Enhancing Disability Research Through Participatory Video: Reflections on a Brazilian Study

Abstract

This paper explores the use of participatory video (PV) in a case study conducted in Arcoverde, Brazil, to address the call for greater participation of individuals with disabilities in health and social care planning and research. PV is grounded in similar concepts to the Disability Rights Movement’s principle of “Nothing About Us, Without Us” and serves as a potential collaborative tool for individuals with disabilities to shape their narratives and contribute to research. The study was part of a multi-methods research project on healthcare access, with the PV research focusing on primary healthcare in Arcoverde. The researcher emphasizes the action-oriented and community-based approach, to foster an inclusive environment through workshops, story circles, and video-making. Ethical considerations prioritize informed consent and identity protection. The results underscore the potential empowering impact of PV, fostering community awareness and practical awareness among participants. The discussion emphasizes the ethical considerations, challenges, and the need for reflexivity in participatory video research.

Introduction

The participatory video (PV) process is a research method that emphasizes the involvement of participants who are often marginalized or overlooked in traditional research methodologies. This approach is important for its focus on eliciting direct responses from participants recognizing the value of their input regardless of the additional time and effort required to include nonverbal individuals. By incorporating art into research PV offers a unique avenue for engagement particularly beneficial for participants who face challenges with discursive (verbal or written) communication (Barone & Eisner, 2011). The inclusion of art as a medium provides a more accessible and expressive platform for these individuals to convey their perspectives and experiences. The integration of digital technologies especially video into our daily lives has made video a compelling tool for engaging people with various sensory impairments in research (Pink, 2007). Video’s multisensorial capacity—the ability to convey information through visual and auditory means—makes it an effective medium for including individuals with diverse sensory needs. This aspect of PV allows for a more inclusive approach ensuring that research processes are accessible to a broader range of participants.

The use and acceptance of participatory visual methods are increasing in social science, organizational research, and public health contexts (Knoblauch et al., 2008; Warren, 2005). Examples of different types of participatory visual methods include drawings, photographs (e.g., photovoice), videos (e.g., participatory video), charts, and maps (Atkinson, 2005; Guillemin, 2004; Oakley et al., 1995; Radley & Taylor, 2003; Rich et al., 2000; Yin, 2003). Participatory visual methods are promoted as methods that are useful in collecting data with people with lived experiences and exploring their perceptions directly, rather than relying solely on data collected and controlled by the researcher (Rich et al., 2000). These approaches therefore also sustain some of the concepts of Paulo Freire who states that dialogue should be promoted through participation to better understand health and its social determinants (Freire, 2005). Engaging individuals from underrepresented sectors of society, including those with a disability, low economic status, advanced age, and different gender, race, or health conditions, can be particularly difficult during policy-making processes (Arnstein, 1969). It has been proposed that participatory visual methods can address these difficulties, by promoting the involvement of people and communities in contemplating and promoting their viewpoints on health, illness, and healthcare across different settings (Lorenz & Kolb, 2009). Another benefit of using participatory visual research is that it supports both the researchers and the people in the focal communities to see problems in a new way and learn from each other (Kolb, 2008; Lorenz & Kolb, 2009; Tritter & McCallum, 2006).

Video is a medium that may be particularly helpful in facilitating the participation of individuals within a research process because it involves different processes, such as storyboarding and filming itself, which does not limit people to written or reading skills. There are many definitions of participatory video (PV), and this paper will work with one of the understandings suggested by Chris High et al. in the “Handbook of Participatory Video” which states that participatory video is “a collaborative approach to working with a group or community in shaping and creating their own film, in order to open spaces for learning and communication and to enable positive change and transformation” (High et al., 2012). High and colleagues argue that when it comes to PV, the focus lies not only on the community’s involvement in media creation but also on its ownership and control over the entire process (High et al., 2012). Moreover, it is an empowering process. Indeed, feminist, action-oriented, and community-based research methods strongly focus on fostering involvement that redefines conventional power dynamics (Katz, 1997; Kindon, 2003). Goldman, Booker, and McDermott (Goldman et al., 2008) explain how PV can “enhance … participatory capacities” and elaborate on how within the process participants actively “negotiate the grounds for participation” (p. 186), suggesting, in line with Freire, that participation is not a given and does not automatically follow from showing up but, rather, must be learned and/or proactively sought (Goldman et al., 2008). This was the guiding philosophy embraced by the researcher of this project. Nevertheless, more evidence is needed to gain a better understanding of how the potential strengths offered by participatory visual methods can be effectively harnessed to enhance disability research.

