RESUMO
BACKGROUND: Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minoritised ethnic groups are often underserved by research and services. They experience health inequalities and face significant barriers to accessing health services. It is recognised that new approaches are needed to reach underserved communities and make research more relevant. The purpose of this work was to utilise World Cafés, a participatory method, to explore research agendas with diverse communities. METHODS: Two World Cafés were conducted as research agenda setting activities with individuals from minoritised ethnic communities in Bristol, UK. World Café 1 explored Black and Asian women's perspectives about supporting mental health. World Café 2 with men from the Somali community, focused on prostate cancer. Community members co-developed the focus and questions of each World Café and were also instrumental in recruiting individuals to the sessions and facilitating discussions, including translation. Audio and written records were made of the discussions and from these key issues about each topic were identified, and a visual representation of the discussion was also generated. These were shared with participants to check for accuracy. RESULTS: Community members identified a range of issues that are important to them in relation to mental health and prostate cancer, including barriers to help seeking and accessing primary and secondary care, ideas for service improvements and a need for health information that is accessible and culturally relevant. CONCLUSIONS: World Cafés are a flexible method that can be successfully adapted for research agenda setting with individuals from minoritised ethnic communities. The role of community members in co-developing the focus of sessions, recruiting community members and co-facilitating sessions is crucial to this success. The discussions at both World Cafés provided a rich insight into the experiences of participants in relation to the topics mental health and prostate cancer and identified issues that are important to these communities that will be followed-up with communities, researchers and clinicians to co-develop research and service improvement strategies.
People from minoritised ethnic groupsgroups can have difficulty getting health care. They may also be left out of health research. There is a need to include a more diverse group of people in health research. World Cafés are an accessible way to listen to people by getting them to talk to each other about different questions and topics.We did this work to see if World Cafés are a helpful way to talk to people from minoritised ethnic groups about health. We wanted to learn what things are important to people around mental health and prostate cancer. We also wanted to see if designing and running the World Café with people from the same communities as people taking part in the World Cafés is a good way to do this. We worked together with people from racial and ethnic minorities to: Choose questions and topics, Ask people to take part Get people talking and write down what was said We learned that planning and running World Cafés with people from the same communities as the people taking part was very helpful. The people taking part in the World Cafés said that it can be difficult to get help and information about their health. They gave lots of reasons for this. They also had ideas to improve healthcare.Now that we have this information, we will work with the people who took part in and helped run the World Cafés, along with, doctors and researchers to take their ideas for improvements forwards.
RESUMO
BACKGROUND: Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health research. However, methods traditionally employed in PPIE can lead to the exclusion of some communities and exacerbation of existing inequalities, highlighting the need to develop inclusive processes for more inclusive community involvement in health research. We aimed to produce guidance to promote good practice for inclusive involvement of racially marginalised community groups in health research via public and community involvement and engagement. METHODS: The CHecklist for Inclusive COmmunity involvement in health research (CHICO) was co-produced by researchers and three Bristol-based community organisations: Dhek Bhal, My Friday Coffee Morning-Barton Hill, and Malcolm X Elders. After initial conversations and link building with community leaders to develop relationships, researchers attended at least three meetings with each community group to discuss preferred approaches to involvement. Each community group had a different format, and discussions were open and tailored to fit the groups preferences. The meetings were held in the community groups' usual meeting venue. Notes from meetings were reviewed by researchers to identify key themes, which were used to inform the creation of a draft illustration which was then taken back to the community groups for refinement and used to inform the development of written guidance and the final illustration. RESULTS: Checklist items were structured into three stages: (1) building relationships, (2) reciprocal relationships and (3) practicalities. Stage 1 highlights the importance of building trust with the community group over time through regular visits to community venues and talking to people informally to understand the history of the group, their preferences and needs, and topics that are likely to be of interest to them. Stage 2 focusses on maintaining a reciprocal relationship and understanding how to best to give back to the community. Stage 3 provides guidance on the practicalities of designing and running inclusive community-based involvement activities, including consideration of the venue, format, communication-style, language requirements, social activities, and provision of food. CONCLUSIONS: Our co-produced checklist can guide researchers in how to involve people from different ethnicities in health research that is relevant to their community.
Health research needs to be for everyone. For this to happen, people from all backgrounds need to be involved. However, people from ethnic minority backgrounds are often not involved in the design of health research. We wanted to find out how researchers and community groups can work together to make the research process more inclusive. Researchers worked with three community groups in Bristol. These were South Asian, African Caribbean and (majority) Somali community groups. One researcher talked with community leaders to find out if the interests of the research unit was relevant to community members and to understand how each group would prefer to work. Following this, at least three meetings were held with each group. After these meetings, we looked at what was talked about. We suggest that researchers involving community groups in health research follow three key steps. Step 1 is making relationships and covers the importance of building trust with the community. This should be through talking with community leaders and regular visits to the group to get to know members before asking for input. Step 2 is about how to best to give back to the community. This is important to make sure that relationships are fair. Step 3 is about how to design and run activities. This includes thinking about the venue, language needs, social activities, and providing food. Our suggestions can help researchers and community groups to work together on health research. We have made an illustration of our findings for sharing.
