Care across Contexts: From Lived Experience to Research

Each year the ACRC Academy PhD students organise and run a conference for interested academics, third-sector organisations and and people with lived experience.

On a sunny Wednesday, around 100 people gathered at the Nucleus for a jam-packed afternoon. We welcomed attendees from within the University of Edinburgh (UoE), third-sector organisations, and people with lived experience to discuss care in its many contexts. Everyone enjoyed a lovely buffet lunch before afternoon sessions began.

To read our extended Event Report, follow this link.

Welcoming attendees in the foyer of the Nucleus Building
Students welcoming attendees to the conference
Olivia Turner, Willy Gilder and KIrstyn Knowles present the IMAGINED Project
Olivia Turner (UoE), Willy Gilder (lived experience consultant) and Kirstyn Knowles (Music in Hospitals & Care) present on the IMAGINED project

The IMAGINED project

Our keynote speakers Olivia Turner (UoE), Willy Gilder (Lived experience consultant), and Kirstyn Knowles (Music in Hospitals & Care) presented on the IMAGINED project. Using co-production, they’ve brought together people experiencing dementia, carers, artists, organisations, and researchers to develop a new evaluation framework and training for participatory arts in dementia. Their engaging presentation discussed ethnographic case studies with speakers showing that co-production fosters inclusive, critical, and creative thinking. Willy shared his brilliant drawings from group ballet sessions, illustrating the impact and importance of lived experience.

Interdisciplinary Panel

The panel, chaired by ACRC student Misty Wilcox and involving Dr Margaret Whoriskey (Digital Health and Care Innovation Centre & ACRC Academy Advisory Board), John Nicholls (Public Contributor & former civil servant), Stuart Miller (ALLIANCE Senior Links Officer), and ACRC students Melody Wang and Christian Newman, explored approaches to care practice and research.

Despite varied backgrounds, consensus emerged about the importance of listening to and learning from people with lived experience. Discussion highlighted that greater recognition and support for those giving and receiving care could improve Scotland’s care landscape. Relationships, trust, and time were recognised as crucial here.

Exhibition Space

During the break, guests explored ACRC student’s summer project posters, and other artefacts from their research journeys. Exhibits ranged from board games and clay masks to care devices and a songbook from the Isle of Islay. Each contribution had its own unique story, adding a new perspective on care - they are linked in full here.

Attendees admiring the work of the students
The conference exhibition space

The ‘Co-Design Coach’

ACRC students Jane Dudman, Deniz Hepdogan, and Kourosh Khalillan’s session presented their ‘Co-design Coach’, a toolkit for inclusive and reflective co-design, a project started in summer with John Vines (Chair of Design Informatics, UoE). The toolkit provides crucial insights for those using co-design in research with older adults. Thoughts from here will be integrated into the resource, meaning conference attendees themselves have contributed to the ‘Co-design Coach’. 

The Care Cafe - a space to encourage meangingful discussion
The Care Cafe

The Care Cafe

We wanted to offer something a little different next: a more informal, reflective space for everyone to share what care means to them. We drew inspiration from Death Cafes and Menopause Cafes that provide compassionate spaces for people to explore challenging topics. Flowers in jars and colourful tablecloths transformed the room into a softer, cafe-style environment, with ten wonderful volunteers helping to facilitate. The change of pace was well-received, and thoughtful conversations unfolded around the room.

Closing remarks

Scottish Care had a double bill starting with Professor Joe Goldblatt, a founder of the Fringe Care Fest, bringing Fringe acts to care homes across Edinburgh. We watched the short film, ‘Life Goes On!’ where residents were interviewed about the positive experiences the initiative gave them. Find the full-length version here. Our Keynote Listener, and ACRC Academy Advisory Board Chair, Dr Donald Macaskill, reflected on the value of listening and sharing stories whilst navigating care pathways. He shared the Gaelic words of his grandma,Èisteadair an tseanchaidh’, which can be translated as the listener of the storyteller.

Jane Dudman was awarded Best Poster for her work on co-design, with praise highlighting her ‘fabulous and explosive’ design that ‘challenges what an academic poster is’. Well done Jane! We closed by expressing gratitude to outgoing members of the Academy, Heather Wilkinson and Stewart Mercer - wishing you both all the best!

Thank you to all who contributed and helped create a wonderful discussion. Another special thanks to Jenn and Gregor for their continuous support and guidance.

Read more about "Care across Contexts" in the Event Report, where you can find further information on the speakers, feedback, and signposting to any resources and future events.

The conference committee: Lizzie, Rachel, Emilie, Nicola, Szu-Chia and Amir

Academy Leaders Ian Underwood, Heather Wilkinson and Susan Shenkin with departing ACRC Director Stewart Mercer
Professors Ian Underwood, Stewart Mercer, Heather Wilkinson and Susan Shenkin
A group photo of the conference attendees
The conference attendees