Participatory approaches are appealing in the disability sector where there is a growing recognition that people with disabilities should have greater engagement in the planning of health and social care as well as in research that often informs this planning (Read & Maslin-Prothero, 2011). The use of participatory methods fits with the Disability Rights Movement’s motto of “Nothing About Us, Without Us” and a human rights–based approach (Charlton, 1998; Kuper et al., 2021). Participatory visual methods have the potential to contribute to tackling the exclusion experienced by people with disabilities in many areas of life, including in research, and support their inherent right to inclusion in research (United Nations, 2006). Participatory visual methods allow participants to express themselves in a range of different ways, allowing them to communicate their thoughts in different ways (Pink, 2007). As well as giving voice to people with disabilities, these approaches potentially also give people who struggle to communicate verbally other ways to express their views.

This article describes an attempt to use PV to explore people with disabilities’ access to care in Brazil. In this study, the participatory visual method—participatory video (PV)—was undertaken as a component of a larger mixed methods research study exploring people with disabilities’ access to healthcare services in Brazil. The larger component of the research took place in São Paulo (urban), Santos (sub-urban), Brasilia (urban), and Arcoverde (rural). This component took place in Arcoverde. In participatory research, where data collection, analysis, and interpretation are intricately interwoven, the traditional practice of segregating methods and results is replaced by an integrated approach. This process demands a heightened level of reflexivity from the researcher. Reflexivity becomes integral to the entire research process—shaping how the study is conducted, comprehended, and reported. In this context, the researcher’s voice is not hidden, but assumes a more prominent role, diverging from the conventional norms found in standard articles. Reflexivity in this process was undertaken through continuous self-examination and critical reflection on the researcher’s positionality, power dynamics, and interactions with participants. Throughout the study, the researcher maintained a reflexivity journal to document her thoughts, biases, and the evolving relationship with the participants. The aim of this paper is to describe the PV process in detail, critically reflecting on the ways to shift power dynamics to foster collaboration between researchers and participants. We offer a comprehensive account detailing the execution of the process, the rationale behind its methodology, challenges faced, lessons learned, and adaptations made.

Participant Sampling

For the initial segment of the wider study—the in-depth interviews reported elsewhere—participants were recruited from healthcare clinics and organizations of persons with disabilities (OPDs), followed by snowball sampling. From this group, eleven individuals were selected to participate in additional elements of the research, specifically the participatory video discussed in this paper. Participants from the wider study were initially asked if they were prepared to be contacted about participating in a PV. Most people did not want to be contacted. Of those who agreed, we looked at their profile to make a purposive sample, as we felt it was important to have people of different ages, impairment types, and genders take part in the process. Those who agreed were contacted again close to the time of the participatory work to explore if they were still interested in taking part and, if so, provide more details. All but one participant contacted agreed to take part. The one who did not could not take part due to her availability. It was important to provide all participants with information that financial support for transportation and food would be provided, so that no one was excluded from the study because of financial or transportation barriers. Accessible transportation was also provided where required. The workshop and filming took place over 4 days. Brazilian ethics approval meant that no one could be paid for their time for participating. When we asked people who agreed to participate to speculate on why others did not, they reported having their own reservations about being in front of the camera and uncertainty about their control over the narrative. Although potential participants were provided with comprehensive information about the participatory video (PV) process, including its purpose, activities involved, and potential benefits and risks, some still felt uneasy about being filmed and unsure about their level of influence. This feedback underscores the need for additional information and reassurance.

Welcoming

A range of approaches were incorporated to promote active participation to try and achieve the aim of shifting power dynamics and encouraging voice. One strategy was not to set up the room where the workshop would take place, in advance. Instead, the workshop venue was organized collectively as participants arrived.

Additionally, the participants were asked to assist in distributing papers and pens across the tables, and setting up the camera, ensuring that everyone had the necessary materials. Once all the necessary preparations were completed, participants gathered around for introductions, sharing their names and, as an icebreaker, what breakfast they had. This simple icebreaker activity fostered a friendly and inclusive environment and helped to build rapport among the participants.

However, the challenge that faced this project, like many participative projects, is that although the aim was for participants to lead as much as possible, the topic still had to fit within the wider project, which is on primary healthcare access. Quotations were put up on the wall, which contained anonymized transcripts from the in-depth interviews, mostly consisting of quotations that they themselves had shared during the interviews. The goal behind this was to give participants a chance to see what others had said, and to analyze and reflect together, and work as co-researchers. This differed from conventional interviews, where participants were only asked about their own experiences. The researcher encouraged participants to read the quotes and offered support to visually impaired participants in reading them.

The researcher put in place several techniques to try and ensure that participants were feeling comfortable with the camera. It is the researcher’s responsibility to mitigate the degree to which participants are self-aware of the camera. Techniques included introducing the camera to the participants straightaway and letting them engage with it. During the welcoming stage of the workshop, the participants were asked to set up the camera, as guided by the researcher, so that they had some control over the camera. By connecting the camera to a TV, everyone had the opportunity to observe the filming process in real time. Those with a visual impairment were informed about the filming. Emphasis was placed on utilizing both the audio and visual components of the video, allowing each participant to contribute using the sensory mode that best complemented their ability to describe their story. Additionally, it was important to build trust between the researcher and participant and bring up possible audiences once the camera is on, for participants to always have awareness and control. This gives them a more authentic hold on how they would like to be represented. This is discussed in more depth under ethical considerations.

