“That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability

Abstract

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as “inclusive research” (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members’ values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams’ processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.

Keywords

community-based participatory research intellectual disability developmental disabilities participatory action research inclusive research qualitative interviews

Introduction

Researchers have long recognized the value of including stakeholders from marginalized groups in the research process to address power imbalances, improve quality of life, and reduce disparities (Kidd, Davidson, Frederick, & Kral, 2018). Accordingly, researchers concerned with the well-being of people with intellectual disability are increasingly turning to stakeholder partnerships to address disparities this group experiences in areas such as access to health care (Anderson et al., 2013; Krahn & Fox, 2014; Vazquez, Khanlou, Davidson, & Aidarus, 2018), employment (Butterworth & Migliore, 2015), community and social participation (Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009), and quality of life (Simões & Santos, 2016).

“Inclusive research” (IR) is increasingly used as an umbrella term to refer to research collaborations with people with disability,¹ including approaches such as participatory action research (PAR), community-based participatory research (CBPR), patient-engagement research, and emancipatory research (Bigby, Frawley, & Ramcharan, 2014). IR has its roots in systems change and Freire’s critical pedagogy, which suggests that when oppressed groups interrogate the cause of their oppression they are able to develop empowered identities and effective solutions to ameliorate the root causes and impact of oppression (Freire, 1993; Walmsley & Johnson, 2003). Walmsley and Johnson (2003) described five principles of IR that reflect considerations unique to people with disabilities, such as the specific ways in which they experience marginalization and need support. These principles are: (a) “The research problem must be one that is owned (not necessarily initiated) by disabled people”; (b) “It should further the interests of disabled people; non-disabled researchers should be on the side of people with [intellectual disability]”; (c) “It should be collaborative-people with [intellectual disability] should be involved in the process of doing the research”; (d) “People with [intellectual disability] should be able to exert some control over process and outcomes”; and (e) “The research question, process and reports must be accessible to people with [intellectual disability]” (Walmsley & Johnson, 2003, p. 64).

Figuring out how to operationalize these principles is essential to fostering and maintaining IR collaborations. To date, study of IR has primarily focused on describing a single research study or team (e.g., O’Brien, McConkey, & García-Iriarte, 2014; White & Morgan, 2012). These accounts shed light on how to support access to the research process for people with intellectual disability and critically reflect on power sharing within each study. Adding to this, literature reviews (Bailey, Boddy, Briscoe, & Morris, 2015; Frankena, Naaldenberg, Cardol, Linehan, & van Schrojenstein Lantman-de Valk, 2015) and consensus statements (Frankena et al., 2018; Telford, Boote, & Cooper, 2004) have described challenges to IR and strategies. Still, the field lacks a conceptual framework describing how these strategies may be operationalized across in teams with diverse team-level and contextual factors. Furthermore, literature reviews draw only upon published information and consensus statements have not included the perspectives of researchers with intellectual disability.

Nind and Vinha (2014) conducted focus groups in Europe with inclusive researchers with and without disabilities and proposed a model to describe how IR teams work together. Moving beyond previous reviews focused on static measures of collaboration (e.g., specific contributions of co-researchers; Jivraj, Sacrey, Newton, Nicholas, & Zwaigenbaum, 2014; Stack & McDonald, 2014), Nind and Vinha’s model acknowledged the dynamic and situated nature of collaborations. Their model describes how teams may have “formalized” and “improvised” ways of working together and that support, negotiation, and interdependence may be emphasized differently across teams. While this model illustrates the relationship between team members and IR team processes, the model did not explicate how these components interact with factors outside of the team (contextual factors) to foster and maintain IR collaborations. Furthermore, it is important to consider how these contextual factors may work across funding contexts outside of Europe. Filling this knowledge gap could help researchers identify when and how to implement previously identified strategies. Understanding relationships among these factors may inform future empirical studies of IR process and support researchers to more effectively apply IR principles and collaborate with people with disabilities.

To understand how contextual factors, team-level factors, and processes coalesce to foster and maintain IR collaborations, it is necessary to gather information across multiple IR teams working across multiple contexts. To do this, we conducted key informant interviews (Marshall, 1996) with experienced inclusive researchers with academic training (“academic researchers”) and researchers with intellectual disability (“co-researchers”) from across the world. Qualitative research is suited to meet this goal, as it is a tool for elucidating complex processes (Maxwell, 2013). In addition, a qualitative approach directly includes the perspectives of co-researchers with intellectual disability—voices which, with few exceptions (e.g., Nind & Vinha, 2014; Nind, 2017), have been excluded in theorizing about IR (Di Lorito, Bosco, Birt, & Hassiotis, 2017).

Method

All methods, including accessible consent approaches, were approved by a university institutional review board (IRB) and all participants provided informed consent. We developed our interview questions based on a review of the literature and our own experiences with IR (e.g., Kramer, Kramer, García-Iriarte, & Hammel, 2011; Kramer & Schwartz, 2018; McDonald & Stack, 2016; Stack & McDonald, 2014). We worked with a paid research assistant with intellectual disability to co-conduct interviews with co-researchers. He also provided feedback on the interview protocol; his input helped ensure questions and the reflection protocol utilized accessible language. This research assistant was an experienced researcher with whom some of us had worked for 5 years, and this work benefited from his ability to connect with participants and to ask questions the academically trained interviewer had not thought to ask. We do not describe the present study as an IR study, as the research question and research outputs were driven by Schwartz and the research assistant was primarily engaged in data collection, with only minor input on data collection procedures (Walmsley & Johnson, 2003).

