Co-Creating Authentic VR Stories with Young Adults with Disabilities: Why Does This Matter in Transformative Research?

Abstract

Background: The use of creative methods, including immersive digital media such as virtual reality (VR), has grown in popularity over the past decade. At the same time, the power of co-creation within transformative research has also strengthened. Together, co-creation and digital immersive methods offer the potential for the intended audience, including decision-makers, to deeply engage with the information communicated through focused immersion in people’s stories and familiar local settings. Method/Reflections: In this article, the process of co-creation through a digital VR storytelling approach is discussed and reflected upon from the perspectives of co-creators from regional cities and towns across Australia. Our team included three young adults with disabilities, an academic researcher with a disability, and an independent researcher. This includes 1. presenting an overview of co-creation itself as both an ethos and method; 2. describing our experiences of co-creation using online storyboarding and script-writing workshops to portray the reality of local community experiences, and re-imagining what an inclusive community would look like; 3. reflecting on our completed stories made into VR short films and their potential to impact decision-making to improve urban and regional planning and design; and 4. discussing reflections and insights into the challenges, benefits, and key considerations for applying co-creation and VR storytelling in research and public planning engagement.

1. Introduction

Situated within the transformative research paradigm, co-research methods are gaining significant attention and traction in the research literature (Benz et al. 2024; Labattaglia et al. 2023; Mertens 2010). While an evolving approach and mode of inquiry, a crucial element of co-research is that the participants are co-contributors and co-investigators in the research project, including research outputs (Thorburn et al. 2024). Centring the voices of marginalised people and groups as co-researchers for social justice is a key ethos of the transformative research paradigm, as outlined by the foundational scholar Mertens (2007, 2010). How this can be genuinely achieved has been a growing focus in methodological discourse and applied research.

We also acknowledge there are many overlapping terms used in participatory-oriented research and policy that centre the voices of people with disabilities. In our project, we specifically use the terms co-research as the methodology that aligns with Mertens’s (2007) framework, and co-creation as the collaborative creative process to co-produce educational outputs utilising lived knowledges, narratives, and/or experiences (Lippke and Anand Kumar 2025).

Another way that co-creators are identified in the literature is the partnership between academic and non-academic partners. Academic partners have expertise, knowledge and resources in research design and academia, including methodology, academic standards, ethics, and safeguards. In contrast, non-academic partners have expertise, knowledge and insight through their own experience and how this knowledge can contribute to the betterment of that community and society (Clifton et al. 2025; Thorburn et al. 2024). Through the collaboration of academic and non-academic partners, a deeper degree of reflexivity, perspectives and knowledge are integrated to transform research outcomes into actionable change (Fraser-Barbour et al. 2025; Labattaglia et al. 2023).

This article contributes to the growing literature on participatory methods with people with disabilities through an applied project in which researchers and young adults with disabilities collaborate as co-researchers and co-creators to produce stories for change using virtual reality (VR) films. Through the combination of storytelling and digital immersive methods, we aspire to convey the lived realities and reimagined experiences of people with disabilities to advocate for transformative change.

1.1. Project Context

The Stories for Change research activity presented in this article was part of Stage 2 of a four-year Planning Inclusive Communities research project. The idea for this research activity emerged from Stage 1 data insights and voices from participants (which involved 125 people, 97 participants from Stage 1a and 28 participants from Stage 1b—Stafford et al. 2023, 2024b). Using an interpretive research approach with Charmaz’s constructivist grounded theory analytic framework, five elements of the makings of inclusive communities were identified. Alongside these five elements was the emergent Framework of Change for planning inclusive communities, comprising three key change areas: 1. Inclusive Urban Planning and Design, 2. Inclusive Urban Governance, 3. Education and Leadership (see Stafford et al. 2023, 2024b; Stafford and Novacevski 2026).

Stage 2’s aims were to help implement and translate the makings and framework into practice by building capacity and knowledge—a need identified from Stage 1. This was considered important to the research, as translating findings into practice is often not effectively realised in planning and other built environment disciplines (Hope and Timmel 2014; Baldwin and Stafford 2019). Stories for Change was one of two key research activities in Stage 2 to help build capacity and understanding. The other research activity was forming a Community of Practice of Planners to help translate findings into a knowledge and practice guide for planners (see article in this Special Issue and Stafford et al. 2024a, 2025).

The Stories for Change research activity produced three digital stories co-created and narrated by the three co-researchers—young adults withdisabilities—through phases of storyboarding, storytelling, collective decision-making, and narration of virtual reality (VR) short films. There was also a collective-call-to-action film produced that aims to build understanding within the urban and regional planning profession.

1.2. Article Outline

In this article, we explore co-research and the ethos of co-creation through digital stories from the perspectives of a team of co-creators—one academic researcher, one former academic researcher now independent, and three non-academic researchers—who are young adults with disabilities. An outline of our research design and reflective process will follow a summary of the current literature surrounding co-research and co-creation with digital immersive media. We then present our research design and process before reflecting on the experiences of co-creation with digital immersive mediums. Using methodological reflexivity, we explored how the experience felt for us, what worked, what did not, and what we learnt.

2. Literature Review: Co-Research as an Ethos and a Method

2.1. Co-Research as a Methodology

The co-research methodology’s values and strengths are grounded in its commitment to equity, inclusion, social justice, and change-making at both individual and societal levels (Mertens 2007, 2010). The active involvement of individuals and communities in addressing needs and creating actionable solutions has been a practice within community planning and development for decades, as well as in participatory research (Benz et al. 2024). Through direct involvement and genuine engagement, individuals and communities become active agents, partners and co-creators in the decision-making and design process (Thorburn et al. 2024). To maximise the impact towards actionable change, a foundation of trust and understanding becomes essential when considering the effectiveness of the product and research outcomes (Kulmala et al. 2024). Additionally, the inclusion of co-creator-specific outcomes, such as increased capacity, agency, empowerment, confidence, and satisfaction, needs to be equally recognised among these same outputs (Labattaglia et al. 2023).