Story Circles

After the introductions, the researcher encouraged participants to share if the quotes from the posters resonated with them, explaining their reasons behind their choices. This exercise aimed to create a supportive environment that facilitated open discussions about their personal experiences. To capture the key words and ideas expressed, there were A3-sized sheets of papers available on the tables. To foster participation in this stage of the workshop, two participants were designated as the note-taker and illustrator, so that the main themes that might be included in the films were recorded. Over time, the researcher observed that the participants started feeling more comfortable and sharing experiences beyond what the posters started eliciting. Through discussions, it was observed that participants “piggybacked” on other people’s stories leading to different directions for exploring a theme (Luke & Goodrich, 2019).

After the first story circle session, participants were given turns to practise camera usage and interviewing techniques. Each session involved one person taking on the role of the interviewee, another handling the microphone and asking questions, and a third operating the camera and monitoring sound. All eleven participants, as well as the facilitator, took turns participating in these different roles, to promote a sense of equality and reduce any power imbalances. Participants were given the lead in choosing any question to ask the person they were interviewing, to continue promoting a collegial and feminist approach to the process (Kindon, 2003). It was felt important that every step of the PV process provided a space for autonomy and expression. Participants were asked a range of questions, such as “Tell me about your mother,” “What is your biggest challenge in health today?”, and “How do you describe disability?”. This allowed all participants to gain hands-on experience in filming and interviewing. Later, they collectively watched the recorded videos to provide constructive feedback on various aspects including framing, audio quality, and overall effectiveness. This feedback session helped participants understand how filming translates into video content.

The practice sessions were also designed to enable participants to understand the different ways each of them could contribute to the filming process, and participants identifying different roles for themselves were observed over time. For example, one participant, Daniele, quickly demonstrated a talent for interviewing, while another, Josefa, expressed a preference for operating the camera. Petra, a participant with an intellectual impairment, contributed by showing the importance of well-angled ramps and the material of the pavement while someone filmed her; Gabriel helped with filming and storyboarding, highlighting the need for better transportation.

A second story session was held the following day, after participants had the opportunity to go home and reflect on the discussions from the previous day. The focus of the second story circle was on healthcare and disabilities, moving beyond personal experiences to engage in a broader reflection on the reasons why people with disabilities may face poorer health outcomes. Both story circles were organized so that participants had the flexibility to contribute by speaking, by writing, or through nonverbal communication. For example, Nadjane, who had experienced a stroke and lost her ability to write or walk, used drawings and gesticulation to express that she suffered greatly from stigma. Her son, who had given the in-depth interview because of his ability to communicate verbally, had focused on another of her barriers, transportation, but did not mention the other barrier important to Nadjane—stigma. Nadjane’s contribution on stigma led to other participants expanding on their experiences, revealing new themes that would have otherwise been missed and did not emerge in the in-depth interview component of the research project. For instance, two caregivers described how in pre-pandemic times, people moved away from their children with disabilities at a healthcare center waiting area, as if their disabilities were contagious. From a caregiver perspective, this process was different to their usual interactions as it allowed for various types of participation and provided participants with more time. In those usual interactions, caregivers often found themselves needing to intervene, recognizing that others might lack the patience to truly understand and listen to them.

I am used to answering on behalf of Gabriel because I know people don’t have the patience or the interest to try to understand him. It’s a way of protecting him. (Tancleide, mother of Gabriel, who is on the autism spectrum)

As the workshop progressed, the researcher observed that Tancleide shifted away from this approach. She started giving her son more space to speak on his behalf, as she noticed the researcher and other participants were interested in his point of view and were willing to listen.

Storyboarding

A storyboard is a visual representation that depicts the key scenes and shots of a film or video. It helps filmmakers plan and organize their shots before they start filming. Each storyboard panel has a simple drawing with notes about things like camera angles, movements, lighting, and dialogue, making it a helpful tool for the video-making process. During the storyboarding stage, the focus shifted toward designing the content for the video and determining suitable visual representations. During this brainstorming session, a collective decision was made to establish a clear objective by crafting a unifying title, “Respect for others.”

While most of the participants contributed to identifying the storylines, the actual creation of storyboards involved four specific participants. For this task, two participants who had been relatively quiet during the discussion felt more confident to participate actively in the drawing process, with one of them collaborating with their mother. The use of a larger storyboard format enabled the inclusion of people who are partially sighted, making it more accessible for a diverse group of participants. The team comprised two young adults with an intellectual impairment, one of their mothers, and a woman with partial sight. They crafted a storyboard to serve as a comprehensive guide for the filming process, to ensure that all vital components were included, while also serving as a checkpoint to prevent any elements from being overlooked. In the middle of the storyboard were the primary audiences they aimed to reach, which were healthcare professionals and government officials. This strategic placement ensured a constant focus on effectively conveying the intended message to these key audiences.

