Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences
Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences
复制标题
悲伤、应对和恢复能力：脑瘫儿童家长分享他们的经历
DOI：
10.3109/09638288.2012.737081
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发表时间：
2013
影响因子：
2.2
通讯作者：
R. Boyd
中科院分区：
文献类型：
--
作者：
K. Whittingham;D. Wee;M. Sanders;R. Boyd
目的：探讨脑瘫患儿父母的悲伤、应对和恢复体验，并探讨慢性悲伤理论作为理解这些体验的框架的适用性。方法：本研究采用焦点小组和基于网络的横断面调查相结合的方法，探讨CP患儿父母的慢性悲伤。讨论内容逐字抄录，并进行专题分析。另外94名家长参与了基于网络的调查研究，他们完成了关于慢性悲伤的改编伯克问卷。对调查结果进行内容分析以证实初步的定性分析。结果：焦点小组家长的报告与慢性悲伤理论一致，家长对网络调查的反应也是如此。一些家长认为诊断结果本身是一段痛苦的时光，而另一些家长则认为这是一种解脱。家长报告说，医疗和联合卫生干预的时间特别具有挑战性。结论：慢性后悔理论是理解CP患儿父母经历的一种有用的方法。建议健康从业者注意到，即使在诊断多年后，CP患儿的父母可能会在触发事件后经历加剧的慢性悲伤症状，这是正常的。本研究表明，慢性悲伤理论是理解CP患儿父母经历的一个合适的框架。CP患儿的父母可能会在触发事件后经历加剧的悲伤，甚至在诊断后数年。这种反复出现的悲伤过程是健康和正常的，许多父母通过使用一系列应对策略或寻求健康专业人士的支持来展示韧性。
Purpose: To explore the grieving, coping and resiliency experiences of parents of children with cerebral palsy (CP) and to investigate the suitability of chronic sorrow theory as a framework to understand those experiences. Methods: This study combined focus groups with a web-based cross-sectional survey to explore chronic sorrow in parents of children with CP. Eight parents of children with CP participated in focus groups. The discussion was transcribed verbatim and thematic analysis was performed. A further 94 parents participated in the web-based survey study in which they completed the Adapted Burke Questionnaire on chronic sorrow. A content analysis of responses was used to confirm the primary qualitative analysis. Results: The reports of parents in the focus group were consistent with chronic sorrow theory, as were the responses of parents to the web-based survey. Some parents found the diagnosis itself a distressing time whereas others found it a relief. Parents reported that times of medical and allied health intervention were particularly challenging. Conclusion: Chronic sorry theory is a useful way of understanding the experiences of parents of children with CP. It is recommended that health practitioners are mindful that, even years after diagnosis, parents of children with CP may experience intensified chronic sorrow symptoms following a triggering event and that this is normal. Implications for Rehabilitation This study suggests that chronic sorrow theory is a suitable framework in which to understand the experiences of parents of children with CP. Parents of children with CP may experience intensified grief following a triggering event, even years after diagnosis. This recurring grieving process is healthy and normal with many parents demonstrating resilience by using an array of coping strategies or seeking support from health professionals.