Background: there are few studies in the literature describing or evaluating the workload of children's community nurses prior to and following the death of a child with a non-oncological life-limiting disorder.
Method: a documentary analysis of nursing records of all children under the care of the Lifetime Service who died during a 5-year period was carried out.
Results: the number of visits and telephone calls involving children's community nurses in the end of life and bereavement periods was analysed and the level of the input to families found to vary widely. In total, the number of visits range from 0 to 50 (median 8). The total number of telephone calls made or received for each child ranged from 0 to 127 (median 20). Calls and visits were with a wide range of people relating to diverse subject areas and continued even when children were in hospital.
Conclusion: community children's nurses liase with a wide range of professionals and organisations and the nature of their workload at the end of life is often hidden.