CIR researchers launch ‘Intensive-Share’ – a patient and public involvement group for paediatric critical care research
On Saturday 15 October 2022, researchers from CIR and the team at Edinburgh Children’s Hospital Charity launched a patient and public involvement (PPI) initiative for paediatric critical care research.
Involving patients in paediatric critical care
Paediatric critical care (PCC) is a unique clinical and research environment. PCC generates a wealth of data that can be used to improve treatments, outcomes and safety for paediatric patients; but families in critical care can often be faced with a deluge of information, procedures, and novel technologies at a stressful and emotional time. This makes PCC challenging. Engaging with patients and families after they leave PCC helps researchers incorporate families' views into their decisions about what research they do, how they do it, and how they eventually communicate their findings to the public.
Patient and public involvement (PPI) in paediatric critical care is in its infancy, especially in Scotland. Dr Milly Lo and Dr Laura Smith secured a CMVM Public Engagement with Research Seed Fund to develop and recruit the first Scottish paediatric critical care PPI group, ‘Intensive-Share’, to enhance engagement between patient communities and researchers.
The Intensive Share Project
As discussed at the launch event, the ‘Intensive-Share’ project's mission is to connect with families in paediatric critical care and involve them in PCC research. Meaningful engagement of people with lived experience could empower families and also help researchers carry out studies that are important and more impactful.
The project was promoted to families with lived experience of PCC through social media, charity networks and community groups. Children, young people, siblings and parents/carers were all welcome. 18 adults, children and young people attended the launch event, with more families who expressed an interest in being involved in the future. Families were offered reasonable travel expenses, lunch, and a voucher to thank them for their time.
The Centre for Inflammation Research team partnered with the Edinburgh Children’s Hospital Charity, who helped develop and deliver a fun, engaging programme and hosted the event at their ‘Hub’ in Edinburgh's Royal Hospital for Children and Young People site. A ‘Space’ theme was used to illustrate the value of PPI in research, and activities were designed to encourage discussion among the children, young people and adults.
Launch event
Event activities included building space rockets, mapping out the space journey and important ‘stops’ for their rockets, and creating a space mandala representing their experiences of paediatric critical care.
Parents and carers were introduced to some PPI ‘taster activities’ including a translation task (reading a scientific versus a lay abstract), critiquing participant information sheets, and discussion on how to disseminate research findings to the public (websites, short videos and data comics). The valuable insights and ideas families can contribute to all stages of the research process was clear even from this short session.
Participants commented:
“This was a lot of fun. I liked coming up with all the ideas to make Planet PCC a better place to be.” - Sibling, aged 13
“You get so much information in critical care, it is hard to take it all in. It would be good to think about different ways research information can be given, like short videos or data comics. Information that the whole family can understand and can take away to look at when the time is right.” - Parent
Going forward, the research team hope to formally establish parent/carer and children/young people Intensive-Share PPI groups and continue to explore opportunities for PPI in paediatric critical care research.
We are very grateful to the families who gave their time to join us at the Intensive-Share launch and shared their experiences and views with us. I am excited to see how the PPI group develops and the impact that working together can have on paediatric critical care research.
Find out more
If you would like to find out more about Intensive-Share, please contact Dr Laura Smith at laura.hodges@ed.ac.uk.
Edinburgh Children’s Hospital Charity