Community engagement in south London: findings and next steps
CRN South London PPIE Manager met with Community Champions in Lewisham to discuss the findings of participatory community research and the next steps in the Research Ready Communities Programme.
The meeting took place as a wrap up to Phase 2 of the programme during which our Community Champions conducted interviews and a workshop with community members in Lewisham.
Patient and Public Interaction and Engagement (PPIE) Manager Neha Modha and Community Champions Husseina Hamza, Obanda Ouma and Omoh Adetunji met at the Africa Advocacy Foundation office in Catford to discuss the themes that emerged from the interviews with community members. The interviews explored what health means to community members, where they go for health support and information in the community, as well as awareness of and attitudes to health research and its benefits.
Research Ready Communities programme
The aim of the Research Ready Communities programme is to build relationships with under-served communities to increase their access to health and care research opportunities. The programme uses tried and tested community engagement methods and spans over 12 months.
Last year, CRN South London partnered with Red Ribbon Living Well and Africa Advocacy Foundation, two community organisations supporting black communities in Lewisham. Red Ribbon Living Well supports people living with HIV and works to promote HIV testing, treatment and care within black communities. Africa Advocacy Foundation works to empower individuals to take control of their health and wellbeing through accurate information, advice, and guidance.
In September 2022, Community Champions had training on how to conduct community research in their local area.
What the Community Champions found
Community Champions captured a broad range of levels of awareness and attitudes to health research. They found a higher awareness of research and its benefits among people living with HIV.
Obanda, who works as Project Officer for the Africa Advocacy Foundation and runs a community radio station called Sauti Radio (‘sauti’ means ‘voice’ in Swahili), conducted 27 interviews. He said some people don’t know much about research, while others are aware of it but would need more information to consider participating.
Obanda concluded from his interviews that to engage people more with health research, it would help to explain what it is by putting it into context that’s relevant for them. It is also necessary to show why research is important, what are its benefits and demonstrate positive changes that came about through research.
Husseina Hamza, Director of Red Ribbon Living Well, conducted a workshop with a group of 8 community members. In her group, people believed that research can benefit their community, but they would need more information from a source they can trust to participate.
Omoh, who is a Support Worker and volunteer for Red Ribbon Living Well, conducted his interviews in a day care centre attended by a diverse community of people of African, Asian and European backgrounds. He said that people he spoke to are aware of research and have a positive attitude to it. Having been approached for public consultations on several occasions, they are aware that some positive changes in the community happened because of research. His interviewees pointed out that more effort needs to be put to engage young people in research.
Obanda believes that there needs to be a continued relationship with communities when they are engaged in research. He observed that over the pandemic, “communities have been used as a launching point; people take from these groups but don’t give back.” Instead, he says, feedback must be given to communities when their views are sought as to how they were used and what research resulted in.
Issues affecting black communities in Lewisham
Community Champions discussed the health issues affecting their communities. Husseina works with people affected by HIV some of whom also deal with migration issues. Obanda named HIV, female genital mutilation (FGM) and domestic abuse. Omoh, who works with many people whose first language is not English, says that language barrier and reliance on interpreters present an issue when accessing healthcare. As a result, there is not enough time to discuss what’s affecting them with the GP.
Trust to official service providers was a major theme that emerged in Champions’ discussions with their communities. Husseina added that some members of her group who are migrants and refugees have fear of accessing public services. An issue for their community that both Obanda and Husseina are aware of is people avoiding official treatment for fear of deportation and turning instead to alternative or unconventional sources of help.
Another issue for the communities that our Champions work with is stigma around HIV. Despite recent significant advances in HIV prevention and treatment, people living with HIV still face stigmatisation when accessing health and social care. Community Champions believe that it makes experience of accessing healthcare distressing and better awareness of the effectiveness of current HIV treatments in preventing transmission is needed.
Next Steps
On Wednesday 18 January, our Community Champion Husseina Hamza held a stand at a wellness event at Waldron centre where she promoted research alongside her organisation. In preparation for the next stage of the Research Ready Communities programme, we are planning meetings with researchers at Guy’s and St Thomas’ NHS Foundation Trust, King’s College London and Lewisham and Greenwich NHS Foundation Trust to discuss collaboration.
Find out more about the Research Ready Communities programme on the NIHR website. If you’d like to find out how you can benefit from CRN South London’s Research Ready Communities programme, email crnsouthlondon@nihr.ac.uk.
