Brighton and Sussex Medical School, University of Sussex, Brighton, UK.
School of Media Arts and Humanities, University of Sussex, Brighton, UK.
BMJ Paediatr Open. 2022 Aug;6(1). doi: 10.1136/bmjpo-2022-001411.
Autistic adults and children experience considerable health inequalities and have high rates of premature mortality, hospital admissions and emergency department visits. This is in part due to a lack of autism awareness in the healthcare and social care workforce. A new educational programme, Time for Autism (TfA), for medical students is being developed to address this challenge. This qualitative study was undertaken to support the development of the new programme in order to (1) understand the medical care experiences of parents of autistic children and (2) assess their views on the acceptability of the new TfA programme and willingness to be involved.
A convenience sample of 11 parents of autistic children were recruited across the South of England. The ages of the autistic children ranged from 3 to 17 years. Semistructured interviews were completed between October and December 2019. Interview transcripts were analysed using thematic analysis.
Three key themes were identified: diagnosis, experiences of doctors and TfA considerations. There was support for and willingness to take part in a dedicated autism education programme for medical students, and constructive feedback to inform and improve its delivery.
The findings from this study provide insights into the medical care experiences of parents/carers of autistic children. Understanding how parents/carers of autistic children would like medical care to be improved can be used to develop TfA and other autism programmes. Parental/carer support for the development of and involvement in an autism medical education programme enhances the feasibility of the new programme.
自闭症患者(包括成人和儿童)在健康方面存在显著的不平等现象,且死亡率较高,住院率和急诊就诊率也较高。这在一定程度上是由于医疗保健和社会保健人员对自闭症的认识不足。目前正在为医学生开发一个新的教育项目“自闭症时间”(Time for Autism,TfA),以应对这一挑战。本研究旨在支持新方案的开发,以(1)了解自闭症儿童家长的医疗护理经验,(2)评估他们对新 TfA 方案的可接受性和参与意愿。
在英格兰南部招募了 11 名自闭症儿童的家长作为便利样本。自闭症儿童的年龄在 3 至 17 岁之间。2019 年 10 月至 12 月期间完成了半结构化访谈。使用主题分析法对访谈记录进行了分析。
确定了三个关键主题:诊断、医生的经验和 TfA 注意事项。家长/照顾者支持并愿意参加专为医学生设计的自闭症教育计划,并提出建设性反馈,以告知和改进该计划的实施。
这项研究的结果提供了对自闭症儿童家长/照顾者医疗护理经验的深入了解。了解家长/照顾者希望如何改进自闭症儿童的医疗护理,可以用来开发 TfA 和其他自闭症计划。家长/照顾者对自闭症医学教育计划的开发和参与的支持,增强了新计划的可行性。