15 July 2024
Nic Crawshaw, Kim Emenike, Megan Feltham and Jasmine Sillitoe have used their lived experience of being in care to advise on research projects. This includes an ARC West study to give children in care access to trauma-informed mental health therapies. In this blog they reflect on being involved in research in this field. With thanks to researchers Rosie McGuire, Alice Phillips and Eva Sprecher for supporting the writing of this blog.
We are care-experienced research advisors. This means that we have each spent some time growing up under care of children’s social services (for example, in foster care and children’s homes), and that we use our experiences to advise on research studies so that they are sensitive, relevant and worthwhile.
We do not take part in patient and public involvement activities because it is beneficial to ourselves, but because we are fuelled by optimism. We hope that we can use our experiences to improve things for future generations of young people in care. In this blog you can read about our time as care-experienced research advisors, as well as some reflections on findings from the research which we helped design.
We are members of two different care-experienced advisory groups: one from the University of Bath, and one from University College London. Both of these groups aim to improve identification and treatment of mental health difficulties for care-experienced young people, as well as improving pathways to support. This is important because children who grow up “in care” have often experienced significant challenges in childhood such as abuse or neglect, which means that many are vulnerable to difficulties with their wellbeing and mental health.
In March 2024, we took part in an in-person celebratory workshop which brought together the two different advisory groups. After years of research activity, both research teams were ready to share their research findings with us.
The day began with doughnuts, presentations and group discussions. The researchers took it in turns to share their findings with us, which were a mixture of anticipated and surprising. Sadly, many of the findings affirmed that things have not moved forwards since our time in care. This evoked feelings of disappointment as we all hoped that things would have improved with the passing of time. However, it was positive to feel part of research that is highlighting that mental health support for young people in care needs to change.
Following the presentations, we identified findings which feel most important to us, and discussed “who” needed to hear “what”. We made postcards with key messages, and then chose who to address them to, including: young people in care, the Government, foster carers and social workers. You can read more about our reflections and see our postcards in this PDF. We hope that this is a call to action and that our mental health services can strive to be more available and accessible.
Overall, having the workshop was a nice way to bring everyone involved together. We are all very passionate and care about improving things for future generations. We have the same mission, be that as a care-experienced person or a researcher. Whilst the subject matter can feel intense, the workshop was facilitated in a relaxed manner, that was not too formal. The researchers were understanding of the importance to hold regular breaks. We had time to decompress from the information shared, which allowed us to regulate and give our best input.
We think that it is incredibly important this is done well, so we have identified some key tips!
Overall, this is our experience as care-experienced research advisors supporting a research project. We believe this has been a valuable experience for us and we would love for more organisations to offer the same experience to the wider care-experienced community. It is so important for care-experienced people to be involved in research projects and have the opportunity to lead such important conversations.