Understanding life with rare conditions using Stop-Motion Storytelling
As part of The Wellcome Trust funded ‘Ethical Preparedness in Genomic Medicine’ project, since 2020 researchers at Brighton and Sussex Medical School have been working with families in the UK affected by rare genetic conditions to explore different ways of creating representations, stories, and conversations about their experiences. The aim was to prompt healthcare professionals to be more prepared and understand what it means to access genomic healthcare services from a patient perspective.
The project is derived from a £1.2M Wellcome Trust Collaborative Award in Humanities and Social Science (2017-2025) between Brighton and Sussex Medical School and the University of Oxford’s Clinical Ethics, Law, and Society (CELS) group.
Researchers worked with regional rare disease networks and support groups to recruit participants with lived experience of rare genetic disease in their families. This group has shaped the research throughout, guiding the development of questions, methods, and dissemination, focusing on participatory ways of research and co-producing research with people with lived experience, rather than conducting research ‘on’, ‘for’, or ‘about’.
The goal throughout this process has been to empower participants to share rich, vivid, and affective creative artefacts that might challenge, reveal, and provoke understandings of the experiences of families affected by rare conditions.
Due to the health contexts of the participants, work was organised online. Working online allowed the team to engage with a geographically dispersed group of participants with significant caring responsibilities, and engage with those affected by particular vulnerabilities in pandemic times.
With encouragement from participants researchers sought to engage with ‘arts-based-research-methods’. In this case, the team have been moved to consider how forms of filmmaking and animation might assist as part of the development of sensitive and participative methodologies appropriate to accessing, revealing and representing the social worlds of families affected by rare genetic conditions.
Animation is a process in which figures are manipulated to appear as moving images. Participatory animation provides a way for participants to discuss their lived experiences, reflect on challenges they face, whilst producing tangible outputs that can travel, enabling stories to gain a wider visibility. Animation making can provide a safe space for exploration and experimentation, allowing people to show their stories, rather than having to tell.
What happened
Conversations with the project’s participatory steering group indicated an interest in, and encouragement to, explore ways of researching using arts-based methods. When suggested the unusual method of stop-motion animation, the idea attracted curiosity, excitement and engagement – though paired with tentative anxieties.
Working with an artist-facilitator the researchers designed a series of workshops to take participants through the process of producing their own stop-motion animation film, step-by-step. This artist had extensive experience of utilising animation in clinical settings and with people who have suffered trauma.
Working online required thinking creatively, and finding ways to adapt a hands-on practice into something that could be taught and facilitated remotely. The researchers were conscious of accommodating the availability of people with often complex caring responsibilities. Ahead of the workshops, participants were sent an animation resource pack containing a variety of materials and equipment, including a smartphone-tripod, wire armatures (a framework around which a character-figure is constructed), a selection of clay, sculpting tools, pens, pencils and paper and card for creating backgrounds.
The first workshop introduced participants to the technology which would be used to create and produce their films, a free smartphone app ‘Stop Motion Studio’, and the basics of animation by practising animating small lumps of clay. This playful process allowed participants to get to grips with the principles, practices and potentials involved in stop-motion storytelling. Subsequent workshops guided participants through the process of crafting their characters, supplying them with various techniques and tips – both editorial and sculptural. During these sessions, participants shared their developing films, receiving feedback and suggestions from the facilitator and wider group.
The researchers aimed to carefully curate expectations: there was no ‘right’ or ‘wrong’ way to do animation. It was not about creating a lengthy feature film, but exploring the stories that could be made and told using animation, and whether that led to making or telling different stories, or telling stories in a different way.
Whilst researchers did not want to impose a theme, they did introduce ‘narrative scaffolding’: that participants begin by creating a protagonist with a task to achieve or a problem to overcome – one participants might relate to.
With participants’ permissions, the workshop sessions were recorded, as a way to capture and reflect on what animating produced discursively (and allow participants to remain involved if they were unable to attend). Once participants had completed their films, the team brought everyone together for film screenings, and to discuss and explore participants’ intensions and experiences of producing their films.
