Stitching Together a PAR Project: “Work Active”—Supporting the Journey to Work for People With an Intellectual Disability

Abstract

Critically reflecting on research practice can be an uncomfortable process for any researcher as you expose actions, and decision-making, reflect on some of the research assumptions you may have fallen into, and acknowledge your limitations. Yet, engaging in reflexive practice keeps us in check and is particularly important for researchers exploring the experiences of marginalization and oppression. This article presents our reflections on “Work Active,” a participatory action research (PAR) project that sought to improve employment outcomes for people with intellectual disability (ID). Although a great deal of literature suggests that the underlying intent of PAR is emancipatory through the mainstays of collaboration, inclusivity, and participation; however, there remain questions about whether emancipation can be truly achieved. We present our experiences of “stitching together” our service provider-led PAR project to reveal some of the challenges, points of tension, and our adaptions as we navigated the “curve balls” of undertaking a PAR project.

Introduction

We undertake research for many and varied reasons: We wish to understand our social worlds and the worlds of others better and to add to knowledge and use that knowledge to bring about social change. Researchers have typically been placed (or have placed themselves) at the center of the research endeavor, as the experts, problem solvers, and social change advocates (Cahill et al., 2010; Liamputtong, 2019; Mayan & Daum, 2014; Silverman & Patterson, 2021). A research methodology like participatory action research (PAR) challenges this researcher-centered approach by prioritizing and being responsive to the interests and needs of communities and groups. PAR has been discussed as an alternative to traditional social and scientific methods of research, by foregrounding the contexts of people’s lives, rather than relying on linear cause-and-effect perspectives and activities (Kral, 2014; McTaggart, 1997; Vallianatos, 2015). Indeed, a cursory glance at PAR literature reveals an abundance of studies, commentaries, and reflections that provide varying experiences and expectations of PAR as an empowering process (Cumming et al., 2014; Johnson et al., 2014), as life-changing (Buettgen et al., 2012; Nind, 2016), and ad inclusive (Bigby et al., 2014b; Walmsley et al., 2018).

Although scholars have highlighted the advantages of participatory approaches for research with people with intellectual disability (ID), researchers like Dorozenko et al. (2016), Walmsley and Johnson (2003), and Bigby et al. (2014a) noted potential tensions and challenges that require navigation. For example, researchers may be inclined to try to erase differences and treat co-researchers with ID the same as any new researcher (without ID; Conder et al., 2011; St John et al., 2018). Although challenges and tensions are understood to be commonplace in PAR projects (Gilbert, 2008, 2020; Grant et al., 2008), any problematic issues that emerge during the course of research can still provoke anxiety for the researcher. Nevertheless, Gilbert (2020) suggested that the positive and negative facets of any PAR experience should be valued; and that a discussion of these experiences can offer learning opportunities for what can be done differently, and the value for future research projects.

As novice PAR researchers, we relied initially on the “best PAR practice” steps as set out by Bigby et al. (2014b) to guide us, and as we progressed we noted that PAR was an evolving process—often a matter of things falling into place organically. The following is an account of how we stitched our version of PAR together. We trace some of the activities that we undertook and the decisions that we made in our research for the “Work Active” project, a service provider-led initiative to address the problem of employment outcomes for people with ID. Key aims of the Work Active project included the development of an internship (work placement) and tertiary teaching program to help develop job-specific skills and confidence for people with ID to enter and remain within the work force. In addition, the project aimed to develop resources that could be transferable to similar service providers in New Zealand. We present a reflective account of our expectations and undertaking of PAR, and our adaptions as we navigated the odd “curve balls” that research often throws. In the next sections, we briefly set out the context for the choice of methodology and provide insight into the impetus for the development of the Work Active project. Finally, we ask the inevitable question levied at PAR researchers—Can we say that this was an emancipatory process as we reflect on our actions, decisions, and findings?

PAR an Implement for Change?

As a research methodology, PAR has often been attributed with supporting and enabling a commitment to social justice, challenging societal disparities (Bradbury-Jones et al., 2018; Burstein et al., 2005), and assisting people and communities to produce reflective knowledge that enables them to make changes to their worlds (Conrad & Campbell, 2008; Martin, 1996). In addition, PAR has been employed to expose political structures used to disempower marginalized groups and to create circumstances so that such structures might be overhauled or changed (Mayan & Daum, 2014). At the heart of PAR is the collaboration between researchers, stakeholders, community, and participants (Higginbottom & Liamputtong, 2015), a “pooling of knowledge” for defining the problem and developing strategies to resolve the problem (Embregts et al., 2018). In this way, PAR can be educative (Embregts et al., 2018), empowering, and multidirectional (Johnson et al., 2014), offering opportunities for the researcher and the communities involved to create new insights, skills, and experiences (Higginbottom & Liamputtong, 2015). A key idea here is that all participants in the research are equally important as problem solvers, thinkers, and learners, taking an active role in the research process (Johnson et al., 2014; Nind, 2016). This means that community members are active subjects rather than passive objects in research that is done with them rather than research done on them; that it is an inclusive endeavor (Higginbottom & Liamputtong, 2015; Johnson et al., 2014).

