Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

To evaluate the current status of palliative home care provided by general paediatricians and their cooperation with other paediatric palliative care providers, a questionnaire survey was disseminated to general paediatricians in Lower Saxony, a German federal state with nearly eight million inhabitants and a predominantly rural infrastructure. Data analysis was descriptive.One hundred forty one of 157 included general paediatricians completed the questionnaire (response rate: 89.8%). A total of 792 children and adolescents suffering from life-limiting conditions were cared for by these general paediatricians in 2008. Severe cerebral palsy was the most prevalent diagnosis. Eighty-nine per cent of the general paediatricians stated that they had professional experience with paediatric palliative care.Collaboration of general paediatricians and other palliative care providers was stated as not well developed. The support by a specialised team including 24-hour on-call duty and the intensification of educational programs were emphasised.The current regional infrastructure of palliative home care in Lower Saxony can benefit from the establishment of a coordinated network of palliative home care providers.Paediatric palliative care aims to improve the quality of life for children and adolescents suffering from life-limiting conditions and their families [1]. Essential requirements for effective paediatric palliative care include a broad multi-disciplinary approach including available community resources. Families often prefer to care for their ill child at home [2]. Therefore, the existence of local home care providers is crucial [3].Generalists play an important role in palliative care – in Germany as well as in other countries [4,5]. In the German health care system, general paediatricians provide medical home care for children and adolescents. Since they can make life-changing treatment decisions, optimal professional expertise, including the various aspects of palliat