This week, we have handed over our Research Blog to parents participating in the MICE Study Patient and Public Involvement (PPI) Group. The MICE Study is the Mental Health Intervention for Children with Epilepsy (MICE) at Great Ormond Street Hospital, led by Professor Roz Shafran and Professor Helen Cross. Earlier this year Epilepsy Research UK awarded an Endeavour Project Grant to Dr Sophie Bennett at UCL Great Ormond Street Institute of Child Health to build on the work of the MICE Study. We asked the PPI group to provide some insights into participating in research to help anyone considering getting involved in ERUK’s SHAPE EPILEPSY RESEARCH NETWORK.
Here, in their own words, they describe why being involved in research is important and some share their own perspectives and experiences of mental health and epilepsy.
We would like to thank Emma, Andrea, Jemma, Bron and Ben from The MICE PPI Group for contributing to this article, and to Amy and Tyler for supporting this blog.
The MICE Study – Background
There is a significant body of evidence demonstrating that common mental health conditions are more prevalent in children with epilepsy compared with their peers. The MICE Study was set up at Great Ormond Street Hospital to trial the effectiveness of telephone-delivered cognitive behavioural therapy for young people. Epilepsy Research UK has recently funded further research involving the MICE Study, led by Sophie Bennett, to investigate whether treating mental health problems in children with epilepsy affects certain outcomes, such as education, health and parents’ mental health.
What advice would you give to families and people with epilepsy who are considering getting involved in research?
“I would 100% recommend getting involved in research to families. I didn’t know the opportunity existed until I was approached. My experience has been very positive and has provided a unique opportunity to have input from a parent’s lived experience and to meet a wonderful group of people, both clinicians and parents who “get it”.
“Don’t hesitate. Your experience is first-hand and so valuable. Through research, we stand to improve the lives of so many epilepsy sufferers by making epilepsy a super important subject.”
“For me, PPI has been invaluable. As a participant, I genuinely feel that we are providing a valid contribution to the development of the projects and also feel that we are being “heard”. As a parent, I often feel like I am dismissed when raising concerns regarding my child’s conditions. Being part of the PPI group has in some ways made me feel more validated. From a more personal perspective, being part of the projects has helped us develop our knowledge of the conditions discussed and also, inadvertently provides a level of peer support that we didn’t even know we were missing.”
“As well as the MICE project being brilliant and us all wishing it had been around when our children were first diagnosed, this PPI group is also important because of the way that the team repeatedly tells us “this is what you told us and this is how we changed it”. The difference with good PPI is that you are getting a chance to make it better and actually make a change. If we can use our voices to show researchers that it is vital to have PPI done properly from the very beginning of any project then that means that it will work out better for us and our kids in the long run.”