Power sharing has been considered a central tenet of an inclusive research approach, recognizing that no one person holds a position of power overall, that the knowledge of each person is valued, and importantly, that all participants can learn from each other through the research activities (Northway, 1998). The concept of empowerment is often linked to PAR and other action/collaborative research models. However, empowerment has often been (re)presented as the researcher empowering or bestowing power (Northway, 1998). The problem here as Reid and Wallcraft (1992) noted is that the idea of “empowering” someone implies that power can only be bestowed by the powerful (for example, the researcher) to the less powerful (community members, participants, etc.), and this could be viewed as an exercise of power. Perhaps, another way to think about how power is experienced is that research per se does not necessarily result in the empowerment of others, since “no one can give power to another person, but they can stop taking their power away” (Reid and Wallcraft, 1992, p. 5). Moreover, people can establish or claim their power through the research process (Reid and Wallcraft, 1992). For example, a community group can set the agenda, participate in obtaining data and analyzing or contributing to the analysis of the data, as well as control the use and dissemination of the outcomes. This is particularly significant in research that involves people with ID. Conder et al. (2011) noted that it would make sense that those who are directly impacted by the outcomes of research should have input into setting the research agenda to obtain a research outcome that will be useful to their community or group, especially in the case of developing and planning local services for themselves and others (Abbott & McConkey, 2006).

The level of participation of people in PAR projects can vary greatly (Walmsley et al., 2018). This may require what Embregts et al. (2018) called a “balance” in practicing inclusivity in setting roles and expectations, and to avoid overburdening people in the research process. Bigby (2015) presented three broad models of inclusion often used in PAR studies which we found useful for deciding how we might shape our approach. The first is the advisory or reference group model in which people with ID are included in their capacity to act as advisors regarding research agendas, rather than directly participating in practical research activities such as undertaking data gathering and analysis (Bigby, 2015). The second model sets out to give leadership and control of research tasks and decision-making to people with ID. In this example, people with ID initiate and lead the research (Nind, 2016). The third model is a collaborative group approach that is characterized by the research group made up of people with and without ID, with all members sharing a mutual goal and agenda for their involvement (Bigby et al., 2014; Embregts et al., 2018). Importantly, driving all these research approaches is the need to gain “insider cultural knowledge” (Walmsley et al., 2018, p. 75).

Although a great deal of literature would suggest that the underlying intent of PAR is emancipatory through the mainstays of collaboration, inclusivity, and participation (Conder et al., 2011; St John et al., 2018), there remain questions whether emancipation can be truly achieved. Can we confidently claim that community participation/inclusion results in individuals feeling more emancipated? This is a question that is pertinent to research with people with ID, and something that we asked ourselves after our Work Active project. This article provides us with the opportunity to share our reflections as we present our experiences of “stitching together” our PAR-inspired/infused project. The next section of the article will provide a backdrop to the development of the Work Active initiative.

Background: Setting the Context for the Project

For more than 20 years successive New Zealand governments have declared a commitment to the inclusion and empowerment of people with disabilities. For example, the New Zealand Disability Strategy 2016 to 2026 articulated a vision of New Zealand as “a non-disabling society—a place where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen” (New Zealand Ministry of Social Development, & New Zealand Office for Disability Issues, 2016). One of the key outcome areas within this strategy is the development of a more inclusive education system, including tertiary education.

More recently, in 2019, the Reform of Vocational Education (RoVE) identified disabled learners as a priority learner group, highlighting that this learner population has been significantly underserved, marginalized, and largely excluded from the education system. This has impacted negatively on the quality of life for people with ID. As a part of the development work of RoVE, three priority learner groups were identified: Māori learners, Pacifica learners, and disabled learners. RoVE produced three reports—Te Rito (2021) reports, gathering insights from learners and teaching staff relative to the priority learner groups. These Te Rito (2021) reports have formed the basis for further discussions and work related to the development of a teaching and learning framework, providing some insights into the barriers to access and success for these priority learner groups. The lack of academic and employment pathways for some disabled learners is a significant finding in the Te Rito (2021) report. It could be argued this is particularly the case for learners with an ID.

Despite the existence of the New Zealand Disability 2016 to 2026 with a focus on creating a more inclusive education system, very little has changed for disabled people, particularly adults with intellectual disability. Ultimately, this has negatively impacted labor market participation and the quality of life of disabled people. Unlike the United Kingdom, New Zealand has a limited self-advocacy movement (Grant, 2015) that has some influential governmental sway in terms of policy-making and advisory structures. Organizations such as People First and The Personal Advocacy and Safeguarding Trust advocate for individuals primarily relating to inclusion, human rights, and quality of life. However, there do not appear to be specific forums for people with ID to represent their research interests to the government and in turn, lobby for change. Bigby et al. (2014a) noted that in Australia, self-advocates tended to be poorly represented on more generic disability advisory bodies.

