Gyllén Jenny, Magnusson Gunilla, Forsberg Anna
Institute of Neuroscience and Physiology/Ophthalmology, University of Gothenburg, Sweden.
Institute of Neuroscience and Physiology/Ophthalmology, University of Gothenburg, Sweden.
J Pediatr Nurs. 2019 Jan-Feb;44:e45-e51. doi: 10.1016/j.pedn.2018.10.017. Epub 2018 Nov 8.
To investigate the main concerns associated with being a parent of a child with cataract and how the parents deal with these concerns.
Twenty-three parents; 6 mothers, 5 fathers and 6 couples with a child with cataract were included in this study. The parents included some with a personal experience of cataract and some without. Data was collected through 17 in-depth interviews, which were recorded and transcribed verbatim for analysis by the method of Grounded Theory developed by Charmaz.
The Grounded Theory describes the parents' efforts to balance the child's inability and ability in order to maintain their social functioning and lead a normal life through a process comprising four main categories; Mastering, Collaborating, Facilitating, and Adapting. This process makes the path of transition evident, starting when the child is diagnosed and continuing for several years during her/his growth and development.
The core of parent-child interaction is mastering the balance between the child's disability and ability in order to achieve the best possible outcome, visually and habitually. The interactions changes through a process towards adjustment and acceptance. All the parents emphasized that you do what you have to do to achieve a successful visual outcome of the child.
The model provides a comprehensive understanding of parental self-management that can be used by a case manager, preferable a nurse, to pilot the parents through the process.
探讨作为白内障患儿家长所面临的主要担忧，以及家长如何应对这些担忧。
本研究纳入了23位家长，其中包括6位母亲、5位父亲以及6对育有白内障患儿的夫妇。这些家长中有些有白内障的个人经历，有些则没有。通过17次深度访谈收集数据，访谈进行了录音并逐字转录，采用查玛兹开发的扎根理论方法进行分析。
扎根理论描述了家长为平衡孩子的无能与能力所做的努力，以便通过一个包含四个主要类别的过程来维持他们的社会功能并过上正常生活，这四个类别分别是：掌握、协作、促进和适应。这个过程使从孩子被诊断时开始，贯穿其成长和发育的数年时间里的转变路径清晰可见。
亲子互动的核心是掌握孩子残疾与能力之间的平衡，以便在视觉和习惯方面取得尽可能好的结果。互动通过一个朝着调整和接受的过程而改变。所有家长都强调，为了让孩子获得成功的视觉结果，你必须尽你所能去做。
该模型提供了对家长自我管理的全面理解，可以被个案管理员（最好是护士）用来引导家长完成这个过程。
