Iversen Anne Solveig, Graue Marit, Clare Judith
J Pediatr Health Care. 2009 May-Jun;23(3):165-172. doi: 10.1016/j.pedhc.2008.04.006. Epub 2008 Jun 24.
This article explores parents' experiences when their child who is disabled with cerebral palsy was going through a surgical procedure. The literature suggests that parents' uncertainty is a consistent concept regarding the families' experiences in postoperative recovery unit.
A hermeneutic phenomenological in-depth interview was used, and data are analyzed and interpreted to reflect the words and actions of the participants. Parents of nine children with cerebral palsy were interviewed during recovery or after the children had recovered from the surgery.
The parents reported feeling vulnerable and helpless in a situation where children cannot express their concerns, and parents were fearful of the consequences of surgery, because they were not familiar with what is going on in the hospital. Extreme tiredness is an unrelenting condition in the experience of these parents, being constantly available for the child but also being strong for the child's sake.
Parents perceived that health professionals, especially those with limited experience with children with disabilities, did not understand parents or see parents as unique individuals who are linked to their child in a very special way. The importance of being aware of parents' previous experiences and the need to offer both parents and the child emotional support is clear from this study.
本文探讨了患有脑瘫的残疾儿童接受外科手术时家长的经历。文献表明，家长的不确定性是家庭在术后恢复单元经历中的一个持续存在的概念。
采用诠释现象学深度访谈法，对数据进行分析和解读以反映参与者的言语和行为。在患儿恢复期间或术后康复后，对9名脑瘫患儿的家长进行了访谈。
家长们表示，在孩子无法表达自身担忧的情况下，他们感到脆弱和无助，且由于不熟悉医院的情况，他们担心手术的后果。极度疲惫是这些家长经历中挥之不去的状况，他们既要时刻陪伴孩子，又要为了孩子表现得坚强。
家长们认为，医疗专业人员，尤其是那些对残疾儿童经验有限的人员，不理解家长，也没有将家长视为以非常特殊的方式与孩子相连的独特个体。从这项研究中可以清楚地看出，了解家长以往经历以及为家长和孩子提供情感支持的重要性。