Researchers leave little doubt that there is a link between poor representation/advocacy, a lack of education, and overrepresentation of unemployment levels for adults with a disability, specifically people with ID (Butcher & Wilton, 2008; Lysaght et al., 2017; McGlinchey et al., 2013). Not being employed leads to further social isolation, poverty, and poor health outcomes. The cumulative effect of this is that people with ID will experience a lower quality of life than their non-disabled peers. A comprehensive online survey was conducted by IHC New Zealand in 2017 to determine the current situation of people with ID. Survey respondents included people with ID, families, supporters, and sector workers. In addition to the survey, IHC ran focus groups for people with ID to provide the opportunity for qualitative inquiry into their experiences and views. Results suggested that people with ID continue to encounter barriers and do not receive adequate support to enter and remain within the workforce. In the area of education, responses indicated that there was a need for meaningful enhancement in the quality of education opportunities for people with ID. Moreover, to lift employability opportunities and outcomes and increase the quality of life for adults with an ID, the provision of “fit for purpose” tertiary education programs is paramount. As Grant (2015) has noted, this idea may not be new; nevertheless, it is often absent from career development strategies for adults with ID.

It is within this backdrop that a South Island, community-based disability support organization (NGO) providing diverse support services for people with learning disabilities and mental health issues, developed the initial ideas for the “Work Active” project. The focus of the project was to find ways to maximize sustainable employment outcomes for people with an ID. The service provider and service users jointly identified a need to develop a teaching and learning model that could be integrated into the service provider’s on-going services. The Work Active tertiary learning model is what Vila et al. (2007) referred to as ‘in situ training’—the acquisition of skills specific to the workplace, role, and tasks (p. 17). In New Zealand, very few tertiary learning opportunities are available for adults with an ID. The Work Active project proposed an approach to tertiary education to fill this gap, an approach that would suit the needs of this learner population, and enable a smoother pathway into employment. This kind of partnership model involving a tertiary education provider (TEP), an employer, and a disability support provider was considered key to ensuring good learning outcomes and sustainable employment outcomes.

The Research Design

A starting point for any research project is ensuring that there is a fit with the methodology, study focus, research questions, aims and objectives, the setting, and the epistemological positions of the researchers. We found that PAR ticked these boxes in terms of what we wanted to know and achieve, and that collaboratively we wanted to explore what might work toward achieving sustainable employment outcomes for people with ID. For author one, PAR sat comfortably alongside feminist and social constructionist epistemologies, valuing knowledge constructed through social interaction, experience and perception, and the context in which it is produced (Best, 2007). Indeed, action-oriented feminist research has not only been concerned with the taken-for-granted assumptions of who produces and who validates knowledge (Wilkinson, 2004), but also emphasizes actionable outcomes. In this way, issues of social justice and inequity are addressed through collaborative research practices that involve participants in research decision-making (Goessling, 2024,). Importantly for this research project, the core tenets of a feminist PAR approach, relationality and reflexivity, provided guidance to attend to issues of power and representation through the different stages of the research process (Goessling, 2024).

The social justice orientation underpinning PAR fits well with the ethos of the service provider (Authors 2 and 3), in which the service user is placed at the center. For example, in the daily activities of the service provider, there is a strong emphasis on collaboration in the co-creation of individual service user plans intending to maximize potential, confidence, and a sense of ownership for service users. Thus, we chose to make our project an action-oriented feminist PAR approach based on establishing local partnerships to co-create knowledge (Butcher, 2021). This required a reflexive analysis of processes and relationships of knowledge production, to reveal how particular conclusions were reached (Butcher, 2021; Glassman & Erdem, 2014). Although as a team we had quite different interests and life experiences, nevertheless, we shared a commitment to achieve change and work toward sustainable employment outcomes for people with ID.

We chose to use a collaborative (or cooperative) approach for our PAR study. A key activity for this approach was putting together an advisory group to represent stakeholder interests. The stakeholders in the Work Active project included: service learners, the teaching and employment sectors of the service provider, host employers, and tertiary education provider (TEP). Advisory group members included: the general manager of the service provider with experience in senior management across the health and disability sector, the service provider teaching coordinator who worked closely with service learners in identifying needs for the project and the development of the teaching modules, the employment support coordinator who represented the interests of host employers and the service provider employment support staff, and an academic researcher from a TEP. The advisory group would meet at regular intervals throughout the project, particularly at the beginning stages as we worked through who would do what in terms of tasks, setting timelines, recruitment strategies, data collection, as well as discussing content for the teaching program and internships. Meetings were organized at certain junctures of the teaching modules, internships, and data collection to enable the group to review and reflect on the aims of the inquiry and agree on actions. For example, the group discussions were an opportunity to present learner and employer feedback, to review, reflect, and revise methods of data collection and analysis, teaching modules, and internships, and to discuss the ongoing progress of the project, and to develop recommendations.

We ran the teaching modules (classroom work) and internships concurrently with the research data collection and analysis. Classroom work and internships were tweaked/reworked as we gathered data and reflected on findings from our initial focus groups (learners and host employers), at the beginning, midpoint, and end of the study. This was made possible by the inductive and emergent process of qualitative data analysis that allowed us to follow how participants developed an understanding of an issue and worked toward a solution (Silverman & Patterson, 2021). The final learners, employers, and service providers focus groups enabled us to build a collective understanding and to discuss, reflect, and develop recommendations on the teaching modules and internships.

