Bergviken Hanna, Nilsson Stefan
Department of Paediatric Cancer Centre, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
J Spec Pediatr Nurs. 2019 Jul;24(3):e12261. doi: 10.1111/jspn.12261. Epub 2019 Jul 8.
The aim of this study was to gain insights into the experiences of parents of children with cancer in conjunction with their decisions on the type of central access device that their child would have.
The qualitative study design was chosen to maximize the likelihood of capturing the full range of the phenomenon, that is the parents' experiences from decision-making. Open interviews were conducted between December 2015 and January 2016 with 17 parents of children who had been diagnosed with cancer in 2014-2015. The interviews were analyzed using inductive qualitative content analysis.
The analysis of the decision-making process data yielded four subcategories: (a) Feeling overwhelmed owing to limited information and alienation within the healthcare system, (b) the burden of making a quick medical decision without having the big picture, (c) receiving conflicting views and approaches from the healthcare professionals, and (d) including the child's perspective. Those four subcategories were condensed into the following main category: focusing on the hospital stay and treatment or on everyday life with cancer.
Healthcare professionals need to be aware that they may influence the parents' decision, and they should consider that parents are often naïve in their situation. To optimize the decision, its timing should be carefully chosen. Parents often take the child's perspective and interpret the child's reactions as reflecting a wish to avoid needle jabs or to live an unhindered everyday life. Healthcare professionals informing families about central access devices need to address both hospital stays and everyday life with cancer, and they need to adopt a child-centered approach.
本研究旨在深入了解癌症患儿家长的经历以及他们为孩子选择中心静脉通路装置类型时所做的决定。
选择定性研究设计,以最大程度地捕捉该现象的全貌,即家长在决策过程中的经历。2015年12月至2016年1月,对17位在2014 - 2015年期间孩子被诊断患有癌症的家长进行了开放式访谈。采用归纳定性内容分析法对访谈进行分析。
对决策过程数据的分析产生了四个子类别:(a) 由于信息有限和医疗系统内的疏离感而感到不知所措;(b) 在没有全面了解情况的前提下迅速做出医疗决策的负担;(c) 从医疗专业人员那里收到相互矛盾的观点和方法;(d) 纳入孩子的观点。这四个子类别被归纳为以下主要类别:关注住院治疗还是关注患癌后的日常生活。
医疗专业人员需要意识到他们可能会影响家长的决策,并且应该考虑到家长在这种情况下往往缺乏经验。为了优化决策,应仔细选择决策时机。家长通常会考虑孩子的观点,并将孩子的反应理解为反映了其希望避免打针或过上不受阻碍的日常生活的愿望。向家庭介绍中心静脉通路装置的医疗专业人员需要兼顾住院治疗和患癌后的日常生活,并且需要采用以孩子为中心的方法。