Co-research situated in the transformative paradigm has the potential to shift the way knowledge is produced by deliberately engaging with groups traditionally marginalised in research, policy development and the decisions that impact them (Mertens 2010). When provided with the resources, opportunity, and a platform, previously excluded voices and perspectives become present, amplified, and realised to transform new forms of knowledge into actionable policy change (Benz et al. 2024; Labattaglia et al. 2023). Examining power and seeking to share power are key elements to hearing and amplifying voices in co-research (Fraser-Barbour et al. 2025; Kulmala et al. 2024).

Challenging power dynamics, Mertens (2007, 2010) argues that it is imperative that the commitment to social justice be upheld, particularly when engaging with diverse voices or voices at the margins. This means university researchers need to examine and address the unbalanced power that exists throughout the research process using critical reflection and reflexivity. Power relations can also be influenced by assigned or preassigned roles and even rates of participation among co-creators (Benz et al. 2024). A further dimension of influence is the dynamic and shifting nature of power that is attributed to the various phases of the research process, where more or less power and influence are assigned at a certain point in time (Mertens 2010). Ethics approval is one of the stages where power sits with the researcher due to the inherent institutional structure. However, in these processes, co-researchers’ embodied expertise, lived knowledge and realities are intrinsically important in shaping ethical thinking and approach (Clifton et al. 2025; Kulmala et al. 2024). This includes helping frame and shape research questions and the selection of roles and methods (see also Smith-Merry 2019).

2.2. Co-Research with People with Disability

The United Nations Convention on the Rights of People with Disabilities (UNCRPD) states that all people with disabilities have the inherent right to be respected and have equal opportunity and autonomy to participate in society, including the decisions that impact them (United Nations 2006). Furthermore, the slogan “nothing about us without us” echoes the significance of people with disabilities being an integral part of decision-making processes (Grove et al. 2025; Clifton et al. 2025). This is further reinforced by Sikapa et al. (2024, p. 3) emphasising that “there are no ‘voiceless’ people, despite statements that are often made about ‘giving voice to the voiceless’. People with disabilities are not voiceless; rather, their voices have been silenced and oppressed by a lack of opportunities and inclusive stages and spaces.” Co-research situates people with disabilities as decision-makers in the research process. People with disabilities, as co-researchers, are recognised as inherently valuable for their lived expertise, unique insights and the overall contributions to inquiry, problem-solving, and transformation (Thorburn et al. 2024).

Additionally, the literature discusses the role of academic researchers in co-research projects—identifying their role as a facilitator who is initially responsible for creating a space of meaningful participation and collective decision-making (Thorburn et al. 2024; Kulmala et al. 2024). We refer to this role as researcher–facilitator throughout this article. Such spaces should foster a sense of inclusion and mutual understanding that invests time in building trust, establishing safety, and creating avenues for empowerment (Fraser-Barbour et al. 2025; Fletcher-Watson et al. 2021). Moreover, researchers–facilitators should encourage open and ongoing dialogue, where people participate and discuss their ideas and opinions freely without judgement (Fraser-Barbour et al. 2025; Fletcher-Watson et al. 2021; Grove et al. 2025).

Effective co-research must be accessible, inclusive and acknowledge that while every co-researcher has their own set of strengths and skills, they also have their own varied capacities and motivations that can influence participation (Fraser-Barbour et al. 2025; Grove et al. 2025). Characterising research by both its process and outcomes creates space for empowerment, relationships, and capacity-building, which positively impacts the quality of life and well-being of people with disabilities (Bjørnerås et al. 2024; Labattaglia et al. 2023). Equally, financially recognising people with disabilities for their time, energy, lived experience, knowledge, and expertise is not only important but is congruent and aligned with the ethos of the transformative paradigm that seeks to address systemic inequalities (Bjørnerås et al. 2024; Clifton et al. 2025).

However, critiques of co-design are wide and varied, including projects failing to enact principles of co-research (Fraser-Barbour et al. 2025; Kulmala et al. 2024); project designs that impose an inflexible research schedule and limited processing time for tasks leading to participant exclusion (Grove et al. 2025); non-genuine co-creation projects where non-academic partners are made to fit predetermined goals and outcomes (Bjørnerås et al. 2024; Clifton et al. 2025); and limited investment in the time and resources needed to support participation (Sikapa et al. 2024).

2.3. Co-Creation with Digital Immersive Methods

Co-research has drawn on creative mediums as an important tool to explore lived experience, embodied knowledge and convey stories. Digital methods, like digital storytelling, identify specific elements such as individual and community interactions and relations, experiences and points of view situated within their physical or virtual environment, with the outcome of creating visual narratives that depict key issues and possible actions (Behnam-asl et al. 2024; Turpin et al. 2024). Storytelling as a form of knowledge production and mobilisation offers a powerful way to enact change through educating and empowering individuals and communities, while invoking feelings of empathy (Turpin et al. 2024). Moreover, storytelling can construct a culture of self-expression, meaning-making and shared identity, leading to more relevant solutions (Behnam-asl et al. 2024; Sikapa et al. 2024).

Using a co-creation approach with digital stories enables underrepresented groups, such as older people (Zhao et al. 2025) and people with disabilities (Sikapa et al. 2024), to have their voices heard. The components of listening to voices of lived experience, exploring issues and posing practical solutions all have the potential to mobilise new modes of discourse, thought, ideas, insights and assumptions that contribute to social change and the reformation of power (Behnam-asl et al. 2024; Turpin et al. 2024).

Immersive technology with storytelling application in co-research is a growing area—as immersive application provides a platform that emphasises lived realities from the physical world to be produced and experienced in new and innovative ways (Ehab and Heath 2023; Turpin et al. 2024). Immersive technology such as virtual reality (VR), as a tool in the co-creation process, serves to depict a world or situation in which society or space becomes digitalised and simulates the physical world or distinct alternatives (Zhao et al. 2025; Turpin et al. 2024). Research into older people and people with disabilities has shown how VR helps minimise the physical and geographical barriers to participation, which enables more people to engage with diverse experiences, perceptions and realities in accessing public spaces and their developments (Ehab and Heath 2023; Zhao et al. 2025). VR storytelling has the potential to bridge the gap in digital storytelling by combining the narrative power of digital storytelling with the ability of VR to create a sense of presence and provide opportunities to learn about the environments and situations where stories take place (Zhao et al. 2025; Pillai and Verma 2019).

