Correia Maria Eduarda, Magão Maria Teresa, Botelho Maria Antónia Rebelo
Department of Nursing, Higher School of Health, Polytechnic Institute of Portalegre, 7300-555 Portalegre, Portugal.
Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), 1990-096 Lisbon, Portugal.
Nurs Rep. 2025 Jan 9;15(1):15. doi: 10.3390/nursrep15010015.
Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompanied their children with a complex chronic illness until their death, in a paediatric palliative care setting. : We opted for a qualitative methodology, with a descriptive phenomenological orientation. Phenomenological interviews were carried out with nine intentionally selected mothers, with the support of a paediatric palliative care hospital team. The procedural phases of van Kaam's method, modified by Moustakas, were used to analyse the data. An understanding of the essential structure of the phenomenon is revealed in a description made up of three essential themes: 'facing the harbinger of illness'; 'living (together) with a sick child'; and 'starting again without ever forgetting: living with an absent child', the latter being the subject of this article. The participants attribute a self-transforming meaning to their lived experience of accompanying their children. Nurses will be able to access the lived experience of these mothers and improve their intervention in the process of their children's illness, as well as in their bereavement process. There are also contributions to research and teaching in palliative care in the area of child and paediatric health.
陪伴患有复杂慢性病的孩子直至其死亡的父母经历着一种独特的情形，存在着脆弱性、特定需求以及巨大的痛苦。本研究的目的是描述在儿科姑息治疗环境中陪伴患有复杂慢性病的孩子直至其死亡的父母的生活经历。我们选择了一种具有描述性现象学取向的定性研究方法。在一家儿科姑息治疗医院团队的支持下，对九名经过有意挑选的母亲进行了现象学访谈。采用了经穆斯塔卡斯修改的范·卡姆方法的程序阶段来分析数据。在由三个基本主题构成的描述中揭示了对该现象基本结构的理解：“面对疾病的预兆”；“与患病孩子一起生活”；以及“从未忘记，重新开始：与逝去的孩子一起生活”，后者是本文的主题。参与者将陪伴孩子的生活经历赋予了自我转变的意义。护士将能够了解这些母亲的生活经历，并改善她们在孩子患病过程以及丧亲过程中的干预。这对儿童和儿科健康领域的姑息治疗研究和教学也有贡献。