Recruitment and Sampling

We recruited academic researchers (including student researchers) in English-speaking countries. Seeking participants with rich IR experiences, we invited academic researchers with (a) experience with at least two IR studies with people with intellectual disability or experience with a single IR study for ≥4 years (to ensure they had experiences both developing and maintaining IR studies), (b) at least one IR study published in a peer reviewed journal, (c) ability to communicate in English, and (d) at least one IR experience in the last 12 months (to foster accurate and detailed recollection). We asked participating academic researchers to nominate co-researchers who had (a) diagnosis of intellectual disability, (b) ability to communicate in English, and (c) at least one IR experience in past 12 months. With permission, academic researchers shared co-researchers’ contact information with us. Because the population meeting these criteria is small, we included individuals from the same IR project, provided at least one of the key informants had experience with a separate IR project.

Participants

We collected data in two waves. First, we interviewed academic researchers (n = 5) and co-researchers (n = 5). All five academic researchers were female and four identified as White. Academic researchers were from the United States (n = 2) and Western Europe (n = 3) and had an average of 15.8 years of experience (range: 4–35 years). All co-researchers (2 female, 3 male) identified as White. Co-researchers were from the United States (n = 2) and Western Europe (n = 3) and had an average of 5.3 years of experience with IR (range: 3.5–8.0 years). After we developed a preliminary model, to triangulate the model, we conducted a second wave of data collection in which we interviewed additional academic researchers (n = 3; all White females, one each from the United States, Western Europe, and Australia, average years of experience: 12.3; range: 5–20 years) and one co-researcher (White female from the United States; 2.25 years of experience). We were unsuccessful in recruiting additional co-researchers for this stage. We limit demographic details to protect participant confidentiality.

Researcher Positionality

The researchers have significant experience with qualitative research and using and/or studying IR with individuals with intellectual disability. Our backgrounds are in disability studies, occupational therapy research and practice, and community psychology. Schwartz—an occupational therapist with a background in disability studies, who at the time had 5 years of experience conducting IR with young adults with intellectual and developmental disabilities—led all research processes with the ongoing guidance of the other authors. From her experiences, she believed that the IR setting is inherently a social context imbued with power differentials and that individuals with intellectual disability have the potential to access IR when the process is made accessible.

Interview Guide and Procedures

We conducted interviews via telephone or Internet chat (e.g., Skype, Google Hangouts) and video and/or audio recorded all interviews. We used storytelling as an accessible means to elicit rich details from participants (Arthur, Mitchell, Lewis, & McNaughton Nicholls, 2014). We checked for understanding by reflecting back our understanding of the main idea conveyed in each story. We completed field notes documenting reflections, assumptions, and preliminary interpretations about how to foster and maintain IR collaborations (Arthur et al., 2014).

We asked academic researchers to tell stories about IR to elicit their theories and beliefs about how to foster IR collaborations with co-researchers with intellectual disability (Supplemental Table S1). To promote accessibility, we asked co-researchers to tell stories about when research was fun, boring or frustrating, important, and not important, anticipating these stories would reveal the spectrum of involvement and collaboration and the contexts within which these experiences were embedded. We also provided co-researchers with an interview guide written in plain language prior to the interview (Mactavish, Mahon, & Lutfiyya, 2000) and co-conducted the interviews with a research assistant with intellectual disability to increase co-researchers’ comfort, leading to a greater depth of discussion than if the interview were conducted only by a researcher without a disability (Mirra, Garcia, & Morrell, 2016). We invited co-researchers to include a support person (e.g., friend, paid supporter) of their choice (McDonald, 2012); only one co-researcher chose to do so. Finally, we “set the stage” by beginning with factual questions to help participants recall details of their work to facilitate comfort and reflection (Arthur et al., 2014).

Analysis

We created de-identified, verbatim transcripts and analyzed the data using principles from grounded theory, as we sought to inductively build a conceptual model (Charmaz, 2014). The primary and secondary coders first reviewed each transcript to become familiar with the data and had discussions throughout data analysis. Next, the primary coder marked passages that reflected processes (specific, systematic, and consistently used procedures) and contextual and team-level factors related to collaboration using open codes that “[stuck] closely to the data” (Charmaz, 2014, p. 112). The primary coder then organized open codes into categories of similar meaning to define initial codes. Using NVivo, she recoded the data using the initial codes. After reviewing all data captured by each initial code, the primary coder organized initial codes into superordinate units of meaning, defined focused codes, and applied the focused codes to the data. A trained graduate research assistant not involved in the development of the codes triangulated this stage of analysis by applying focused codes to four transcripts. Then, to ensure the focused codes adequately captured relevant processes and factors, we examined how often focused codes occurred across participants and discussed challenges differentiating codes to refine, remove, and expand the focused codes. Next, the primary coder explored relationships among focused codes by using NVivo matrix coding and developing concept maps (Bazeley, 2013) and narrative summaries for each participant (Spencer, Basualdo-Delmonico, Walsh, & Drew, 2014). Finally, the coders examined relationships between frequently occurring focused codes within and across participants. The primary coder connected related focus codes into themes and developed a conceptual model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. Throughout, the primary coder created an audit trail by documenting the interview and analysis process and memoing to record assumptions, questions, and intermediate conclusions (Maxwell, 2013).

