Participatory research with young people with special educational needs and disabilities: a reflective account

ABSTRACT

This paper responds to the calls for researchers to be more transparent about their processes of conducting participatory research with young people. Set within the context of a doctoral project that explores the inclusion of young people with SEND in the UK School Games framework, the paper highlights challenges and triumphs of researching alongside young people with SEND. Participants were aged between 11 and 18 and attended either a special school, a SEND unit within a mainstream secondary school or a mainstream college. The paper offers two contributions to the field, first is the novel methodology, which offers researchers and practitioners fresh approaches to engage young people in research. Second is three reflective vignettes that are positioned within the methodology and provide transparency and insight into the messy and confusing processes of informed consent, data co-construction and research dissemination within a participatory research framework.

KEYWORDS:

• Participatory research
• young people with SEND
• inclusive sport
• methodology
• digital technology

Introduction

What it might mean if researchers were more transparent about the unpredictable, messy and confusing situations that arise when undertaking participatory research with young people. (Fitzgerald, Stride, and Enright 2020. p.13)

The purpose of this paper is to respond to the call for less sanitised accounts of participatory research and instead presents a functional and transparent account of some of the messiness, challenges and triumphs of researching with young people with Special Educational Needs and/or Disability (SEND) (Fitzgerald, Stride, and Enright 2020; Horgan 2017). In response to this call, the paper offers two contributions, first is the methodology itself, the novel approach reframes traditional research processes and blends visual and digital technology creatively through a participatory methodological approach to make it a more engaging and accessible platform for young people with SEND to express themselves. The second contribution of the paper is the presentation of three reflective vignettes. The vignettes are positioned within the methodology and concern some the challenges often cited, but rarely addressed in literature that researchers are likely to encounter when undertaking participatory research with marginalised young people (Horgan 2017; Aldridge 2016). The vignettes document how utilising Augmented Reality (AR), video and digital illustration made the consent process more accessible for young people; how digital technology was used in data co-construction to include young people with complex needs and finally how young people-led showcases provided an important opportunity for young people’s engagement, voice and ownership in the dissemination of the research. These practical reflections capture some of the overlooked nuance of participatory research and so provide useful insights for researchers and practitioners who wish to collaborate with, and include young people with or without SEND, in participatory research.

Research context – the School Games

This research is situated in the UK context within the framework of the School Games. The School Games is a competitive, multi-format, inclusive school sport programme that sits within the broader UK sport policy, Sporting Future: A New Strategy for an Active Nation (Department for Culture Media and Sport 2015).Table 1 It will be a feature of the Physical Education and School Sport (PESS) landscape within the UK for some time, as continued commitment to the framework has been cited in the recent publication of the School Sport and Activity Action Plan, a new collaborative PESS policy from the Department for Education, Department for Digital, Culture, Media and Sport, and Department for Health and Social Care (Department of Education 2019). The School Games framework aims to generate grassroots opportunities for young people to participate in competitive school sport (Youth Sport Trust 2019), and a core component of this is to include young people with SEND (Black et al. 2015). The inclusive elements of the framework are essential in increasing opportunities and engagement in inclusive school sport for young people with SEND, as research has continued to show that young people with SEND experience fewer opportunities and participate in less school sport than other young people (Coates 2010; Fitzgerald 2012; Haycock and Smith 2011; Sharpe, Coates, and Mason 2021; Vickerman and Maher 2019). Furthermore, young people with SEND who do participate in sport are likely to encounter complex barriers that can limit the extent of their participation (Sport England 2019; Vickerman 2012). However, while the experiences of young people with SEND in Physical Education has become a salient issue (Coates 2010; Fitzgerald 2012; Haegele, Zhu, and Davis 2018; Lamb, Firbank, and Aldous 2016; Maher 2016), there is a dearth of research concerning how young people with SEND are included in school sport programmes. Therefore, the purpose of the research was to fill the gap by providing a platform to both include, and amplify, the voices of young people with SEND who have experienced the inclusive elements of the School Games framework (Sharpe, Coates, and Mason 2021).

