Participants fell into three groups: (1) individuals with IDD, (2) individuals who support someone with an IDD (e.g., family members, case managers, direct support providers, etc.), and (3) researchers who engage in research related to disability. Participants were required to be 18 years of age or older. Anyone who identified as someone with an IDD was included in the IDD group. Proof of a formal diagnosis was not required. Individuals with IDD who were their own guardian or had a guardian were permitted to participate. All participants received $50 for their time, given as a gift card.

A total of 9 individuals with IDD, 5 researchers, and 4 people who support someone with an IDD participated in the focus groups. All participants worked and/or resided in Wyoming. Of the participants from the supports group, 1 participant was a family member, 1 participant worked with individuals with IDD, and 2 participants had a dual role of family member and someone who worked with individuals with IDD. All 5 researchers conducted research related to disabilities. Groups were recruited in two ways. The IDD group and supports group were recruited at the Wyoming Developmental Disabilities Conference held in June 2023. All attendees of the conference were invited to attend a pre-conference workshop that explained what research was and the goals of the current research project. Interested participants completed the eligibility and consent process during this workshop. Researchers were recruited through outreach to the University of Wyoming faculty email list, the University of Wyoming College of Health Sciences faculty email list, and the Equality State Research Network (ESRN). Focus groups for researchers were held via Zoom.

This research was determined to be a low-risk study; however, because of potential participants with IDD are part of a protected class, institutional review board (IRB) regulations stipulated that individuals with IDD must demonstrate understanding of the purpose of the research, their rights, potential risks and benefits prior to participating. The individual collecting consent would ensure understanding by asking the individual to repeat back key information about the study, including, but not limited to the purpose of the study, their right to choose to participate or not, that they could stop participating at any time, and that they could choose not to answer any of the questions. This understanding check was conducted prior to consent, and only one individual was unable to complete the comprehension check. If the participant had a legal guardian, a researcher contacted the guardian via email or phone call to obtain approval to discuss the project with the participant prior to administration of the capacity assessment. If the participant demonstrated a capacity to consent and was their own guardian, a written consent form was presented to the participant. If the participant had a legal guardian, the guardian received a consent form, and the participant received an assent form.

Three focus groups with self-advocates and care providers were conducted at the 2023 Wyoming Developmental Disabilities Conference. Researchers from the Wyoming Institute for Disabilities (WIND) held two focus groups with individuals with IDD and one focus group with individuals who support someone with IDD. Two focus groups with IDD researchers were held via Zoom. Focus groups lasted around 60 min. Participants were asked what experiences they, or the individuals they supported, had with IDD research. Participants were encouraged to share successes, difficulties, barriers, and thoughts about including individuals with disabilities in the research process, including creating research questions, collecting and analyzing data, and disseminating results. Interviewers were all staff and faculty of the WIND who had experience working with individuals with IDD.

Four main themes emerged from the focus groups held with individuals with IDD: (1) Positive View of Research, (2) Personal Topics, (3) Research is Intimidating and Inaccessible, and (4) Increasing Comfort in Research. While participants had an overall positive view of research, most had very little experience with any form of research, and those that did, only as a research participant (i.e., as a subject). None had experience as a co-researcher or providing any supportive role to a research team.

Overall, participants indicated that they had a positive view of research. As noted above, none of the participants had ever served as a co-researcher, but many had been research participants. This mostly included answering questionnaires and interviews. However, most participants with IDD spoke of valuing the ability to be a part of something important and helping to solve problems that are important to them. When talking about helping to form research questions, one participant expressed interest in being involved in creating research questions, noting the potential for unique contributions as a result of having an IDD: “My brain is different, okay my brain. And my brain is different.” This comment was made in the context of being able to offer a unique perspective as a result of these differences.

Many comments suggested a deep appreciation of participating in research in any way. Several comments focused on how it allows them to use their voices in ways that they usually were not asked to. “I think it kind of forces you to think creatively about different ways to solve the issue or find solutions to the theme you're researching. Because maybe the typical route to it isn't always the route that works.” This further suggests an awareness that the unique contributions of people with IDD can help enhance research.

When participants were asked if they were interested in participating in similar research in the future, most participants enthusiastically said they would. When the group was asked if they liked helping with research, one participant stated, “Yeah. I like it, I like it here. People helped me out. To talk about research. I liked it here.” Another participant expanded on this by saying,

When asked about what topics they hoped to see in research, and what research questions they would like to develop, participants focused on topics that had a personal connection to their lives. Perhaps unsurprisingly, there were interests that extended well beyond healthcare research. For instance, participants discussed health and wellbeing, relationships, jobs, community accessibility, and disability policy. Each of these topics was discussed in relation to personal experiences in the participant's own life. For example, some participants were interested in research regarding social security benefits and marriage, while others were interested in research related to jobs for individuals with IDD.

