This week’s blog has been written by Lorenza Nwafor, Research Sister at the Sheffield Teaching Hospitals NHS Foundation Trust.
Art-Based Research (ABR) is an alternative to conventional methods of data collection and analysis. Unlike traditional approaches, ABR allows participants to communicate through visual and literary art, going past language and literacy barriers. This approach prioritises accessibility, participant-driven narratives, and an equitable participant-researcher dynamic. The approach ensures that findings authentically reflect participants’ experiences and insights that might be difficult to express in words.
I have always had an interest in health research, practice, and academia, and was searching for ways to gain experience in these areas. The opportunity to apply for a 7-month secondment as the first Chief Nurse Fellow in my Trust allowed me to explore topics close to my heart such as women’s health, equality, diversity, and inclusion, and to generate knowledge that could impact practice.
The Chief Nurse Fellowship was an initiative aimed at nurses and midwives with research experience who were interested in developing their clinical leadership, research, and academic skills. This fellowship fuelled my desire to pursue more clinical academic research in the future. Throughout the secondment, I was supported by Professor Emeritus Julie McGarry, Professor Parveen Ali, Gail Mills, and Abida Nazir, whose expertise was invaluable in shaping the art-based project we delivered.
Project Background
This project addressed the underrepresentation of South Asian women in health research. These women’s lack of representation results in findings that fail to capture their unique perspectives. By using Arts-Based Research (ABR) methods, the project explored the barriers these women encounter in engaging with research related to menopause.
The study was guided by the principle of “No decision about me without me” (Department of Health and Social Care, 2010) and aligned with the NIHR ‘INCLUDE’ project (2020) in stressing the importance of amplifying underserved voices in healthcare research. I recruited 20 South Asian women by working with a community specialist group. Between February and March 2024, we held three workshops where participants created artifacts such as personas, cut-up poetry, and visual art. These workshops were structured to be culturally sensitive, with interpreters and scheduling designed to accommodate participants’ needs.
A cornerstone of ABR is co-production, which means that participants are not just research subjects but primarily active contributors to the knowledge generated. Since their narratives were unedited, their voices were authentically represented, fostering their sense of ownership over the findings.
Findings Through Personal Stories
In line with McGarry and Hinsliff-Smith (2021), the analysis was driven by participants’ unfiltered personal stories rather than formalised researcher interpretations.
The women developed the persona of “Maryam,” a symbolic character representing middle-aged South Asian women. Maryam embodies the complex dynamics of balancing familial and societal expectations, navigating menopause and health challenges with resilience, while feeling exhausted and isolated. The experiences of menopause are compounded by cultural stigma and lack of support, with many expressing a strong need for recognition and validation within healthcare systems.
Through the workshops, we gained rich insights into the barriers and enablers to engaging with clinical research. The barriers include language, feeling of being rushed, travel and transport, not knowing much about the research and fear of mistakes or developing an illness.
The enablers mentioned by the participants are better ways to promote research, emphasising the benefits to both the individual and the community, incentives, social interaction, clear explanations and sharing research outcomes. The participants also mentioned “know me, understand me” to highlight the need to see them as holistic individuals rather than just focusing on their condition/illness.
The participants appreciated how we listened to what they had said in the previous workshops and prioritised their needs: our third workshop delivered a South-Asian menopause educational session instead of collecting further data as initially planned.
Impact and Moving Forward
The findings from this project are summarised in an animation resource which can be accessed via the QR code. This resource will inform research practitioners about the barriers South Asian women face in engaging with research. The goal is to equip researchers with tools to better engage underserved groups and ensure their inclusion in future studies.
The success of ABR in this project highlights its potential for broader application. By creating a space for authentic expression and co-production, ABR can help bridge the gaps between researchers and underserved communities.
Conclusion
This project reaffirms that underserved groups want to be heard, especially on issues that deeply affect them. It also demonstrates that when research is conducted with communities rather than about them, it becomes not only more inclusive but also richer, more reflective of the real world, and ultimately more impactful.
This project has shown me the impact of innovation, creativity, and inclusivity in nursing and clinical research. Through the Chief Nurse Fellowship, I explored an approach that amplifies the voices of underserved communities and provides practical solutions for their inclusion. I had firsthand experience of how co-producing a project leads participants to positively perceive research.
The project was funded by the National Institute for Health and Care Research (NIHR) Clinical Research Network Yorkshire and Humber, with additional funding from NHS England and support from the NIHR Sheffield Clinical Research Facility. Ethics approval was provided by the University of Sheffield Research Ethics Committee. The views expressed in this publication are those of the author and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care.
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References
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