Researchers' experiences of patient & public involvement


Age at interview: 42

Brief outline: Kristin is a qualitative researcher and has conducted research, including systematic reviews about children and young people’s lives. She has been involving people in research since she started her PhD.

Background: Kristin is a research fellow. Ethnic background: White European.

Audio & video

Kristin began involving young people in her research during her PhD. It was inspired by the sociology of childhood. Some of her previous research showed that there was a big difference between existing research and what practitioners and planners of children’s services needed. Inspired by this, Kristin set out to find out what young people thought was important about their health. In hindsight she would’ve liked to have done a study that was completely led by young people, but didn’t think it would have been funded. 

About 20 young people were involved for as long as they liked. They were care leavers, mostly unaccompanied asylum seekers, aged between 16 and 21 years, and were recruited through local councils. They were involved in every aspect of the project for two years, which included conducting a systematic review*, attending conferences and co-writing a paper about the research. They received vouchers for their time and food was provided at meetings. 

Initially Kristin tried to make the meetings informal, but then felt they needed more structure, so she invited the young people to have debates or discuss things in small groups and attend workshops to learn about the research. But before she started she would have liked to have had some teaching experience to help her think about how to explain things to them. 

The research was about what was important to the young people in terms of their health. But the young people indicated they defined health in a broad sense to include education and crime, which changed the course of the research. Kristin took this on-board and proceeded with the study. She was concerned that it might cause problems with her supervisors or the funders, and was relieved when it didn’t.
Kristin felt involvement made her research experience more satisfying because it felt good to be able to give the young people nice food and nice vouchers, and she said it was interesting to develop relationships with people who she wouldn’t ordinarily meet. She believes research benefits from involvement because it ultimately changes how you think about data. But she said it was important to involve people in research when it makes sense to do so. Researchers should ask themselves why they are doing it and why it’s important for the topic they’re researching. She would like to see universities creating better structures for involving people at the earliest stages of the research process.

*A systematic review involves finding all the previous research on a particular topic, assessing its quality and putting it together to establish what is currently known.


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