Like many participatory approaches, there was a challenge in aligning participants’ ideas with the anticipated direction set at the beginning of the research. For instance, although the project initially emphasized primary healthcare, participants expressed a desire to discuss rehabilitation in certain instances. The researcher allowed flexibility, providing the necessary space for participants to shape the conversation according to their interests and perspectives, while making sure primary healthcare was still addressed. Eventually, everyone was able to have their issue addressed, because there was not a strict limit on the number of panels in the storyboard. Some participants believed that certain themes warranted more than one scene for effective representation. Initially, the theme of stigma was added to the storyboard to be portrayed through a re-enactment of Nadjane’s stigma experience. However, the group decided to add an additional scene to depict another facet of stigma—the story of Tancleide and Gabriel.

Video-Making

The subsequent filming sessions were conducted after storyboarding. Filming took place in three distinct locations decided by the participants: the workshop venue, the rehabilitation clinic, and in front of a primary healthcare center. By incorporating these diverse settings, participants aimed to capture a comprehensive perspective on the topics discussed during the workshop and support reflection. While the researcher suggested different styles, such as “acting” or more use of creative resources such as drawing, the group was drawn toward a more “video reporting” style, a style familiar to many people in Brazil. One participant, Marcelino, who is a wheelchair user, mentioned the importance of accessible transportation throughout the PV and the in-depth interviews and realized he had forgotten to mention an important barrier—the width of doors—while they were filming. He struggled to enter the building because one of the doors was shut. He mentioned “It’s so common place I forget to mention it.” On a similar note, during the last group discussion, the participants explained how they forget that there is a need to advocate for their needs due to barriers becoming so normalized in daily life. Additionally, hearing from others was very important, to confirm their perspectives and experiences.

We go through these struggles every single day, only now am I realizing that other people go through the same things. (Catarina, Petra’s mother, who has an intellectual impairment)

Editing

On the third day, the editing process commenced, although there remained some components still to be filmed. It was vital for the participants to observe how the story was coming together and identify any missing elements and to understand how they are being represented through the film so far, providing an option of reshooting or changing anything they were uncomfortable with. To facilitate this, the researcher connected a laptop to a TV screen with speakers, allowing everyone to view and listen the footage collectively. Following the initial screening, the participants watched the footage again, this time with specific focus on identifying any gaps or missing elements. This inclusive process allowed participants to both listen and watch, enabling them to contribute their ideas regarding missing images, creative editing techniques, and text. The collaborative atmosphere fostered a sense of ownership and engagement among the participants. For example, Petra’s mother suggested, “We should show an example of what an accessible ramp looks like, how about we film someone going up the ramp at [the local rehabilitation center]?”.

Furthermore, the participants collectively decided on a song that would accompany the video. They opted for an inspirational gospel song, a choice that resonated with most of the participants. An instrumental version of the song was added to the video so that it did not overtake the voices of participants. This decision further enhanced the inclusive nature of the project, ensuring that everyone’s preferences were considered. After all the components were completed, the following day, the participants gathered to watch the final version of the video.

Participants did not receive training on using editing software during the project, as film editing is a complex technical task that requires sophisticated software. Consequently, the researcher served as the primary editor. This decision was driven by time constraints and resource limitations. The researcher did not choose the video content; participants made those decisions. The researcher focused on the technical aspects, such as combining footage, adding text and transitions, and ensuring the selected music complemented the video. In the future, it could be beneficial to explore ways to offer participants basic training in editing software. This may allow participants to have a more comprehensive understanding of the entire video production process and enable them to lead the editing stage as well.

Ethical Considerations

This study had ethical approval from ethics committees in the United Kingdom and Brazil. Informed consent was prioritized throughout the process. The initial consent form was signed by participants when they agreed to take part in the PV study. This form outlined the purpose, procedures, and potential risks or benefits associated with their involvement. Once the video was completed, a second consent form was presented to participants. This form was signed after they had reviewed the final product. It addressed additional privacy concerns and provided options for pseudonyms or face blurring. During this process, participants were given time to review the video, discuss any concerns, and request additional edits or modifications. All participants expressed their preference to keep their faces unblurred and to have their real first names included in the video. This might be because the participants who already chose to take part in the PV were comfortable with the idea of being on video, while those who turned down the process may have not been.

