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Open Access Research article

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

Saskia Jünger1*, Tania Pastrana1, Martina Pestinger1, Martina Kern2, Boris Zernikow3 and Lukas Radbruch1

Author Affiliations

1 Department of Palliative Medicine, RWTH Aachen University Hospital, Pauwelsstraße 30, 52057 Aachen, Germany

2 Department of Palliative Medicine, Malteser Hospital Bonn/Rhein-Sieg, Von Hompesch Str. 1, 53123 Bonn, Germany

3 Vodafone Foundation Institute and Chair of Children's Pain Therapy and Paediatric Palliative Care, Clinic for Children and Adolescents Datteln, Dr.-Friedrich-Steiner-Straße 5, 45711 Datteln, Germany

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BMC Palliative Care 2010, 9:10  doi:10.1186/1472-684X-9-10

Published: 2 June 2010

Abstract

Background

In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.

Methods

Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.

Results

Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.

Conclusions

Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.