Findings and new knowledge
Participants quickly embraced the potential stop-motion animation offered, though some struggled to decide on the stories they wanted to tell, and spent initial workshops trialling the creation of different characters that might suit different stories, hoping through the playful creation of these characters a narrative thread might emerge they were comfortable to share, but also might provide a valuable commentary.
The stories participants told whilst animating often sparked conversations, recollections and stories of both similarity and solidarity amongst group members. Animation provided a new mode of communication that led to people opening up and bringing different stories to the fore. The process of smoothing and sculpting and sometimes repairing their plasticine in turn smoothed the way for uncomfortable conversations. Participants regularly remarked how ‘doing something so hands on and physical has made us think’.
The method enabled the researchers to give a level of representational agency to participants, and explore topics and themes they themselves wanted to raise and bring attention to. Participants suggested creating their animations had produced new lines of thought and reflection for them, with the creativity involved allowing an ease of representation and participation. People reflected on animating instilling a sense of permissiveness to explore thoughts and themes, and how much they had valued the sense of community, connections and togetherness that emerged during the process. Participants reported having a deadline to deliver their films by had significantly helped them to focus in, even though the researchers felt guilty in imposing such. Rewardingly, participants described feeling empowered by the skills they had acquired. Some had even utilised their newfound animating skills as part of their campaigning and advocacy work. For us, wanting to avoid an extractive research paradigm and create an approach more centred around a participatory ethos, this felt gratifying and worthwhile. As DeLyser and Sui note, in participatory research, ‘“success” emerges not only from knowledge gained by/for the researchers, but also from the development of participants’ knowledge, understandings, skills, and capacities’.
The films served as something of an elicitory device, allowing an exploration of deeper themes and topics participants had already chosen to surface. By embedding the films as part of discussions the ensuing conversations were different than if the researchers had run a conventional focus group.
With researchers increasingly challenged to think more creatively about how they might engage different publics and stakeholders in their work beyond the written form, the filmmaking process has also provided the researchers with a powerful resource for research communication and education, with affordances beyond accounts that remain solely textual.
You can watch a compilation of the participant films here:
Lessons
Whilst the researchers would advocate further experimentation with stop-motion animation within qualitative research, they recognise requesting participants to create a film is a big ask. Animation is a slow process. However, there was a sense from participants that it was both a valuable and enjoyable approach.
For the team, working in a UK context, stop-motion proved a highly accessible way for participants to produce their films. Central to this accessibility was all participants having smartphones, capable of supporting the filmmaking. In another context, this could have been a huge barrier and challenge.
Given that topics explored related to often life-limiting conditions, along with signposting support organisations, the research team also engaged a colleague with professional training in palliative care settings and extensive pastoral experience who could be called upon to support participants and researchers should the experience become challenging. There was also extensive mutual support between participants, who found a sense of solidarity in sharing their experiences and their work.
Online research can also sometimes leave participants feeling disconnected from the researchers, efforts to share resource packs aimed to show appreciation and to help build a sense of occasion around the online research space.
Importantly, this scheme of work was part of an overarching longitudinal programme of work where the researchers had built relationships and trust amongst participants over a period of time.
Additionally, central to the success of the process has been the opportunity to draw on the expertise of an artist with established expertise in animation.
Overall, the ‘Ethical Preparedness in Genomic Medicine’ project has drawn on a variety of diverse creative methodologies to help ensure that the project should speak ‘with’ rather than ‘for’ users of genomic services (see linked case studies). When drawn together, these approaches have helped bring to the fore the often complex, multi-layered lives of people living with genetic conditions, and illuminated how the potential contribution of genomics needs to be understood and interpreted in the much broader context of people living rich and interconnected lives, not simply just ‘being a patient’. The creative and participatory work from the project has been widely disseminated and used as a tool to support and inform healthcare professionals, offering invaluable insights to organisations planning and providing care for families affected by rare disease.
