014), “The promise of community-based participatory research for health equity: a conceptual model for bridging evidence with policy”, American Journal of Public Health, Vol. 104 No. 9, pp. 1615-1623, doi: 10.2105/AJPH.2014.301961.

Caldwell, K. (2013), “Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities”, Qualitative Research, Vol. 14 No. 4, pp. 488-507, doi: 10.1177/1468794113490718.

Cameron, L. and Murphy, J. (2006), “Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities”, British Journal of Learning Disabilities, Vol. 35 No. 2, pp. 113-120, doi: 10.1111/j.1468-3156.2006.00404.x.

Carey, E. and Griffiths, C. (2017), “Recruitment and consent of adults with intellectual disabilities in a class grounded theory research study: ethical and methodological considerations”, Disability & Society, Vol. 32 No. 2, pp. 193-212.

Centers for Disease Control and Prevention (CDC) (2020), Facts About Developmental Disabilities, cdc.gov, available at: www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

Chadwick, D., Wesson, C. and Fullwood, C. (2013), “Internet access by people with intellectual disabilities: inequalities and opportunities”, Future Internet, Vol. 5 No. 3, pp. 376-397, doi: 10.3390/fi5030376.

Chin, D. and Homeyard, C. (2016), “Easy read and accessible information for people with intellectual disabilities: is it worth it? A meta-narrative literature review”, Health Expectations, Vol. 20 No. 6, pp. 1189-1200, doi: 10.1111/hex.12520.

Constantino, J.N., Sahin, M., Piven, J., Rodgers, R. and Tschida, J. (2020), “The impact of COVID-19 on individuals with intellectual and developmental disabilities: clinical and scientific priorities”, American Journal of Psychiatry, Vol. 177 No. 11, pp. 1091-1093, available at: https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2020.20060780

Cooperrider, D., Whitney, D.L. and Stavros, J.M. (2008), Appreciative Inquiry Handbook: For Leaders of Change, Crown Custom Publishing, Brunswick, OH.

Cumming, T., Strnadova, I. and Singh, S. (2014), “iPads as instructional tools to enhance learning opportunities for students with developmental disabilities: an action research project”, Action Research, Vol. 12 No. 2, pp. 151-176.

Finley, C. (2013), “Access to the visual arts: history and programming for people with disabilities”, available at: https://vkc.vumc.org/assets/files/resources/ArtsManual-P1-adj.pdf

Gray, L.M., Wong-Wylie, G., Rempel, G.R. and Cook, K. (2020), “Expanding qualitative research interviewing strategies: zoom video communications”, The Qualitative Report, Vol. 25 No. 5, pp. 1292-1301, available at: https://nsuworks.nova.edu/tqr/vol25/iss5/9-stopedattopofpage1295

Havercamp, S. (2015), “National health surveillance of adults with disabilities, adults with intellectual disabilities, and adults with no disabilities”, Disability and Health Journal, Vol. 8 No. 2, pp. 165-172, doi: 10.1111/j.0887-378x.2004.00303.x.

Hefron, J., Spassiani, N., Angell, A. and Hammel, J. (2018), “Using photovoice as a participatory method to identify and strategize community participation with people with intellectual and developmental disabilities”, Scandinavian Journal of Occupational Therapy, Vol. 25 No. 5, pp. 382-395.

Hillier, L., Johnson, K. and Traustodittir, R. (2007), “Research with people with intellectual disabilities”, Pitts, M. and Smith, A. (Eds), Researching the Margins: strategies for Ethical and Rigorous Research with Marginalized Communities, Palgrave MacMillan, New York, NY, pp. 84-95.

Kidney, C. and McDonald, K. (2014), “A toolkit for accessible and respectful engagement in research”, Disability & Society, Vol. 29 No. 7, pp. 1013-1030.

Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M. and Bourne, M.L. (2018), “In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: status and trends through 2016”, Research and Training Center on Community Living, University of Minnesota, available at: https://risp.umn.edu/archive

Nind, M. (2014), “Summary and where next? The pursuit of quality in inclusive research”, in Nind, M. (Ed.), What is Inclusive Research?, Bloomsbury Academic, London, pp. 83-92, 10.5040/9781849668149.ch-005 (accessed 26 February 2021).

Rapley, M. (2004), The Social Construction of Intellectual Disability, Cambridge University Press, Cambridge, doi: 10.1017/CBO9780511489884.

Salmons, J. (2012), “Designing and conducting research with online interviews”, in Salmons, J. (Ed.), Cases in Online Interview Research, Sage Publications, Thousand Oaks, CA, pp. 1-30, doi: 10.4135/9781506335155.

Schroeder, E.C., DuBois, L., Sadowsky, M. and Hilgenkamp, T. (2020), “Hypertension in adults with intellectual disability: prevalence and risk factors”, American Journal of Preventive Medicine, Vol. 58 No. 5, pp. 630-637, doi: 10.1016/j.amepre.2019.12.011.

Schwartz, A.E., Kramer, J.M., Cohn, E.S. and McDonald, K.E. (2020), “That felt like real engagement’: fostering and maintaining inclusive research collaborations with individuals with intellectual disability”, Qualitative Health Research, Vol. 30 No. 2, pp. 236-249, doi: 10.1177/1049732319869620.

Sellen, B. (2008), Art Centers: American Studios and Galleries for Artists with Developmental and Mental Disabilities, McFarland & Company, Jefferson, N.C.

Stack, E. and McDonald, K.E. (2014), “Nothing about us without us: does action research in developmental disabilities research measure up?”, Journal of Policy and Practice in Intellectual Disabilities, Vol. 11 No. 2, pp. 83-91, doi: 10.1111/jppi.12074.

Strnadovά, I., Cumming, T., Knox, M. and Parmenter, T.R. (2014), “Building an inclusive research team: the importance of team building and skills training”, Journal of Applied Research in Intellectual Disabilities, Vol. 27 No. 1, pp. 13-22, doi: 10.1111/jar.12076.

Stone, E. and Priestley, M. (1996), “Parasites, pawns and partners: disability research and the role of non-disabled researchers”, The British Journal of Sociology of Health & Illness, Vol. 47 No. 4, pp. 699-716, doi: 10.2307/591081.

Verdonschot, M.M.L., de Witte, L.P., Reichrath, E., Buntinx, W.H.E. and Curfs, L.M.G. (2009), “Community participation of people with an intellectual disability: a review of empirical findings”, Journal of Intellectual Disability Research, Vol. 53 No. 4, pp. 303-318, doi: 10.1111/j.1365-2788.2008.01144.x.

Vick, R.M. and Sexton-Radek, K. (2008), “Community-based art studios in Europe and the United States: a comparative study”, Art Therapy, Vol. 25 No. 1, pp. 4-10.

Walmsley, J. (2001), “Normalisation, emancipatory research and inclusive research in learning disability”, Disability & Society, Vol. 16 No. 2, pp. 187-205, doi: 10.1080/09687590120035807.

Walmsley, J. and Johnson, K. (2003), Inclusive Research with People with Learning Disabilities: Past, Present and Futures, Jessica Kingsley Publishers, London.

Walmsley, J., Strnadovά, I. and Johnson, K. (2018), “The added value of inclusive research”, Journal of Applied Research in Intellectual Disabilities, Vol. 31 No. 5, pp. 751-759.

Williamson, H.J., van Heumen, L. and Schwartz, A.E. (2020), “Photovoice with individuals with intellectual and/or developmental disabilities: lessons learned from inclusive research efforts”, Collaborations: A Journal of Community-Based Research and Practice, Vol. 3 No. 1, pp. 1-12, doi: 10.33596/coll.45.

Corresponding author

Sara Michelle Miller can be contacted at: smille61@uic.edu

About the authors

Sara Michelle Miller is based at the Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA.

Lieke van Heumen is based at the Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA.

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