While participants engaged in two formal consent processes, involving the provision of information sheets and consent forms akin to those utilized in most research projects, the management of consent is different from conventional research procedures. Typically, participants sign a consent form for an interview, but they are not involved in subsequent analyses, outputs, and dissemination. Although certain research projects may carry out validation meetings or share results with participants, their involvement often ends with the provision of information during interviews. However, the PV process stands in contrast to this conventional approach. The researcher consciously emphasized that consent goes beyond simply signing a document. It was crucial to ensure that participants comprehended both the process and what was on the final video, including its potential audience, providing informed consent on how to use the video. In the discussions, the content and style of the video were discussed and the researcher asked the participants to reflect on how they wanted themselves and the messages to be perceived by the different audiences. The researcher also shared her understanding of how these audiences might interpret the videos, thus balancing between not censoring content and ensuring the video respectfully represents the participants (Gregory, 2020). This allowed participants to have a say in the dissemination process, such as choosing preferred platforms for sharing their images and videos.

The researcher was mindful of potential power dynamics and the influence of her role on the participatory process. To mitigate these dynamics, participants were given control over setting up the space, as described earlier, ensuring that each person had a role and no one was left to simply sit and observe. This approach immediately shifted the balance of power. Additionally, each participant was given space to speak during the sessions. For those who were less vocal, the researcher engaged them during breaks to discuss the topics individually, creating a more comfortable environment for their input.

During the practice filming sessions, participants took turns in different roles, allowing everyone to experience various positions related to the camera, which helped foster a sense of ownership and understanding of the process. Trust-building was also prioritized by explaining the full scope of the study, including the research questions, the team, the intended use of the results, and how the video contributed to the larger project. Emphasizing the collaborative nature of the research, the researcher made it clear that while she may have expertise in video-making, she did not possess the lived experience of disability and the nuances of healthcare access, thereby acknowledging that the participants were experts themselves.

Dissemination

Through the workshop, conversations emerged regarding how the participants wished their videos to be utilized, both by the researcher and by the participants themselves. As a group, we discussed the value of highlighting the barriers they face in accessing healthcare services, and participants expressed a strong desire to share the videos with their healthcare workers, including primary healthcare providers and rehabilitation specialists. The videos were uploaded to Vimeo as unlisted, ensuring that only individuals with the specific link could access them. Participants were provided with the links, enabling them to share the videos as freely and with whomever as they desired. Two participants showed the videos to healthcare professionals, one from primary healthcare care and one in her local rehabilitation center. They also shared the videos with family members, aiming to foster a broader understanding that their experiences are not isolated but shared by others with disabilities. The participants emphasized their interest in showcasing the video in university settings and training programs, with the aim of educating current and future healthcare professionals and policymakers. They expressed a keen desire for the video to reach as many people as possible, indicating their eagerness for it to be shared on social media platforms.

Other people will be able to see that my complaints are not just my own, but that other people with disabilities go through the same struggles. (Daniele, 40, female, visually impaired)

An event was organized in Brasilia, Brazil, to facilitate the dissemination process of the wider project, in March 2023. This 2-day-long event brought together key stakeholders, including representatives from the Ministry of Health, researchers, students, and OPDs. Through the video, attendees were able to hear the participants’ first-hand experiences and witness their challenges, such as struggling with narrow doors, uneven pavements, and the re-enactment of stigmatization. The video sparked meaningful conversations among the stakeholders present, leading to discussions about placing people with disabilities at the forefront of research and highlighting the importance of addressing their specific needs and concerns within healthcare systems. Overall, we perceived that the participants’ video provided a valuable perspective that resonated deeply with the attendees, which, along with the rest of the study, led to the development of recommendations for a more inclusive and informed approach to healthcare provision. Unfortunately, no funding was available to bring participants from Pernambuco to Brasilia. The participants who took part were invited to watch the dissemination event and were informed of the recommendations that were developed.

It was very powerful to hear myself on the video, talking about the needs of people with disabilities, knowing that people in the audience can hopefully do something about it. (Daniele, 40, female, visual impairment)

Daniele’s statement contemplates the notion, suggested by certain authors, that the produced videos serve as a tool for advocacy—a chance to engage in dialogue with policymakers and potentially sway their perspectives (Lunch & Lunch, 2006; Wheeler, 2009).

Discussion

In this article, the focus is on the process of conducting a PV with a group of people with disabilities to explore their experiences of healthcare access in Brazil. The aim of the study was to explore both healthcare access as well as foster greater direct engagement with adults with disabilities, providing them with the platform to articulate their first-hand experiences of healthcare access. Several key themes emerged from the study.

The PV process in this study highlighted several key learnings that align with and expand existing knowledge on PV. One critical learning was the importance of inclusivity and flexibility in participatory methods. Previous studies have noted the need for adaptable approaches to ensure participant comfort and engagement (Capstick, 2012; Peters et al., 2016). Our study reinforces this, demonstrating that providing participants with autonomy in decision-making processes enhances their sense of ownership and investment in the project.

