BACKGROUND:Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care. METHODS:Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care. RESULTS:Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies. CONCLUSIONS:To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.

译文

背景:母亲和父亲在临终时为其身患绝症的孩子提供照料时面临着严峻的挑战。主要在母亲中研究了照料需求。但是,到目前为止,尚未探讨父母在孩子生命终结期间在照料需求方面的差异。该知识对于在儿科临终关怀中最大程度地满足父母的个人需求非常重要。
方法:在瑞士多中心“儿科生命终止护理需求”(PELICAN)研究中收集的关于其子女最后四个星期的父母需求的定量调查的二次分析。使用代表六个基于证据的儿科质量领域的调查表,回顾性评估了因心脏病,神经病或肿瘤病或新生儿期在2011-2012年期间失去孩子的母亲和父亲(父母双亲)的照料需求。姑息治疗和临终关怀。
结果:该分析包括了八十八个双亲。父母之间的差异主要存在于需要家庭支持的地方。总体而言,在34个与需求相关的问卷调查项目中,有28个母亲的得分高于父亲得分,表明满足这一要求的重要性更高。结果表明,这些差异可能与不同的护理角色和针对性别的应对策略有关。
结论:为了最好地满足父母对小儿临终关怀的需求,应特别注意父母双方及其具体护理角色,因为在这种特殊情况下,这些角色的差异可能会影响他们的需求。因此,医疗保健专业人员应确定父母二联体如何相互指导他们生病的孩子的护理,以最好地满足他们在抚养方面的需求。此外,父母应在个人应对策略中给予支持。

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