Each of these topics had a personal impact on the participant that made the comment, and respondents usually could provide clear explanations of the personal value to their life. For instance, several participants had specific interest in health, with one noting an interest in understanding diabetes better: “Like, figure a way, like, to be healthy”. Non-health related topics of interest often related to social structures, healthcare systems or policies that had significant impact on their lives. One respondent noted a strong interest in potential problems related to an upcoming marriage and how it could impact his social security and other benefits: “… whenever we get married, I'm going to be losing all of my SSI benefits … And we're trying to, and I'm trying to figure out why that is or what the reason is behind it.” Several other comments focused on health care access, especially through Medicaid. The common theme among these topics is that they are meaningful to the participants with IDD and the results could have an impact on their lives.

One of the major barriers preventing those with IDD from participating in research was a concern that research is too intimidating and hard to understand. This included several unique facets, but focused predominantly on not understanding the research process, and inaccessibility of materials. For example, most participants indicated that they would not know what to do if they were asked to help with research. This seemed to relate to a general lack of knowledge about the research process. However, most suggested that they would be willing to learn. For instance, several participants stated that they would need to start with smaller tasks to help build their confidence before they were able to feel comfortable helping with a research team. When talking about getting involved with data collection and interviewing research participants, one participant talked about starting with smaller, less intimidating tasks:

Other participants talked about inaccessibility of materials. Several mentioned how research can be hard to understand, especially when words are used that they do not understand, or instructions are not repeated. During a discussion about not knowing what research means, one participant stated, “Yeah. Especially when you use big fancy words”. Another participant agreed that understanding what was being discussed could be difficult, and they would need things repeated to them in order to understand, “…please repeat it. Again, and hard to understand. hard, hard to understand. Like, like, you know what that means?”.

Difficulty with traveling to where the research is conducted was also commonly discussed. One participant noted “It’s kinda..Well research..What’s this? It’s really hard for me, it’s hard for me because I’m doing this on my own. I left [Wyoming town] last night and then come here [Wyoming Town – about 150 miles away].” This respondent noted that this amount of travel was particularly difficult and made it hard to participate in research, which was echoed by others.

These concerns also led to participants also worried about being rejected by researcher and fear of social situations related to research such talking to people they did not know when collecting data. While discussing their fears of helping with data collection, a participant said, “Especially walking up to a complete stranger. It's like, this is a con. Yeah”. Overall, this suggests that research is both intimidating and inaccessible at times for individuals with IDD, but individuals are willing to learn and grow their skills.

Despite their concerns about joining a research team, several participants had ideas of how they could be more successful as a co-researcher. When discussing how to get involved with research indicated that they would feel more comfortable if they were able to participate with someone who would provide support to support increased engagement in research. This support related to several technical components of participation such as scheduling, transportation, and use of technology to complete surveys. Respondents noted that they thought a support provider could help them manage the research process better and ease any discomfort individuals with disabilities may have. Interestingly, this was not exclusively a professional support provider (e.g., DPS), but could include people from a variety of formal or informal roles. For instance, when participants were asked who they would like to be present to help with research, participants had many ideas including, “Maybe an older, an older person in your life”, “a mentor, or like a coach, or a teacher”, “family member, a case manager”, “provider”, and “friends that you talk to”.

Indeed, many respondents pointed out that building relationships with peers with similar research interests may help them engage in the research process. When talking about the conference where the focus groups were held and avenues where individuals with IDD could participate in research, participants generally agreed noting:

Generally, many participants thought that working in a group of people with similar experiences and interests would increase their comfort to talk about the research that they are passionate about. When discussing how to get research started a participant stated:

Like the IDD group, most support provider participants reported their clients and/or family members had participated in some sort of research in the past but had not been involved as a co-researcher. These respondents generally regarded research as a positive experience for their clients and loved-ones. Five themes emerged from the support providers: Enthusiasm to Participate, Empowerment, Inclusion, Safe Environment, and Translatable Skills.

