Public involvement in research event with children with narcolepsy and their parents

Our Level 3 Psychology PhD student, Jane Blackwell, arranged a public involvement event with children with narcolepsy and their parents from Sheffield Children’s Hospital.

Public involvement in research is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. The purpose of this event was to discuss a future research idea with the families, in order to gather their expert feedback on the importance and relevance of the research proposal.

The event took place on Saturday 8th July at the Holiday Inn in Rotherham. The event was funded by a grant from the National Institute for Health Research (NIHR) Research Design Service for Yorkshire and the Humber (RDSYH). The proposed research has been designed as part of a new collaboration between the SleepResearch@Leeds team (Jane Blackwell, Dr Hannah Nash, Dr Anna Weighall & Dr Ian Kellar) and the Clinical Sleep Team from Sheffield Children’s Hospital (Professor Heather Elphick, Dr Ruth Kingshott & Janine Reynolds).

16 children and 25 adults took part in the public involvement event which lasted approximately one hour. At the start of the session, Jane presented an overview of the proposed research to the families. The format of the presentation was based on the popular TV show “Dragon’s Den” where an idea or invention is pitched to a panel of experts. The audience were told they are the “narcolepsy experts” and that the research team really needed their feedback on a research idea. After this 15 minute presentation, the audience were split into age-appropriate groups and the research idea was discussed in further detail.

The participants found the proposal acceptable but were also able to suggest very useful enhancements to the study design. Jane and the research team are very grateful to the families for their helpful feedback and suggestions. Positive changes have been made to the research idea as a result of this event.

Jane would like to thank the Clinical Sleep Team from Sheffield Children’s Hospital for allowing this event to be part of their annual “Narcolepsy Family Day”.