I’m currently reflecting on a recent exciting community initiative, after what seems like a long 2 ½ years of building relationships, every bit worth it!
Our plans to build long term sustainable relationship with a local underserved community were hampered by covid in early 2020 and whilst we adapted and reimagined, building relationship with the community via online was always going to be an even greater challenge. Still, covid enabled us to gather some momentum and form a more solid idea of what researchers and underserved communities coming together might look like. Out of lockdown, we spent weeks going along to play sessions in a local Sure Start Centre (Sure Start Centres provide integrated care and services for young children and their families, with a particular focus on closing the achievement gap for children from disadvantaged backgrounds), to meet with and get to know families, to chat about things that concerned parents regarding their children’s health and to find out what health research meant to them, if anything at all. We became the ‘Finding out Together’ (FOT) team because we were finding out together with the community. We wore ‘green t shirt’s’ to make sure we were easily noticed. Over the weeks, we had conversations at play sessions around the impact of covid on accessing healthcare, what resources on health did parents turn to when they couldn’t get to see their GP. How new parents managed to cope with their young children without any contact with health visitors and other sorts of tricky conversations.
Then one day, through a conversation with my husband, an idea was born…. the best conversations happen around the kitchen table, or on laps in front of the TV or over a coffee and that saw the birth of the ‘Food for Thoughts’ model we call the Listening Café. The concept is simple:
· Build relationships with a community group in an underserved area, in this case Sure Start
· Share the vision with the team… to connect/chat with parents about health research and why it’s important for them to have their say and to know that they can make a difference
· Find a researcher who wants to involve diverse communities in their project, in this instance Adam Geraghty, (Associate Professor of Psychology and Behavioural Medicine at the University of Southampton) with a project on mental distress
· Invite parents from the community to come to a four week Listening Café involving food, prompted conversation and craft
One key aim of the Listening Café is to provide opportunities for those who would not normally get involved in research; to have a voice, be heard and to feel that they’ve been involved in something meaningful. The FOT team have an expectation that researcher/s return to provide a ‘feedback session’ to share with the group how their involvement has helped make a difference. We celebrated our successful first Listening Café where nine vulnerable parents from the community came along for the four weeks; shared their opinions and experiences and came up with ideas. In a few months’ time, they will find out what difference their involvement has made to the project. Powerful!
This work evolved from an SPCR funded project, building a community partnership using a new model of engaging. We formed a team called ‘finding out together’ and launched a ‘food for thoughts’ model called the listening café, providing a bridge for researchers to engage with people who wouldn’t normally get involved in research, in an environment that the community is familiar with, using food, craft and prompted conversations. This work has been and continues to be in collaboration with the Wessex Public Involvement Network (PIN) a network of local NIHR organisations and the Sure Start Centre staff. Our work is about creating new approaches for involving underserved communities in research, in ways that we hope will make sense and in ways that are accessible.
What we need now more than ever is a ‘new language’. The language that we use in research and in PPI is difficult and complicated and it is certainly not accessible. We need a new language to speak with people who don’t understand that currency. The more I work with people living in underserved communities, who don’t know about research or don’t know the importance of research, the more challenged I am about the language we use and how unnecessarily complicated it is and now I’m on a mission to change this with likeminded people.
Sonia Newman, Patient & Public Involvement and Engagement Officer, University of Southampton