Recruitment Into the Project

Our research participants included people with and without ID: six people with ID (service learners), five host employers (offering internships), nine people working for the service provider (support staff from teaching and employment sectors) in addition to the four advisory group members. Each participant brought unique skills and experiences to the project. The selection and recruitment of learners to take part in the Work Active project was made by the teaching support and employment support coordinators. Selection criteria were based on individual motivation for permanent employment, literacy support needs, and interest in participating in the teaching modules and internships. Author 3 met with potential participants for the learner’s group to explain the project, providing a participant information sheet and consent form to take home. All potential participants were able to read; however, Author 3 also read through the information again with learners several days later to obtain their written consent to participate, and to answer any questions they might have. Information sheets were also provided to next of kin and caregivers if there were concerns regarding the project and activities. Host employers and service user staff were contacted by the TEP researcher (Author 1) and provided with a participant information sheet and consent form, detailing the Work Active project, research aims, and research activities. Participants had the opportunity to ask questions prior to consenting and also prior to and after focus groups. All participants were informed that they could withdraw from the study at any time. The Research Ethics Committee for the TEP granted ethical approval for the study. It is worth noting that in a study that includes people with ID, specific attention was given to issues of consent and safety.

Data Collection

The role of data collection and analysis in PAR is twofold: to develop an understanding of the phenomenon being studied and to provide recommendations—to inform action (MacDonald, 2012). We used a fully qualitative approach to this PAR project which meant that data collection was purposive, and methods were chosen based on the comfort and practicality for all participants, to enable us to generate the kind of data needed for the project, and importantly, to achieve a level of inclusion for all participants in the key activities of reflection and action (Vallianatos, 2015). We chose to use focus groups, observation, and role play as key data collection methods.

Focus Groups

Focus groups are frequently used in PAR projects, enabling participants to communicate and reflect on a topic or issue as a group (McTaggart, 1997). The opportunity for focus group members to collectively remember and construct experiences has been noted by Kitzinger (1994) as providing the researcher an insight into “their language and concepts, their frameworks for understanding the world” (p. 108). Furthermore, feminist researchers have noted the potential for focus groups to reduce the power imbalance between researchers and participants, by removing the researcher’s “authoritative voice” (Hesse-Biber & Leavy, 2010; Wilkinson, 2004). The structure of a focus group encourages group sharing of views and experiences (Liamputtong, 2019) as well as providing a sense of peer group support and reassurance (Kitzinger, 1994; Llewellyn, 2009). This is particularly pertinent for “those who have little or no societal voice” (Rubin & Rubin, 1995, p. 36). Our decision to use this data collection method was also guided by the fact that focus groups were a good “fit” with the cultural ethos of the service provider (Grant et al., 2019). Focus groups were part of the daily activities of the service provider in facilitating collective problem-solving and generally discussing weekly events and activities.

In total, five focus group sessions were undertaken, three with learners (from the service provider), two with host employers (offering the internships), and one focus group with support staff from the service provider (including staff from the employment and teaching sectors). The focus groups conducted with the host employers were run 2 weeks after the commencement of the teaching program and internships and after teaching modules and internships. Focus groups with learners took place 2 weeks into the teaching program and internships, at the halfway stage, and after the Work Active project. The focus group with support staff from the service provider took place after the project. The learners’ focus groups were co-facilitated by the TEP researcher and the teaching program coordinator (Authors 1 and 3). This was a pragmatic decision, in that, the TEP researcher provided an etic perspective for data collection and analysis, while the teaching coordinator drew on existing knowledge and relationships with learners to give an emic perspective (Daley et al., 2010). The employer’s focus group and the service provider’s focus group were facilitated by the TEP researcher (Author 1). All focus groups lasted between 1.5 and 2 hours, and food and beverages were provided for group members to “graze” on during the focus group sessions.

Although focus groups can provide “a powerful collective voice” (Bollard, 2003), researchers have noted that there can be some limitations when using focus groups with people with ID (Booth & Booth, 1996; Walmsley & Johnson, 2003). Participation requires a reasonable ability to communicate ideas to group members, and for some people with ID, this can be a potential challenge (Booth & Booth, 1996; Kaehne & O’Connell, 2010). The group members in our research were able to take part fully in the focus group sessions, taking turns to present their ideas and to respond to each other. Activities such as video examples of the role-plays undertaken in-class exercises, Facebook posts, and photographs learners had taken on their tablets of the TEP campus and their internships were used in group discussion. Gates and Waight (2007) noted that using a number of communication methods for people with mild and moderate learning disabilities in focus groups was invaluable in assisting participants in expressing their views and experiences, also that the location of the focus groups can be an important factor. The learners’ focus was conducted in their classroom on the TEP campus. This was both a familiar and informal space that had been personalized by learners, and used for teaching and group activities.

