Verberne Lisa M, Kars Marijke C, Schouten-van Meeteren Antoinette Y N, Bosman Diederik K, Colenbrander Derk A, Grootenhuis Martha A, van Delden Johannes J M
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Heidelberglaan 100, 3508 GA, Utrecht, The Netherlands.
Department of Pediatric Oncology, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
Eur J Pediatr. 2017 Mar;176(3):343-354. doi: 10.1007/s00431-016-2842-3. Epub 2017 Jan 11.
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life.
Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience.
在儿科姑息治疗（PPC）中，父母面临着日益增加的照护需求。越来越多的儿童在家中接受照护，并且由于技术和医疗的进步，儿童对PPC的需求期延长。因此，清楚了解PPC中父母照护的内容变得越发重要。目的是基于患有危及生命疾病儿童的父母的生活经历，深入了解父母照护情况。采用主题分析法进行了解释性定性研究。对24名患有恶性或非恶性疾病且正在接受PPC的儿童的42位父母进行了单次或重复访谈。出于想成为“好父母”的愿望，照顾患有危及生命疾病孩子的父母努力实现三个目标：控制症状和疾病、让患病孩子拥有有价值的生活以及保持家庭平衡。这些目标导致父母承担四项任务：提供基本和复杂照护、组织高质量的照护和治疗、在管理风险的同时做出明智决策以及组织良好的家庭生活。
父母需要专业人员尽早解释如何在目标和相关任务之间取得平衡，以便掌控自身状况并防止负担过重。已知信息：• 在儿科姑息治疗中，父母面临着日益增加的照护需求。• 育儿问题常常从压力角度来探讨。新发现：• 父母努力实现三个目标：控制症状和疾病、让孩子拥有有价值的生活以及保持家庭平衡。• 父母承担四项任务：提供基本和复杂照护、组织高质量照护、在管理风险的同时做出决策以及组织良好的家庭生活。• 专业人员需要从父母的角度深入了解父母的目标和任务，以增强父母的适应能力。