However, the research literature reveals that there are digital and resource barriers that may be encountered by some people with disabilities using these mediums. This includes limited access to, and/or experience with, digital technology and digital literacy that impact participation opportunities (Chadwick et al. 2023; Marshall 2024) as well as limited time and resources allocated to support digital learning and digital/data access for co-creators, reinforcing the digital divide (Zhao et al. 2025; Sikapa et al. 2024). Therefore, it is essential to consider how to support co-creators without adding another barrier or burden.

Immersive technologies, like VR, additionally place the researcher in a facilitator role throughout the co-creation process. The researcher–facilitator cultivates space for the collaborative exchange of ideas between co-researchers and creative technicians (VR creative), while also communicating expectations and output that ensure both the stories told and immersive technological outputs convey credible experiences (Behnam-asl et al. 2024; Ehab and Heath 2023; Sikapa et al. 2024). Moreover, the researcher–facilitator must ensure that co-creators feel that the final product is authentic and respectful; therefore, it is imperative that co-creators have decision-making authority and final approval of outputs (Sikapa et al. 2024; Turpin et al. 2024). As technologies and platforms continue to evolve, so too will the ways they can be utilised in co-research, transformative research, and invoking change.

3. Method: Research Approach to Co-Creating Stories for Change

3.1. Research Activity—Co-Creation Through Storyboarding Workshops Series and VR Animation Short Film Production

As outlined in the opening of this article, participatory creative methods have long been acquired as a mechanism to hear the voices of marginalised people and communities and seek to address power differentials between stakeholders, researchers and within stakeholder groups. Creative participatory methods importantly enable the inclusive interchange of lived realities to identify actions that increase the impact for change (Mertens 2021). Situated in the transformative research paradigm, we purposefully chose and designed this activity based on a co-creation approach to centre marginalised voices—in our case, young adults with disabilities—while being flexible and able to evolve with the co-creators’ needs, reflecting principles of inclusive research design (See articles 1 and 2). We now outline our rationale for choosing a story-based approach and the digital immersive medium of VR, aligning with inclusive research principles, before describing our process in depth.

Rationale: Story-Based Approach with VR Output, Inclusive Research

We chose a story-based approach using specialised storytelling processes to capture stories of everyday spaces and interactions and VR technology to convey the lived realities of diverse young adults with disabilities, as well as scenarios re-imagined—what it would look like as an inclusive space. The VR animation component was selected to evoke emotions and communicate personal experiences, proving a more immersive experience that could help build empathy. The stories by three co-creators were told in first-person narratives with the purpose of effectively communicating the importance and impact of planning inclusively for all people—acting as vital educational resources to current and future urban planners and other decision-makers—a need identified in Stage 1 of the research.

Inclusive research was embedded into the recruitment of the co-creators and in the storyboarding process to maximise the participation of young adults who could include people with intellectual and cognitive impairments and complex communication needs. Strategies we used were: ensuring an easy-read version of the instructions was available; using online workshops to bridge known barriers to participation (e.g., regional geographies, fatigue, sensory overwhelm); providing time and space to just talk and go through information; having workshops spread out over weeks/months to meet various needs including fluctuations, flares, fatigues, etc.; and offering additional 1:1 sessions or side chats if requested to help support workshop participation. These inclusive strategies and how they supported co-creation are discussed in detail in the Section 4 of this article.

Consistent with inclusive and transformative research practice, the three co-creators received nominal fees per workshop to reflect the structural and intersectional nature of disability, barriers to social and economic participation, and to value their lived expertise. This approach also reflects the objectives of Beneficencein the Australian National Statement on Ethical Conduct in Human Research by mitigating time burdens and recognising the unique life experience of research participants. Full ethics committee approval was provided for this stage of the research—Stage 2 (UTAS human research ethics committees 26915).

3.2. Our Process

3.2.1. Step 1: Expression of Interest for Young Adults with Disabilities as Co-Creators

The first step was to invite potential participants—co-creators—to submit an Expression of Interest (EOI) to participate in the storyboarding series to co-create VR films. The EOI was open to people between the ages of 18 and 30 who identify as having a disability, neurodiversity, chronic illness, and/or mental health needs, as their voices are currently underrepresented. The researchers were looking for three to six people to undertake the project and were prepared to go beyond 30 years if the minimum of three people was not reached. Recruitment and easy-read flyers were sent to the participants from earlier stages of the Planning Inclusive Communities research project who met the age criteria, along with other strategies such as the use of social media channels with assistance from peak bodies, TAFE and university accessibility services. Interested people were provided with participation information sheets that were also in easy-read format. Accessible participant information and EOI forms in various formats were distributed to ensure people were fully informed of what the project involved, including preference for the use of their voice, co-creator/artist statement and consent to participate. Participants were asked to complete an EOI using an online Qualtrics form or easy-read form. They were asked to:

• Tell us why they wanted to get involved by providing a short 250-word statement or video.
• Confirm they met participation criteria—i.e., they can use online meeting platform Zoom, can work with others, can commit to 4 workshops, are of age, and identify as a person with disabilities, neurodivergent person, or person with chronic illness/chronic mental health needs.
• Provide consent to participate.

From this process, three young adults with diverse disabilities located across various parts of Tasmania, Australia, who applied were selected as co-creators.

