Background: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer.
Method: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by life-limited children which caused them anxiety.
Results: Staff in 23 hospices were sent questionnaires. Twenty-eight questionnaires were returned from 10 doctors and 18 nurses. Just under half of the hospices contacted were represented. The staff were very experienced but had significant anxieties about treating some of their patients.
Aims: This study aimed to identify the symptoms which cause anxiety to staff working in children's hospices. More than 70% of all staff groups felt that identifying the symptom correctly caused more anxiety than treating identified symptoms. For doctors the top five symptom problems were, seizure control, spasms, pain assessment, unidentified distress and vomiting. For nurses the main concerns were the non-verbal child in distress, psychiatric or psychological problems, assessing pain, seizures, pain management, vomiting.
Conclusions: Doctors and nurses perceive seizures, pain management, and vomiting as the most troublesome symptoms for children with life-limiting conditions. Further research is needed into symptom management in this area.