Participatory research activities have become a popular method to address the needs and aspirations of communities more effectively. Participatory research involves active collaboration between the researcher(s) and the people affected by the research, influencing how we design, deliver and develop our research.
The approach aspires to reduce power dynamics, build trust between researchers and the community, and ensure that research outcomes remain relevant to the communities we serve
When working with disadvantaged and underserved communities, it can give participants a voice in shaping the research process and outcomes to tackle some of the health and social care inequalities they are facing. However, ensuring that communities are involved in an ethical, inclusive and reciprocal way, can be a challenging task to navigate.
A two-day seminar facilitated by the Centre for Ethnic Health Research at the University of Leicester aimed to increase the confidence and competence of researchers and practitioners to engage with people from ethnic minorities and other communities. It provided practical tips and case studies on how to conduct research that genuinely serves communities’ best interests and engage with people from diverse communities in a more thoughtful and reflective manner.
The first day of the seminar covered various aspects around language and definitions, including the protected characteristics defined under the UK Equality Act 2010, the different forms of discrimination people may encounter, other relevant legislation, and general duty aims such as the Public Sector Equality Duty of 2011. It also covered various types of biases that can impact equality of opportunity in research and practice and encouraged us participants to reflect on our own biases and experiences.
On the second day, we divided into groups to explore strategies to facilitate better engagement before, during and after the research. We discussed the need for more preparation, and taking time to understand the unique needs of the communities we are working with. This also included the use of more inclusive language, avoiding jargon and acronyms that may be unfamiliar or exclusionary to participants. We found that working with peer researchers or experts by experience, has helped to reduce misunderstandings and generate more relevant research.
The seminar concluded with a broad discussion and reflections on the strategies that came up in our discussions. We discussed the need for more preparation, and taking time to understand the unique needs of the communities with whom we are working. We reflected on the importance of considering past barriers to engagement that individuals within these communities have experienced, such as stigma, language barriers, discrimination and accessibility, and discussed ways to counteract these barriers to ensure that participants feel comfortable expressing their thoughts and concerns.
Simple gestures, such as providing refreshments, allowing sufficient time for someone’s engagement, and checking in on their wellbeing were some of these strategies mentioned that help to create trust and a welcoming and supportive research environment. However, some of the participants also mentioned funding mechanisms and bureaucratic barriers that often impede a more effective and ethical engagement. The presenters thus encouraged transparency and openness in our interactions about all parts of the research process, including reimbursements and co-authorships, and communicating consistently through the research project and beyond.
As I am currently setting up an advisory group for my PhD which investigates barriers and facilitators to agency in service engagement for women who experience homelessness and multiple exclusion and hoping to engage with people from diverse communities, I am very grateful for NIHR ARC South London’s sponsorship of my place at this seminar.
I enjoyed hearing about the different approaches and examples to engage more ethically and inclusively with communities and learnt much from the experiences and insights of the other participants
Carolin Hess is a PhD student at the NIHR Policy Research Unit in Health and Social Care Workforce in the Policy Institute at King's, and a member of ARC South London’s social care research theme.