Table 1. Co-researcher information

School type	Name (pseudonym)	Age	Gender
Mainstream college	Russell	15	Male
	James	15	Male
	Connor	14	Male
Special school	Shawn	11	Male
	Douglass	11	Male
	Jason	12	Male
	Sofia	12	Female
	Martha	13	Female
	Stefan	15	Male
	Richard	16	Male
	Rosie	16	Female
	David	17	Male
	Paul	18	Male
Mainstream with SEND provision	Molly	16	Female
	Joanne	15	Female
	Emily	13	Female
	Peter	13	Male
	Josh	13	Male

Participatory research methods with young people with SEND

In the UK, a young person is considered to have a SEND if ‘they have a learning difficulty or disability which calls for special educational provision to be made for him or her’ (DfE & DoH 2015. p.16). However, definitions of SEND are often contested (Coates and Vickerman 2013; Vickerman and Maher 2019; Vickerman and Hayes 2013), as the term references a complex spectrum of people and often the terms special educational needs and disability are used and applied interchangeably. This can lead to confusion and result in the specific needs of such individuals not being met (Keil, Miller, and Cobb 2006), furthermore, banding individuals under an umbrella term like SEND may create and perpetuate assumptions regarding a person’s individual abilities and preferences. These are pertinent considerations for research alongside young people with SEND and challenge researchers to design methodologies that are both inclusive and accessible.

Research design is a primary consideration as inappropriate design has been a contributing factor in marginalising the voices of young people with SEND in research, particularly regarding their experiences in sport (Wickman 2015; Fitzgerald 2009). Recognition of this marginalisation encourages researchers to be creative, as traditional qualitative methodologies and methods such as interviews and focus groups are often inappropriate for research with young people with SEND (Nind et al. 2013; Fitzgerald and Jobling 2009). Further factors which have been identified as contributing to this absence of voice include assumptions regarding the young person’s ability or competence to engage in the research process (Aldridge 2016), ethical difficulties in both obtaining formalised ethical approval and conducting ethical research in the field with vulnerable populations (Wright and Gabrielle 2012; Cocks 2006). Nind et al. (2013) argue that methodological innovation is needed in order to address the deficits of traditional methodologies, whereby researchers can employ their creativity to develop more inclusive research designs.

It is important work to advance the field and academics who do engage young people with SEND in research report highly valuable insights from young people who are keen to share their voices and engage in research (Sharpe, Coates, and Mason 2021). Participatory research methods are advocated as a good option for researchers who want to employ their creativity to develop inclusive, accessible and young people centred research (Nind 2017; Bradbury-Jones, Isham, and Taylor 2018; Aldridge 2016; Coates and Vickerman 2013). Participatory research methods subscribe to the relativist paradigm (Scotland 2012). Key to the approach is providing opportunity for the participant to actively explore their subjective realities and experiences of the world around them. Epistemologically, this is rooted in constructionism, whereby new knowledge is constructed subjectively and is a product of the individuals social, cultural, moral, ideological and political contexts of the time (Braun 2013). Participatory research methods facilitate the co-construction of knowledge via collaborative processes between the participants of the research and the researcher (Sparkes and Smith 2014). The entwined generation of this knowledge reflects the way in which participatory research is conducted with rather than on communities (Nind 2017).

Claims for participatory research have suggested that participants are situated and empowered as active stakeholders throughout the research process (Aldridge 2016). Specifically, in their use with young people, participatory methods are said to offer ways to amplify voice, provide opportunities to articulate knowledge, ideas and feelings and importantly, offer an avenue to share this with the world (Enright and Sullivan 2012). Participatory research designs are usually made up of ‘practical activities, that are considered engaging, enjoyable and relevant ways for participants to engage in research and generate data’ (Enright and Sullivan 2012. pp.123).

While participatory research may seem at first to be an enticing venture for researchers, conducting participatory research can be ‘messy’ and may challenge researchers to operate outside of their comfort zones (Fitzgerald, Stride, and Enright 2020; Walmsley and Johnson 2003). Furthermore, Fitzgerald, Stride, and Enright (2020) argue that participatory research cannot, in and of itself, simply guarantee more equity, inclusion or empowerment for young people. Projects that fail to seriously consider issues such as power disparity or are too adult-centric or poorly designed have as much potential as any other research design to create unethical and tokenistic examples of inclusive research projects (Fitzgerald and Jobling 2009; Nind 2017; Wall, 2017). However, Enright and Sullivan (2012) suggest that for participatory research with young people to be inclusive and accessible, it must begin from a premise of equity and the researcher must demonstrate a methodological sensibility. Methodological sensibility is an acute appreciation and understanding of the method, both intellectually and ethically, and this should be apparent in the research design and procedure.

