Co-producing collages to understand life with rare conditions
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, focussing 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 participants, work was organised online. Working online allowed the researchers to engage with a geographically dispersed group of participants with significant caring responsibilities, and engage with those affected by particular vulnerabilities in pandemic times.
The researchers were encouraged by their participants to engage with ‘arts-based-research-methods’. In this case, collage. Collage is the practice of using fragments of found images (or various other materials) and gluing them to create new imagery. Collage has a strong tradition as both an artistic tradition and a mode of qualitative inquiry. Collage wasn’t something the researchers had an initial expertise or familiarity with, but was a choice guided by the participatory ethos of the project.
What happened
Following suggestions from participants, researchers approached a local artist with expertise in collage art. Working together, they designed and recorded two instructional videos introducing participants to the medium, historically, artistically, politically, and practically. They contextualised the history of collage, noting its use as a means of political commentary, often by underrepresented groups.
The team arranged weekly workshops with participants online via Zoom to work on collages. Out of the wider participant pool, seven participants expressed an interest in utilising collage as a way to explore different ways of understanding, (re)presenting, and evoking their experiences.
Online research can sometimes leave participants feeling disconnected from the researchers though, so ahead of meetings, the team sent participants a resource pack containing a cutting mat, a craft knife, glue, scissors, tweezers, paper, card, and a sketch pad. They encouraged participants to stockpile magazines, junk mail, and other image-rich media, along with “everyday paperwork”, whether travel tickets, receipts, or hospital detritus. The team also offered participants a budget to acquire magazines.
With participants’ consent, the workshops were recorded, allowing reflections on the kinds of conversations collaging together produced. The sessions proved popular, and ended up running for 10 weeks – much longer than planned, but participants reported valuing the opportunity to come together both to work on their pieces but also to talk around and about them.
Participants would join and parse through piles of magazines and other media, tearing, cutting, and collecting fragments of images and words that attracted them. The informal nature of the activity, as well as its relative ease, produced a convivial atmosphere where participants chatted openly. Meeting regularly allowed a sense of community to emerge. People produced collages at different paces, but were always keen to share their creations with others. An instant messaging group was set up amongst participants to allow for conversations to continue between sessions, and to facilitate sharing. The researchers also set up a digital collaborative space where people could upload their finished artworks.
Participants were reminded that it was for them to decide on a case-by-case basis what they wished to share. Some work was produced which wasn’t shared with the group or the researchers.
Findings and new knowledge
The collages were not just means by which to initiate conversations, the researchers were committed to using the produced collages as more-than just secondary illustrations. The researchers engaged with ongoing debates on how to appropriately analyse the artefacts produced through arts-based-research-methods.
The collages that were produced offered a means through which to consider the complex and multiple positions which families affected by rare disease interpolate. Particularly, when read together, the collages prompted cross-cutting thematic reflections on motherhood and care, the challenges of having a voice and being heard, and balancing family life and medicalisation.
They also demonstrate the possibilities of collage-art as a way of empowering people to tell stories which are not always straightforward or amenable to easy phrasing or distribution. The opportunity to convey topics and feelings through a medium which was both tentatively open yet conceptually complex, allowed the broaching of sensitive and elusive themes in a safe, expressive, and non-threatening manner.
The casual, pressure-free, no skills-required approach of collage created a space where people felt comfortable to explore aspects of family life and rare disease that have been more resistant to discussion in more interview and focus-group based work, but also, in comparison to textual creative practices.
As Bell reflects, using collage as a participatory method is not a straightforward endeavour: “great care and sensitivity need to be exercised, time spent beforehand ‘setting the scene’, defining the context and aims, making it accessible for all concerned, establishing empathy and a location of trust”.
Ultimately, what the researchers took away from this process is not just the powerful artworks produced, but also the methodological atmosphere created. A strong sense of community emerged through the research, with the weekly meetings becoming a popular and highly sociable space with participants sometimes going to significant trouble to attend.
From the researchers’ perspective, and from the perspectives of participants, doing this work has been tremendously worthwhile, providing new ways of thinking about, understanding, and sharing the complex multifaceted experiences of families affected by rare conditions. By the end of the project the team were convinced that collage, as a practice, allows people’s participation in research to exceed singular or reductive framings; participants were there as artists exploring rare disease with the researchers, rather than as people with rare disease in their families to be interviewed by the researchers.
Lessons
One of the major challenges and limitations encountered is that collage-making is ultimately limited and shaped by the materials available and participants can struggle to “find” the images that are crucial to telling their stories, or be forced to adapt to what visual imagery is available. The lack of imagery of disabled people in the public realm and mass media certainly challenged participants and curtailed their ability to tell certain stories – as well as leading to the reliance on personal photos, which brought new ethical challenges. As Clark argues, a situated ethics of visual scholarship requires a commitment to involving participants in decision-making processes.
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.
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.
Importantly, this scheme of work was part of an overarching longitudinal programme of work where the team had built relationships and trust amongst participants over a period of time.
Involving an artist with expertise in collage art was important as it legitimised the method, and gave participants a sense that they were connecting to a larger tradition and culture.
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.
