How does an autism diagnosis impact a child and their carer in regional Australia?

IF 1.6 4区 医学 Q2 PEDIATRICS Journal of paediatrics and child health Pub Date : 2024-11-30 DOI:10.1111/jpc.16725
Alyssia J De Grandi, David H Newsom
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引用次数: 0

Abstract

Aim

Autism spectrum disorder (ASD) is a common neurodevelopmental disorder. This study aims to investigate the impact of an ASD diagnosis on children and their carers from a regional/rural Australian perspective.

Methods

A three-part survey development study included: (i) Semi-structured individual ASD carer interviews to identify common themes; (ii) survey development and testing; and (iii) online survey circulation to wider group of carers, for data collection and analysis.

Results

Transcripts from eight carer interviews guided the development of 65 survey questions. The survey was circulated to 316 carers of children diagnosed with ASD. Of the 101 respondents, 95% were female, 86% regional and 12% were rural inhabitants. The average child's age at diagnosis was 6.64 years. Most carers (93%) reported that diagnosis of ASD met their goal, for some an improved understanding of their child's behaviour (39%) and allowing access to therapy (16%), government disability funding (National Disability Insurance Scheme) (19%) and learning support (9%). Some (44%) reported no downsides to an ASD diagnosis; however, 38% reported fears of discrimination, particularly with future relationships (5%) and employment (14%). Barriers included waiting times (16%), costs of appointments (9.9%) and difficulty navigating through the health system (5.9%). Only five participants reported having no costs associated with appointments.

Conclusions

Carers had positive attitudes and experiences regarding their child's ASD diagnosis. The benefits outweighed the perceived harms. Barriers to accessing services included waiting times, out-of-pocket expenses and travel distance.

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在澳大利亚地区,自闭症诊断对儿童及其照顾者有何影响?
目的:自闭症谱系障碍(ASD)是一种常见的神经发育障碍。本研究旨在从澳大利亚地区/农村的角度调查ASD诊断对儿童及其照顾者的影响。方法:一项由三部分组成的调查发展研究包括:(i)半结构化的个体ASD护理人员访谈,以确定共同主题;(ii)调查发展及测试;(三)向更广泛的护理人员发放网上调查问卷,以收集和分析数据。结果:来自8个职业访谈的文字记录指导了65个调查问题的发展。这项调查在316名被诊断患有自闭症的儿童的护理人员中进行了分发。在101名受访者中,95%为女性,86%为地区居民,12%为农村居民。儿童确诊时的平均年龄为6.64岁。大多数护理人员(93%)报告说,自闭症谱系障碍的诊断达到了他们的目标,其中一些人对孩子的行为有了更好的了解(39%),并允许接受治疗(16%),政府残疾资助(国家残疾保险计划)(19%)和学习支持(9%)。一些(44%)报告ASD诊断没有负面影响;然而,38%的人表示担心受到歧视,特别是在未来的关系(5%)和就业(14%)方面。障碍包括等待时间(16%)、预约费用(9.9%)和难以通过卫生系统(5.9%)。只有5名参与者表示没有与预约相关的费用。结论:护理人员对孩子的ASD诊断有积极的态度和经验。利大于弊。获得服务的障碍包括等待时间、自付费用和旅行距离。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
2.90
自引率
5.90%
发文量
487
审稿时长
3-6 weeks
期刊介绍: The Journal of Paediatrics and Child Health publishes original research articles of scientific excellence in paediatrics and child health. Research Articles, Case Reports and Letters to the Editor are published, together with invited Reviews, Annotations, Editorial Comments and manuscripts of educational interest.
期刊最新文献
Association Between Hammersmith Infant Neurological Examination and Bayley Scales of Infant Development in High-Risk Infants: A Retrospective Cohort Study. Developmental and Psychological Concerns in Children With Complex Congenital Heart Disease: The Need for a Screening Program. Extreme Sinus Bradycardia in a 36-Week Neonate Caused by De Novo Short QT Syndrome: A Case Report. Issue Information Do the American Academy of Paediatrics Guidelines for Managing Febrile Infants Aged 22 to 28 Days Work for a Suburban Australian Emergency Department? A Retrospective Audit.
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