The methodological sensibility applied in developing this study comprised three central tenets. The first concerned accessibility and inclusion. The inclusive elements of the School Games competitions are open to young people regardless of the nature of their SEND, which provided a challenge for the research to match that inclusivity. In short, if young people were accessing the inclusive School Games events, they would be invited to participate in research and the research would be adapted to meet their needs and preferences. The second was that the participation of young people with SEND would extend throughout the entire research process, from recruitment to dissemination. In much previous participatory research young people with SEND had been engaged in data co-construction but not beyond, therefore opportunities for participant control were built throughout the design. The final tenet was that the experience would be a meaningful one. Participatory research is underpinned by being representative and in line with the aspirations of the communities whom researchers research with, and their professional gains are secondary to those objectives (Pauwels 2015). Taking part should be reflective of the young people themselves and provide a new and fun learning experience (Aldridge 2016; Fitzgerald, Jobling, and Kirk 2003).

Methodology

This section of paper brings together the different points of the methodology and three vignettes. It is the vignettes that offer researchers interested in participatory research with young people insight into the aspects of that are lesser seen in traditional papers. Together, the vignettes offer transparent accounts of some of the backstage processes and the decisions that guided the research (Harding 1991). Talking transparently about the messiness researchers may encounter in putting participatory research to work aligns less with formal criteria often applied to qualitative research and more with ideas concerning researcher authenticity and genuineness (Fitzgerald, Stride, and Enright 2020). However, Tracy (2010) offers that sincerity (transparency about challenge), significant contribution (practically, methodologically and heuristically) and ethical (procedural, situational and relational) are all criteria for excellence in qualitative research, so support value and importance of this type of transparent discussions. Furthermore, work such as this advances important debates and insight around inclusion, participation and the representation of young people with SEND in research.

The reflective vignettes will be written in the first person; therefore, it is important to introduce the first author and lead researcher, LS. This participatory project formed part of her doctoral research. The reflective vignettes that sit within the methodology are based on her experiences of conducting participatory research with young people with SEND. LS comes to her doctoral research with a professional background of working in UK special schools and alternative outdoor education provision for young people with SEND. The second (JC) and third (CM) authors are both experienced qualitative researchers with specific expertise in participatory and voice-driven research with marginalised young people. In this research, they acted as critical friends, providing guidance and encouraging open critical discussion with regard to the direction of the research, the challenges and decisions during the research process, and in developing a reflective and reflexive account of the research journey.

Overall, the methodology consists of four contact points between the lead author (LS) and the participants (referred to as co-researchers from this point onwards). Having extended contact time helped to build valuable trust and rapport. Aldridge (2016) suggests that time is a highly important factor in participatory research with young people, time is the key to develop good relationships with co-researchers who can learn about who we are. This can affect how they perceive us. The relationship we develop can help to promote collaboration and negotiation in the processes of research. Time is not afforded hit and run approaches, so trust between the researcher and co-researchers is not fostered (Pink 2007).

The first point of contact consisted of an in-person invitation to join the research, delivered in school by the lead researcher. Second was the data-construction aspect of the research whereby young people recorded vlogs of their experiences taking part at one of two inclusive School Games County Finals. Data co-construction was followed by an editing workshop; this part of the research replaced traditional follow-up interviews or focus groups to explore the data with the co-researchers. In the workshop, young people learned how to turn their raw footage into a final vlog video. Finally, the research culminated in a young person-led showcase; this provided an opportunity for the co-researchers to disseminate their vlogs among School Games stakeholders who design and deliver their School Games provision.

Co-researchers

The co-researchers who took part in the research were 18 young people with SEND. They were aged between 11 and 18 and attended either a mainstream college, mainstream secondary school with a designated SEND provision or secondary special school. Inclusion criteria was broad and only required that the young person would be participating in one of two inclusive School Games competitions and wanted to be part of the research.