To evaluate whether the model adequately described the data, the primary coder constructed tables with data that represented each theme in the conceptual model for each participant. The second coder triangulated the analysis (Carter, Bryant-Lukosius, DiCenso, Blythe, & Neville, 2014) by using the same table structure to analyze the data for four participants. At this stage, we searched the data for important concepts that were not represented in the conceptual model; we identified that the model comprehensively described the data.

Triangulation interviews

We conducted four additional interviews (three academic researchers and one co-researcher) to examine the transferability of the preliminary model to additional research contexts; data from these interviews are incorporated into the results. These interviews followed the same protocol as described above, with the addition of interview questions to clarify constructs in the proposed model. The primary coder applied focused codes to these interviews and constructed matrices to evaluate the fit of the preliminary model to the data. These interviews did not lead to any changes in the model, suggesting salience of the model across a range of IR contexts.

Member reflections

To enhance the transferability and confirmability (Letts et al., 2007) of the model and “generate additional data and insight” (Smith & McGannon, 2018, p. 108), we conducted member reflection interviews with two academic researchers and two co-researchers. Prior to the interview, we sent participants a video narrated in plain language describing each theme in the conceptual model. We provided co-researchers with a customized video that included quotes from their interviews that represented each theme in the model, in addition to a worksheet asking for feedback on each component of the model. We asked participants to provide feedback on the model’s applicability to their experience. Their feedback led to changes in how we described the influence of contextual factors, but not our conceptualization of the model.

Findings

We identified six themes that informed our model describing how to foster and maintain IR collaborations. We first present each of them separately and then together within the proposed conceptual model.

“We are a significant part of this”: Team Members’ Characteristics Influence on IR Collaborations

All participants described how team members’ values and characteristics (e.g., skills, experiences, interests, and motivations) influenced their collaboration. Academics and co-researchers shared similar values. All academics and most co-researchers stated their value for inclusion, as articulated by the disability rights movement’s motto, “nothing about us without us,” and cited it as a driver of their research team’s approach and for co-researchers, a strong motivator to engage in research. Participants also spoke about valuing equality, or that “nobody is above anybody else” and “it’s not hierarchical.” Many academic researchers shared that the social model approach of disability (see Oliver, 1990) informs their work.

Academic researchers noted the importance of thoughtfully identifying co-researchers: “I don’t think we always talk about selection, and I don’t think that being a co-researcher, just as being an academic researcher, is a position for everybody.” Another academic explained the need for co-researchers, “to be interested in the research you’re doing. They need to be curious and inquisitive.” All participants described the importance of relevant lived experiences such as self-advocacy or being peer educators, in which co-researchers are “already used to speaking in public . . . working on projects.” Many co-researchers shared how their experiences with advocacy supported their abilities to connect with others and to complete research tasks: “before I worked at [research team], I was a full-time volunteer for [city] People First . . . I guess that skill transferred over.” Co-researchers felt these prior experiences led to their invitation to collaborate with academic researchers: “she kind of thought that, as a self-advocate I would give good things to the research, and to the project.”

Two academic researchers also described the importance of support personnel (e.g., research assistants and personal assistants) having both technical and interpersonal skills to successfully support co-researchers: “Just to have a personal assistant doing a lot of the practical day-to-day support—that was not sufficient for her engagement . . . she also needed that intellectual support.” Research teams benefit when there is an optimal combination of values, skills, motivations, interests, and experiences of all research team members.

“Be dynamic and figure out what’s working and what’s not working”: Making IR Accessible

Valuing inclusion drove academic researchers’ commitment to accessibility, and all teams operationalized their values by creating an accessible research environment. Participants described multiple forms of accessibility: “there’s the making the information accessible, and then there’s the making the [research] meetings accessible.” Making research activities accessible can be time-consuming and is often an individualized process. One academic researcher shared challenges related to “having time to put [materials] in accessible language.” Another challenge is that individuals’ support needs, “at the beginning of a project may be different than at the end,” which leads to the need for research teams to continually reevaluate team processes and approaches to accessibility.

Participants also described strategies documented elsewhere to support accessibility (e.g., Frankena et al., 2018). To facilitate access, teams attended to the pace of conversation (e.g., “We slowed things down.”), used plain language, broke complex tasks into multiple steps, reduced the amount of text co-researchers needed to read, used visuals, and provided opportunities to complete research tasks in individualized ways that drew upon co-researchers’ strengths and interests. Several co-researchers attended small or one-on-one meetings to prepare for full team meetings. Many participants described ensuring access by creating a space in which co-researchers felt comfortable to ask questions as needed. One co-researcher shared that it was helpful when, “after [academic researchers are] done explaining things, [academic researchers] say ‘does anybody have any questions?’”

