Sleigh G
National Perinatal Epidemiology Unit, Institute of Health Sciences, Oxford, UK.
Child Care Health Dev. 2005 Jul;31(4):373-83. doi: 10.1111/j.1365-2214.2005.00521.x.
Around one third of children with cerebral palsy have severe difficulty eating and drinking and are at risk of undernourishment. A gastrostomy feeding tube may be offered as a way of providing nourishment as it bypasses the main physical difficulties. For the families feeding and concerns about the method of feeding affect many areas of their daily life but we know little about what the experience is actually like. This study aimed to explore mothers' experience of feeding children with cerebral palsy.
Ten principal carers for children with cerebral palsy and severe eating difficulty were interviewed. Four of the children, one girl and three boys aged 2.5 to 4.5 years were being fed solely by mouth and six children, three girls and three boys, aged 4.5 years to 15 years and 10 months, were fed via a gastrostomy feeding tube. Long, loosely structured tape recorded interviews were transcribed and manually analysed using a phenomenological approach. This involved extracting and coding each relevant phrase that contained meaning; then through sequential stages of ordering and reduction into themes the invariant meanings were uncovered. The transcripts were analysed in two groups, oral and gastrostomy feeding, in an identical manner.
Phenomenological analysis resulted in two prose accounts that described in depth the essence of the experience. The accounts were mutually informative. Both groups treasured feeding by mouth suggesting that support for oral feeding should be given a higher priority. The accounts explained why some professional encounters added to families' stress and why consistency of care is so important. The study gives insight about the kinds of support families find helpful.
This study should help those involved to understand the families' predicament better and so make a contribution towards providing more appropriate support.
约三分之一的脑瘫儿童在饮食方面存在严重困难，并有营养不良的风险。胃造口喂养管可作为一种提供营养的方式，因为它绕过了主要的身体困难。对于家庭来说，喂养孩子以及对喂养方式的担忧影响着他们日常生活的许多方面，但我们对实际体验了解甚少。本研究旨在探索母亲喂养脑瘫儿童的经历。
对10名照顾患有脑瘫且严重饮食困难儿童的主要照料者进行了访谈。其中4名儿童，1名女孩和3名年龄在2.5至4.5岁的男孩仅通过口腔进食，另外6名儿童，3名女孩和3名年龄在4.5岁至15岁10个月的男孩通过胃造口喂养管进食。采用现象学方法对长时间、结构松散的录音访谈进行转录和人工分析。这包括提取和编码每个包含意义的相关短语；然后通过排序和归纳为主题的连续阶段，揭示不变的意义。以相同的方式对访谈记录进行两组分析，即口腔喂养组和胃造口喂养组。
现象学分析得出了两篇深入描述体验本质的散文式描述。这两篇描述相互提供信息。两组都珍视口腔喂养，表明应更优先支持口腔喂养。这些描述解释了为什么一些与专业人员的接触会增加家庭压力，以及为什么护理的一致性如此重要。该研究深入了解了家庭认为有帮助的支持类型。
本研究应有助于相关人员更好地理解家庭的困境，从而为提供更适当的支持做出贡献。
