Maternal & Child Health Nursing Department, Faculty of Nursing, Jordan University of Science and Technology, P.O. Box (3030), Irbid 22110, Jordan.
Maternal & Child Health Nursing Department, Faculty of Nursing, Jordan University of Science and Technology, Irbid, Jordan.
J Pediatr Nurs. 2023 Mar-Apr;69:e127-e135. doi: 10.1016/j.pedn.2022.12.026. Epub 2022 Dec 29.
Available literature showed that mothers of children with hydrocephalus experience many challenges. Studies that described mothers' experiences in caring for their children with hydrocephalus are limited. Understanding the mothers' experiences and challenges is essential and may enable the provision of increased knowledge and support for these mothers.
The aim of this study was to explore the lived experiences of Jordanian mothers of children with hydrocephalus.
A phenomenological descriptive approach was applied in this study, using semi-structured interviews with a purposive sample of 10 mothers of children with hydrocephalus. Transcribed interviews were analyzed using thematic approach.
Three main themes that explored the mothers' experiences emerged from the data analysis process. The first theme was the impact of living with a child with hydrocephalus. Four subthemes comprise this theme; namely the mothers' initial response, overwhelming responsibilities, social withdrawal, and adapting: loving the baby and growing stronger. The second theme was related to the support system. Two subthemes compose this theme; the role of husband, and social support. The last theme was related to feelings of uncertainty. Two subthemes constitute this theme; concerns about the child's future and considering abortion as a solution.
The mothers in this study were found to have experienced many intense feelings and to have faced many stressors and difficulties associated with the different stages of their child's illness. This study provides evidence that could be used to develop guidelines to support mothers of children with hydrocephalus.
现有文献表明，脑积水患儿的母亲会面临诸多挑战。描述照顾脑积水患儿的母亲体验的研究有限。了解母亲的体验和挑战至关重要，这可能为这些母亲提供更多的知识和支持。
本研究旨在探讨约旦脑积水患儿母亲的生活体验。
本研究采用现象学描述方法，对 10 名脑积水患儿的母亲进行了有目的的半结构式访谈。采用主题分析法对转录的访谈进行分析。
从数据分析过程中出现了三个主题，探讨了母亲的体验。第一个主题是与患有脑积水的孩子生活的影响。这一主题包含四个子主题：母亲的最初反应、压倒性的责任、社会退缩和适应：爱孩子并变得更强大。第二个主题与支持系统有关。这一主题包含两个子主题：丈夫的角色和社会支持。最后一个主题与不确定性的感觉有关。这一主题包含两个子主题：对孩子未来的担忧和考虑堕胎作为一种解决方案。
本研究中的母亲被发现经历了许多强烈的感受，并面临着与孩子疾病的不同阶段相关的许多压力和困难。本研究提供的证据可用于制定支持脑积水患儿母亲的指南。
