Inviting those with lived experience to design, not just participate in, research about them

In line with recent cries for “nothing about us without us” from the various communities of people receiving social care services and their allies, I believe social research should be done with people, rather than only about people. That’s why I was beyond elated when Ipsos MORI were invited to pitch a co-production project in partnership with Blue Cabin. This project became known as the Young Researchers Programme and ran alongside an evaluation of the Creative Life Story Work pilot we’re currently working on with Coram, on behalf of the What Works Centre for Children’s Social Care.

Part of this evaluation involves interviewing children in care who have recently participated in Creative Life Story Work, as well as their carers, social workers and others around them who are involved in their care. Creative Life Story Work is an attempt to improve the practice of Life Story Work, a therapeutic intervention that aims to enable children in care to make sense of their early childhood experiences and better understand – as well as make peace with – why they’re in care.

The project involved a group of care experienced people aged 18-25 from across three local authorities (South Tyneside, Darlington and Gateshead) in which Creative Life Story Work is being delivered and evaluated. We are very grateful to these local authorities for supporting and funding this work. Following a process not unlike an informal job interview to gain interest and set expectations, those who participated provided detailed feedback on draft interviewing materials we are now using with children in care, their carers, and professionals working with them. The young people involved were supported to do so by a small team who prioritised listening, spending time building relationships and flexibility. As people providing expertise to inform work others are paid to deliver, and to acknowledge the emotional labour involved, participants were paid for their time.

The participants also reviewed the process we’ll be taking to engage these young people and those around them. Notably, alongside refining lines of questioning to more comfortably draw out answers to key questions, their well-considered feedback led to extensive discussion among the research team on the overlooked importance of agency of children in care. Participants highlighted the importance of giving agency to the subjects of interviews when they are not taking part i.e. the children in care receiving Creative Life Story Work, whose experiences and behaviour would be discussed by their carers in interviews with us.

As someone who grew up in foster care, and having been involved in a number of projects on social care policy and practice as an adult, I know that children in care are often subject to many adults they’ve never met having lengthy discussions about highly personal information without their permission or knowledge. This is a necessity given the circumstances, of course, but it can breed a culture where it’s easy to forget that these children should retain at least some agency over their own stories. I was deeply moved and honoured to enable this issue being raised, and to tell the young people who raised it that we’ve changed our approach because of what they told us. We are now asking carers to first seek the permission of the child they care for before speaking to us about their experiences.

This small but valuable project has greatly improved the quality of the evaluation, while also teaching a wonderful group of young people new skills. I encourage others to take a more participatory approach whenever possible – and while I know having your work scrutinised can be uncomfortable, not least due to the time and resource it takes, you will be assured that you don’t have to do everything that’s requested. It’s a conversation. You just need to work together with those who have lived experience of whatever you are trying to understand; explain when their ideas or challenges can’t be accommodated without letting go of something integral or important, and work through it together. Show them when their work has changed yours. You won’t regret it.

Chloe Juliette is a researcher in Public Affairs at Ipsos MORI, working in the Qualitative Research and Engagement Centre with a focus on involving people affected by policy and practice in its design. She grew up in care and is an active member of the care experienced community. 

Find out more about Creative Life Story Work here.