Lived and living experience
What has occurred to me recently is the subtle difference between the two terms ‘lived’ and ‘living’ experience. It’s a small difference in the verb tense between past and present that has a huge impact and bearing on recruiting individuals to share their story.
When does experience move to the past as something ‘lived’ and concluded? ‘Living’ implies something that continues to be felt and known. I think that this focus on past versus present experiences is interesting and informed by a notion of life as chronological or linear. Of course, in reality life is unpredictable and complex.
Sometimes, people’s ability to share their experience depends on where they are in their lives. For example, recently we were connected with someone whose story would provide insight and learning at a future event. However, because of unforeseen life events, it was no longer ethical or appropriate for us to pursue their participation. We’ve learned that this is part of the process.
The Senses Framework suggests that psychological safety is linked with things like consistency, physical safety, continuity and security. Using this model when involving people with lived experience, helps us recognise that often people can be struggling with complex issues, which can then impact on some of these safety mechanisms.
Creating opportunities
For our first Transitional Safeguarding roadshow, held in Newport, we were lucky to have identified someone who was comfortable and confident sharing his story with us in person. Wes Cunliffe, who also appears in our video, experienced trauma and complex challenges growing up. This culminated in his involvement with gangs and county lines. He now consults with South Wales Police on relevant cases so that he can share his experience and advocate for young people.
When we approach people with real stories of experience to share at our events, we’re mindful of the need to give them sufficient time. Without this, their contribution could be seen as tokenistic or inadvertently reductive.
When people can share stories comfortably it can have a profound effect on audiences. People can share their stories in person, through voice or video recording or in a written piece. The most important thing is that it’s done in a way that feels right for the individual.
This allows choice and control for people to engage on their terms. We also go back to people after events to give feedback and update about the impact their stories have had. One key message that’s been shared is that 'one person can make a difference and everyone can try'.
What are the barriers?
Finding people who want to share their stories can be challenging and there are some important things to think about.
Practical considerations
- Recognising readiness to share a story relates to both ethical and moral considerations. In some cases, where there are ongoing crises and when things are not stable in terms of what we may refer to as Maslow’s hierarchy of human needs (for example, housing or personal safety), it may not be possible or ethical to ask for engagement in story sharing. Of course, the choice for people to engage with the process is theirs, but there’s a fine line between providing choice and potentially causing harm.
- Dynamic assessment – this means gathering information in real time. When we recruit people with lived experience we need to factor in that things can change rapidly and sadly for the worse, meaning that sometimes plans change and commitments can’t be met.
- Time commitments – this is both about the time of the individual contributing their story and also the support and relationship required from professionals curating their contribution. It’s essential to factor this time in to avoid tokenism and worse to cause harm when people are not properly supported. Providing the right set up can have a huge impact on how positive and confident a person feels about the experience.
- Payments and recognition – this can be a complex area when taking benefit rules into account. There can also be implications for recognition/consent/sharing while adhering to confidentiality where there may be safeguarding concerns or other issues.
Relationship style approaches
As a team, we’ve been successful in building relationships with people who have appeared at our roadshows to share their stories. We’ve led with trust and mutual respect and part of the process has included going back to them to update on the impact of their story sharing. We want them to understand the value of their contribution and how it has supported learning and development in practice.
Closing thoughts
Hearing from people who have lived or living experience can bring the research message to life. Although there are some challenges to story sharing, it’s a powerful way to engage us intellectually and emotionally.
Find out more!
Visit our Research roadshows page for more information on how we bring researchers, practitioners and people with lived experience together.
Our Storytelling framework for social care in Wales gives practical examples of where story sharing can be applied to practice and information around the ethics and benefits of storytelling.