Enskär Karin, Darcy Laura, Björk Maria, Knutsson Susanne, Huus Karina
CHILD Research Group, Jönköping University, Sweden.
University of Borås, Sweden.
J Pediatr Oncol Nurs. 2020 Jan/Feb;37(1):21-34. doi: 10.1177/1043454219874007. Epub 2019 Sep 17.
Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.
患癌儿童需要反复住院，这会改变家庭的日常生活和常规。在护理和治疗的各个阶段，护士照顾患癌儿童时的具体行为描述在文献中鲜有提及。本研究的目的是描述患癌幼儿及其父母在从诊断到随访的3年期间对护士护理行为的体验。本研究基于对25名新诊断为癌症的1至6岁幼儿及其父母进行的半结构式访谈，这些幼儿和父母与瑞典一家儿科肿瘤病房有关联。使用斯旺森关怀理论，通过演绎性内容分析法对儿童和家长的数据进行了分析。结果表明，从诊断到随访的3年期间，针对患癌幼儿及其父母的护士护理行为在一定程度上是相似的，但也存在一些差异。护士的护理行为旨在支持儿童和父母向 “新常态” 过渡。关爱儿童和家庭的护理过程包括：创造希望并建立信任关系、询问而非臆断、提供知识和信息、熟练执行任务、表现出对患儿及其父母院外生活的兴趣，以及帮助家庭对未来和其他医疗服务提供者产生信任。基于这些结果，我们建议制定一份标准化、结构化的护理计划或临床指南，详细说明在不同阶段如何开展临床护士护理工作。