Some academic researchers alluded to debates about whether or not co-researchers should be trained in traditional research methods (e.g., conducting interviews, specific types of analysis, etc., that are traditionally taught and used in the academy; Janes, 2016; Milner & Frawley, 2018; Walmsley & Johnson, 2003; Zarb, 1992). While several academic researchers suggested that accessible and authentic collaborations are fostered when the research process draws upon individuals’ existing skills, one academic researcher more directly asserted, “I think that’s not authentic when you have to do things like train people to be researchers . . . authenticity can only come where we are really playing out that individually responsive approach.” Related, most co-researchers had difficulty identifying specific skills they had learned as researchers and many felt they already had relevant skills from prior experiences.

“It is very important to me. I learned a lot of new things”: IR Collaborations are Maintained by Perceived Benefits

All co-researchers described multiple personal and societal benefits to involvement in IR. Personal benefits included learning, developing relationships, finding the research enjoyable, increased confidence, experiencing success, and being part of a team: “It was fun when . . . I got to know more about myself”; “It is very important to me. I have learned a lot of new things”; “All the topics that we talked about were very interested and I learned a lot”; “I think it was just fun meeting everybody and working as a team and just being part of it”; “I felt achievement and using your skills”; “The information [interviewees] give is really interesting.”

All but one co-researcher emphasized that their research had societal benefits, primarily positive outcomes for people with disabilities: “I choosed it to be my job as a researcher because its . . . how can the next generation of people who want to set up a self-advocacy group . . . and then how to better that.” Another co-researcher added, “I want to do research, because I like being part of something that might help other people. In a way that’s not gonna be harmful.” These perceived benefits may be why many maintained involvement over multiple years and projects.

Academic researchers also perceived societal benefits as critical to their work. They described projects grounded in the expressed needs of people with disabilities and a commitment to generating outcomes that were meaningful to co-researchers, such as toolkits and plain language reports. While academic researchers may benefit less from these outputs than traditional academic outputs (e.g., journal articles), they felt, “those of us who’ve got the money, time, and resources . . . can stand by people with an intellectual disability and mediate their voices into what they want as outcomes.” Thus, supporting co-researchers to realize their desired outcomes can maintain engagement and can also be seen as an ethical imperative.

“There was trust, there was familiarity”: The Role of Relationships

Many participants valued opportunities for new relationships and described the importance of trust and familiarity. All participants reported that increased familiarity over time facilitated teamwork. One academic researcher shared, “What happened over time is that, [team members] got a little better at predicting what each other wanted.” In many cases, co-researchers and academics had prior relationships; still, they had to

take a bit of time to get to know a person and then once you get to know that person they should know how that person works and how do yourself work so that you can . . . co-work together at the same level.

These relationships may support conversations about difficult topics: “there’s just a camaraderie that I think goes a huge way” (academic researcher). When team members did not have existing relationships, dedicating time to “[get] to know each other was really important.” Teams established relationships by spending time together while traveling for research or eating meals together.

Academic researchers emphasized the importance of trust. They fostered trust by being responsive to co-researchers’ input and requests for changes:

There was trust, there was familiarity, the thought that people could be honest and they knew, I think this is a big one, they knew that their feedback would be considered, taken seriously and probably change the course of the work that we did.

Another way academic researchers fostered trust was open and transparent communication by discussing funder and timeline challenges. One academic researcher described how her approach changed:

In earlier studies, I had the tendency to try to figure it out by myself. If I just involved them in my own struggles, they felt like there were part of the research, even though . . . they couldn’t be part of all the steps we were taking.

This is one example of how relationships and teams’ structures impact each other: concurrently, team members’ relationships and the team’s process changed (i.e., increased transparency) and co-researchers provided more input, which contributed to their ongoing involvement.

Co-researchers discussed relationships as both a benefit to doing the research and a challenge. When asked about positive aspects of research, co-researchers often said they were able to “meet new people” and develop relationships with other team members and sometimes research participants. Two co-researchers also discussed challenging interpersonal situations when within the research team, “people . . . might not [think] the same way that you think.” However, both said that increased familiarity with each team member over time helped resolve these challenge: “you butt heads a little bit . . . [but] . . . you become friends.”

Teams’ Processes and Structures Facilitate IR Collaborations

One way in which teams operationalize their values is through their structure(s) (i.e., how they are organized) and their processes (i.e., how the team works together). Research teams were usually prospectively structured to foster equality and be responsive to co-researchers’ input. As needed over time, teams refined their processes for collaborating to maintain engagement.

One structural component of research teams was the division of labor between academic researchers and co-researchers across phases of research. Some academic researchers described an approach in which, “at each juncture of that work, whether it’s program development, evaluation . . . everything [emphasis] is done collaboratively.” Other research teams did not include co-researchers in all tasks and decision making, depending on resources, other constraints, and the team’s beliefs about the purpose of co-researcher involvement. In general, co-researchers were most often not included in administrative decisions and tasks (e.g., communicating with funders, the IRB, budgeting). One academic researcher shared:

But sometimes if it was IRB related or budget related, we didn’t really want to waste the community advisors’ time on the background stuff. And we told them, “we’re doing work on the project, but that’s just kinda to keep the thing going, not really about what the survey’s gonna be or how we’re gonna engage in the community.” There’s just so much to do on a project and we kinda signed up for what community members are responsible for, what academics were responsible for, and what stuff we’re gonna meet in the middle. We each knew our parts and were fine with not collaborating on some things.

