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Open Access 01-12-2018 | Study protocol

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: palliative care for pediatric patients

Authors: Lisa-R. Ulrich, Dania Gruber, Michaela Hach, Stefan Boesner, Joerg Haasenritter, Katrin Kuss, Hannah Seipp, Ferdinand M. Gerlach, Antje Erler

Published in: BMC Palliative Care | Issue 1/2018

Abstract

Background

In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The “Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)” study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II).

Methods/Design

The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher).

Discussion

This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients.

Trial registration

Internet Portal of the German Clinical Trials Register (www.germanctr.de, DRKS-ID: DRKS00012431).

The indicated age groups refer to recommendations provided by German law (§7(1) SGB VIII).

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Title: Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: palliative care for pediatric patients
Authors: Lisa-R. Ulrich
Dania Gruber
Michaela Hach
Stefan Boesner
Joerg Haasenritter
Katrin Kuss
Hannah Seipp
Ferdinand M. Gerlach
Antje Erler
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI: https://doi.org/10.1186/s12904-017-0268-y

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Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) – work package II: palliative care for pediatric patients

Abstract

Background

Methods/Design

Discussion

Trial registration

At a glance: The ONWARDS insulin icodec trials

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Abstract

Background

Methods/Design

Discussion

Trial registration

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