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

Autor:	Katrin Kuss, Lisa-R. Ulrich, Joerg Haasenritter, Hannah Seipp, Stefan Boesner, Antje Erler, Dania Gruber, Ferdinand M. Gerlach, Michaela Hach
Jazyk:	angličtina
Rok vydání:	2018
Předmět:	Adult Male medicine.medical_specialty Palliative care Mixed methods Adolescent lcsh:Special situations and conditions Needs assessment [MeSH] Special needs Pediatrics [MeSH] Pediatrics Study Protocol 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Clinical Protocols Ambulatory care Germany Surveys and Questionnaires Ambulatory Care medicine Humans 030212 general & internal medicine Child Qualitative Research Qualitative research [MeSH] Palliative care [MeSH] Family caregivers business.industry lcsh:RC952-1245 Palliative Care General Medicine Focus Groups Focus group 030220 oncology & carcinogenesis Family medicine Needs assessment Female business Qualitative research
Zdroj:	BMC Palliative Care, Vol 17, Iss 1, Pp 1-7 (2018) BMC Palliative Care
DOI:	10.1186/s12904-017-0268-y
Popis:	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).
Databáze:	OpenAIRE
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