3.2.2. Step 2: Co-Creation—Storyboard Workshops

Initially, 4 workshops were planned, but through the co-creation process, we ended up with 6 workshops to ensure adequate time for the process and scripting stories. These extra workshops were allocated to dedicate more time to sharing experiences and exploring why inclusion matters. Only after discussing inclusion and sharing our experiences did the story building occur. Additionally, more time was given to become familiar with VR as the chosen digital immersive medium. We reflect on this in detail in the Section 4. Authors 2 (Lisa) and 3 (Sam)—researcher–facilitators—guided and supported co-creators through a series of steps for developing an increasingly detailed storyboard and scripts that were then produced into short VR videos. The workshop sessions were held on Zoom. Storyboard building block tasks were provided to the co-creators in advance to help prepare and familiarise themselves for each workshop. Each workshop lasted approximately 2 h with short breaks to meet the diversity of needs. During the workshops, particularly from Workshop 2 onwards, time was provided at the beginning to reflect on the previous workshop, how people were feeling about the process, and whether there were things that needed to change. At the end of the workshop, we discussed and set the focus for the next workshop. In between workshops, co-creators were able to share reflections, which was often expressed via email to the lead researcher. Below, we summarise the key activities of the story-building workshops.

Workshops 1 to 3: Exploring the Idea of Story Co-Creation and Our Task

The first three workshops explored the idea of story co-creation, getting to know each other—building relationships, establishing trust, and exploring the task at hand—building films to improve awareness and the impacts of living in a world not planned for you and empowering planning for equity and inclusion by showing what is needed to make communities and cities more inclusive for all. Scenario ideas were introduced in Workshop 1 using Mural, an online interactive board, but it was quickly identified that developing scenarios would take more workshops. The key need for Workshop 1 was to provide time to discuss and explore the task at hand and get to know one another by sharing different concepts, either verbally or on Mural, as well as selecting an avatar for storytelling.

Workshop 2 focused on discussing why our stories matter. This workshop explored why telling stories about inclusive communities matters to the co-creators. Co-creators raised and voiced the importance of Disability Rights, respect, equity, and inclusion. From these values, themes emerged that gave foundation to scenarios. Such scenarios centred the lived realities of diverse people with disabilities within everyday spaces and interactions (e.g., going for a coffee with a friend at a local café), including scenarios re-imagined—what it would look like as an inclusive space. Workshop 3, built on Workshops 1 and 2, facilitated discussions on emotions and how to convey the impacts of living in a world not planned for you and empower planning for equity and inclusion—with specific focus on scenarios of everyday spaces that were identified in Workshop 2.

Workshops 4 to 6: Developing and Refining Story Scripts

Although each scenario and story was presented individually, together they formed a collective call to action. This was identified in Workshop 4 and further developed in Workshops 5 and 6. Researcher–facilitators assisted the co-creators in talking through their realities, which were recorded and transcribed using Zoom. These Zoom recordings and transcripts were collated into a Microsoft Word document, forming the basis for storytelling and scripting. Co-creators were asked to describe how their scenario (going to the library, going to the pub, or going to play sports) could be made more inclusive. This stage also explored VR animation options that represented them and their story ideas, which was complicated, as we collectively decided on a change to re-centre our creative directive. This is reflected on by researchers and co-creators in the next section.

3.2.3. Step 3: Decision-Making—Review and Revised VR Stories

Workshops 7 and 8 focused solely on VR production of the story film and included the VR creative. Workshop 7 included initial meetings with new creatives to discuss co-creators’ needs, concerns and how they wanted to be represented. This involved producing the background for the stories. In between this workshop, the researcher–facilitators held a session with co-creators to record the narration of their scripts. The co-creator chose to use their own voices for narrating the VR. This was done on Zoom to extract an audio file for the VR creative to incorporate their voice to sync with the animation. Workshop 8 involved reviewing the draft films to gain feedback, both verbal and written. Co-creators then reviewed the stories and provided feedback on additional film production, including music, opening, and closing cards. Researcher–facilitators also supported co-creators in developing the creator/artist statements. This led to the final films being approved by the co-creators.

3.2.4. Co-Creator Acknowledgement

Co-creators were also given the option of being named as co-creators after the films were produced. This was a second step of the consent process and only occurred once the project was at a stage—film/script development—where co-creators could make an informed decision about consenting to their voice being used and being named. An information sheet was provided, including a verbal discussion on what this level of consent meant by explaining that being named as co-creators would waive their anonymity. All chose to be named as co-creators, waiving anonymity and completing the consent waiver form.

3.3. Co-Created Outputs: Stories for Change Films

What was created was the Stories for Change VR short films https://www.planninginclusivecommunities.com/stories-for-change (accessed on 10 January 2026).

This comprised:

• Introduction with voice over by lead researcher Lisa https://youtu.be/l57MwpyxHpA (accessed on 10 January 2026)
• Ana’s Story https://youtu.be/ZYfFhjV8Ckc (accessed on 10 January 2026)
• Isaac’s Story https://youtu.be/Svv9WdBDyL4 (accessed on 10 January 2026)
• Nicole’s Story https://youtu.be/OJQZY_JCZ-o (accessed on 10 January 2026)
• Collective Call to Action https://youtu.be/aD04uJ3BQtw (accessed on 10 January 2026).

4. Findings/Reflections

4.1. Methodological Reflexivity

Methodological reflexivity is an important aspect of co-research in progressing inclusive creative methods in the transformative paradigm. It allows for critical consideration about the choices, the way the process unfolded, and the influence of methodological decisions, because all methods mediate knowledge and shape experiences (Olmos-Vega et al. 2023). As a co-research team consisting of an academic researcher, an independent researcher, three non-academic co-researchers—young adults with disabilities—and a creative technician (VR creative), we felt that it was beneficial to gain insights and learnings about the process and output decisions: how people felt, what worked, and what could be done better. Although reflection was embedded across the co-creation process, we conducted and documented a more extensive post-project reflection. Methodological reflexivity was considered essential for contributing to the ongoing dialogue around co-research and co-creation with marginalised communities, such as people with disabilities.

We centred the reflections around four questions:

• What was your experience as co-creators in the process of story making?
• What did not work, what could have been done differently, and what stood out when working with creatives?
• How did you feel about the final product—the co-created films?
• Advice to others: what really works for you as co-creators?

4.2. Process

The reflection questions were drafted, shared by email, and revised to what is presented above. The co-creators were asked to reflect on these questions, before coming together for a reflection session on Zoom in 2024 to share and discuss the above questions. Questions were discussed one by one and asked by Sam (author 3) and Lisa (author 2). A transcript from the Zoom session was generated and analysed using thematic analysis to identify key insights, which were then shared and confirmed among all co-creators. For the purposes of this article, co-creators have randomly been assigned a number to focus on presenting the broader thematic learnings, rather than individual positionality. We share and discuss the key learnings that emerged during this reflection below.