The learner focus groups were key for the development of the Work Active program, so, we wanted these to work well. We began each of the learner focus groups with a group brain-storming session, in which everyone was encouraged to suggest topics/themes for the group to reflect on and discuss. We wanted discussions to be a “collaborative” activity in which discussion topics were decided collectively and not simply presented by the facilitators (Kaehne & O’Connell, 2010). We avoided the use of predetermined questions and allowed discussion to develop organically. The use of media such as videos, photographs, and Facebook posts were good stimuli for discussion. Interestingly, we found the learners’ group to be proactive in deciding and driving group discussions, raising pertinent and unanticipated discussion topics (Grant et al., 2019). For example, learners raised the point that internships should be meaningful, one learner suggested “they were doing the same jobs as everyone else,” that positions or tasks were not something simply created just for them, for the purpose of the internship, but to be the same as other workers (Grant et al., 2019). This issue/topic was then raised in the focus group with host employers and at the advisory group.

Field Observation

Field or participant observation was also used to collect data, and like focus groups, is commonly employed in PAR (MacDonald, 2012; Marshall & Rossman, 2011). Also generating valuable data, both research methods, proved useful for checking tentative conclusions and ideas as they emerged from data analysis. Furthermore, field observation provides the researcher with the opportunity to see research participants inhabiting their social settings (MacDonald, 2012; Mulhall, 2003). Spradley (1980) noted that it is quite common for a researcher to be immersed or participate within a setting while undertaking the research and observing the setting. Thus, the researcher engages in the activities appropriate to the social setting while observing participants’ actions, and inhabitants of the physical environment (Silverman & Patterson, 2021). In the Work Active project, the teaching program coordinator, undertook fieldwork, observing social behavior and actions as they played out within the classroom and internship settings. Some field observations were used to generate discussion within focus groups and were key in the critical reflection process for the development of the teaching model resources and recommendations.

The Teaching Program: Classroom Modules and Internships

The teaching program was organized into four class-based modules, and comprised of two morning and two afternoon sessions per week. The 4 modules included content on preparing for work; the work day; the work environment; and career pathways. The module topics had been identified by learners as areas they wanted to know more about and practice. In each module, learners explored topics and activities and reflected on experiences associated with internships. For example, in the “work day” module, learners reflected on the routines of each internship workplace, and took part in role-plays to help to identify key aspects of their workplace routines. Topics of workplace routines that were identified for discussion and reflection, included things like work breaks (lunch and tea), toilet breaks, and the use of technology and mobile phones at work. Learners also brainstormed the meaning and relevance of job-specific skills and reviewed video footage taken of their workplaces.

The teaching program (classroom component) took place in an on-campus teaching room of the TEP. The teaching modules and activities were based on an experiential learning approach that aimed to promote meaningful and effective learning in which learners were encouraged to reflect on relevant life and learning experiences and proceed to apply their understanding and learning to different contexts (Andresen et al., 2020; Wise, 2017). Key to this approach is the use of activities such as role-play, visualizations, simulations, and games. Each learner in the project received an iPad at the beginning of the program. A group Facebook page was created as a resource and proved to be useful for learners, facilitators, and tutors to communicate, and a place to share recordings and pictures from the daily program activities. Learners recorded their role-play exercises and posted these on the group’s Facebook page. These role-play exercises would result from discussions of internship experiences and were key to the experiential learning approach. For example, a role-play used in class explored “how to deal with a grumpy customer,” in this scenario, learners were able to playout both roles reflect on their reaction and engage in problem-solving (Grant et al., 2019). The field observations of internships helped to raise areas to explore/develop through the role-play learning process.

The internships were a central component of the Work Active Program. At the beginning of the project, attempts were made to match internships with the employment aspirations of each learner. However, this was not always possible since there were a minimal number of host employers available. Internships involved 4 to 5 hours per day, 2 to 3 days per week, over the 12-week period of the Work Active program. The internships aimed to provide learners with the opportunity to develop an understanding and experience of a work environment and culture; to undertake workplace-specific tasks; and to develop work habits and a work ethic fitting their workplace. Host employers were tasked to provide learners with the opportunity to experience a work environment that would be the same for all workers. To facilitate integration into the internship workplace, learners were provided with support/guidance from a support worker from the service provider to help in navigating the internship work environment.

Reflections: What We Got From PAR

Critically reflecting on research practice can be an uncomfortable process for any researcher as you reflect on your actions, questioning some of the research assumptions you may have fallen into, and acknowledging your limitations (Gustafson & Brunger, 2014; Northway, 1998; Oliver, 1997). As Northway (2000) has noted, researchers can bring their values and view of the world that have been formed by a variety of social and historical factors, into their work. Therefore, reflexivity nudges us to recognize the importance of revealing and discussing researcher positionality through the research process (Northway, 1998; Schön, 1983). For writers like Vernon (1997), reflexive practice is particularly critical when researching experiences of marginalization or oppression. Similarly, for Dorozenko et al. (2016), reflexivity is viewed as an active, ongoing process of checking in at every stage of the research to gauge values, motivations, actions, and decisions. In the Work Active project, we tried to ensure that we were transparent in our decisions and activities, to discuss (within the advisory group) issues and/or dilemmas as they arose, and how our decisions and actions might inform/influence any change or recommendations for the program and internships.

