Community storytelling: disruptive thinking on community engagement
By Shoba Poduval (UCL Primary Care & Population Health), Alison Hicks (UCL Information Studies), Ross Adamson (University of Brighton), Isobel Creed (University of Brighton) and Malathy Muthu (Skills Enterprise).
Health inequalities in the United Kingdom have been amplified and exposed in recent years. The high and unequal death toll from COVID-19 in the UK reflects the contribution of deprivation, race, gender and geography to poor health as well as their intersections for those who face multiple layers of disadvantage (Build Back Fairer Marmot report, ONS Covid deaths). This heightens the urgency to better understand and address the needs of ethnic minority communities and people living in deprivation, both of whom are historically underserved by research. A key finding from research on the unequal uptake of the COVID-19 vaccine amongst ethnic minority communities has been the role of mistrust in the information provided by government and authority (including academics), and the value that is placed on information shared via community networks or on social media.
As researchers, we need to be alert to these issues if we want to avoid further disengagement from the public and widening inequality experienced by those at the highest risk of poor health.
We suggest that new ways of sharing health information are needed and that the challenge of public mistrust could be an opportunity rather than a threat. Mistrust in research by ethnic minority communities is undoubtedly fuelled, in part, by years of historical and structural discrimination. Whilst researching COVID-19 vaccine uptake we have heard stories of ethnic minority communities feeling neglected and ignored. Whilst targeted outreach campaigns have been proposed as a possible solution to poor uptake in specific communities, this has been met in some instances with scepticism and a response of “You’ve never bothered about anything else” (participant quote).
Historical trauma, in itself, cannot be redressed. But we can learn from other disciplines including the arts, where it has been argued that the only way of dealing with historical trauma is to honour its memory, rather than avoiding it. Here we argue that in health and health research, relationships can only be repaired if those in authority acknowledge and legitimise the experiences of underserved communities rather than meeting them with avoidance or, worse still, denial. We can do this by conducting research that prioritises the needs of these communities, treating participants as equal partners and facilitating honest and open discussions about health experiences and concerns.
These ideas formed the basis of a research project funded by the Grand Challenge of Cultural Understanding to explore the use of ‘digital storytelling’ in underserved communities. Digital stories are 3-to-5-minute films made by participants in a workshop setting. They combine photos, drawings, videos or animations with an audio recording of a scripted story told by the participant. These elements blend to create a powerful verbal and visual narrative of a lived experience. Digital storytelling is an innovative community-based participatory research (CBPR) method that has emerged in the digital era. CBPR is particularly useful for researching the experiences of minorities and communities traditionally underserved by research because it encourages a shift in traditional power dynamics (researcher as ‘expert’), and empowers the experience, understandings and agency of community members. Recommendations from reviews have suggested the use of digital stories to encourage behaviour change for public health issues including vaccination needs further research.
GCCU funding allowed the UCL team to form a cross-disciplinary collaboration with experts in digital storytelling from the University of Brighton. The original aim of the study was to explore experiences of Covid vaccination. However, after meeting and working with community organisation Skills Enterprise, a grass-roots charity supporting vulnerable and marginalised communities in the London borough of Newham (led by MM), the project was adapted to reflect the interests of the eight participants (women from diverse backgrounds living in Newham who were either service-users, volunteers or staff at Skills Enterprise). Digital storytelling is a method which relies on trust-building within the group (including the researchers) using activities to encourage creativity in storytelling. Expertly led by Ross and Isobel we all used personal objects including childhood toys and family photographs to tell stories of our backgrounds and memorable experiences, including experiences of the COVID pandemic. There were many powerful experiences of the pandemic and one member of the group described how “We’re only just unpacking what we’ve been through”. These discussions formed the basis of the stories that were developed over the course of four half-day workshops. Knowledge exchange was facilitated by teaching participants simple writing and digital film-making techniques using iMovie.
The workshops resulted in 8 digital stories which can be found here. The stories were written, recorded, produced and edited by the participants and include experiences of childbirth, young people’s mental health, social isolation, digital exclusion and bereavement. In one story Mala talks about how she was inspired to seek funding to provide wifi and devices for digitally excluded members of her local community when she saw a mother and child standing outside the community centre using the wifi to complete the child’s school work. In another, a participant describes watching the slow decline of a respected member of her community (‘Lilly’) due to dementia, and the feeling of loss this invoked when Lilly no longer recognised her. Our revised aim of the project was that the stories would give us the opportunity to tell stories not previously told, that others can relate to, and that would help us relate to each other. The UCL team are now conducting a follow-up study to assess if these stories can be shared online and if this aim has been achieved. We hope to develop recommendations for how digital storytelling could be used in underserved communities to promote health.
As researchers, we work within the restrictions placed on us by funding, ethical and other structures so that the views of our participants are not always authentically represented. Whilst adapting procedures to account for challenges in recruitment and data collection are often experienced as failures, with this project the adaptations that were made contributed to its success. This was facilitated by strong research support from UCL. In particular, we would like to thank the UCL GCCU team and the UCL Research Ethics Committee for their advice and guidance with the adaptations we made to the project.
We hope you enjoy the stories and look forward to sharing our findings in the near future.
With many thanks to:
Mala and the women of Skills Enterprise
Siobhan Morris, Eleanor Mason and the GCCU team
The Department of Primary Care & Population Health eHealth Unit admin team for finance and admin support (Sophia Hafeez and Jeshma Mehta)
Kois Miah for photography
Further information:
Link to films on GCCU YouTube channel: https://www.youtube.com/watch?v=3V-rMvH8Ymo&list=PLdWLeBlP1Oot8ODA0pxcIkmDxTxSclc-a
Projects from the Digital storytelling team at Brighton: https://blogs.brighton.ac.uk/digitalstorytelling/projects/