4.2.1. Reflection Insight 1: ‘Surprising’ Authentic Participant-Led Roles and Power Sharing

Co-creation is as much an ethos as it is a practice and process. What became apparent in the reflections is just how much it matters when projects are authentically participant-led. The co-researchers shared that participant-led projects are uncommon and that, in their experience, projects described this way are usually not genuinely participant-led. This was further apparent in the reflections where ‘unexpected,’ ‘a surprise’ and ‘different to’ words were used to reflect on their experience of being in this co-creation project.

Co-creator 1—yeah. Uh, the experience I suppose for me was unexpected, [that] is a good way to [put it]. It was very different to what I came into, the preconceived notions I have were a bit different, I guess. ‘Cause I wasn’t expecting, I suppose, for it to be so participant-led, which was a really good thing.

Co-creator 2—…I think it was the, the first meeting sort of had a very different vibe to what I was expecting in a good way. And, uh, joined in almost, I suppose for the first time, feeling like it really was co-creating is sometimes something I felt is missing in my past experiences taking place in like, taking part in like, research projects. And so, from that point of view, it was a really positive experience overall.

Co-creator 3—…I was really excited to work at a disability-led co-design project, because that’s a word that is used quite a lot. However, I don’t think it’s really put into practice very well, whereas like with what co-creator 2 said, it was very participant-led, which is what I really appreciated.

These experiences are not uncommon; the literature also identifies criticism within the co-creation/co-design in research and policy—identifying that many projects may use the name, but do not reflect the ethos of participant-led (Grove et al. 2025).

What was also heard is that participant-led does not just mean having an active role, but that your voice is heard and acted upon. This is of the utmost importance, as it means that co-researchers are given the power to have a say and influence over the process and outcomes/outputs. Power sharing will inevitably shift across different roles and scope within research, as outlined by Fraser-Barbour et al. (2025); however, establishing and clearly articulating power-sharing roles upfront in the project is important to hold the team accountable.

Co-creator 1—…from my experience, my personal experience, I find it hard to first have a voice, have it heard and appreciated, and I think this project was so beneficial and the outcome and the output was how it was because, well I had the voice, a voice and I’m hoping the others had that space too.

Co-creator 3—And so we had a lot of say in the creativity and the way we wanted this project to go.

4.2.2. Reflection Insight 2: Time, Space and Flexibility in Processes

Participant-led also means having sufficient time, space and flexibility in the process so co-researchers/co-creators can plan, schedule, and prioritise needs and be responsive to these when they arise. For people with diverse disabilities and neurodivergent people, this is an essential requirement to being inclusive and authentically participant-led. Without flexibility, time and space being considered and embedded in this approach, not only will people feel rushed, but it will also become exclusionary. The vast literature on inclusive research and in particular co-research with people with disabilities and neurodivergent people reinforces how important flexibility is to authentic co-research (Smith-Merry 2019). The importance of time, space and flexibility were reinforced in the reflections of co-creators below.

Co-creator 2—…and while, you know, obviously we were working to a deadline as in any research project, it was, you know, flexible enough and also, the schedule was the, the way that we planned and scheduled to reach that point was largely participant-set. And that was really important too ‘cause then we were able to prioritise the elements that we felt we needed to spend more time on. …But it was really, you know, uh, really useful because, you know, we needed that time to, to decide where our priorities lie. And that’s, whereas I think if it had been set a, a set, uh, schedule would’ve been a lot harder for us to, to, to make room for the things that we needed to.

Co-creator 3—I think by having a slightly flexible schedule for people who are disabled and or neurodivergent, it makes it much more accessible for us as well because we generally do work a little different sometimes, and it does take a big pressure off to have our needs catered for a lot more in that way.

Co-creator 1—…something that rings in my head true, and I think this will echo during our discussion, is, the nothing about us without us and what we’ve talked about so far really rings true. So that, all the way from where we are and the issues we might face in our day-to-day lives before we even discuss things on, on, on screen… and yeah, just being who we are and having space to that, to that and drive those priorities, the aims, and the outcome, I just thought that was really special.

Another consideration to enable authentic participant-led research with diverse people with disabilities is digital inclusion. In this project, running the project online enabled young adults with disabilities across diverse geographies the opportunities and platform to be co-researchers, and to come together to create education platforms. Online collaboration environments address a range of known barriers to participating in face-to-face co-creation activities for people with disabilities, particularly where there are multiple workshops and time demands over the course of a project. Digital space can overcome barriers to transport and risk to health (immunocompromised), and help researchers and co-creators manage pain/energy/fatigue and sensory overwhelm; that is, you can participant in a way that is comfortable to you. Digital collaboration also addresses the dominance of urban normativity (privileging urban life and living) where distance is not well thought out (Sikapa et al. 2024). Yet for people living regionally, like in Tasmania—a southern island off mainland Australia where the co-researchers and lead researcher were located—distance is a critical factor, hence digital collaboration space being an important consideration in project design.

Co-creator 2—I think another important element was that we’re all people living in regional areas. Uh, and so it, and, and we have differing life schedules and, and commitments and ability to do an amount in a day. And so that was really important to be able to come together digitally in a flexible manner. I, I don’t think the project would’ve been possible without that.

4.2.3. Reflection Insight 3: Building Relationships Is a Component of Co-Research

Co-creation does not just happen; there are various principles, considerations and processes designed into the approach to support and facilitate authentic co-research. As we have discussed so far this includes both authentic roles and power sharing as well as time, space, and flexibility in processes to be responsive to needs. Another essential component is building relationships. This is not just time to build relationships at the beginning of the project, but a commitment to nurture this over the course of the project. This included adding in more sessions early on to get to know each other but also over the course of the project where the focus was on talking and discussing. For the co-creators, the investment in relationship building was considered the “backbone” of the project’s process and thus success, as it allowed for the sharing of ideas and discussion of differing views on how to progress: “talked over our thoughts and our ideas and our differing point of views. Uh, and, and that was all we did.”

