Smethurst Gabrielle, Bourke-Taylor Helen M, Cotter Claire, Beauchamp Fiona
Occupational Therapy Department, School of Primary and Allied Health Care, Faculty of Medicine Nursing and Health Sciences, Monash University, Frankston, VIC, Australia.
Cerebral Palsy Education Centre, Glen Waverley, VIC, Australia.
Aust Occup Ther J. 2021 Jun;68(3):205-216. doi: 10.1111/1440-1630.12715. Epub 2020 Dec 28.
At least 40 percent of children with cerebral palsy and their families rely on access to allied health services, assistive technology, and require funding and expertise to achieve skills and participate in daily life. Implementation of the National Disability Insurance Scheme (NDIS) has resulted in a shift to public funding and emphasis on choice and control of services, support and assistive technology to promote social and economic participation. Families of children with cerebral palsy are invested in scheme success and their subjective experiences require consideration if the NDIS is to meet participation targets.
The aim of this research was to explore the experiences of families with a child with cerebral palsy, who have been in receipt of the NDIS for 12 months, comparisons to previous funding systems, and recommendations for the NDIS going forward.
Purposive sampling was utilised within one specialised paediatric setting. All families received occupational therapy intervention for their child. A qualitative approach using semi structured interviews was employed. Braun and Clarke's six phases of thematic analysis was utilised to analyse the data and explore participants lived experiences.
Eight (n = 8) mothers of children with cerebral palsy were interviewed. Three overarching themes were derived from the data: Equipment impacts on all areas of life; Frustration navigating the National Disability Insurance Scheme; and Gratitude, hope and suggestions.
Families reported challenges navigating the NDIS including administrative challenges and extensive wait times for assistive technology, as well as gratefulness for increased opportunities for support. Occupational therapists and other allied health professionals can assist by: being proactive in service delivery and advocating for the needs of individual families and children; and finding ways to increase the preparedness of the NDIS to better understand the needs of children with cerebral palsy and their families.
至少40%的脑瘫儿童及其家庭依赖于获得联合健康服务、辅助技术，并且需要资金和专业知识来掌握技能并参与日常生活。国家残疾保险计划（NDIS）的实施导致了资金来源向公共资金的转变，并强调了对服务、支持和辅助技术的选择与控制权，以促进社会和经济参与。如果NDIS要实现参与目标，脑瘫儿童家庭对该计划的成功至关重要，其主观体验需要得到考虑。
本研究的目的是探索有脑瘫儿童的家庭在接受NDIS 12个月后的经历，与以前的资助系统进行比较，并为NDIS的未来发展提出建议。
在一个专门的儿科环境中采用了目的抽样法。所有家庭都为其孩子接受了职业治疗干预。采用了半结构化访谈的定性方法。运用了布劳恩和克拉克的六个主题分析阶段来分析数据并探索参与者的生活经历。
采访了八位（n = 8）脑瘫儿童的母亲。从数据中得出了三个总体主题：设备对生活各个方面的影响；在国家残疾保险计划中遇到的挫折；以及感激、希望和建议。
家庭报告了在NDIS中遇到的挑战，包括行政方面的挑战以及辅助技术的漫长等待时间，同时也对获得更多支持机会表示感激。职业治疗师和其他联合健康专业人员可以通过以下方式提供帮助：积极主动地提供服务并倡导满足个别家庭和儿童的需求；以及寻找方法提高NDIS的准备程度，以便更好地理解脑瘫儿童及其家庭的需求。