Moreover, the emphasis on nonverbal communication methods through art and video proved crucial in engaging participants with varying abilities. This finding supports Barone and Eisner’s (2011) assertion that incorporating art into research provides a more accessible platform for individuals with communication challenges. By leveraging multisensorial capacities, as discussed by Pink (2007), PV in our study effectively included individuals with diverse sensory needs, thereby broadening the scope of participatory research.

Additionally, the study underscored the ethical dimensions of PV, particularly concerning power dynamics and representation. High et al. (2012) and Gregory (2020) emphasize the necessity of addressing power imbalances and ensuring participant control over the narrative. Our approach, which involved participants in every stage from storyboarding to editing, echoes this sentiment and showcases the empowering potential of PV. Addressing power dynamics and representation required the researcher in this study to consciously hand over decision-making power to the participants. This involved ongoing self-reflection on the extent of the researcher’s involvement and her role as a facilitator. The aim was to support participants in collecting and presenting their data rather than imposing ideas. This process acknowledged that participants, who might be more accustomed to giving interviews or being in less empowered positions, needed encouragement to take ownership and lead the video-making process. Empowering individuals to engage in different stages of the process ensured that participation was not only holistic but also tailored to their preferences. Therefore, it was important to provide them with a clear understanding of the project and the steps involved in the participatory video process. Building their confidence to film, interview, and record sound allowed them to make informed decisions about their level of involvement and what that involvement would be.

Furthermore, the iterative nature of PV facilitated deeper reflections among participants, as they were able to engage with the content over several days. This prolonged engagement contrasts with traditional interview methodologies and aligns with findings by Bezzina (2023) that participatory methods can offer a more ethical and reflective research process. Through the various stages of sharing their stories, discussing access to healthcare, and determining what to include in the film, participants in our study engaged in ongoing reflection on both their individual and collective experiences, and how best to represent them in the film. The ability to continuously revisit and revise their contributions allowed participants to express more nuanced perspectives, thereby enriching the research outcomes.

The collaborative editing process, although constrained by technical limitations, provided valuable insights into the importance of participant involvement in post-production stages. While technical expertise is required for editing, future research should explore ways to train participants in basic editing skills, enhancing their understanding and control over the final product (Goldman et al., 2008).

Facilitated Inclusive Participation

What makes a video project “participatory” is challenging to define and probably is on a continuum. For this project, the topic was clearly defined by the research team, but there was considerable effort to let participants take ownership of the process throughout the workshop, such as setting up the equipment and deciding how they would be involved in the process. The workshop was carefully planned to be accessible and adapted to needs that arose, for example, when one of the participants was nonverbal and could not write.

It was important to acknowledge that this might lead to some deviation from the initial focus on primary healthcare and a shift toward rehabilitation. While it is important to acknowledge the initial focus on primary healthcare, the willingness to adapt and accommodate the participants’ evolving ideas ensured that the video reflected their genuine engagement and sense of ownership. This approach fostered a stronger sense of empowerment and inclusivity among the participants, ultimately enhancing the overall quality and authenticity of the content. Three other projects that conducted PVs with people with disabilities expressed the need to adapt the process to the participants’ needs (Buchanan & Murray, 2012; Capstick, 2012; Peters et al., 2016). They mention the importance of slowing the pace and creating a more flexible process to adapt to the participants’ needs. Capstick (2012) mentions that when conducting a PV process with people with disabilities, reflection and attention are needed to make it more inclusive and accessible.

The PV process is a research method that emphasizes the involvement of participants who are often marginalized or overlooked in traditional research methodologies. This approach is important for its focus on eliciting direct responses from participants, recognizing the value of their input regardless of the additional time and effort required to include nonverbal individuals. By incorporating art into research, PV offers a unique avenue for engagement, particularly beneficial for participants who face challenges with discursive (verbal or written) communication (Barone & Eisner, 2011). The inclusion of art as a medium provides a more accessible and expressive platform for these individuals to convey their perspectives and experiences. The integration of digital technologies, especially video, into our daily lives has made video a compelling tool for engaging people with various sensory impairments in research (Pink, 2007). Video’s multisensorial capacity—the ability to convey information through visual and auditory means—makes it an effective medium for the inclusion of individuals with diverse sensory needs. This aspect of PV allows for a more inclusive approach, ensuring that research processes are accessible to a broader range of participants.

Within the study in Brazil, the PV process involved all participants actively in creating content, such as filming, interviewing, and storyboarding. This hands-on experience was pivotal for fostering a sense of involvement and ownership among participants. Peters et al. (2016) who employed a PV process with people affected by leprosy emphasized the transformative potential of PV. Participants in Peters’ study, who had never imagined themselves producing media content, expressed a newfound sense of pride and accomplishment: “People like me do not make things like that.” Similarly, caregivers and family members witnessed a positive impact on participants, like Tancleide, who felt proud seeing her son actively participating in the filmmaking process. These observations highlight the potential empowering nature of the PV process. By enabling participants to take an active role in the creation of content, PV challenges preconceived notions of capability and contribution among marginalized groups. It not only provides a platform for expressing individual and collective experiences but also fosters a sense of achievement and visibility for participants who are often sidelined. Through PV, research becomes a collaborative and inclusive endeavor, bridging gaps between researchers and participants and enriching the research outcomes with diverse perspectives and voices.