Co-creator 2—…and for me, uh, a big part of the experience was relationship building. And that was something that was really positive all throughout. That was something that really, I think to me, to be honest, was the backbone of, of the co-creation process was being able to build a relationship with the other participants and the researchers, and also the artists, uh, that, because that’s something that I often felt was a bit lacking in, in other situations where I’ve even taken person, or consultative research. And so, for me, I think that was the key difference here was a, as co-creator 1 said, we had that time to build a relationship and trust between each other.

Co-creator 1—And yeah, within that co-creation process, I found that we were on a time limit, but we weren’t rushed. We had all the space for each other and basically have our needs to form that relationship and get the product that we did. So that was good.

4.2.4. Reflection Insight 4: What Did Not Work or What Could Have Been Done Differently?

With all projects there are always things that could have be done better or differently. In our case, it was the engagement of the creative personnel turning the stories into the VR films—both timing in the process and willingness to be in a participant-led project. What stood out clearly for us is this is something that cannot be assumed—everyone involved in the project must be comfortable with having the power in decision-making sit with the co-researchers—the co-creators. After all, it is their story and how it is represented digitally needs to reflect the wishes of story holders—the co-creators. This means all parties involved must authentically listen to, respect, and be led by the wishes and insights of co-researchers/co-creators.

Timing also matters. What emerged through the experience and reflection is to ensure the creative personnel are included earlier in the process. This is important in terms of relationship building and for the creative to hear and understand the project intent and deep lived meaning of these stories from the co-researchers and creators themselves, instead of simply reading it in words, devoid of meaning. These considerations raised here are something that unfortunately emerged in our project—and something that without acting on could have derailed the whole project. At the end, we had to hold true to the project ethics and participant-led ethos, and this unfortunately meant changing personnel halfway through.

Co-creator 3—For me, there was only one big thing that didn’t work, and that was when we initially weren’t listened to when we had a different person who was gonna do the VR. I found that quite challenging to deal with and so I think having people on board who are gonna listen to the people that, that are leading the projects and the voices is super important.

Co-creator 2—Yeah, I think that’s really vital that there’s a genuine commitment to, to listening by everyone involved. And that was one of the big challenges was, you know, originally working with an artist who I don’t think really, uh, had that commitment.

Co-creator 1—Yeah, I think we all reflected that kind of unease with the, the first VR designer… I don’t think what I was seeing and what I was hearing kind of matched up. And I think, yeah, that was tricky because the, so the scripting and the VR was done later and we had already done, so all of us had already done the, the great hard yard works about planning, telling stories and all those things in the diagram. And then one person came in who was not only different to that, but totally different to our vision and how we wanted it to go… there was definitely a disconnect there.

Emerging from our reflections is that if the process is not right and the relationships are not right, it will not translate into outcomes that reflect the ethos of transformative co-research and design. Relationships built on mutual respect serve as a crucial element of successful co-creation and research, and become especially important when differences need to be navigated. Mutual respect is often displayed through listening with intent; that is, the motivation to understand a person’s meanings, experience, and perspective. For the co-researchers, who had two experiences with different creatives, the key point of difference is listening with intent displayed with empathy and non-judgement.

Co-creator 3—They listened. Yeah.

Co-creator 1 (laughed)

Co-creator 2—I think that’s…

Co-creator 3—…which was a pretty big part, which, pretty big part…

Co-creator 2—…I think. And, and not just, I think it wasn’t just us giving instructions and or, or such, but it was also about listening with empathy and taking the time to actually hear our stories and understand our perspectives on a, on a deeper level.

Co-creator 3—Agreed.

Co-creator 1—…You’d really have to have that experience and empathy. So, I think what I’m trying to say is, yes… not making judgements. But I think that empathy and compassion and wanting to learn and understand definitely came in… listening and speaking echoed through the rest of the project because the empathy was shown. Yeah.

4.2.5. Reflection Insight 5: Both a Learning Process and a Creative Process in Using Mediums Like VR

Reflecting upon co-researchers’ experiences in using VR as a medium for the film outputs, what emerged is that the use of any creative technical medium in co-research projects has both a learning process and a creative process. We were all unfamiliar with the medium of VR—our experiences reinforce that it takes time to learn about and be comfortable with such mediums. As shared in our reflections, VR meant a “big learning experience” and “steep learning curve.” The learning process is often forgotten about and not factored in. In our case we had to add on more sessions to allow for this learning process to occur. It is important for all co-research projects considering using VR or other complicated/technical creative formats to acknowledge and plan for the learning process needed to enable the co-creation process.

Co-creator 2—…and so for us, uh, that was a big learning experience. And I think while it did turn out well, it took us longer than perhaps it would’ve. And that’s where, obviously that’s just something that I, that you’ve gotta keep in mind is that it’s, it’s both a learning process and a creation process. And yeah, that was something for me that I found that took me a while to get my head around it. And, and I think we took, we had to take a couple of extra meetings because of that… I’d only used VR once a long time ago. And so, for me it was a big learning curve. And, and, and partially that was a learning curve in, in what to expect.

Co-creator 3—I would agree. Before this project, I knew about VR, but I had not done any of it myself. So, it was a very steep learning curve, I would agree.

4.2.6. Reflection Insight 6: Conveying the Meaning and Reality of Lived Experience in the Final Product

An important principle and aim of this project was to authentically tell stories that captured and represented lived realities to build empathy and awareness. This is why all co-creators having decision-making throughout the creative process and final sign-off on the films is not only essential to uphold the aims and principles but it also reflects the true essence of what co-research/co-creation is and should look like. While it took time negotiating and refining the stories into films, listening with intent and mutual respect led to final outcomes that reflected the stories co-creators wanted to tell and the poignant messages they wanted to convey.

Co-creator 3—Well, I personally haven’t used VR before this, so the whole process I found to be really interesting. I really liked the, the final product. I, I had quite a few things in my own particular story that I wanted to get into there, so I was glad that I was able to get all those important things in my story included. And I have since sent it out to quite a few people and had a lot of positive feedback. So I’m really happy about that.

