McCullough Cheryl, Price Jayne
School of Nursing and Midwifery, Queen's University Belfast.
Br J Nurs. 2011;20(3):164-7. doi: 10.12968/bjon.2011.20.3.164.
This article presents a narrative literature review of the psychosocial impact on family life of caring for a child diagnosed with cystic fibrosis. Diagnosis of long-term illness in a child causes major upheaval in the lives of both the child and family. Normal family life is often emotionally, socially, physically and financially disrupted. Amid such disruption, parents attempt to cope by creating a semblance of order in their lifestyle. Within an interdisciplinary approach to caring, the children's nurse plays a pivotal role in supporting families to establish such order and reconstruct their lives, while coming to terms with the knowledge that their child could die prematurely. In addition, the nurse, in his/her role as teacher and educator, empowers parents, children and young people with the knowledge to make informed decisions and assists parents in developing the skills (often technical) to care for their child. Cystic fibrosis is one such condition in childhood, and this article explores the main psychosocial issues experienced by families caring for their child following diagnosis of CF, as raised in the literature.
本文对照顾被诊断患有囊性纤维化的儿童对家庭生活的心理社会影响进行了叙述性文献综述。儿童被诊断患有长期疾病会给儿童及其家庭的生活带来重大动荡。正常的家庭生活在情感、社交、身体和经济方面常常受到干扰。在这种干扰中，父母试图通过在生活方式上营造一种秩序感来应对。在跨学科的护理方法中，儿童护士在支持家庭建立这种秩序并重建他们的生活方面发挥着关键作用，同时要接受他们的孩子可能过早死亡这一事实。此外，护士作为教师和教育者，使父母、儿童和年轻人具备做出明智决策的知识，并帮助父母培养照顾孩子的技能（通常是技术方面的）。囊性纤维化就是儿童时期的这样一种疾病，本文探讨了文献中所提出的，照顾患有囊性纤维化的孩子的家庭所经历的主要心理社会问题。