Another academic researcher emphasized the importance of their team structures eliciting co-researchers’ conceptual, rather than hands on contributions:

In most cases, the decision making was made as a group, but the actual implementing it was often done by research assistants . . . we basically felt that what we needed from them was their . . . intellectual contributions.

Both of these researchers demonstrate how their teams were structured in a way that emphasized co-researchers’ conceptual input. When time or resources limited the ability of teams to include all co-researchers in all decisions, some research teams incorporated the voices of co-researchers in leadership positions. These leaders had responsibilities such as planning meeting agendas or providing input when decisions needed to be made quickly.

Another important structural component was the composition of the research team, including the number of members with and without disabilities or specific professional/educational backgrounds. Two academic researchers described how they tried to, “shift power with numbers” by including more co-researchers than people without disabilities on their teams to increase the voice of co-researchers. One co-researcher suggested that the presence of other co-researchers helped her feel more comfortable speaking up:

People could actually understand you . . . because you hear other people, “oh yeah, I can relate” . . . I think that what’s really good about doing this with people that might have the same . . . experiences.

Research teams described a range of processes for working together that supported equality and responsivity to co-researchers’ input. One way that academic researchers tried to support co-researchers’ collaboration was to utilize formal processes to elicit co-researchers’ feedback. This often included voting to make decisions and/or “check-ins” in which each team member had an opportunity to offer input on the research process.

While academic researchers described how transparency fostered trust, co-researchers described transparency as a factor that helped foster equitable collaboration: “when we’re doing stuff all the people that are in the building at the time . . . we always share information.” Another co-researcher described being frustrated when she felt “out of the loop”; she eventually left this project. When describing her frustrations she said, “Keep us informed. Cause it’s hard, because we can’t be there every minute. But, I think get everybody’s opinion . . . Keep us more informed.” These quotes demonstrate how intentional and transparent communication is a process that can maintain co-researcher collaboration and involvement.

Teams’ structures and the way processes are enacted and perceived influences the extent to which co-researchers share control with academic researchers. Some co-researchers very explicitly described a process of academics seeking their input and the research team acting on (i.e., being responsive to) their input. While these co-researchers were authentically collaborating and involved in the research, this process of seeking and acting on input is led by academics. We call these types of collaborations “academic-facilitated.” In contrast, other co-researchers described their team structures and processes as contributing to an IR environment in which co-researchers felt they were “equal” to academic researchers. For example, some participants described how co-researchers and academic researchers have equal say in what their team does and who performs specific research tasks (e.g., “We’re all given equal job loads. We’re all given equal opportunities”; “We voted.”). We call this type of collaboration “co-facilitated.” Similar to Nind and Vinha’s (2014) findings, co-researchers on academic-facilitated teams did not necessarily feel that they were less involved; rather, they simply described team members as having different roles. This may be attributed to the fact that involvement in research is not typical for individuals with intellectual disability, so perhaps any level of involvement was perceived as meaningful.

“They’re not the sort of people who’ve been hovered in by the trust²”: The Impact of Contextual Factors

Contextual factors had a significant influence on teams’ structures and processes, and thus, the type of collaboration, including the extent to which teams functioned as co-facilitated or academic-facilitated. These factors included how the project was initiated, which team member(s) were accountable to funders, institutional systems (e.g., payroll and IRB), and previous experiences working together. Time and funding were frequently mentioned as inextricably linked and impacted the structures and processes used by all research teams. Many participants described IR as time-consuming, noting how establishing access is a dynamic process:

ensuring that you’ve got the funding and the resources and the capacity to allow [for] lots of full staff and lots of trial and error is problematic . . . the way things are funded often you don’t have the opportunity for trial and error.

Often funding impacted the amount of time teams could work together: “We would like to come more often, more hours a week, or more days a week . . . But, there’s not enough money to have them working here for more hours a week.” Another consequence of lack of time and/or funding may be that teams have to make decisions about the parts of research in which to involve co-researchers.

The research teams in this study were primarily initiated in two different ways. Some were assembled in response to an academic researcher acquiring grant funding for a specific project. Others were existing teams that apply for grants together. Academic researchers on teams with both types of origins strove to foster collaboration and shift power to co-researchers. While how the team was initiated was not deterministic of how members collaborated, most co-researchers on teams assembled in response to specific grant funding described academic-facilitated collaborations. In contrast, most co-researchers on existing teams described their teams as co-facilitated. One factor that may have influenced this pattern is which team members were accountable to the research funder:

Part of what was difficult to navigate was. . .people bringing up an idea, and saying, . . .Yes, those things matter and they’re really important . . . but these things are beyond the scope of what we’re able to do here . . . ’cause we have a grant from a federal funder, we’ve got to do a certain set of things.