Mainstream college- School A

Co-researchers from School A were students with either physical and sensory, or moderate cognition and learning needs. At the time the study took place, the school had been competing in local inclusive School Games events for one year. School A’s participation was facilitated and supported by a newly qualified PE teacher who had a personal interest in inclusive school sport and been given the responsibility of leading the inclusive School Games provision. Before the study, School A had no specific inclusive sport provision beyond attending 2–3 School Games competitions per year.

Mainstream secondary school with specialist SEND provision- School B

School B’s co-researchers were part of a designated SEND unit that offers additional support for young people with SEND within a large mainstream secondary school. Co-researchers from School B had cognition and learning, physical and sensory, social, emotional and mental health, or communication and interaction needs. At the time of the study, School B had been participating in inclusive School Games competitions for two years. Attending the competitions was a shared, albeit contested responsibility between the SEND unit and the PE department. In most circumstances, a senior teaching assistant (STA) attached to the SEND unit took the young people to the competitions. School B had no specific inclusive school sport offer beyond attending 2–3 inclusive School Games events per year.

Special school- School C

Co-researchers who attended School C generally had more complex cognition and learning, physical and sensory, social, emotional and mental health, or communication and interaction needs and required support to access the competitions. School C had a long history of attending inclusive School Games competitions. Participation was led by either School C’s PE teacher or class teacher who was supported by class teaching assistants. School C’s inclusive sport offer included multiple school sport clubs, intra-school and inter-school competitions, external specialised coaching and links with local community clubs.

Recruitment

Young people from these three schools who attended inclusive School Games events were invited to participate in the research. Potential co-researchers were selected by a gatekeeper, who in all cases was a member of school staff who led on the inclusive School Games involvement and those identified were invited to attend a presentation about the research. The presentation was given in school by the lead researcher and functioned as an introduction and invitation to the project. The presentation comprised some interactive and traditional presentation slides, a video about the research that outlined the details of participation, key procedural ethics information, a practical ‘hands on’ experience with research equipment and a demonstration of the participant information pack, which was embedded with the research video via an Augmented Reality application.

The presentation closed with the researcher asking students to take an information pack only if they were interested in joining the project, and that they did not have to take a pack if they did not want to take part. This was purposefully symbolic as it encouraged young people to exert agency in their choice to whether or not to participate in the research.

The initial presentation was also significant in laying positive foundations for the rest of the project as the interactive nature of presentation demonstrated how the young people would be active and valued participants should they choose to participate. The initial session also provided an opportunity to begin to establish rapport with the co-researchers from the outset. Additionally, LS outlining the research project in person allowed for questions and discussion about the research, which supported the potential co-researchers to become more informed about their potential participation. The way in which digital technology can be used to support developing informed consent from young people with SEND is discussed in the following reflective vignette.

Reflective vignette 1: technology and informed consent

This vignette documents the process of supporting young people with SEND to become informed and active co-researchers from the outset of the research, through using novel digital technologies during the consent and recruitment processes.

Lewis (2010) argues that whilst ethical protocols for engaging young people are widely accepted in formal research, there is a dearth of information regarding the practical measures and nuances of ensuring consent is informed. The lack of information has resulted in calls for both transparency and innovation in the way consent from young people is sought (Nind et al. 2013; Lewis 2010; Parsons, Sherwood, and Abbott 2016). However, obtaining informed consent from young people, especially those with SEND, is challenging given the diversity and potential variance of their individual needs and preferences (Bradbury-Jones, Isham, and Taylor 2018) and researchers often enter settings with limited comprehension of the young people they are meeting beforehand (Parsons, Sherwood, and Abbott 2016). Enright and Sullivan (2012) suggest to counter these challenges, researchers need to present information about their research in differentiated, appropriate and engaging ways. Furthermore, Parsons, Sherwood, and Abbott (2016) suggest that there is potential for researchers to develop ways of using digital technology to inform and engage young people in the consent and recruitment processes.

