New Publications

With colleagues in Brazil and worldwide this paper provides a critical overview of patient and public involvement in research, examining current international practices and reflecting on future directions and challenges for strengthening PPI in Brazil.

de Carvalho Chagas, P.S., de Morais Faria, C.D.C., Cross, A., Lennon, O., Morris, C., Williams, S., McAuley, J., Marsh, S., Pereira, L.P. and Longo, E., 2026. Patient and Public Involvement around the world: where we are and where Brazilian research needs to go. Brazilian Journal of Physical Therapy, 30(5), p.101608.

Led by Professor Bernie Carter with colleagues in the CASTLE research team, this paper describes how young people with epilepsy and their parents become highly motivated information seekers; however, they face persistent gaps in credible, relevant and accessible guidance, particularly regarding the role of sleep in epilepsy. The findings highlight a clear need for developing and implementing appropriate sleep support within paediatric epilepsy care. 

Saron, H., Cook, G., Wiggs, L., Dietz, K., Bray, L., Anilkumar, A., Coffey, T., Gringras, P., Hardy, W., Hughes, D. and Lalnunhlimi, S., 2026. ‘I Didn't Even Associate the Two Together at All’: A Qualitative Study of ‘Information Work’Undertaken by Parents and Their Children With Epilepsy to Make Sense of Sleep and Seizures. Health Expectations, 29(4), p.e70763.