Participatory-writing 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, focusing on participatory ways of research and co-producing research with people with lived experience, rather than conducting research ‘on’, ‘for’, or ‘about’.
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 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.
Many of the participants had an active blogging practice, and were keen to take part in research in a way that made use of their skills, interests and communicative strengths, but also in learning new ways to hone their writing practice, leading the researchers to think about ways of participatory-writing.
What happened
Working with an author and life-writing tutor, the researchers designed a participatory-writing programme that would encompass an hour-long online facilitated workshop on a weekly basis for 6 weeks.
Week by week, each session involved the professional writing tutor introducing different creative writing exercises, designed to enable both novice and experienced writers to begin to express ideas and thoughts with greater fluency. This included being introduced to, and trying out, techniques such as freewriting, narrative-distancing and writing in response to a given prompt (such as telling the story of a cherished object). At the end of each session, participants were given a creative exercise to tackle in their own time.
During the introduction and after each in-session activity participants were invited to reflect directly on their experience and the content of their writing. Participants were invited, but never pressured, to share their writing with the group by reading a short excerpt. Discussion was guided by the facilitator to focus on the experience of the process of writing, and to prompt the group to notice any thematic similarities or differences in written accounts. The emphasis throughout was on building confidence in expressing lived experience. The intent of the researchers was that participants would read extracts from their writing, and hopefully share it with the research team. However, participants were quickly very vocal about wanting to share their outputs in full among the other members of the group too, and the researchers created a secure online space where people could upload what they had written in the sessions or as part of the ‘homework’. Some participants chose to use word processors, others uploaded photos of their handwritten pages. Reflecting on the impact of reading other people’s writing and noting points of connection became a regular feature of discussions.
Findings and new knowledge
The researchers’ approach was not to extract stories from participants, but enable them to recount the stories that were of importance to them.
Writing, for some topics and participants, created the opportunity to respond carefully and thoughtfully; Participants could spend as long as they needed to complete their written reflections, considering carefully their responses in an atmosphere less structured and pressurised, more creative, more playful.
Participants felt enabled to claim an ownership and validity to their representations of experiences. The written form had an authority and level of definition that empowered people to write about the more-than-medical realities that constitute life with rare genetic conditions. It provided an important outlet for people to voice their narratives—often stories that they felt had no place or might even undermine their expertise. As one participant commented, ‘nobody asks me this stuff ’.
Participatory-writing has enabled the researchers to learn about many of the things that mattered to participants. It has provided an insight into their everyday lives; the complexities, the challenges, the frustrations. Writing (and the interlinked processes of sharing and reading) has allowed participants to voice their narratives and representations in ways that they found to be important and authentic. The researchers drew on dialogical narrative analysis to engage with participants’ written pieces, and highlight what everyday life is like for the people who live with, and care for, those with genetic conditions. The pieces of writing that were produced are powerful, evocative, and revealing. The stories produced through the writing groups unfold the implications of new medical technologies, illuminating how genomics acts to (and likewise, fails to) reconfigure aspects of people’s lives outside of the clinic, while simultaneously existing as a sociotechnical frame that can eclipse the wider contexts, challenges and liveliness of life with rare genetic conditions.
Lessons
The open-endedness of writing presents challenges as well as opportunities. Writing obviously has the potential to be an exclusionary activity, with the possibilities for participation influenced by numerous factors such as class, gender, health and cultural differences, alongside past educational experiences, language fluency, habit, practice and even time available. Participation can be challenging and uncomfortable, and may be prefigured by pre-existing attitudes and aptitudes to the written form—and the sharing thereof.
One of the major challenges of participatory-writing is that what is produced does not lend itself well to the demands and constraints of academic publishing with strict word limits, nor to being read out during a time limited presentation.
The researchers were aware that through writing (and reading others’ stories), people would be brushing up against personal and emotional topics, which could cause, or even reveal, a level of upset and anxiety. The aim was that the writing groups might exist as a ‘safe space’ to explore these narratives. However, while it was hoped participants would find being involved in the research empowering and cathartic, the researchers were keen to stress that the activities did not constitute a form of ‘art therapy’. In preparing for the possibility of distress, the research team appointed a colleague (external to the project) with extensive pastoral experience who could be called on to support participants (and researchers) should the experience become challenging.
Initially, this research was planned with the hope of producing material that would be engaging and informative to healthcare professionals, however, it quickly became apparent that reading other people’s writing was powerful and rewarding for other families affected by rare conditions too.
Another challenge of the method that researchers and participants reflected on were discussions around privacy and confidentiality. Writing brings with it a greater sense of permeance and mobility. It produces a record in ways different to that of conversation. In this project, researchers always ensured that people felt comfortable to not share what they had written—and indeed, some people did not. Throughout the process researchers stressed the optional nature and modular approach to sharing, allowing people to choose what was shared with researchers, what was shared within the group, and what—if anything—could be shared more widely.
Aware of the online and disembodied nature of the groups, the research team had also sent participants a small ‘care package’ of stationery ahead of the meetings to show appreciation and to help build a sense of occasion.
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.
