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Open Access Short Report

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

Kerstin Kremeike12*, Nina Eulitz1, Saskia Jünger3, Annette Sander2, Max Geraedts4 and Dirk Reinhardt2

Author Affiliations

1 Netzwerk für die Versorgung schwerkranker Kinder und Jugendlicher e.V, Carl-Neuberg-Straße 1, 30625 Hannover, 30625, Germany

2 Department of Paediatric Haematology and Oncology, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, 30625, Germany

3 Department of Palliative Medicine, University Hospital of Bonn, Sigmund-Freud-Str. 25, 53127 Bonn, 53127, Germany

4 Institute for Health Systems Research, Witten/Herdecke University, Alfred-Herrhausen-Straße 50, 58448 Witten, 58448, Germany

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BMC Research Notes 2012, 5:498  doi:10.1186/1756-0500-5-498

Published: 11 September 2012

Abstract

Background

In 2007, the patient’s right to specialised palliative home care became law in Germany. However, childhood palliative care in territorial states with low patient numbers and long distances requires adapted models to ensure an area-wide maintenance. Actually, general paediatricians are the basic care providers for children and adolescents. They also provide home care. The aim of this study was to improve the knowledge about general paediatrician’s involvement in and contribution to palliative care in children.

Findings

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.

Conclusions

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.

Keywords:
Children; Palliative care; Paediatrician’s survey; Home care; Network; Prevalence