A very strong theme emerged from this group indicating a belief that their clients would be interested in participating as co-researchers. Overall, there was high enthusiasm for participation and each person stated that if the people they support were given the opportunity to help with research, they would take it. One participant stated, “Like some of my participants, they would be here in a second telling you how much they love you. And they cannot wait and give you the answers that you're looking for”. Another participant mirrored these thoughts when it came to a family member, “…once she gets involved, she's more than ready to give information about what her life or her experience has been”. A third participant agreed that some of her clients would be interested in participating in research:

This group made it clear that the people they support want to be heard if people are willing to ask them about their experiences.

Participants from the provider group discussed that participating in research has allowed the people they support to feel empowered. These respondents noted that when individuals with disabilities are asked to participate in research, they are excited to talk about their experiences and have feel like they have some control over the research that they are helping with. A family member of an individual with IDD said, “I think it's a sense of inclusion. And accomplishment that someone's listening to me.” Additionally, participants noted that having an opportunity to talk about their experiences in a group setting is empowering because there are often like-minded individuals who have had similar experiences listening. One support provider stated:

Further, participants commented that using research as a platform to advocate for oneself and for others with disabilities is very impactful for the people they support. They like that their contribution to research could help other people with IDD. One participant stated, “that's where I think my clients would be like, yes, we need this information so that other people, you know them included, have that benefit”. The empowerment from participating in research makes it more likely for individuals to seek out research, as well as other empowering activities, in the future.

Participants in this group expressed that the people they support want to be asked to participate in research and they want to be listened to throughout the whole process. They indicated that this would promote a sense of empowerment and make individuals with IDD feel respected. Several respondents also noted that in previous experiences with medical appointments and research experiences, individuals with IDD were usually not asked questions directly. One participant reflected on this:

Additionally, participants in this group emphasized a need for communication throughout each research step, including improved communication during data collection and dissemination of results. One participated noted that in a research study, they stopped receiving communication from the researchers, “Yeah, you expect a kind of a follow up or reason, or maybe we've terminated this information or research that just dropped with no reason or rhyme”. Many participants noted that the people they support never received information about the results of the studies they participated in, leaving them confused about the outcome of the study and how it impacted individuals with disabilities. One participant stated:

When discussing the ideal circumstances for individuals with disabilities to participate in research, many support providers discussed the need for a safe environment. This group noted that individuals with disabilities need to know that they will not be judged for what they say and that they are in an environment where they are allowed to freely express themselves. One example of a safe environment was the conference where the focus groups were held. When asked if the conference felt like a safe environment for individuals to express themselves, one support person said:

Respondents noted that this type of open environment develops a sense of comfort for individuals with disabilities and creates an opportunity in which they can formulate their own stories to share with researchers and their peers. Participants stated that the people they support are often left out of conversations or feel they are in environments that are too restrictive for them to share their thoughts. When discussing another speaker at the conference that had talked about his experiences not being included due to his disability, a family member shared:

Most participants from this group reported that the people they support did not have any formal experience in helping with any aspects of the research process. However, many participants discussed skills and experiences that they thought would be beneficial in supporting research projects. Specifically, participants discussed a range of experiences and skills related to critical thinking, resourcefulness, and problem-solving. For instance, when asked if the people they supported had ever interviewed participants, one support person stated the people they supported participated in the hiring process at their group home and asked potential staff questions during the interview process, “It's just interviews that they will give somebody who we'll hire. Alright, so they were doing the interviewing on if they're going to hire them or not.” Additionally, when participants were asked if the individuals they supported had ever assisted with planning a study, one participant stated that their daughter had organized a birthday party.

Other examples of experiences with translatable skills included participating in science fairs in school, participating in speech and debate clubs, propagating plants, and counting the number of new animals added to a family's goat herd. In general, this group thought that there were many skills that people with IDD can use to support research projects.

Like the previous two groups, the group of researchers noted that those with disabilities rarely ever participate in research as co-researchers. This group noted several obstacles that discouraged the inclusion of individuals with IDD in research. In discussions about these obstacles, four prominent themes emerged: Structural Barriers, Comfort/Training, Advisory Boards, and Disconnect Between Academic Processes and What Individuals with IDD Need.