The advantage of this method is that participants can relate to the product that is produced. Participants were given the autonomy to share the video as they wished among their local community, which they shared with healthcare professionals and family members. Additionally, they were virtually present during the dissemination event and informed of the final recommendations that were developed because of the findings. This not only supports what McClimens (2008) said about giving credit to authors when sharing research, but it also makes sure that we involve these participants in the dissemination process.

The participants in the study participated more holistically in the PV than in the interviews, giving input in different steps of the research process, as co-researchers (Freire, 2005). All participants were involved in one way or another, with the PV process giving space for additional accessibility to better include people with disabilities in research. They were able to reflect and engage on the topic over a prolonged period, unlike more conventional methodologies such as interviews that often only take an hour or at the most two. An author who conducted a project in Burkina Faso concluded this to be a more ethical method than traditional research methods, as it gives people with disabilities different tools (through speaking, filming, storyboarding, or acting) to make their voice heard (Bezzina, 2023). A PV produced with participants with leprosy also identified participation as a powerful tool for stigma reduction, increasing the sense of togetherness and increasing self-esteem (Peters et al., 2016).

The broader challenges within PV, underscore concerns about power dynamics, the assumption of a homogeneous community, and the potential exclusion of some individuals with disabilities (Bezzina, 2023). Managing mutual respect and power dynamics among the participants is essential, particularly when some participants are hesitant to engage. It is important to ensure they understand that their presence alone is valued, even if they were to choose not to participate actively. In our study, one participant was notably quieter, potentially due to her older age and advanced visual impairment and appeared uncomfortable at first. To address this, the researcher took steps to make her feel valued by actively listening and assigning her roles that she found comfortable. For instance, when she arrived early one morning, the researcher explained the breakfast setup and start time for the day, asking her to relay this information to others as they arrived. She embraced this role with ease. Additionally, it was observed that as the researcher modelled inclusive behaviors, other participants mirrored this attitude, creating a more supportive environment for all. It is important to acknowledge and reflect on the possible power dynamics concerning participants’ involvement (Bezzina, 2023; Sitter, 2015). Researchers facilitating PV workshops need to emphasize the complex challenges inherent in this method, addressing aspects such as representation, power dynamics, ethical considerations, and the distinctive social processes integral to PV production. It is crucial to prioritize reflexivity, inclusivity, and nuanced comprehension of power dynamics within the research paradigm of PV. The process also requires time. Successfully utilizing PV necessitates thoughtful evaluation of the researcher’s proficiency in videography and their capacity to guide participants in a genuinely participatory fashion. There may be challenges linked to participant involvement and the need for a comprehensive understanding of their role in the overall methodology (Sitter, 2015).

Challenges in Representation and Ethics

One important consideration is the expertise of the researcher on videography and on providing training to participants with no experience. First of all, it was crucial to acknowledge voyeurism or the risk of representation that does not respect participants (Blunt & Wills, 2001). Sarah Pink suggests taking a feminist and collaborative approach to PV, which brings the role of the researcher and the participants closer together and can lead to empowerment and democratization (Pink, 2001). Additionally, it is necessary to build trust between the researcher and participants (Pink, 2008) and discuss dissemination and possible audiences before filming, for participants to always have their audience in mind. This gives them a more authentic hold on how they would like to be represented (Gregory, 2020). The worry about confidentiality and the use of their information can be partially mitigated by always reminding participants who the audience may be and making sure they are making informed decisions about what to film (Kindon, 2003). Katherine Gregory suggests the need for ongoing discussions about confidentiality, as well as addressing broader challenges within PV, such as power dynamics and the potential exclusion of individuals with disabilities. Emphasis needs to be placed on maintaining reflexivity, inclusivity, and nuanced understanding of power dynamics throughout the research paradigm of PV (Gregory, 2020).

