Department of Nursing, HungKuang University, Taiwan.
Division of Oncology, Department of Pediatrics, Taichung Veterans General Hospital, Taiwan; Department of Physical Therapy, HungKuang University, Taiwan.
J Pediatr Nurs. 2020 Jul-Aug;53:e64-e71. doi: 10.1016/j.pedn.2020.02.008. Epub 2020 Mar 19.
To explore the meaning of maternal caregiving in the Chinese culture for children newly diagnosed with acute lymphocytic leukemia (ALL).
Recurrence of and death associated with ALL remain the main concerns for mothers. Mothers experience guilt and anxiety towards their child's cancer.
Descriptive phenomenological study.
Twelve mothers were recruited from a medical centre in Central Taiwan. The mothers were primary caregivers for their child diagnosed as having ALL in the past 3 months to 1 year. Data were collected through semi-structured interviews and analysed using Colaizzi's method.
Four main themes emerged: feeling this world crashing by knowing the diagnosis, feeling the double-edged sword of mothering, worrying about potential risks for their vulnerable child, and passing through difficulties with power of support.
Most mothers felt this world crashing due to potential loss of their child and seeing their child's suffering. The mother was blamed for her child's cancer but was also required to shoulder all caregiving for their child. The mothers needed to compromise their lives to protect their child from potential infection. Perceived power of support helped the mothers overcome difficulties.
Findings support that nurses encouraging mothers to tell their stories, regardless of culture, will facilitate healing. Establishing trust and providing support from nurses, physicians, psychologists and social workers will lead mothers' readiness to deal with care of their sick child. Increasing visiting time for parental support for children hospitalized in the PICU is suggested as well.
探索中国文化中母亲对新诊断出急性淋巴细胞白血病 (ALL) 儿童的照顾意义。
ALL 的复发和相关死亡仍然是母亲们最关心的问题。母亲们对孩子的癌症感到内疚和焦虑。
描述性现象学研究。
从台湾中部的一家医疗中心招募了 12 位母亲。这些母亲是过去 3 个月至 1 年内被诊断出患有 ALL 的孩子的主要照顾者。通过半结构化访谈收集数据，并使用 Colaizzi 方法进行分析。
出现了四个主要主题：得知诊断后感到世界崩溃，感受到养育孩子的双刃剑，担心孩子潜在的风险，以及在支持的力量下度过困难。
大多数母亲感到世界崩溃是因为孩子可能会失去生命，看到孩子受苦。母亲因孩子的癌症而受到指责，但也需要承担照顾孩子的全部责任。母亲们需要牺牲自己的生活来保护孩子免受潜在感染的伤害。感知到的支持力量帮助母亲克服了困难。
研究结果表明，鼓励母亲讲述自己的故事，无论文化背景如何，都将有助于治疗。建立护士、医生、心理学家和社会工作者的信任并为其提供支持，将使母亲准备好照顾生病的孩子。还建议增加 ICU 住院儿童的父母探视时间，以提供支持。
