Improving Palliative Care for Children and Their Families: Adapting the C-POS for Non-Verbal Children
18th June 2024
Researchers at the Cicely Saunders Institute are working to improve the C-POS tool, which measures the well-being of children with serious illnesses.
The team conducted a study with children aged 5-17 and their parents from 14 sites in the UK. They aimed to see if the C-POS tool was understandable, comprehensive, relevant, and acceptable.
They found that the C-POS questions were generally good, but they made some adjustments to include non-verbal children. For example, they added options for children to express their feelings in different ways, rather than just describing them. They also simplified some terms, like changing “living life to the fullest” to something easier to understand.
Parents mentioned that filling out the C-POS can be distressing, but they believe it is important.
In conclusion, the researchers improved the C-POS tool, making it more inclusive for non-verbal children and acceptable for use in everyday practice.
Coombes L, Braybrook D, Harðardóttir D, Scott HM, Bristowe K, Ellis-Smith C, Fraser LK, Downing J, Bluebond-Langner M, Murtagh FE, Harding R. Cognitive testing of the Children’s Palliative Outcome Scale (C-POS) with children, young people and their parents/carers. Palliat Med. 2024 Jun;38(6):644-659. doi: 10.1177/02692163241248735. Epub 2024 May 6. PMID: 38708863; PMCID: PMC11158001.