Supporting well being
COSMIC has funded research which looked at the provision of information to families to help improve psychological outcomes following a child’s admission to paediatric intensive care (PICU).
The booklet being tested as part of this research is targeted at families of children aged 4 years and above, but the researchers also wanted to develop a booklet for families of the under 4’s so their future research would be accessible and relevant to more families.
Many COSMIC volunteers got involved with the research and developing content for the booklet. The researchers worked closely with the volunteers – personal stories were shared, ideas were generated about important issues to cover, and invaluable feedback was given on drafts.
Dr Lorraine Als found the whole process extremely rewarding, “I felt extremely privileged to have families share their experiences with me and was humbled by their enthusiasm to help other families that might find themselves in a similar situation”.
The feedback from the publication of the book was overwhelmingly positive! One volunteer had this to say, “I love love love love LOVE it!!!! I couldn’t think of anything that you could possibly change. I know that I would have found a leaflet like this very helpful for me when my son was ill”. This was mirrored in the feedback from all volunteers. “We asked the volunteers to complete a short feedback questionnaire and the results were very encouraging: 100% said they found the content of the booklet useful, 100% said if they had received the booklet it would have made them feel more prepared for life after PICU, and 80% said that if they had received the booklet they would have felt less anxious or concerned”.
The team are now applying to seek further funding from a national agency to develop the booklet further with the ultimate aim of rolling it out across London and the UK.