As a research strategy, PAR enabled us as a group to take action and reflect on issues of pressing concern for people with ID. On our PAR journey we encountered a number of challenges and points of tension, (some we expected, and some emerged as the project was underway), nevertheless, we accepted that all challenges and “surprises” were simply part of the PAR experience, and an integral part of a process to effect change. The following sections present snapshots of our PAR experience.

The TEP Setting and “Being a Student”

The decision to locate the class-based learning within a TEP setting turned out to have an important impact. The teaching modules took place in a classroom within a central building on the TEP campus. In the past, training modules and courses had generally taken place in the teaching rooms belonging to the service provider. Learners discussed the TEP setting as being a valuable aspect of the Work Active program for them. They discussed feeling comfortable “inhabit” university spaces such as libraries, cafes, student study areas, and so on; to mingle with university students and generally participate in university life. For Gadow and MacDonald (2018), being part of university life for learners with disabilities can lead to skills needed for success in adult life. For example, scholars have suggested that learners are able to achieve increased self-confidence, and self-determination, alongside the potential to increase social networks and improve employment outcomes as a result of being able to participate within university settings (Butler et al., 2016; Gadow and MacDonald, 2018; Hart et al., 2010). Throughout the 12-week program on campus, Work Active learners were frequently observed using these TEP spaces before and after classroom modules as well as during class breaks, and frequently referred to themselves as ‘students.’

Tablets were provided to learners at the commencement of the teaching modules for their classroom work and also to help in recording their journey through the Work Active project; creating a diary of images and written reflections. All learners were digitally literate to varying degrees, and the closed Facebook group page proved to be a central port for communication regarding program issues and activities; a space for informal dialogue to explore issues as they arose within internships. Having all class-tasks in digital format encouraged consistency and progression in their digital skills and learning. Learners worked on the same learning platforms and software available within the TEP context, making it easy to access and use TEP resources, thus affirming for learners their student status.

Participation in the Work Active project provided the opportunity for the TEP to create two undergraduate student internships. The practicum part of these TEP internships included tutoring experience for the undergraduate student interns in the Work Active class-based modules alongside the academic requirements for the internships. The TEP interns built supportive relationships with the Work Active learners, helping to guide and introduce learners to university culture. Furthermore, for students without disability, learning alongside a peer with an intellectual disability has also been shown to improve the social understanding of disability among students (Gadow & MacDonald, 2018; Hart et al., 2010).

Class Reflection and “My Day”

The class-based reflection process and activities such as role-play and journaling “My Day” helped learners to reflect on and make sense of a workplace (internship) incident or interaction. The classroom-based reflection activities enabled learners to share internship work experiences and provide feedback in group discussions on what they considered to be working well and what was not in relation to their internships and class-based modules. These insights were fed back to the advisory group and also used to drive focus group discussions. The class reflections were described by learners as, “helping you to think about the day.”

Learners were also encouraged to think about things that may impact on their performance and general experience of their internship such as personal issues relating to family, home life, relationships, and so on. The completion of “My Day” diary was a key part of this reflection and referred to by learners as school work and also personal learning, whereby they were able to unpack and make sense of an incident, remark, or interaction. Hens and Dunphy (2022) noted that historically, people with ID have lacked the support to undertake self-reflection and assessment in relation to their experiences with the services they access. Hens and Dunphy (2022) used diaries as one method of data collection in their PAR study of a dance movement program for people with ID and found that though diary entries may vary in terms of communication and literary skills, participants would use their diaries to reflect on key elements of their program sessions. Similarly, the Work Active learners took the opportunity to use their “My Day” diary to record what had been important to them that day and engage in problem-solving and reflection in relation to their internship or classroom teaching.

“Job Ready”

As we had expected, being “job ready” was a significant theme across all focus group data (Grant et al., 2019). Host employers noted that in addition to job-specific tasks and the general requirements and criteria for each of their workplaces, they looked for what individual qualities potential employees may bring to the job and workplace. They saw their role as employers as having a “duty of care.” This concept was used by host employers to define and direct their roles in relation to supervising internships and preparing learners for employment. Ensuring “job readiness” was considered central to this concept of “duty of care.” The notion of “place and train” was noted by Butcher and Wilton (2008) as a key element within work placements, in which employers aimed to provide participants with both task-oriented and “soft” skills that they considered necessary for competitive employment, a logic that contrasts with the philosophy of sheltered workshops (Galer, 2014; McGlinchey et al., 2013; Tøssebro & Olsen, 2020).

One of the key determinants for “job readiness” for the host employers, was time spent or immersion in the workplace—the hours per week spent in internships. They considered the time spent in the workplace context a significant factor for workplace assimilation, and to learn the necessary workplace tasks and “soft” skills. The host employers recommended a revision of length/duration and hours per day/per week of the internships to facilitate the immersion of each learner intern. In addition, employers recommended that the Work Active learners need to become familiar with what part-time and full-time work looks like to become “work ready.” However, research suggests that real paid employment is rarely full-time for people with ID (Butcher & Wilton, 2008; McGlinchey et al., 2013) with many people with ID occupying part-time, casual/temporary positions (McGlinchey et al., 2013; Tøssebro & Olsen, 2020). Although host employers cite the need for “immersion” into the workplace through longer hours to reach “job ready,” this often is not practical with local employers unable to offer full-time positions and training support, or people with ID unable to sustain a full day at work (Butcher & Wilton, 2008).