Accessibility posed a central concern as the young people who would be asked to participate in the research were known to have a range of different needs from complex SEN to physical or sensory impairments. I wanted to centralise young people with SEND as active and trusted co-researchers throughout the research process, yet this first stage of the process raised complicated questions: How do I obtain and support informed consent from young people with complex and diverse needs? How do I differentiate for the participants who may be unable to access written language? How do I avoid making assumptions about potential participants' preferences in the ways they access information? How do I make learning about research engaging and relevant for young people, and avoid overwhelming my participants with lengthy, complicated and ‘researchy’ information?

Consultation of the literature was unenlightening because as Fitzgerald, Stride, and Enright (2020) suggest studies often failed to provide any more than sanitised accounts and lacked any useful insight about the more complex aspects of including young people in participatory research either before or beyond the data collection aspects of the research. Necessity therefore drove my creativity as I resolved to design my own accessible participant information pack. Initially, I reflected on my experiences of working in special and alternative education where I took inspiration from visual timetables and image-based emotion cards young people used to support their understanding or convey their feelings. This use of visual aids to support written language is accepted as a good support strategy and widely used in information packs for young people with SEND (Coates and Vickerman 2013; Fitzgerald 2012; Parsons, Sherwood, and Abbott 2016). I initially wrote the participant information pack in accessible short sentences that captured the key concepts underpinning informed consent (study purpose, right to withdraw, confidentiality) and highlighted keywords in bold (Wright and Gabrielle 2012). A cursory internet search to find supporting images of young people with SEND largely returned images steeped in what Walton & Dixon (2019) found to be covert discrimination and stereotyping. I could have used emoticons; however, previous studies indicated that using over simplified images to convey aspects of research such as confidentiality was often misleading or too abstract to be accessible (Parsons, Sherwood, and Abbott 2016). Feeling dissatisfied with my approach and not wanting to perpetuate the use of potentially damaging images I made the decision to create my own project-specific illustrations using digital technology.

Digital drawing-based technologies available on tablets and smart devices can support the use of a digital stylus and offer the ability to layer and trace images. I learned how to use photographs or free to use images to create a basic illustration. The images I was able to create for the participant information pack represented young people with SEND and were specifically illustrative of the research (see Figure 1). Therefore, accessibility of the pack was improved because the bespoke visual information accurately conveyed the written information regarding participation in the research.

Figure 1 Accessible participant information sheet

As an aside, I do not think that researchers who are interested in this method should be concerned as drawing ability is not a barrier to replicating this approach since the digital technology alleviates the need to be an artist. However, some dedicated time and motivation to learning the technology are needed to produce a high-quality, research-specific information sheet.

To further promote informed consent, I visited schools and presented an outline of the research in person. My concern here was explaining the project would impart a considerable amount of information for the co-researchers, no matter how much I differentiated the information it could be overwhelming. Researchers will know that explaining research processes can be complex, regardless of who they are explaining it to. After considering how I could provide young people with a recap in addition to the information sheet, I decided that since data co-construction was to record a vlog it would be remiss to introduce vlogging in any other way than to create an example vlog-style research video of my own.

The video recapped all of the key information and contact points of the research and essentially delivered the information sheet in a visual format. The potential co-researchers were able to access the video at any point following the presentation of the research as I embedded the research video onto the information sheet via an Augmented Reality smart device application. Advancements in app development and accessibility of such technology meant that the AR app could be accessed for free and is available on most smart devices. The video was complimentary to the information sheet, which contained all of information about the research; however, AR technology allows users to experience digitally generated images overlaid onto the real world. So, the young people were able to scan the participant information sheet with their devices and the research video would emerge from the sheet. The video could be played either as an overlay on the sheet or saved onto the device.

The robustness of the AR technology meant that potential co-researchers could access and re-watch the research video independently if they wanted to recap or share the key information at a later time. I thought that giving young people the opportunity to share the video and discuss their participation with other people would support them to become more informed about their participation in the research, as the ability to access the video retrospectively demonstrates a form of constructed ongoing consent whereby the co-researchers could reference the video to answer questions, become familiar with the researcher and recap information (Sparkes and Smith 2014; Braun 2013). Embedding the AR into the participation sheet led to an unintended but positive consequence. Through students sharing the AR and video recruitment in school was boosted as older students who took part in the inclusive School Games but were not invited by the gatekeeper (because they assumed that older students would not be interested) to attend the presentation, saw the video and lobbied to be part of the research. I returned to repeat the presentation and the older students were welcomed to join the research.

