Björk Maria, Wiebe Thomas, Hallström Inger
Department of Nursing at Lund University, Lund, Sweden.
J Pediatr Oncol Nurs. 2005 Sep-Oct;22(5):265-75. doi: 10.1177/1043454205279303.
When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.
当一个孩子患癌症生病时,这会在很长一段时间内影响整个家庭。本研究的目的是阐明当家庭中的孩子被诊断出患有癌症时,家庭的生活经历。采用了一种描述性归纳设计,运用诠释现象学方法,包括对17个家庭(父母、孩子和兄弟姐妹)进行访谈。家庭的生活经历被描述为一个包含“破碎的生活世界”和直接的“努力求生”的双重基本主题。家庭原本安稳的日常生活消失了,取而代之的是恐惧、混乱和孤独。在努力让孩子和家庭生存下去的过程中,家庭成员努力去感受希望并保持积极的关注点,去获得掌控感,并感受到与他人的亲近。现象学人文科学研究可以加深对作为一个有患癌症孩子的家庭的意义的理解,并有助于儿科肿瘤医护人员变得更加体贴入微,从而更好地准备采取行动来减少家庭中出现的混乱。