The most prominent theme among disability researchers were the structural barriers that they faced in including individuals with disabilities in the research process. The most common barriers discussed were resources (i.e., money, childcare, translators) and time. In relation to resources, researchers discussed how it was difficult to find funding to compensate participants and research assistants. Additionally, finding funding to help co-researchers with disabilities attend conferences was a barrier. One researcher talked about the cost of attending conferences:

During discussions about time, researchers talked about how much of a time commitment CBPR can be. It can be difficult to find individuals, including those with IDD, who are willing to commit a significant amount of time to a project. The time commitment can be intimidating to both researchers and individuals with IDD who may otherwise be interested in helping with research. When talking about time, a researcher commented:

Related barriers discussed include a lack of flexibility in research plans, such as having inaccessible meeting times for community members, and the inaccessibility of many research tools and spaces. One researcher reflected on the accessibility of the research tools they were using and how they learned from these unexpected accessibility challenges:

Although a less common theme, a few researchers discussed a lack of comfort in including individuals with IDD, for both themselves as researchers and for co-researchers with IDD. For some researchers, they were cognizant that they lack the training they need to know how to effectively include individuals with IDD in the research process. These respondents also talked about a lack of experience in conducting research on topics that individuals with IDD may be interested in. For example, one researcher noted a personal lack of technical training to approach questions about larger, census level research questions that some individuals in the community had posed:

This group also discussed a potential lack of training for co-researchers with IDD as well. Specifically, many researchers discussed that many individuals with IDD, although interested in helping, may not have a background in research methods to be effective. Research worried that this could become more complex in later stages of the research process, such as analyzing complex data. While talking about data analysis, one researcher noted:

This group expressed concern that researchers must train these new co-researchers, starting with basic research methods. One researcher reflected on a previous research study where individuals with IDD were involved:

Several researchers reported utilizing advisory boards comprised of individuals with IDD in previous studies but worried about the degree to which this was meaningful or impactful. These advisory boards were largely used as sounding boards in the beginning of studies to ensure that study procedures and the questions that were asked would be appropriate for the target population. In some cases, advisory boards gave some input in the interpretation of data or were given reports of outcomes. One researcher noted:

Similarly, most researchers reported their advisory boards did not participate in other vital research processes, such as data collection, data analysis, and dissemination. Researchers attributed these deficits in participation to the barriers discussed above, as well as a lack of interest in other parts of the research process. When discussing previous experiences with advisory boards, one researcher stated:

Further, several researchers commented that they believed they should include individuals with IDD in more aspects of the research process but had not done so due to the numerous barriers noted. One participant stated:

Another researcher mirrored those thoughts while reflecting on their own research and how they had not asked people with IDD for their input:

One aspect that many researchers commented on was how the typical functioning of academia does not fit well with modified processes that would benefit individuals with IDD. For instance, participants stated that research requires rigorous methodology and changing procedures to be more accessible for co-researchers with IDD may be difficult. One researcher noted, “it's hard, because it just in the science world we're so strict about how you control everything, is getting, yes, you have to do things by the literature. And it's hard to change those protocols”. Further, this researcher commented that including individuals with IDD in research may change the way they interact with their university's IRB. They discussed IRB regulations and the extensive training required to follow the rules of research, which may be difficult for co-researchers with disabilities to complete:

Further, researchers noted that academia tends to be inaccessible for those outside of a university setting, due to its emphasis on advanced literature and intimidating dissemination processes, such as academic papers and presentations. This group noted that while these processes are commonplace for researchers, individuals with disabilities may be hesitant to engage in research if these barriers are in place and may benefit from different forms of dissemination. One researcher noted how conferences can be intimidating for individuals with IDD, and more informal presentations may be beneficial:

Three groups of stakeholders provided their perspective on inclusions of individuals with IDD as co-researchers. In general, all three groups expressed interest in inclusion of those with IDD in the research process. However, all groups identified a variety of barriers noted that make it challenging to conduct community engaged research with those with IDD. Many of these barriers were related to lack of comfort, knowledge and training related to inclusive IDD research. Other barriers were structural and related to the environments in which academic research is conducted.

One commonality between all three groups was an agreement that the inclusion of people with IDD as coresearchers is a worthwhile and important endeavor. For individuals with IDD, research is a platform in which they can express their opinions and contribute to outcomes that matter to them. Participants with IDD felt excited to participate in research where they could talk about their experiences and have an impact on the lives of other individuals with IDD. Similarly, people who support individuals with IDD discussed the inclusion of individuals with IDD as empowering for the individuals they support. When individuals with IDD are invited to advocate for themselves and help shape research, they feel empowered to continue sharing their experiences and engaging with research. Researchers also noted an interest in including individuals with IDD in research, and that it has been useful in the past to include the lived experiences of individuals with IDD when planning projects and interpreting data. Further, multiple researchers expressed that they should be doing more to include individuals with IDD in their research, demonstrating an awareness of the value of lived experience.

