Lin Shih-Chun, Huang Mei-Chih
Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan.
Int J Qual Stud Health Well-being. 2020 Dec;15(1):1756686. doi: 10.1080/17482631.2020.1756686.
Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated. This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction. A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol. Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience. Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
患有脑干功能障碍的青少年可能会接受许多侵入性治疗,而父母常常面临着决定停止治疗的抉择。然而,面对孩子的死亡,父母在处理临终决策时的精神实践仍有待研究。本研究探讨了父母在为患有脑干功能障碍且依靠生命维持系统的青少年做出临终决策时的精神实践。通过对台湾两名青少年的三位父母进行深入访谈,开展了一项描述性现象学研究。数据采用科莱齐的七步法进行分析。出现了三个主要主题:(1)决策过程中的信念,(2)决策过程中的挣扎,(3)决策过程中的转变。研究结果表明,“转变希望的本质”是这种经历的核心。建议提供以家庭为中心的护理,深入了解父母的精神实践,并开展符合文化背景的护理。