As a video ethnographer or video-maker and researcher, there may be what Gregory calls an “interdisciplinary tension” where, as an anthropologist, you may want to capture the closest version of reality, but as a video-maker, you may be hyper-aware of the final product (Kindon, 2003). This is something that PV itself tackles, as the participants are the ones who film. However, it is important for the researcher to take a step back and make sure the participants are representing themselves as they want, and not have the influence of the researcher who wants to fit a biased aesthetic (Gregory, 2020). It is also important to acknowledge that video editing and interpretation can introduce bias. Critics argue that the selection of specific scenes or moments for analysis may not accurately represent the overall context or culture being studied, leading to misinterpretations (Mhando, 2005). Some argue that the act of recording and later analyzing cultural practices may be culturally insensitive. It raises questions about who controls the narrative and how the recorded material is used, potentially reinforcing stereotypes or misrepresenting the community (Mhando, 2005). It is also crucial to acknowledge that not all communities may have equal access to or comfort with technology. Using video assumes a certain level of technological literacy and may exclude some groups from being accurately represented in ethnographic studies. It may not be an adequate tool in some studies (Mhando, 2005).

Social Processes and Community Dynamics

The PV process, by enabling participants to take an active role in content creation, embodies the principles discussed by both Rowlands (1997) and Campbell (2014) regarding the distribution and exercise of power. It serves as a practical example of how understanding power dynamics—whether through a materialist lens focusing on societal structures or a social constructionist lens emphasizing fluid, relational power—can inform participatory approaches. PV has the potential to challenge traditional power hierarchies by providing marginalized groups with a platform to express their experiences and perspectives, thereby fostering a sense of achievement and visibility for those often sidelined. Through the lens of Freire’s materialist conception of power, PV can be seen as a tool for “conscientization,” enabling participants to recognize and articulate the structural barriers—such as race, gender, age, or social class—that affect their lives. This recognition empowers participants to contribute to the research process actively, challenging the structures that perpetuate inequality. During our study, throughout the various moments of sharing their stories, discussing access to healthcare, and deciding what to include in the film, participants engaged in a repeated cycle of reflection and learning. This ongoing dialogue not only deepened their understanding of their own lived experiences but also highlighted the common challenges they faced as a collective. As they contemplated how best to represent their experiences on film to policymakers and their other target audiences, they began to critically examine the structural barriers impacting their lives. This iterative process of storytelling, discussion, and decision-making served as a pathway to “conscientization,” fostering a sense of empowerment and agency in challenging the inequalities they confronted.

The PV process has the potential to not only bridge gaps between researchers and participants, enriching research outcomes with diverse perspectives and voices, but also acts as a catalyst for rethinking and redistributing power within community participation and societal structures. It highlights the critical role of understanding power dynamics in designing and implementing participatory research methodologies that are truly inclusive and empowering for all involved. The PV process can stimulate what Giddens (1984) calls the “practical consciousness,” which “consists of all the things which actors know tacitly about how to ‘go on’ in the contexts of social life without being able to give them direct discursive expression,” as opposed to “discursive consciousness” which “refers to what agents are able to say, both to themselves and to others, about their own action.”

Howarth (2006) proposed that through engaging in dialogue, debate, and critique, members of a stigmatized group can gain awareness of their roles as active participants rather than passive subjects. She emphasized that alone the individual cannot develop the confidence and emotional strength to challenge stigma but can do so in combination with others (Buchanan & Murray, 2012). Participants reported this as part of the PV workshop conducted in Colombia, where participants became aware of their needs being a collective need and not just individual. It was meaningful and empowering to them to hear others who go through similar barriers (Reichenberger et al., 2022). Other PV projects have been shown to have a similar social impact, where the process facilitates the shift in dynamics between people within a community. As mentioned by Chris High et al., “Although making a film good enough to show others was a common goal, the social process of making the film and the benefits that came from it in terms of learning and improving relationships were experienced as far more important” (High et al., 2012).

Conclusion

In this paper, a participatory video (PV) process among adults with disabilities in Arcoverde is described in detail. Participants actively engaged in filming, interviewing, or storyboarding. The process heightened participants’ collective awareness, fostering empowerment through shared barriers. Facilitator reflections emphasize the importance of adapting to participants’ needs, promoting inclusivity, and addressing potential biases in video production.

The study suggests that participatory visual methods can play an important role in disability research as the PV approach highlights the holistic involvement of participants, positioning them as co-researchers. The PV process has the potential to provide individuals with disabilities diverse tools for self-expression. The researchers’ reflections underscore considerations such as expertise, voyeuristic risks, and interdisciplinary tensions. The discussion emphasizes ongoing dialogues, reflexivity, and ethical considerations throughout the research process, addressing challenges related to power dynamics, community assumptions, and the potential exclusion of individuals with disabilities. Overall, the paper advocates for a nuanced understanding of power dynamics, prioritizing reflexivity, inclusivity, and ethical awareness in PV research. The methodology has potential—but like all research methods needs funds, resources, and time.

Supplemental Material

Supplemental Material - Enhancing Disability Research Through Participatory Video: Reflections on a Brazilian Study

Supplemental Material for Enhancing Disability Research Through Participatory Video: Reflections on a Brazilian Study by Veronika Reichenberger, Loveday Penn-Kekana, Shaffa Hameed, Tom Shakespeare, and Hannah Kuper in Qualitative Health Research