Abstract
BackgroundIn 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/DesignThe 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).DiscussionThis 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 registrationInternet Portal of the German Clinical Trials Register (www.germanctr.de, DRKS-ID: DRKS00012431).
Highlights
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
The results will add valuable knowledge to the criteria that distinguish specialized outpatient palliative care (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
Several German studies have begun to evaluate SOPC for pediatric patients from the family caregiver’s perspective, for example in the federal states of North Rhine-Westphalia [8, 31], Lower Saxony [15] and Bavaria [7, 32]. All of these studies recommend further research into such topics as psychosocial support, grief work, follow-up care after a child’s death, and needs assessments for siblings. These topics are among those that will be evaluated in our study, and the results are expected to enable the German rule of procedure for SOPC to be improved
Summary
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. In Germany, approximately 23,000 children and adolescents [1] and 87,460 adults [2] are suffering from lifelimiting conditions Both adult and pediatric patients receiving palliative care can be referred to the specialized outpatient palliative care (SOPC) program. In 2007 the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate palliative care to pediatric patients [9, 10], international studies highlighted deficits These concern the delivery of family-centered care [11,12,13] that adequately addresses siblings’ needs [14], and provides psychosocial support and follow-up care for families [15, 16]
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