Exploring positive futures for those living with Eczema
What is it like to live with eczema?
The Surface Echoes team have started to work with people living with eczema to deepen our insight into the lived experience of those who live with eczema, as well as their carers. In early March 2023, the Surface Echoes team ran their first workshop to test some of the activities and themes we want to explore over the course of the project.
Seven participants from the University of Edinburgh gathered in the atmospherically panelled Deans Office at Summerhall. They spent the morning sharing their stories of living with eczema and exploring ideas about how their experiences and aspirations could be amplified.
To break the ice, our volunteers used Origami Chatterboxes and ‘Eczema Experiences’ cards, responding to quotes from eczema patients and their carers that reflect the most common lived experience topics. These included sleep, skin creams, family attitudes and navigating the health system. These conversation-starters stimulated discussions about how they related to these quotes and topics and how these related to their own lived experiences.
A key aim of the Surface Echoes project is for participants to communicate how living with eczema could be better in the future. The volunteers had fun getting creative using Lego bricks, pipe cleaners and sticky shapes to help illustrate what an ideal future life would look like for them.
From revitalised, accessible health care to eczema-aware spas, and magical sunshine soups, these imaginary places identified participants’ heartfelt hopes.
Finally, the volunteers shared their own stories of important moments in their lived experiences that they felt others needed to understand. An important component of the Surface Echoes project is to explore creative options on how best to bring lived experience quotes to life using digital voices, actors and sound artists. We tested recording a participant story using digital Voice Puppetry, provided by Cereproc.
The Surface Echoes project will continue to delve into lived experience quotes collated from eczema patients and their carers and gather new quotes from the people we will directly engage with throughout this project, such as through the Eczema Outreach Support charity.
Experts in the fields of digital voice synthesis will create a unique collection of eczema lived experience quotes in written and digital recordings, as well as an innovative audio library of voiced patient experience as an accessible digital resource for use in exhibitions, artworks, public events and awareness-raising across all of our target audiences. Read more about this project here.
If you would like to participate in future workshops or keep up to date with this project, please sign up to our mailing list and select “Surface Echoes”.
This work is funded by the ScotPen Wellcome Engagement Award
