OCEAN (Older adults with Complex EmotionAl Needs) Research Involvement Community

PI Title: Dr Katie Saunders & Dr Tom Kingstone

Lead member: Keele University 

What you plan to achieve:
We want to develop a research involvement community for Older Adults (and caregivers) with Complex Emotional Needs – we refer to this as CEN.

CEN is a term for what has historically been known as Personality Disorder. People with CEN have persistent difficulties with their emotions, relationships, and how they cope with everyday life. The previous label of Personality Disorder carries stigma and can cause people to feel excluded from care. Older adults with CEN are under-recognised, under-served and under-researched.

We will bring this community together to explore health experiences and support co-design of a research grant application.

How you plan to do this:
We will identify older adults who think they have, or have been diagnosed with, CEN (and carers) from across Shropshire and Staffordshire. We will produce posters and digital flyers to promote this opportunity. We will share these materials online and discuss in-person, through our collaborator networks, community groups and NHS services in Shropshire and Staffordshire. To bring individuals together, we will host two public involvement workshops for older adults with CEN (and carers). Each workshop will last for 3-hours and take place in accessible community spaces.

We are working with a community-based design organisation called Designs-In-Mind. This organisation runs a creative studio for people with mental health problems, including people with CEN. Artists from Designs-In-Mind will facilitate the workshops using creative methods (e.g. drawing, painting, poetry, photography). Participants will be able to choose methods that they feel comfortable with. Through this creative process we want older adults with CEN (and carers) to explore health experiences that are important to them. This could include diagnosis challenges, stories of hope, and/or opportunities for further support.

Researchers will also take part in the workshops. They will work alongside participants to share in the experience and talk about the process as it happens. At the end of each workshop, a reflective activity will be conducted by an experienced academic team member. This activity will encourage participants to talk about their artwork and experiences relevant to primary care.

With permission from the participants, the artwork will be displayed in public spaces (community, primary and secondary care) and shared online on collaborator websites. Sharing this artwork will help raise awareness about the experiences of older adults with CEN.

The artwork themes, workshop discussion, and community of older adult (and carers) with CEN will inform future research grant applications.

Proposed timelines
Eight-month project starting on 01/10/2025:
Month 0-3:
• Establish the research involvement community by identifying older adults with CEN (and carers)
• Provide introductory training to community members about public involvement in research
• Build relationships with the artists at Design-In-Mind and design workshop briefs.
Month 4-6:
• Host two workshops in community spaces across Shropshire and Staffordshire
Month 7-8:
• Write up a final report, academic paper and draft a research grant application
• Display artwork in public spaces - artwork from the workshops will continue to be displayed beyond the 8 months and then returned to participants to keep.

Amount awarded: £2,000