Participatory Poetry to share experiences of living 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 rare disease networks and support groups to recruit participants with lived experience of rare disease in their families. These individuals have since shaped the research throughout, guiding the development and approach to asking questions, employing methods, and finding strategies for dissemination. 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.
Following encouragement from participants, the researchers sought to engage with ‘arts-based-research-methods’. Arts-based approaches are recognised as elucidating dimensions of health and illness in ways that augment understanding. Initial research utilised creative life writing methods to understand the diverse, variable, and multi-layered everyday lives of families affected by rare conditions. Upon evaluating and reflecting on this work with participants, people explained how much they had enjoyed and valued sharing their narratives with the research team and each other, and being given the opportunity to reflect on their ‘normal’ in a way that broke free of how they were often asked to talk about their experiences by charities or patient associations. Several participants approached the researchers with the idea of expanding on the existing arts-based research through poetry.
What happened
Over a series of online workshops facilitated by an arts practitioner and poet, participants developed a poetic voice for exploring the varying ways that rare disease shapes their lives. Week by week, each session introduced participants to different techniques for creatively expressing lived experience. Beginning with relatively straightforward acrostics and tanka, the group leapt rapidly on to everything from prose poems to sonnets, absorbing various style ‘tricks’ along the way, including the emotional impact of couplets and repetition, portmanteau words, and the power of dropping the reader into a visual gap.
Participants then actively collated the poems choosing which stories and experiences to include, in a co-edited collection entitled Helix of Love, which was published in 2023. Researchers were keen that participants had the opportunity to take a leading role in shaping the final collection and ordering of content. The sense of thematic repetition that emerges powerfully emphasises the pressing nature of some of the similarities of experience for the participants.
For many participants, it was important to have ownership of their words – a way of both voicing and validating their experiences. For certain poems though, participants have chosen to retain their anonymity – particularly for pieces that felt raw, emotive, or risked their children’s anonymity. Having the ability to write without public attribution has enabled participants to share important experiences and reflections.
Findings and new knowledge
Poetry offers a safe, non-judgemental space for people to express themselves, enabling rich and nuanced accounts of lived experiences, hopes, expectations, and worries.
The poems in the collection position human stories and identities alongside the dispassionate prose of clinical communication, reminding readers that rare disease patients have phenotypes beyond their medicalised characteristics, and relationships stronger than those designated by their genealogy. The poems also consider how poetry might help support healthcare professionals to be more ethically prepared for challenging clinical encounters, highlight the importance that language plays in medicine, and underline the value of understanding lived experience in order to aid and enhance clinical practice.
Some participants have gone on to have their poetry published in other places too, speaking to the power of participatory research to equip and empower people beyond the planned scope and timeline of project work.
What has also been inspiring about this work is the way that it’s been received by the medical community, who have been really open about how useful these kinds of affective outputs are. Helix of Love has received critical acclaim from stakeholders across the genomics sector. It has become part of library and museum collections, and was incorporated into the NHS-led International Genomics Education and Training Summit in November 2023 where it was distributed as a training resource to delegates from 49 countries. Since then, researchers have received requests from genomics programmes around the globe to use Helix as ways of embedding a focus on patient and family experiences of rare disease. The work is recognised as offering invaluable insights to those planning and providing care for families affected by rare disease and importantly has allowed parents to share their experiences through channels, and on platforms, they would not have otherwise had access to. Paying attention to narratives can support healthcare professionals to understand additional dimensions of their patients, and hope equipping stakeholders with better understandings of the emotional, social, and cultural aspects affecting families, might lead to more sensitive, patient-centred care. The response so far gives confidence that this may indeed be the case. Stories have lives, stories travel, and stories remain memorable.
You can browse Helix of Love below:
You can watch participants reading their work aloud below:
Lessons
Involving a professional with expertise in writing poetry was particularly important as it legitimised the method, and gave participants a sense that they were connecting to a larger tradition and culture, whilst also equipping them with skills which they could take away from the research.
A particular challenge here was around resource, the costs of printing (and shipping) numerous poetry books was not anticipated. However, both the research team and participants felt it was important that this became a physical resource, rather than just an online collection.
Importantly, this scheme of work was part of an overarching longitudinal programme of work where relationships and trust had been built amongst participants over a period of time. 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.
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.
