McGrath Pam
University of Queensland, St. Lucia, Australia.
Oncol Nurs Forum. 2002 Jul;29(6):988-96. doi: 10.1188/02.ONF.988-996.
PURPOSE/OBJECTIVES: To report the perspective of parents during the initial stages of diagnosis and treatment for their children's acute lymphoblastic leukemia (ALL).
Descriptive and phenomenologic.
Royal Children's Hospital, Brisbane, Australia.
Parents (mothers, n = 12; fathers, n = 4) of 12 children (ages 0-10) undergoing treatment for ALL.
Open-ended, audiotaped interviews were transcribed verbatim and analyzed.
Parents' experiences of their children's initial diagnosis and treatment of ALL.
The parents' insights provided a clear indication that the initial stage of treatment is highly stressful and parents may be overwhelmed by the experience. The situational stress translated into three potentially overwhelming emotional states: the stress of uncertainty, the shock of diagnosis, and a feeling of being trapped in an unpleasant emotional roller-coaster ride. Honesty from healthcare professionals, the opportunity to share feelings, and an affirmation of the harshness of the situation were reported as helpful in dealing with the sense of being overwhelmed.
Parents need honest information and sensitive emotional support to come to terms with the stresses associated with their children's diagnosis and initial treatment of ALL. Parents must have access to a safe environment where they can express their feelings and have the harsh reality of the initial stage of treatment affirmed.
Parents need considerable emotional support to negotiate the initial stage of treatment for ALL. Parents of children diagnosed with ALL must have honest information about diagnosis and treatment, as much information as possible for planning their daily lives, an opportunity to express real feelings, access to moments of personal space where feelings can be processed, and compassionate understanding of the emotional difficulties associated with this difficult life journey.
目的/目标：报告父母在其子女急性淋巴细胞白血病（ALL）诊断和治疗初始阶段的观点。
描述性和现象学研究。
澳大利亚布里斯班皇家儿童医院。
12名接受ALL治疗的儿童（年龄0 - 10岁）的父母（母亲12名；父亲4名）。
进行开放式录音访谈，逐字转录并分析。
父母对其子女ALL初始诊断和治疗的经历。
父母的见解清楚表明，治疗初始阶段压力极大，父母可能会被这段经历压垮。情境压力转化为三种可能无法承受的情绪状态：不确定性带来的压力、诊断带来的震惊，以及感觉被困在令人不快的情绪过山车中。医疗保健专业人员的坦诚、分享感受的机会以及对情况严峻性的肯定，被认为有助于应对这种不堪重负的感觉。
父母需要真实的信息和体贴的情感支持，以应对与子女ALL诊断和初始治疗相关的压力。父母必须有一个安全的环境，在那里他们可以表达自己的感受，并得到对治疗初始阶段严峻现实的确认。
父母在ALL治疗初始阶段需要大量情感支持。被诊断患有ALL的儿童的父母必须获得关于诊断和治疗的真实信息、尽可能多的用于安排日常生活的信息、表达真实感受的机会、有处理感受的个人空间，以及对与这段艰难人生旅程相关的情感困难的同情理解。
