Patient and Public Involvement (PPI)

 

We regard Patient and Public Involvement (PPI) as crucial to the development and implementation of psychosocial interventions specifically designed for African Caribbean people. PPI is fundamental to improving African Caribbeans' engagement and relationship with services.

We are involving the public in a number of ways in our CaSPER study. In Phase 2, we conducted five focus groups with African Caribbean persons diagnosed with schizophrenia, their family members and carers, and community members. The focus group participants discussed what kind of content the CaSPER e-learning resource should have. They also discussed ideas for the 'look' and 'feel' of the resource. In the next phase, the content was created by the research team based on focus group feedback. The content was audio-recorded in a professional recording studio by community volunteers. The first prototype of the CaSPER learning resource was evaluated by family members and carers of persons with a schizophrenia diagnosis before launching the pilot study to test the resource.

The CaFI study had a committed Research Advisory Group (RAG). The purpose of the RAG was to maximise the involvement of service users, carers, families and members of the community in our research. Our RAG panel consisted of eight people who are passionate about making a difference to the lives of African Caribbean people living with mental illness in the UK.

Watch a video about the CaFI study on Youtube to learn about stakeholders' experiences of being involved in the project and what it means to them.

For more information on how to improve active PPI in research, please visit the INVOLVE website or visit the Centre for Engagement and Involvement website based at the Faculty of Medical and Human Sciences, The University of Manchester.