On the whole engagement with the accessible information pack was very positive across the project as co-researchers became informed, while enjoying the novelty of the AR. As summarised by a member of staff; ‘Using the AR was brilliant, really good fun for the kids, and I was able to go through it with them when they had questions about the vlogs or what they would be doing at the event’ (Senior teaching assistant, Mainstream School with SEND provision).

Data co-construction: vlogging at the School Sames

The second aspect of the methodology saw young people with SEND who joined the study become co-researchers (Aldridge 2016) and create a vlog-style video capturing their experience at a large inclusive School Games competition. Vlog recording is a visual counterpart to blog writing, vlogs are in-situ recording and provide a real-time account of individual’s experience as they experience it. Vlogs have become a popular contemporary medium of self-expression and are especially appealing for young people who cite their motivations for vlogging to include confidence building, discussing experiences, sharing information, to connect with others, and for enjoyment (Snelson, 2015). In this research, co-researchers worked as school groups to document their experiences and perspectives of the inclusive School Games. The co-researchers controlled the content of the vlog and were the directors, cinematographers and stars of their videos.

Reflective vignette 2: technology to facilitate engagement in research

I was fortunate to recruit a diverse and vibrant group of young people with SEND to the project, this brought an exciting dynamic and also a challenge to design a data co-construction approach that could be differentiated so that all of the co-researchers were included regardless of the nature of their SEND. Again, there was very little guidance available within the existing literature. Therefore, the aim of this vignette is to provide a practical ‘from the field’ example of how novel applications of digital technology can be applied in participatory research with young people. Here I reflect on my experiences of including Connor (pseudonym), who due to his physical impairment, may have previously been excluded from accessing the research. I discuss how novel accessibility features of digital technology were utilised to enable his participation.

Connor goes to a mainstream college and enjoys sitting volleyball which he discovered through taking part in the inclusive School Games. On the day his school (A) recorded their vlog, Connor and his team went unbeaten to win the competition. Connor was motivated to join the research project because he wants more opportunities to play sitting volleyball and to try other inclusive sports. He hoped that the vlog would lobby stakeholders to provide more inclusive sport opportunities for young people with SEND. Connor accesses the inclusive School Games because he has a significant physical impairment, which means he needs support to hold and manipulate objects. Fine operations are not possible for Connor without support including setting up a tripod, focusing a camera and the fine movements required to edit video. This posed a significant challenge as I was unsure how I could adapt the equipment to fully include him.

In preparing for the project, I undertook research to find a camera that would be accessible in terms of both practical and technical functions. The camera I chose features included screen touch auto focusing, a front facing flip screen so the co-researchers could position themselves in front of the camera easily and without having to manipulate the rig, uncomplicated buttons and intuitive symbols which made basic operations and functions straightforward. I also purchased a flexible and large grip tripod which was easy to manipulate and sturdy to hold. The final rig resembled a ‘YouTube vlogger’ set-up however, the accessibility features made using the camera uncomplicated, so the co-researchers could control and operate the camera independently. Furthermore, the trust and responsibility of being in control helped the young people to assume their roles as co-researchers and caused a noticeable shift in the confidence and assertiveness of the co-researchers who were initially a little reserved to take control of the camera at the event but increasingly began to offer ideas and discuss perspectives for the vlog.

Digital technology has evolved to include native accessibility features which can be harnessed to facilitate inclusive research, as the researcher I needed to learn about accessibility features so I could apply them in the field. Whilst learning the features of the technology took considerable time, it was a valuable investment. I developed my knowledge of the accessibility features through sourcing and attending free technology workshops, which I supplemented with online tutorials and videos. My experience taught me that learning about the technology is vital, but successful application is only possible when there is flexibility to adjust the research to meet the needs of the person you are working to include.

At the first point of contact, I asked Connor if he was interested in joining the project and how I could best support him to undertake the different aspects of the research. Putting Connor in control, we re-examined the camera’s functions and operations together, Connor found he was able to utilise the touch auto-focus and operate the stop/start button to record. For actions, he was unable to do like carrying the camera or setting the tripod Connor confirmed he was comfortable to direct either myself, his support assistant or his fellow co-researchers to support him. On the day of filming Connor was able to record his experiences and his perceptions of the School Games without difficultly, we had prepared our approach for support but largely Connor was able use camera’s accessibility features to record independently.