Co-creator 2—…I did not really know what it was gonna look like at the end, to be honest, because it was so outside of my field of reference. And so, yeah, I was really happy too; it was different to what I expected, but in a, I was happy with what it did turn out to look like. And, and I think that it was a really complex topic to touch upon. And so, I found that, you know, VR worked well as a medium in the end because it allowed us to explore sort of multiple elements of the subject and the way you can’t really do in a traditional 3D or 2D rather medium. And yeah, so, uh, and you know…

Co-creator 1—Definitely yeah, I think VR’s a new but exciting technology, and can help you, well, virtual reality is basically, experiencing reality virtually; I know that sounds a bit simplistic and everything like that, but I think that’s rather cool because if you’re talking about the relationships, and the emotion, and the change, and the call to action that we want and that we, we ask for in our videos.

Furthermore, upon reflection, differences in the VR experience were attributed to its immersive qualities, which provided a deeper layer of insight into lived experience. Co-creators felt that immersive visuals and narrated stories could help to evoke more empathy by people without disabilities.

Co-creator 2—I think for me it’s immersiveness, and I know that that’s become sort of a cliche… but I think VR really does provide an extra element of emotion that you can’t really achieve. ‘Cause when you’re viewing it with a VR headset, you are in that space and yeah, that’s really important, I think, to building empathy.

Co-creator 1—…if co-creation, co-design is a backbone and foundation, and then your VR is basically just the, the flesh, skin, everything, or the foundational elements built on top of that… you can probably see how they’re feeling, how they’re thinking if you, if you highlight that with both the light and the shadow, if that makes any sense.

Co-creator 3—I think having the visuals with our voices, it gives more of a deeper look into the story of what we are trying to tell and get across to people and more of an insight.

Part of the impact of the films is having the opportunity to narrate using one’s own voice rather than a generated one. While it was not decided until much later in our process to allow time to make decisions due to there being an unfamiliarity, and not being sure what the product would look like, the use of our own voices was embraced. The process we undertook reinforces that the use of voice in the narration is important, but it should be offered and revisited over the co-creation process, giving co-researchers the power of choice and decision-making.

Co-creator 3—I was super worried initially just because I’ve never done anything like this before, so yeah. But I think it turned out very well in the end.

Co-creator 2—Yeah. I’m glad we did as well.

Co-creator 1—Yeah, it was, it was me walking with [my guide dog] and it had my voice, just how I would usually speak and, well, not really walk—that was a bit animated—but that was pretty good too.

4.2.7. Reflection Insight 7: Commitment to the Ethos of Co-Research

The final reflection that takes us back to the beginning is you must have commitment to the ethos of co-research to be authentically participant-led and transformative. Commitment looks like the researcher believing in the value of lived experience and that this experiential knowledge shares power with researcher–facilitators. It is important to outline co-research principles upfront and have a commitment to them by all; to have reflexivity built into the project; and to revisit these principles together throughout and at the end, like we are sharing here.

Co-creator 3—…so for ones in the future doing the same sort of thing, finding people from that lived experience that you are what, whatever that experience you are talking about. So, it’s the real voices that are at the forefront.

Co-creator 2—I think I concur with what co-creator 3 said, but I also think that a really important element is that to have your research principles, uh, upfront …around co-design and commit to them and be willing to check-in that you are meeting them, you know, the principles of your participant-led or lived voices and things like those, that whatever’s important to your project and the group that you are co-creating with, you’ve gotta have those, you know, written down and referred back to regularly and, and, you know, making sure that you’re meeting the, what you set out to do.

Co-creator 1—…I reckon the voices should be the product. If you know what I mean… but the element of bringing that voice and everything through to the end of the product instead of just a segment of the product, I reckon that’s amazing. And that’s where the authentic change will be.

5. Discussion

Co-research using creative methods continues to grow as a form of transformative research. This article reflects on the experiences and implications of co-creation with young adults with disabilities within a transformative co-research paradigm. The methodological reflections provided by co-creators reveal several important insights: (1) authentic, participant-led co-research fundamentally shapes the quality and impact of the experience; (2) time, flexibility, relationship building, and digital inclusion are not optional but are structural requirements for disability-inclusive co-research; (3) technical creative methods such as VR require dedicated learning processes for all stakeholders; and (4) meaningful representation and power sharing with lived-experience experts are crucial to producing authentically co-created, ethical, and impactful immersive outputs. Collectively, these insights reinforce and extend the existing literature on co-research, disability-inclusive methodologies, and digital immersive storytelling.

5.1. Authenticity and Power in Participant-Led Co-Research

A dominant theme emerging from the reflections is the significance of authentic participant-led practice. Co-creators repeatedly emphasised that the project differed markedly from prior “co-design” experiences, where participation was nominal or tokenistic. Their descriptions—“unexpected,” “a surprise,” “different to past experiences”—highlight a gap in practice: despite growing enthusiasm for participatory approaches, many projects fail to enact the deeper ethos of co-research emphasised by Mertens (2007, 2010), Fraser-Barbour et al. (2025) and Kulmala et al. (2024).

A participant-led approach requires that power dynamics be addressed in research. As reinforced in our reflections it is not enough to just have a voice, but your voice needs to be acted upon. Genuine co-research requires the redistribution of decision-making power across the lifecycle of the project (Fraser-Barbour et al. 2025; Clifton et al. 2025), including creative decisions and narrative and visual representation like our Stories for Change project. The literature reinforces the importance of a clearly defined decision-making approach that all people involved in the project commit to, suggesting that co-research processes must be intentionally structured to prevent any attempts to prevent or dilute the co-researchers’ expertise (Clifton et al. 2025; Fraser-Barbour et al. 2025; Sikapa et al. 2024). Our project operationalised participant-led principles through shared decision-making, iterative choice points, and final sign-off authority residing with the co-creators and held these principles to account when challenged by others. Both the literature and our project demonstrate that co-research requires more than methodological techniques; it requires an ethical and relational stance where lived experience is recognised as a central form of expertise (Clifton et al. 2025; Kulmala et al. 2024). It also affirms the importance of all collaborators committing to and sharing the project ethos.