For learners, being “job ready” was described in terms of “soft” skills, of being prepared for job interviews, having an understanding of workplace routines, tasks, and behavior, being able to negotiate multiple tasks and understand directions, and managing their own stress levels in the workplace. A couple of learners noted that their level of confidence and motivation to move into paid work had increased after participating in the program’s class-based modules and internship. They noted that they had reached a point of readiness for paid work. Other learners noted that the Work Active program had enabled them to step outside their comfort zone by undertaking internships in a workplace not on their list of preferred jobs. One learner stated that being part of the Work Active program had helped them to realize that they were simply not “job ready,” describing their internship experience as tougher than they had expected, highlighting some things that they will need to work on further before undertaking paid work in the future.

Learners commented that the internships introduced them to what they described as “proper work,” which required them to become familiar with work schedules and the physicality of working. To be “job ready” or to be a paid worker was also expressed in terms of self-responsibility, the ability to manage workplace expectations, being accountable to colleagues and employers, and the realization that as members of a team, others would rely on them. Research suggests that being employed is one of the most valued social roles in Western societies, a role that has not been made easily available for most people with ID (Lysaght et al., 2017; Voermans et al., 2021). Nevertheless, as Voermans et al. (2021) noted, people with ID want the same things in life, have the same needs, and want to fulfill the same responsibilities as everyone else, and work is perceived as the means to achieve these things. Moreover, people with ID perceive employment as a crucial part of their community participation, as a source of social contacts, and way to experience a sense of being valued (Lysaght et al., 2017). For Work Active learners, participation in paid work created social value and a sense of achievement in being able to participate within socially complex and competitive work environments. They also recognized the need to be ready for those environments so as not to feel dependent in relation to others. The program provided a point by which they could measure their “Job readiness.”

Tensions: What Would We Do Differently?

The tensions that we encountered along the way are important lessons for our future use of PAR. For example, to revisit how we conceived inclusivity and enacted collaboration through collective decision-making in developing project aims and recommendations and undertaking the research. Consultation or collaborative decision-making is highlighted in PAR literature as central for participatory research to work well (Embregts et al., 2018). Although we considered ourselves as being open, responsive, and consultative, on reflection it is clear that we still needed to confer more broadly with all key stakeholders. Indeed, “communication” was a significant theme that had emerged across focus group data. For example, clear, transparent communication and consultation among/across stakeholders was frequently discussed by both service provider staff and host employers in relation to the Work Active program succeeding. Host employers highlighted the value of being more involved in the process of developing the teaching (class-based) modules. The idea here is that more involvement in this area would help host employers increase their knowledge of learners’ capabilities and in turn help toward informing and managing internship expectations. Although host employers were provided with an overview of teaching modules at the beginning of the project, they were curious about the content and fit of these modules with the internships, and suggested that their input into the development of content might help toward strengthening the relevance and integration of teaching content for the internship workplace setting.

Although we had attempted to consult and represent the interests of all stakeholder groups via the advisory group throughout the stages of the PAR project, we could have done better. Host employers were represented on the advisory group by the employment support coordinator for pragmatic reasons relating to host employers being unavailable for meetings. Communication between the employment support sector and host employers tended to be sporadic and their representation in the advisory group ceased when the employment coordinator resigned their position after the project was underway. The general manager of the service provider stepped into this representative role for the remainder of the project. Host employers were kept in the loop regarding the project when the teaching coordinator made internship visits and in focus group discussions. However, without representation in the advisory group, host employers were not directly involved in specific discussions of content tweaks to the class-based modules or involved in the reflection process undertaken by the advisory group as the project progressed.

In a collaborative approach, the membership of the advisory group is often discussed as a key component for succeeding with project aims and goals (Bigby et al., 2014b; Buettgen et al., 2012). However, it is worth noting that although the idea of involvement of all stakeholders in all stages of a project can be expected or assumed, in practice, the scope and volume of resources required to do so can become an issue. For example, time, money, and commitment requirements for people with ID, host employers, TEP representatives, interns and administration, academics, and service provider personnel impacted the ability for all stakeholders to be fully involved. We needed to choose a pragmatic version of inclusion that enabled us to undertake the project within our timeline and budgetary limits. Walmsley and Johnson (2003), have stated that outcomes of research undertaken with people with ID, should further the interests of people with ID. It was this intention that underpinned our research approach and agenda, along with our enthusiasm (and sense of urgency) to develop a tertiary teaching program and internship to achieve sustainable employment outcomes for people with ID.