Here, the academic researcher felt she had to ensure she met the aims of the funded grant. In contrast, a co-researcher on a long-standing team said that their process for choosing future research topics involved co-researchers: “we all sat down and we were thinking about what we’d do next in our project and we all thought about [name of project].” In these existing teams, co-researchers and academic researchers described working together to plan projects and collaboratively apply for grants. When they do this, they can collaboratively plan team members’ roles, how funding will be used, and the scope of the project.

Proposed Model of IR Collaborations with Individuals with Intellectual Disability

We propose that IR collaborations with co-researchers can be described by the model in Figure 1. In both academic-facilitated and co-facilitated research teams, teams’ values serve as a foundation for their commitment to accessibility. Individuals’ characteristics are also foundational to IR collaborations and can influence the types of supports needed for access. In addition to accessibility, there is reciprocity between co-researcher collaboration, IR processes and structures, responsivity to co-researchers and relationship quality (i.e., trust and familiarity). Continually renewed commitment and engagement of co-researchers is further strengthened by responsivity to co-researcher input and perceived personal and societal benefits. Often, the unique combination of contextual factors influence (though do not necessarily determine) teams’ structures and processes, and in-turn the extent to which the team is academic-facilitated or co-facilitated.

Figure 1.

Model describing how contextual factors and team-level factors and processes coalesce to foster and maintain inclusive research collaborations with individuals with intellectual disability.

Discussion

This study extends previous research by proposing relationships among previously established components of IR such as trust, changes in relationships over time and across multiple projects, specific strategies to support accessibility, benefits of IR, the importance of co-researchers’ motivation and interests and academic researchers’ values, and the impact of funder and university expectations and constraints (e.g., Di Lorito et al., 2017; The Learning Difficulties Research Team, 2006; McDonald, Conroy, Orlick, & Project ETHICS Expert Panel, 2017; McDonald & Stack, 2016; Nicolaidis et al., 2019; Stack & McDonald, 2018, 2014; White & Morgan, 2012). While we interviewed individuals from IR collaborations maintained through at least the duration of a single project, the proposed model can also be used to understand why some IR collaborations are not maintained. When model components are not well aligned (e.g., structures and processes do not match team members’ characteristics, values, access needs, and/or valued benefits), IR collaborations may not be effectively fostered and maintained. In addition, the absence of model components (e.g., accessibility, responsivity to co-researcher input, lack of familiarity among team members) may serve as a barrier to IR collaborations. In this discussion, we focus on describing the observed relationships among some of these components.

We observed that participants who described co-facilitated partnerships were typically members of research teams that work together across multiple projects, supporting the value of “[IR] careers rather than [IR] projects” (Kidd et al., 2018, p. 78). Below, we describe how contextual factors, including the duration of partnerships, influence teams’ structures and processes. We then use theory to pose explanations for how these components influence co-researchers’ perception of their involvement. We conclude by describing how these relationships may be applicable to researchers from diverse health-related fields interested in including people with intellectual disability in their research collaborations.

Two related contextual factors, funding and how the team is initiated, influence how teams collaborate. Many researchers working with diverse populations have discussed the tension of needing funding to establish research partnerships, but wanting to develop grant proposals with their research partners (Gustafson & Brunger, 2014; O’Brien et al., 2014). Teams that work together across multiple projects may more readily access opportunities to develop grant proposals together (e.g., Nicolaidis et al., 2011). For example, in this study, two long-standing research teams described making group decisions about what projects they would work on and when to apply for grants. When grants are collaboratively developed, it is possible co-researchers may feel a greater sense of ownership over the work and have greater influence on the team’s structure and processes, including their own roles. When these decisions are made in collaboration with co-researchers, rather than by academic researchers or as a consequence of contextual factors (e.g., lack of time, funding; Israel et al., 2008), co-researchers may feel that they are part of a co-facilitated team.

Working together over extended periods of time may also lead to changes in teams’ structures and processes. Many teams in this study described changing group processes and structures based on co-researchers’ feedback and their dynamic needs. As familiarity increases over time, team members were able to better identify access needs. Examples of changes included developing new rules for group discussion to support accessibility and adopting new structures that included small group work to help co-researchers feel more engaged and have greater choice over their role. It is likely that teams changed their structures and processes across and within projects, although our data do not speak to this. We draw upon causal agency theory and empowerment theories to offer two potential explanations for how changes in group structures and processes over time may influence co-researchers’ perceptions of their collaboration and involvement.

Causal agency theory describes the importance of contextual factors and experience in the development of “causality beliefs.” This theory suggests that when individuals see their actions change their environment, they are more likely to perceive themselves as an agent of change (Shogren et al., 2015). In this study, we observed that co-researchers who came from teams that had worked together across projects perceived themselves as causal agents contributing to co-facilitated teams. Causal agency theory suggests that these team members may have had repeated opportunities to see how their input influenced the research. We note that when co-researchers feel they are part of a co-facilitated team, within which they are a valued causal agent, they may be more likely to maintain engagement in research.