Having completed the filming element of the project, the next stage of the research consisted of an editing workshop whereby the co-researchers edited their raw footage to create their School Games Vlog. I was again concerned to what extent Connor would be able to access the video editing. In preparation, I sourced and attended another workshop that explored the accessibility features of my computer and the editing software that we would be using. Although I had prepared, I still harboured some anxiety that Connor may not be able to access the workshop fully. However, I had spent a good amount of time with Connor, and we had developed a good rapport. I knew that Connor liked to test his independence, so at the workshop I took a backseat approach to give him space to be independent. I had already configured the accessibility functions, but I had not enabled them as I did not want Connor to think I was making assumptions about his ability. Connor was already familiar with the accessibility functions and once enabled he was able to perform the editing operations alongside his fellow co-researchers.

The accessibility features combined with preparation and planning ensured that all of the co-researchers participated in editing their vlog. Connor’s inclusion within the project was incredibly valuable. His contributions raised important points regarding the shortage of opportunities he had to participate in school and community sport and on how some inclusive sports are only inclusive based on impairment. Connor also shared his ideas about how unstructured event time could be improved by introducing mini coaching sessions to improve competitors’ knowledge and skill in inclusive sports. Such valuable insight may have been missed without Connor’s inclusion in the project, inclusion that was made possible through the accessibility of digital technology.

Dissemination: young people-led showcase

The project culminated in a series of showcases to screen the vlogs and hosted by the co-researchers at their respective schools. The showcase was an opportunity for young people to engage with, and to challenge, the stakeholders who design and deliver their school sport and School Games provision. Similarly, stakeholders who attended the showcases benefitted from the unique insights as they experienced the events vicariously through the co-researcher’s perspectives through the vlogs and spent time discussing the co-researchers’ experiences following the screening.

Reflective vignette 3: showcasing participatory research

Often the participatory element of participatory research fails to extend beyond the data collection aspects of research design (Percy-Smith 2010; Fitzgerald and Jobling 2009; Sharpe, Coates, and Mason 2021). This final vignette reflects on how challenging ethical implications associated with the visual aspect of this project were navigated to provide an opportunity for young people with SEND to have a direct role in disseminating research to stakeholders.

The most complex ethical challenge of this project was the tension between the principles of participatory research (ownership, collaboration, voice), utilising a video-based methodology and the formal ethical classification of young people with SEND as vulnerable thereby resulting in particular expectations by the university ethics approval sub-committee. While I do not dispute that young people with SEND can indeed be vulnerable and their inclusion in research must ensure they are protected as participants, the stringent and inflexible ethical constraints imposed implications on their participation in this project. The primary ethical concern arose over the ownership of the vlog and the sharing of the vlog due to risks of confidentiality breaches. If the young people were able to retain a copy of the vlog and decided to share it online there would be no way to control any widespread re-sharing and it would be impossible to negate any negative repercussions, putting participants ultimately at risk of abuse online.

Vlog ownership is a complex issue to navigate. While I would never want to put any participant at risk of a negative experience because of their participation, I was also concerned that not allowing participants to share their vlog would undermine the principles that underpin participatory research and this project by denying them a central role in dissemination. I was also conscious that I did not want to be a what Fitzgerald (2009) describes as a ‘parasite’ researcher, who enters, takes and leaves without adding value to the community in which they research. I wanted to facilitate opportunities for the co-researchers to share their perspectives and ideas, to have their work recognised and celebrated and finally, for the project to have clear closure. As Nind et al. (2013) suggest, innovation can be employed in research to circumnavigate formal ethical restrictions and create novel solutions. My solution was to innovate the way the research was disseminated so that the participants were included, could share their voice and have some control in the process. The purpose of the vlog was reframed; rather than being the end product, it became a mechanism through which to engage with stakeholders and the showcase was the main purpose and result of the research. Showcases were held at each of the schools and hosted by the co-researchers. Across the three showcases co-researchers selected, invited and welcomed stakeholders from the Youth Sport Trust, Local (School Games) Organising Committee members, Active Partnerships, School Games Organisers, academics, PE teachers, Special Educational Needs Coordinators, teaching assistants, parents/guardians and peers. Co-researchers took the lead from the outset as they welcomed and directed stakeholders to the event space which they had prepared in advance. The young people played to their different strengths and assigned themselves roles including keeping on track of tasks, operating the technology, attending to the stakeholders, and preparing feedback forms. Although the formats differed slightly from school to school, they largely consisted of a welcome given either by the co-researchers with or without my support, the screening of the vlog, questions and answers and networking time whereby some co-researcher groups chose to provide time for refreshments and the closing the event.

