Department of Psychology, Social and Health Psychology, University of Zurich, Binzmühlestr, 14/Box 14, 8050, Zurich, Switzerland.
Eur J Pediatr. 2011 Aug;170(8):1031-8. doi: 10.1007/s00431-011-1398-5. Epub 2011 Jan 29.
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
本定性研究旨在探讨照顾患有绝症儿童的家庭的看法和需求。考虑到儿童生命末期疾病的异质性，定义了三个诊断组：(a)癌症，(b)神经障碍，和(c)非癌症/非神经疾病。对 15 名父母进行了采访，这些父母的孩子在四家儿童医院之一接受姑息治疗或在过去 2 年内死亡。主要采访主题包括：与专业人员的沟通、在家或医院护理方面的支持需求以及丧亲支持。无论护理中心如何，患有非癌症诊断的儿童的父母报告说，在护理的实际问题和心理社会方面缺乏支持。患有癌症的儿童的父母表示，在家中提供护理时，在协调护理方面存在困难。丧亲父母强调他们对丧亲支持的愿望。我们的研究结果表明，瑞士儿科姑息治疗存在不足，并概述了受影响家庭的基本需求，包括心理社会支持、护理协调和丧亲支持。基于这些发现，我们提出了一些关于如何以最有效的方式启动儿科姑息治疗并满足瑞士家庭需求的建议。