Theories describing the development of empowerment provide another possible explanation for how perceptions about academic-facilitated input shift over time. We observed that academic researchers often facilitated or led team processes for the purpose of accessibility. For example, academic researchers described supporting co-researcher input by designing activities to reduce cognitive demands or structuring group discussion to prompt co-researchers’ input. In both types of collaborations, teams were responsive to co-researcher input, as evidenced by the incorporation of their input into decisions. Similar to causal agency theory, theories about empowerment describe how when individuals see their behaviors lead to changes in their environment, over time, they are more likely to attribute these changes to their own actions and see themselves as agents of change (Zimmerman & Warschausky, 1998). Empowerment theories also describe how co-researchers may draw upon resources in the environment to enact change. These theories suggest that when academic researchers facilitate co-researchers’ input, co-researchers may begin to view this facilitation as a support or a resource that they can actively mobilize to take on and exert control (Pigg, 2002; Zimmerman & Warschausky, 1998), and therefore start to see themselves as co-facilitators.

This theoretically grounded explanation of changing co-researcher perceptions over long-term partnerships, in which co-researchers view academic researchers’ facilitation as a resource over time, is supported by our data. We observed that many co-researchers emphasized that academic researcher support was essential to their ability to be involved. For example, one co-researcher said that he has power when academic researchers “mak[e] sure that we have a say in what we are talking about . . . they come to us or . . . they talk to us . . . saying, ‘do you understand?’” This demonstrates how some co-researchers framed supports as a resource. It is possible that the perception of these supports as a resource strengthens through repeated experiences.

Our conjecture that co-researchers may frame supports as a resource is important when considering the relationship between accessibility and power in IR. Discussions of IR and related approaches often center on the extent to which co-researchers have power over the research process, including how the team works together (e.g., makes decisions, completes tasks) (e.g., Bigby et al., 2014; Nicolaidis et al., 2019; Stack & McDonald, 2014; Woelders, Abma, Visser, & Schipper, 2015). Academic facilitation of IR may inherently decrease the power of co-researchers, as academics may select and implement structures and processes without co-researchers’ input. When academics make decisions, even seemingly small ones about team processes and structures, their values and perspectives implicitly guide and shape the research process. This demonstrates the need for further exploration of the processes of power acquisition and perceived control when academic researchers facilitate access to IR. We begin to discuss this below with regard to knowledge production, but more research is needed to explore this tension.

Our findings suggest the importance of further inquiry regarding how research teams’ values, including their epistemological beliefs, intersect with access. In this study, all researchers’ values drove a commitment to accessibility as an ethical imperative. However, we observed that academic researchers held different beliefs about “to what” they ensured access—cognitive access to traditional research methods (e.g., specific methods) or social access to the knowledge production process. Throughout the literature on IR and related approaches, there are discussions about the implications of increasing accessibility by reducing data (Bigby et al., 2014) or, as described by some academic researchers in this study, holding back on theorizing (Walmsley & Johnson, 2003). These discussions point to a critical issue in IR regarding what is meant by “research.” Some scholars argue that rather than enhancing access to the traditional tools of academia, IR implores us to think beyond traditional approaches to knowledge production (Janes, 2016; Milner & Frawley, 2018; Walmsley & Johnson, 2003). In this study, we observed that while most co-researchers described using traditional research methods (e.g., focus groups, interviews), they did not highlight research training. Rather, both co-researchers and academic researchers emphasized how co-researchers’ experiences and existing skills helped them collaborate in knowledge production, in addition to supporting their performance of diverse (traditional and non-traditional) research methods. Thus, some participants in this sample described social access to knowledge production as equally, and sometimes more, important than cognitive access to traditional research methods.

Our proposed model can be used to consider how research teams’ values and specific characteristics of team members may drive methodological choices. For example, because many co-researchers perceived “learning” (typically about the content under study) as a personal benefit, some co-researchers may want to learn research skills because they enjoy learning, feel the skills are marketable, and/or feel a sense of pride acquiring a socially valued skill (Strnadova, Cumming, Knox, & Parmenter, 2014; Walmsley, 2001; White & Morgan, 2012). Alternatively, other inclusive researchers may perceive use of traditional research methods as reifying oppressive academic approaches (Janes, 2016; Zarb, 1992). Assessing the impact of traditional or nontraditional research methods on IR collaborations may be an important area of future research.

Our findings suggests that research teams’ values of inclusion can be operationalized through accessible structures and processes that are responsive to co-researchers’ individualized and dynamic support needs. Furthermore, co-researcher collaboration and involvement may be strengthened in long-term partnerships. Researchers already conducting stakeholder-engaged research with people without intellectual disability have a deep understanding of how to be responsive to individuals’ unique contexts and experiences and develop long-term partnerships with community members. Notably, our proposed model has some overlap with a logic model of CBPR (Belone et al., 2016; Wallerstein et al., 2008). Our model is more specific to work with people with intellectual disability by highlighting the necessity to attend to the intersections of access, team processes and structures, and individual characteristics of team members. Our model also suggests the importance of ensuring co-researchers perceive both personal and societal benefits; these benefits may need to be more concrete and immediate than “better health” or “equity.” Yet, both models describe a dynamic research system that is influenced by both team-level and contextual factors. Accordingly, we suggest many researchers may already be well equipped to incorporate individuals with intellectual disability in their stakeholder-engaged projects—even those not specifically attending to issues of disability. Truly inclusive research will be achieved when people with intellectual disability are included not only in “disability research” but also as partners in research relevant to the general population, such as civic life, criminal and immigrant justice, in addition to intersectional identity issues, such as those experienced by people with intellectual disability who are also ethnic minorities and/or lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ).

