The challenges of looking after children with complex medical conditions have been widely acknowledged, and a model frequently proposed to address this is of a ‘key worker’ – an identified health care professional who is a point of first contact, organiser and font of locally applicable knowledge to improve care and reduce distress.
In the UK, children with cancer were ‘officially’ to have a key worker from 2005 – noted in the NICE improving outcomes guidance – and key workers for children with complex disabilities were called for by the CYPHOF independent advisory group in 2012. The evidence underlying such programmes was sketchy … difficulties in defining the intervention, the appropriate outcomes to measure and what the “control” situation could be.
A UK children’s cancer support charity commissioned an evaluation of the scheme, with a mixed methods approach, trying to define and describe, as well as assess value, of key workers in childhood cancer. Just to get an idea about how mixed methods studies are done, and can be accessibly reported, it’s worth a read. No single model was shown to be superior than any other – an adaptive approach to local circumstances was endorsed as probably the way to make this really effective. The clinical take homes are that key workers improve family experience of care, and that this requires knowledge expertise, effective relationships between worker and family, and skilled coordination, which needs time to happen. There’s no clear reason why these findings should differ for children and families with other complex, life-threatening or life-limiting conditions, and should form the basis of local lobbying to improve services.
– Bob Phillips