Kremeike K, Mohr A, Nachtmann J, Reinhardt D, Geraedts M, Sander A
Pädiatrische Hämatologie und Onkologie, Medizinische Hochschule Hannover, Hannover.
Fachbereich Soziales, Gesundheit und Umwelt, Landeshauptstadt Potsdam, Potsdam.
Gesundheitswesen. 2016 May;78(5):306-12. doi: 10.1055/s-0034-1390451. Epub 2014 Nov 14.
In 2007 the children's right to specialised paediatric palliative home care became law in Germany. This claim should be met in Lower Saxony by the establishment of a comprehensive specialised paediatric home care (SPPHC). Since April 2010, a central office undertakes the coordination and administration throughout the federal state. Regional teams comprising nursing, medical and psychosocial specialists care for the children and adolescents suffering from complex conditions due to life-limiting conditions - subsidiary to regional health care providers. The aim of the study was to evaluate SPPHC in Lower Saxony.
From June 2012 to February 2013, semi-structured interviews were conducted with 20 parents of children aged from 3 to 18 years. The young patients fulfilled all criteria to be eligible for SPPHC. 13 of the families experienced SPPHC. 7 families did not utilise the specialised care, mostly because the palliative situation occurred before the implementation of specialised care. Data were analysed using content analysis (Mayring). Therefore, key aspects of paediatric palliative home care were summarised in main categories. The evaluation of parent's satisfaction with palliative home care was performed by an evaluation scheme developed for the main categories (very good - good - bad- very bad) and operated for every case.
6 dimensions of paediatric palliative home care were identified: (i) benefit of care, (ii) continuity of care, (iii) perception of care providers as a team, (iv) dealing with the issues death and dying/hospice and palliative, (v) care provider's communication/cooperation with parents, and (vi) parent's Information. As all parents clearly indicated a rating on the first 3 categories, these categories were selected for the evaluation of parent's satisfaction with the received home care. The evaluation revealed that parents experienced in SPPHC looked upon these 3 main categories more favourably than parents without the experience of SPPHC. As room for improvement, the respondents requested the extension of physician's presence and communication with the families as well as with each other, efforts to better meet the needs of psycho-social support of the families and to optimise follow up-care.
The implementation of SAPPV was rated positively by the concerned families. In addition, options for improvement could be identified.
2007年，儿童获得专业儿科姑息家庭护理的权利在德国成为法律。在下萨克森州，应通过建立全面的专业儿科家庭护理（SPPHC）来满足这一要求。自2010年4月起，一个中央办公室负责整个联邦州的协调和管理工作。由护理、医疗和心理社会专家组成的区域团队为因生命受限疾病而患有复杂病症的儿童和青少年提供护理——作为区域医疗服务提供者的补充。本研究的目的是评估下萨克森州的专业儿科家庭护理。
2012年6月至2013年2月，对20名3至18岁儿童的父母进行了半结构化访谈。这些年轻患者符合所有专业儿科家庭护理的入选标准。其中13个家庭接受了专业儿科家庭护理。7个家庭未使用专业护理，主要是因为姑息状况在专业护理实施之前就已出现。使用内容分析法（迈林法）对数据进行分析。因此，儿科姑息家庭护理的关键方面被归纳为主要类别。通过为主要类别制定的评估方案（非常好——好——差——非常差）对父母对姑息家庭护理的满意度进行评估，并对每个案例进行操作。
确定了儿科姑息家庭护理的6个维度：（i）护理益处，（ii）护理连续性，（iii）将护理提供者视为一个团队的认知，（iv）处理死亡和临终/临终关怀与姑息问题，（v）护理提供者与父母的沟通/合作，以及（vi）父母信息。由于所有父母都明确对前3个类别给出了评分，因此选择这3个类别来评估父母对所接受家庭护理的满意度。评估显示，接受过专业儿科家庭护理的父母对这3个主要类别的评价比未接受过该护理的父母更积极。作为改进方向，受访者要求增加医生与家庭以及医生之间的沟通，努力更好地满足家庭的心理社会支持需求，并优化后续护理。
相关家庭对专业儿科家庭护理的实施给予了积极评价。此外，还确定了改进的方向。
