The dance and diabetes project: an evolving model for engagement with underserved communities

Abstract

The Dance and Diabetes project took place between 2017 and 2022, and utilised dance to engage South Asian women with diabetes research in Leicester. The rate of diabetes in the British South Asian population is about 20% higher than in White British population and manifests itself between 10-15 years earlier (Gholap et al 2011, Goff 2019). Reducing diabetes is a global priority (WHO 2016) and a particular concern for health and research services in Leicester where there is a large South Asian population. As such a project delivering engagement around diabetes was a strategic priority. The team assembled to deliver the project was multidisciplinary and included: Leicester Diabetes Centre (LDC), NIHR Leicester Biomedical Research Centre (BRC), University of Leicester (UoL), University Hospitals of Leicester NHS Trust (UHL), proximal research and NIHR infrastructure, Aakash Odedra Dance Company, Shiamak Midlands, Moving Together and the participating women. The project was developed over multiple cycles using Sagor’s (2011) model of action research. This entailed, for each stage of the project, clarifying our vision and targets, articulating a theory of action, implementing action and collecting data, and reflecting on the data to plan informed action (Sagor 2011). Whilst every stage featured assessment of impact, in the final cycle focus groups confirmed that participant perspective aligned with our assessment. Transcriptions were analysed using content analysis. Each cycle of action research served to establish credibility and trustworthiness of themes by referring back to existing theory and research, and incorporating new theory and research as it became relevant. The project rapidly and radically transformed. Early success encouraged the project team to greater aspiration. Ongoing impact assessment associated with the action research cycle indicated that the model had potential to impact health inequalities resulting in a refocus of the project on broader impacts. Situational factors, notably inability to source funds and restrictions associated with the COVID-19 pandemic also had a considerable impact on the direction and implementation of the project. The project saw participating women empowered to assume responsibility and authority within the project, taking on roles as organisers and influencers, running discussion sessions around areas of interest, conducting formal community consultations themselves as Community Researchers and even running the project in the absence of funding during the summer of 2019. The different cultures, skills and expertise of project partners established different ways of working, which necessitated consistent renegotiation and communication. Communication supported delivery; it also constructed and reconstructed our understanding of the project and its impacts, and supported the development of cultural competence between project partners. The project found consistent support for O’Mara Eves et als (2013) recommendations for conduct of community engagement, particularly regards a culturally specific approach and relationship building. Dance, owing to its culturally specific nature and potential to create feelings of cohesion (Lakens and Shel 2011, Hove and Risen 2009, Miles Lind and McCrae 2009), was an effective tool to achieve this. The themes identified also reflected the domains identified by Sung et al (2013) as determinants of effective community engagement (flexibility, a sense of belonging, commitment, communication, being genuine, relevance, sustainability). The impact assessment for the project supports assertions that high-quality community engagement can impact health inequalities and provides examples of social justice in action