While the importance of individuals with IDD as co-researchers was recognized in each group, many discussions turned towards the broad range of barriers that make including individuals with IDD difficult. One such barrier is a lack of comfort related to the inclusion of individuals with IDD. For example, individuals with IDD expressed uncertainty and feelings of intimidation when thinking about participating as a co-researcher. For most individuals with IDD, helping with research is a novel task, and individuals may not know where to start or feel confident enough in their skills to believe that they could provide a meaningful contribution. Similarly, researchers expressed a lack of comfort in including individuals with IDD in their research due to uncertainty about how to effectively include this population in various research tasks. These concerns may demonstrate a need for increased training for both groups to prepare them to effectively participate in inclusive IDD research. This may include developing formal training for self-advocates to better understand what research is, how specific tasks should be conducted and how to contribute to the process. Researchers may also benefit from training on working with those with IDD, how to develop accessible materials, and tailor tasks to the skills of the individuals serving as co-researchers. Additionally, there may be a benefit to promoting more informal meetings between individuals with IDD and researchers. Informal interactions can help build rapport, develop trust and openness, create opportunities to discuss support needs and how to increase comfort with engaged research.

Another notable finding from this study was the potential role of care providers. Individuals with IDD expressed an interest in having trusted individuals, such as family members, staff, mentors or friends, around as they helped with research in the event they needed support or felt uncomfortable. Similarly, individuals from the supports group talked about the importance of creating an open environment that makes individuals with IDD comfortable. This group discussed that when individuals with IDD know they are supported, they are more willing to do things that are out of their normal routine. Support providers also noted that many individuals with IDD have transferable skills that could support research endeavors. This suggests that care providers could be important allies in supporting inclusive IDD research. Given that direct support providers are charged with implementing person-centered plans of care that allow the individual with IDD to engage in desired activities, they may be able to help build engaged research activities into care plans. Other service systems could also be supportive. For instance, Vocational Rehabilitation provides job coaching and other supports for those with IDD to promote competitive employment. These, and other support systems could be particularly important to supporting inclusive research given their roles. This would necessarily include other natural supports, such as family members or guardians who also support loved ones with IDD given that they may have some degree of formal or informal control over some aspects of the individuals’ day-to-day life (e.g., guardianship).

While there was general support for individual measures, such as training or supported employment, that could promote inclusive IDD research, there were also several important structural barriers that could present significant disincentives. Researchers were the group that were most likely to note these challenges, which included a lack of time and resources, limited funding, and institutional limitations such as strict IRB requirements. Structural barriers may be more resistant to change given that they require institutional and/or cultural change. This may discourage researchers, who may have requirements from their institutions to publish papers and acquire grant funding, from attempting CBPR and including individuals with IDD in the research process. This may be especially true for newer researchers who have increased grant and manuscript production demands to secure tenure.

Given the importance of securing funding to advance research, it may be useful for funders to encourage more engaged research, or roles for those with lived experience. While there are some funding mechanisms designed specifically for CBPR, monetary and time costs may still dissuade researchers from pursuing this work if they have institutional demands for research production. Nonetheless, securing significant funding for inclusive and engaged research can help institutions understand the value of this approach and help support researchers that wish to pursue this type of work. Moreover, as more funders recognize the value of engaged research, they may consider building structural features into the award, such as additional time for engagement, CBPR training expectations, and requirements to include co-researchers.

This study demonstrates that, despite strong interest, there are many barriers that make it difficult for those with IDD to participate as co-researchers. These barriers will need to be addressed to facilitate the participation of individuals with disabilities as co-researchers in IDD research. While individuals with IDD, support providers, and IDD researchers all value inclusive IDD research, additional training and modifications to research processes are needed to promote inclusive IDD research. Although addressing some of these barriers will likely be difficult in the near-term including individuals with IDD will strengthen the research process and the products that are developed through inclusive research. Nonetheless, this research is instructive regarding the nature of challenges that stakeholders face when trying to create inclusive IDD research. This will help focus efforts on addressing these barriers to promote greater inclusion.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving humans were approved by Institutional Review Board University of Wyoming. The studies were conducted in accordance with the local legislation and institutional requirements. Written informed consent for participation in this study was provided by the participants’ legal guardians/next of kin.

AD: Conceptualization, Data curation, Formal Analysis, Investigation, Methodology, Validation, Writing – original draft, Writing – review & editing. TB: Conceptualization, Formal Analysis, Funding acquisition, Investigation, Methodology, Resources, Supervision, Validation, Writing – original draft, Writing – review & editing. CH: Conceptualization, Data curation, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – review & editing. EM: Conceptualization, Formal Analysis, Funding acquisition, Inv