Reflections on Community Involvement and Creativity in the GLASS Study

When we began the GLASS Study - exploring feelings of guilt, shame, and the perception of being a burden among older adults with multiple long-term conditions - we knew we wanted to do more than just gather data. We wanted to listen, to learn, and to work alongside communities who are often left out of research conversations.

From the outset, public and community involvement were central to our approach. We embedded a public co-applicant within the research team and worked closely with a PPIE group of five older adults. Their insights helped shape the study’s focus, refine our recruitment strategies, and interpret the findings in ways that truly reflected lived experience.

Building relationships with communities:

We partnered with several community organisations who played a vital role in helping us reach older adults who are often underserved by research. These included:

• Arts4Wellbeing in rural Wales
• Telford African and Afro-Caribbean Resource Centre
• RCCG Newness of Life Christian Centre in Newcastle-under-Lyme

These partners supported us in hosting community engagement events attended by over 50 older adults. They also helped us build trust and create spaces where people felt safe to share their experiences. 

Creative methods that made a difference:

To explore sensitive topics like guilt and shame, we used creative focus groups. Participants expressed themselves through poetry, artwork, photography, and storytelling. These methods allowed people to share deeply personal reflections in ways that felt authentic and empowering.

The resulting outputs (animations, a digital art exhibition and public gallery events), created powerful opportunities for sharing findings back with communities and stakeholders.

Moments that stayed with me:

One of the most memorable parts of the project was hearing participants say they’d “heard of research” but never imagined it could be something they could contribute to—especially in such a meaningful way. We went into their space, their world, and made them feel welcome in ours. We listened as they shared, and we learnt from them.

We also included additional activities during our engagement events—like “safe space time,” games, and health and wellbeing talks from volunteer professionals (two GPs and an adult social worker). Participants told us the day was beneficial, and for me, seeing their faces light up was a highlight of the entire project.

One older adult, who had never been involved in research before, said something that really stuck with me:

“What is needed now is how to action all the feedback. These will be most beneficial for people of our age. Communities need to come together to help each other!”

Looking ahead:

The GLASS Study has shown how creative, community-rooted involvement can reshape the way health research is done. It’s not just about collecting data- it’s about building relationships, creating space for dialogue, and ensuring that those most affected by research are at the heart of it.

We hope this work will inform future research and practice, and ultimately help improve care and support for older adults living with multiple long-term conditions.

The GLASS Study was funded by the NIHR School for Primary Care Research (ref: 605)