Limitations and Future Research

IR with individuals with intellectual disability is rare, making it difficult to recruit participants for this study. While this study benefited from rigorous in-depth interviews and analysis, it would be strengthened by a larger and more heterogeneous (i.e., race, gender) sample. Within our sample, we observed that only one co-researcher provided a “negative” story of IR. Examples of IR in which co-researchers felt they were not truly involved might differently inform the conceptual model. It is possible that positive stories were only shared due to social desirability, or that our sampling procedures may have been biased, as academic researchers may have been more likely to refer co-researchers who had continued involvement, suggesting positive or “successful” experiences. Future research may benefit from a recruitment approach that does not rely on referral by academic research partners. In this study, most co-researchers were 30 to 45 years old. Researchers may explore the transferability of this model to co-researchers at different life stages (e.g., young adults, children, older adults), who may have different experiences and support needs. As IR is an umbrella term for the range of ways in which individuals with intellectual disability are active contributors to research, we may have arrived at different conclusions had we recruited a sample that operated under a more homogeneous conceptual approach (e.g., CBPR, emancipatory research). Importantly, to validate this conceptual model, observational studies should evaluate IR teams across multiple contexts and over time to explore the proposed relationships among model components. As IR is a dynamic and complex process, understanding relationships among these components is essential to identifying the key ingredients that foster IR collaborations with co-researchers. Future research on this topic should be conducted using an IR approach to increase social validity and support people with intellectual disability to have a greater role in theorizing about their role in IR.

Conclusion

Key informant interviews with co-researchers and academic researchers informed a conceptual modeling describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations with individuals with intellectual disability. We propose the following: team-level factors, such as team members’ values, drive teams’ commitment to accessibility; and team’s values, members’ individual characteristics, and contextual factors influence the types of processes and structures teams adopt to ensure co-researcher collaboration. Ongoing commitment of co-researchers is maintained by perceived personal and societal benefits. We suggest that collaborating across multiple projects may support teams to adopt structures and processes that enable IR teams to be cofacilitated by academic researchers and co-researchers. This model may be utilized by researchers in diverse health-related fields to support inclusion of co-researchers with intellectual disability in wide-ranging research.

Supplemental Material

Table_S1 – Supplemental material for “That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability

Supplemental material, Table_S1 for “That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability by Ariel E. Schwartz, Jessica M. Kramer, Ellen S. Cohn and Katherine E. McDonald in Qualitative Health Research

Footnotes

Acknowledgements

We thank Brendan Durkin for his role developing data collection procedures and co-interviewing co-researchers. Elana Lerner assisted with data analysis. Thank you to all of the participants in this study.

Compliance With Ethical Standards

The authors of this article have complied with American Psychological Association (APA) ethical principles in their treatment of individuals participating in the research, program, or policy described in the article. The research has been approved by the Boston University Institutional Review Board.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Dudley Allen Sargent Research Fund (PI: Schwartz).

ORCID iD

Ariel E. Schwartz

Supplemental Material

Supplemental Material for this article is available online at . Please enter the article’s DOI, located at the top right hand corner of this article in the search bar, and click on the file folder icon to view.

Notes

Author Biographies

Ariel E. Schwartz, PhD, OTR/L, is a postdoctoral fellow at the Center for Psychiatric Rehabilitation at Boston University. This work was conducted as part of her dissertation research in the PhD Program in Rehabilitation Science at Boston University.

Jessica M. Kramer, PhD, OTR/L, is an associate professor at the University of Florida. At the time of this work, she was an associate professor at Boston University.

Ellen S. Cohn, ScD, OTR/L, FAOTA, is a clinical professor and Director of the Entry Level Occupational Therapy Doctoral program at Boston University.

Katherine E. McDonald, PhD, is professor and chair of the Department of Public Health at Syracuse University.

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Supplementary Material

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“That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability

Abstract

Keywords

Introduction

Method

Recruitment and Sampling

Participants

Researcher Positionality

Interview Guide and Procedures

Analysis

Triangulation interviews

Member reflections

Findings

“We are a significant part of this”: Team Members’ Characteristics Influence on IR Collaborations

“Be dynamic and figure out what’s working and what’s not working”: Making IR Accessible

“It is very important to me. I learned a lot of new things”: IR Collaborations are Maintained by Perceived Benefits

“There was trust, there was familiarity”: The Role of Relationships

Teams’ Processes and Structures Facilitate IR Collaborations

“They’re not the sort of people who’ve been hovered in by the trust 2 ”: The Impact of Contextual Factors

Proposed Model of IR Collaborations with Individuals with Intellectual Disability

Discussion

Limitations and Future Research

Conclusion

Supplemental Material

Table_S1 – Supplemental material for “That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability

Footnotes

Acknowledgements

Compliance With Ethical Standards

Declaration of Conflicting Interests

Funding

ORCID iD

Supplemental Material

Notes

Author Biographies

References

Supplementary Material

“They’re not the sort of people who’ve been hovered in by the trust²”: The Impact of Contextual Factors