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Parents' Experiences of Health Care for Their Children With Cerebral Palsy

机译：父母对脑瘫患儿的保健经验

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Although current health care service delivery approaches for children with cerebral palsy recognize the importance of including parents in the health care of their child, we do not yet understand how parents experience this phenomenon. In this study, we used grounded theory methodology to explore parents' experiences of health care for their children with cerebral palsy living in a regional area of Australia. Our findings indicate that parents experience health care for their child as a cyclical process of making the most of their body and their life. Important aspects of care include learning as you go, navigating the systems, meeting needs through partnership, being empowered or disempowered, and finding a balance. We suggest modifications to health care service delivery practices that might contribute to improved experiences of health care for this population.
机译：尽管当前针对脑瘫儿童的医疗服务提供方法已经认识到将父母包括在其孩子的医疗保健中的重要性，但我们仍不了解父母如何经历这种现象。在这项研究中，我们使用扎根的理论方法来探讨父母对居住在澳大利亚某个地区的脑瘫患儿的医疗保健经验。我们的发现表明，父母会为孩子们提供医疗保健，这是一个充分利用自己的身体和生活的周期性过程。护理的重要方面包括：边走边学，导航系统，通过伙伴关系满足需求，被授权或被剥夺权力以及寻找平衡。我们建议对医疗服务的提供方式进行修改，以改善该人群的医疗体验。

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