Cerebral Palsy Institute, Darlinghurst, Sydney, Australia.
Phys Occup Ther Pediatr. 2011 May;31(2):198-213. doi: 10.3109/01942638.2010.533746. Epub 2010 Dec 1.
The aim of this preliminary study was to describe parent views about implementing effective home programs to inform practice recommendations. Semi-structured interviews were conducted with 10 parents of children with cerebral palsy (2 fathers and 8 mothers) who had participated in a home program by using a partnership-based approach. Transcripts were analyzed using grounded theory to the level of open coding of categories. Parents believed practice of home program activities was a part of life, to maximize progress, gain guidance, and manage time. Partnership-based home programs provided benefits including support, realism, flexibility, motivation, generalisable activities, practice reminders, progress updates, and role clarification. Parents advised other parents to accept their child's disability, never refuse help, be honest, develop routines, and consider programs essential. Parents advised professionals that parents want support, interdisciplinary coordination, and prognostic information, without pressure to comply. The findings suggest that parents experienced benefits using partnership home programs. Parents used these programs to help parent their child. Provision of ongoing support to parents was vital for motivation.
本初步研究旨在描述家长对实施有效家庭计划的看法,以为实践建议提供信息。通过采用基于合作的方法,对 10 名脑瘫儿童的家长(2 名父亲和 8 名母亲)进行了半结构化访谈。使用扎根理论对转录本进行了开放式编码类别的分析。家长们认为家庭计划活动的实践是生活的一部分,以最大限度地提高进展,获得指导,并管理时间。基于合作的家庭计划提供了一些好处,包括支持、现实性、灵活性、动机、可推广的活动、实践提醒、进展更新和角色澄清。家长们建议其他家长接受孩子的残疾,永远不要拒绝帮助,要诚实,制定日常生活规律,并认为这些计划是必不可少的。家长们建议专业人士为家长提供支持、跨学科协调和预后信息,而不要施加压力让其遵守规定。研究结果表明,家长在使用基于合作的家庭计划时体验到了好处。家长们使用这些计划来帮助养育自己的孩子。为家长提供持续的支持对于激发动力至关重要。