The event proved to be an empowering platform for dissemination of the research, the showcases created a protected space for co-researchers and stakeholders to engage in positive discussion about inclusive school sport. The event also challenged traditional power dynamics as young people were the experts and challenged their stakeholders to reconsider their ideas about inclusion. Stakeholders valued the unique opportunity to engage with young people, while parents and guardians expressed the importance of having opportunities for young people with SEND to be given an opportunity and a platform to express themselves. One parent reflected:

“It’s great to hear views of the young people being aired and them given enough time to give those views, and they clearly identified several things that were really great about the Games and things that needed changing. This exercise will have really helped their confidence and hopefully organisers will listen to their comments„ (Parent, School B)

Furthermore, I feel that it is important to draw attention to the successes of the co-researchers who through the showcases created some impact for themselves. Co-researchers from School A, together with their PE teacher formed an inclusive after-school sport club. The club focuses on a different inclusive school each term and is inclusive of and attended by other young people with SEND from nearby schools.

Conclusion

In responding to the call for researchers who use participatory research with young people to be more transparent about the challenges and successes of their experiences, we hope to have offered some interesting insight for researchers who wish to make their own approaches to participatory research more accessible, equitable and in tune with young people. Furthermore, by sharing our innovative approaches that have utilised digital and visual technology to support informing consent, data co-construction and have reframed traditional follow-up focus groups and interviews to explore data with participants we offer some creative inspiration for researchers to develop the methodology and the ways that we make participatory research work for young people with SEND.

We are advocates for the use of participatory research methods to engage young people with SEND in research, we value their flexibility, their space for creativity and innovation as well as the ability to collaborate with young people. We also recognise that these qualities are not inherent to the methodology and for participatory research to satisfy its claims, researchers need to apply a methodological sensibility with a premise of equity and inclusion (Enright and Sullivan 2012; Fitzgerald, Stride, and Enright 2020). The method may also challenge researchers to work out of their comfort zone. I recall the pang of anxiety as I watched the camera equipment that I had spent my entire year of my PhD budget on be excitedly carried off into the hustle and bustle of a large sporting event. Yet, it is only through these types of transparent discussions that we can illuminate the challenges, celebrate the triumphs and examine the promises of the method in a critical way so it can better work for young people with and without SEND.

Making participatory research work for young people is SEND is imperative for our field. For too long the voices of young people with SEND have been marginalised and omitted from research concerning their sporting provisions (Wickman 2015). Young people with SEND are key stakeholders in their own lives; therefore, any such research without them is incomplete (Coates and Vickerman 2013; Vickerman and Maher 2019). The insight presented here indicates that by amplifying and hearing the voices of marginalised young people is possible when research is designed, and undertaken, collaboratively and creatively, but this requires researchers to be prepared to embrace flexibility and unpredictability.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Lesley Sharpe

Lesley Sharpe is a Doctoral Researcher with the School of Sport, Exercise and Health Sciences at Loughborough University. Lesley’s research focusses on the experiences of young people with SEND in inclusive school sport and at the School Games

Janine Coates

Janine Coates is a Senior Lecturer in Qualitative Research Methods at Loughborough University with research expertise in inclusive physical education and sport for young people with special educational needs and disabilities, as well as other marginalised groups of young people.

Carolynne Mason

Carolynne Mason is a Senior Lecturer in Sport Management at Loughborough University with expertise in researching young people’s participation and citizenship and engaging marginalised young people in, and through, sport and physical activity.