Abstract
Background: Paediatric palliative care is a holistic approach to the care for children with life-limiting or life-threatening conditions and involves collaboration among general practitioners, home care nurses, and physiotherapists. However, many of these healthcare providers lack experience in paediatric palliative care. In our centre, this care is coordinated by the liaison team KITES.
Aim: To evaluate the quality of collaboration between primary healthcare providers and KITES, and to identify perceived needs and opportunities for improvement.
Design: A cross-sectional survey study using a validated questionnaire.
Setting/participants: General practitioners, home care nurses, and physiotherapists who provided palliative care to a child (< 18 years) in collaboration with the palliative liaison team KITES in the past three years.
Results: Response rate was 38%. Overall, only 3% had received training in paediatric palliative care. Almost all health care providers considered symptom control and emotional support very important. Bereavement care was more important for general practitioners than for allied health care providers. Support provided by KITES was mainly focused on symptom management and organization and coordination of care. Psychological support provided was more constrained. Collaboration and communication between general practitioners, nurses and KITES was well-established, while contact with the treating paediatrician was limited.
Conclusions: Health care providers lack training in paediatric palliative care. Support by the liaison team focused mainly on symptoms and organization of care. The psychological support provided by the liaison team and the involvement of the treating paediatrician could be improved.