PPI Case Study: Working with PPI contributors under 25 years old
Susan Kirkpatrick held a workshop with people aged 16-25 who had themselves experienced a mental health problem, and one young person who had been involved in an experience based co-design project in the past.
Susan was conducting secondary analysis of a healthtalk interview collection, about young peoples’ experiences of depression, as part of a an ESRC funded project which aimed to see whether ‘trigger films’ could be made using a national collection of existing interviews, and if so, whether potentially, service users could provide input on the analysis of the interview material.
Susan recruited four young people from a national young people’s mental health in advisory group for research (generationr.org.uk/mentalhealth) and one young person who had been involved in a previous experience-based co-design project.
What was done (and what worked!)
Susan had already analysed her data for an evidence based care design trigger film, looking through original transcripts, and comparing this with the material already analysed for the existing online healthtalk resource.
She wanted to see if the young people would identify the same touchpoints in care, which are the focus of trigger films. They were sent extracts from transcripts in advance and came to a whole day meeting.
The meeting included some training on qualitative research methods, and some group work discussing the data and identifying aspects of the transcripts that resonated with their own ideas about touchpoints in care.
The workshop was a one off event. It was held on a day agreed amongst the group that would be the most convenient, and participants were paid for their time, for their travel costs, and provided with tea, coffee and lunch.
The young people were given a certificate for participating that they could use in their CVs.
It was also important to ensure that the young people enjoyed their day.
The difference PPI made
The young people confirmed that the researchers were identifying touchpoints in care (the aim of the films is to show what matters most to people in their experience of health services) that resonated with them in relation to their own experiences.
What was learnt?
Louise Locock, who also worked on the project, said of the young people’s involvement that it “helped us think through what level of analysis it is reasonable to ask people to get involved in, and we will be revising and testing what we do at a second workshop with people who have had a stroke.”
Learning from Susan’s experience meant that on other occasions the team got people to brainstorm ideas for the triggers, then analysed the data and then went back to the group to discuss the links between their ideas and the data.
What people said
“I loved doing this work so much I have decided to make it the focus of my PhD!”
Conclusions and what next?
A learning point from the workshop was that in order to enable the people to fully participate it was necessary to include quite of lot of training on the techniques involved.
This would be factored into similar future events but it was important to ensure that the time wasn’t spent wholly on instructing people ‘how to’ and that the focus should be to find innovative ways to engage participants with research data.