Contemporary research methods relating to adults with ID advocate an inclusive approach. Although there have been considerable developments in this area of disability studies over the last 20 years, there is still work required for this approach to be further embedded in research relating to adults with ID (Strnadová & Cumming, 2014). An inclusive approach is one that is premised on a shift of power to enable the lived experience of adults with ID to inform all facets of the research process. It represents a complimentary addition to PAR methodology. There are a number of benefits to this approach, as well as some inherent challenges (Bigby et al., 2014; Fraser-Barbour et al., 2023; St John et al., 2018; Strnadová & Cumming, 2014). First and foremost, it enables co-researchers with intellectual disability to function as experts on the lived experience of individuals with intellectual disability, thus creating a “bridge to other worlds” (St John et al., 2018, p. 2). This offers insights into the lives of adults with intellectual disability not previously achieved. Indeed, Fraser-Barbour et al. (2023) found that the involvement of researchers with intellectual disability shifted the team perceptions about research in ways that would not have been possible were it not for the involvement of researchers with an intellectual disability. Moreover, this approach can help address the power differential between researchers and participants, in particular, the experiences of individuals in marginalized populations (St John et al., 2018, p. 2). In addition, the unique insights gained from co-researchers with ID can provide the opportunity to expand on questions in novel ways (St John et al., 2018, p. 10). For example, a co-researcher in a study by St John et al. (2018) expanded on questions related to a participant’s living situation by asking specific questions related to the support provided to participate in cooking meals and attending events.

Like many researchers, we noted that inclusion is an interesting and yet somewhat “slippery” concept in relation to PAR practice (Embregts et al., 2018; Walmsley et al., 2018). How do we account for the variations of inclusivity in PAR activities and practice? Our own experience was based on the idea of furthering the interests of learners/people with ID, in that the research problem is owned by people with ID, and to promote and support change. Notably, an inclusive approach in which people are part of the process of researching issues that are relevant to them provides a way to be part of the process of translating research words into action and take back power in their own lives (Johnson et al., 2014; Walmsley & Johnson, 2003). Researchers have noted that there are certain key elements required to ensure the participation of co-researchers with an ID contribute in meaningful ways that add value to the research process (Embregts et al., 2018). This includes individualized research preparation, skill development and training prior to participation in the project, together with support from the research team throughout the project (Fraser-Barbour et al., 2023; St John et al., 2018). The approach taken by St John et al. (2018) included a training manual that was written in accessible language with pictorial representations. This consisted of detailed information on the project aims, roles of the researchers and co-researchers, together with interview skills and confidentiality procedures (St John et al., 2018).

Having the right supports in place and endeavoring to ensure role clarity among the research team is crucial to protect the integrity and authenticity of the contributions made by co-researchers with ID (Bigby et al., 2014). However, there are some inherent challenges in this approach. This includes difficulty in accommodating the wide spectrum of ability levels exhibited by adults with ID who are wanting to participate in research (Bigby et al., 2014). As mentioned, the issue of a power differential between co-researchers with an ID and non-disabled research staff is a challenge (Bigby et al., 2014; St John et al., 2018). One way of alleviating this is to ensure co-researchers are tangibly involved in the research, and that research staff do not encroach on their assigned roles (St John et al., 2018). Also, there are issues arising from the difficulty with recruiting co-researchers, together with challenges of time, resources and personnel (St John et al., 2018). While the Work Active study did not incorporate co-researchers with ID, we acknowledge this is the ideal in PAR of this type. Indeed, this approach is both feasible and meaningful with the right resources and approach.

Conclusion

Disability researchers such as Bigby and Frawley (2010) and Dorozenko et al. (2016) have noted that often unknowingly researchers can run the risk of becoming accomplices in the further marginalization of people with an ID. Similarly, Oliver (1997) suggested that critical self-reflection or a high level of self-awareness is necessary when doing disability research to avoid setting up the unequal power relations that have arisen not only in traditional disability research studies but also in wider society. With this in mind, we were cautious to make sure that the needs of service learners were driving our decision-making in relation to the development of the Work Active project. Social inclusion is an overarching goal of the service provider and is built into the ethos and practice of the organization, to support people with ID into mainstream activities such as education and employment, and to ensure that they have the right to participate and have a voice in any activities or decisions that may impact their lives and be able to enjoy the benefits of that participation.

In PAR, collaboration is often discussed in terms of providing equal value and attention to each member’s contributions to the process. This said, collaboration can vary from project to project. The aims and questions for this project required us to be guided by the lived experience of the people with ID and to be informed by their “expertise” during stages of review and reflection of the Work Active program and internships (Grant et al., 2019). At first, the predetermined aims of the “Work Active” project seemed at odds with the principles of PAR. The funding application in which the aims for the project were hurriedly set out by the service provider to meet submission deadlines and at first appeared to take the collaborative problem solving out of the equation. However, rather than worry about fashioning PAR in its purest form, we focused on creating opportunities for stakeholders: the service learners, service provider staff, and host employers to make decisions, participate and exert control wherever possible in developing the teaching/learning modules, how internships could be organized and what they should entail, and how the classroom modules could be integrated into the on-going services of the service provider. Internships and classroom modules were tweaked as we received feedback from focus groups. In this way, the expertise, skills, perspectives, and knowledge of people with ID, as well as host employers and service provider staff were incorporated as the project progressed, and outcome recommendations were developed.

Like many other researchers, our experience of PAR revealed both challenges and points of tension as the project unfolded. We had predicted some of these, such as difficulty in enrolling employers into the project, however, some we had not. As we reflect on our experience of PAR, we see that these challenges were key for our learning and important lessons to take with us into our future use of PAR.