Finsen Centret, Copenhagen University Hospital, Denmark.
J Adv Nurs. 2011 Jul;67(7):1458-67. doi: 10.1111/j.1365-2648.2010.05587.x. Epub 2011 Feb 16.
The aim of this study was to investigate the parents' experiences and reflections on their parental role while taking care of their child.
Parents of children undergoing treatment with allogeneic haematopoetic stem cell transplantation for life threatening diseases in protective isolation, experience distress related to the child's care. Parents struggle to cope with the stress related to the child's disease, treatment and survival possibilities.
During the period 2007-2009, eight participant studies and 16 in-depth interviews were performed and analysed using a theoretical ideal type construction and an interactionistic approach.
Three ideal types of approaches were identified (1) expertise-mindedness, (2) dialogue-mindedness and (3) the approach of the socially challenged parents. Expertise-minded parents base their rationality for care and interactions on medical knowledge. It is important for dialogue-minded parents that emotions are included in the rationality for care. Being able to manage these two approaches requires emotional work in the form of both surface- and deep acting from the parents. Socially challenged parents fail to adapt to either of the two approaches since they often fail to manage the required emotional work.
The three described ideal types give a new perspective on the complex interactions that occur between parents, child and staff during treatment with haematopoetic stem cell transplantation. Understanding the rationality behind the different approaches adopted by parents may assist medical staff to understand the parents' rationality for care of their child and to identify socially challenged parents who need help in managing the care of their child.
本研究旨在探讨父母在照顾患病子女时的育儿经验和反思。
在保护性隔离中接受同种异体造血干细胞移植治疗危及生命疾病的患儿的父母，在照顾孩子时会经历与孩子疾病相关的痛苦。父母努力应对与孩子疾病、治疗和生存可能性相关的压力。
在 2007 年至 2009 年期间，进行了八项参与者研究和 16 次深入访谈，并使用理论理想类型构建和交互作用方法进行分析。
确定了三种理想的方法类型（1）专业思维，（2）对话思维和（3）社会挑战型父母的方法。专业思维的父母将其护理和互动的合理性建立在医学知识的基础上。对于对话思维的父母来说，情感包括在护理的合理性中是很重要的。能够管理这两种方法需要父母以表面和深度表演的形式进行情感工作。社会挑战型父母无法适应这两种方法中的任何一种，因为他们通常无法管理所需的情感工作。
这三种描述的理想类型为在接受造血干细胞移植治疗期间父母、孩子和工作人员之间发生的复杂互动提供了新的视角。理解父母所采用的不同方法背后的合理性，可能有助于医务人员理解父母照顾孩子的合理性，并识别需要帮助管理孩子护理的社会挑战型父母。
