Background It is important that any family of a child with a life limiting condition (LLC) have the option of where they would like their child to receive care (ACT 2010, DOH 2008) and do not have unnecessary protracted periods of hospital admission.
Aims The aim of the project was to establish the perceptions of professionals and parents regarding perceived delay in discharge of children admitted acutely who had a LLC; also to look at ways to expedite discharge if appropriate.
Methods This study took place in a large tertiary teaching hospital. A qualitative approach was taken – one to one interviews with parents and focus groups with professionals. Inclusion criteria included parents of children with life limiting conditions admitted with acute illnesses.
Results The data was analysed using grounded theory. A model emerged of “separateness of expert knowledge” from the parents, community and hospital teams.
Conclusion This study, although limited in terms of participant numbers, explored the perceptions of parents and professionals around discharge in children with LLC admitted with acute conditions. The main finding was the “separateness of expert knowledge” between parents, community teams and hospital teams. All the groups included valued access to a professional who knew the patient well. Hospital staff and community teams felt that co-morbidities resulted in longer lengths of stay.
The reason for admission was not solely due to the acute diagnosis, but also lack of other adequate services for this group of children out of hours. There was no specific treatment identified that prevented discharge.
A multi-professional approach to the care of these children, with a robust system for discharge planning may enhance the service. A multi-professional out of hours telephone service for families of children with LLC may help reduce admissions.
ACT’s manifesto 2010: living matters for dying Children www.act.org.uk/manifesto accessed 15th June 2010.
Department of Health 2008. Better Care Better Lives.