5.2. Time, Flexibility, and Digital Inclusion as Structural Requirements

A second major finding relates to the co-research structure reflecting the time, flexibility, and various rhythms of disability and neurodivergence (Smith-Merry 2019; Fletcher-Watson et al. 2021; Stafford et al. 2022). Co-creators expressed that flexible participant-set scheduling directly enabled their capacity not only to take part in the project but also to see it through to co-created outcomes. Without flexibility in the research schedule, task and time limits can impose a form of exclusion (Grove et al. 2025). This echoes inclusive research scholarship emphasising that accessibility must extend beyond physical or communication accommodations and include participant-informed process-level accessibility—both requirements and structure (Grove et al. 2025; Smith-Merry 2019).

Digital inclusion further emerged as a critical enabler. Online workshops facilitated participation across regional geographies, reduced fatigue and sensory overwhelm, and created a safe, comfortable environment for co-researchers. This is an important consideration that can be overlooked in urban-centric research (Marshall 2024) or non-inclusive research (Chadwick et al. 2023). In our project, the digital environment became not only a logistical convenience but a dimension of methodological inclusivity. The role of digital participation in improving diversity and inclusion is being discussed across social and health fields to reach wider and more diverse audiences (Tomiwa et al. 2024). However, more work is needed, as there are digital access and literacy divides that need to be addressed to maximise their potential (Chadwick et al. 2023; Marshall 2024).

Co-Creation as a Relational Practice

The importance of relationship building emerged as a strong insight from our reflections on the process and directly links to how co-research is approached. The co-researchers described the relational environment as the “backbone” of the project, enabling time to get to know each other, build trust, be open with one other and share emotional or complex experiences that arise when talking about lived realities. Mertens (2010) reinforces the relational essence in transformative paradigm values, where knowledge generation is inseparable from relational ethics, and where trust, reciprocity, and shared openness shape the quality of experiences and outcomes. In our project, “listening with intent,” empathy, and relational accountability were essential conditions for enabling co-research. Relationship-led processes also provided the foundation for navigating differences, negotiating creative decisions, and maintaining care for each other during discussions about disability, exclusion, and identity. The broader literature also highlights the instrumental role of relational processes (including trust building, mutual understanding, and motivation) in shaping knowledge generation and high-quality outcomes from co-research (Fraser-Barbour et al. 2025; Benz et al. 2024; Schneider et al. 2019; Mertens 2021).

5.3. Learning and Creative Processes in Digital Immersive Methods

The reflections illuminate an understudied dimension of digital co-research: the distinction between learning and creative processes. For most of the team—researchers and co-creators—VR was unfamiliar, and therefore experimentation and additional workshop time were required to understand how it worked and its potential impact. This reflects the emerging literature, suggesting digital immersive methods may inadvertently replicate inequities unless time and resources are allocated to support participants’ digital learning (Zhao et al. 2025; Sikapa et al. 2024). By recognising learning as part of the methodological journey rather than a barrier, the project was able to create space for co-creators/co-researchers to meaningfully shape the stories of everyday spaces and visual representation for VR outputs. This finding contributes to a growing understanding that participatory immersive storytelling must incorporate capacity-building as an explicit part of the approach (Sikapa et al. 2024; Chadwick et al. 2023). Our experiences and the literature suggest there is still much to learn in this growing area of co-research with digital immersive mediums.

5.4. Authentic Representation and Impact Through Voice and Immersion

The positive responses to the final VR short films highlight the importance of authentic representation. This aligns with the digital storytelling literature, which emphasises that voice—both literal and metaphorical—is central to reclaiming narrative agency for marginalised storytellers (Sikapa et al. 2024; Turpin et al. 2024). VR’s immersive quality was described as particularly powerful for conveying emotional realities and generating empathy—qualities that are essential when engaging audiences such as planners, designers, and policymakers (Turpin et al. 2024; Sikapa et al. 2024). While VR carries accessibility limitations and technical barriers, its potential for social impact is evident when co-creators maintain control over narrative content and visual representation.

5.5. Implications for Transformative Research Practice

The reflections reinforce several non-negotiables for transformative co-research using digital immersive storytelling with young adults with disabilities:

• Co-research must be designed around lived experience as a form of expertise, with decision-making principles committed to and embedded throughout.
• Co-research is relational, and relational processes (such as providing time and space early on to get to know each other to help build trust, openness, and cooperation) are methodological necessities, not optional.
• Technical creative work must align with participant-led values, meaning all collaborators must share the project’s ethos.
• Time, flexibility, and digital accessibility must be structurally embedded to avoid exclusionary and ableist research practices.
• Outputs (such as the VR films) must reflect co-creators’ intentions, values, and identities, with final authority resting with co-researchers.
• Everyone on the team must be committed to the ethos of co-research.

5.6. Limitations

One of the limitations is VR itself. It is very technical, and not something that everyone can use. It is also new technology to many, meaning there is a steep learning demand on all research team members. It is not an everyday accessible medium, which limits educational outreach to places with access to VR headset technology. However, the films can still be watched in 2D online and in person. In 2D, the power of the stories is conveyed; however, this format does not provide the same immersive experience. The project budgeted for and purchased a VR headset for each co-researcher to ensure they had no cost-related access barriers. VR films are also not accessible to blind people; therefore, visual description of the films is necessary to address this.

5.7. Conclusions

Our reflective article highlights that creative and digital immersive methods, such as storytelling and VR, have meaningful potential for social impact but only when founded on authentic and ethical power sharing in co-research, a commitment to the ethos of co-research, and respectful collaboration. Key challenges, including value misalignment with creatives and the steep learning curve of new technologies, reinforce the need for clear principles, early relationship building, dedicated learning time being factored into the process, and a commitment to ongoing reflection across the project. Despite the limitations described above, the project demonstrates that when lived-experience voices guide both process and output, digital immersive storytelling can become a compelling tool for education, empathy, and systems change in planning inclusive communities.