Russ S A, Kuo A A, Poulakis Z, Barker M, Rickards F, Saunders K, Jarman F C, Wake M, Oberklaid F
Centre for Community Child Health, Royal Children's Hospital, Melbourne, Australia.
Arch Dis Child. 2004 Apr;89(4):353-8. doi: 10.1136/adc.2002.024125.
To determine key themes from parents' comments on paths to diagnosis and intervention for their children with hearing loss, following introduction of at-risk neonatal hearing screening and modification of distraction test screening for infants not at-risk.
Parents of children born in 1993 in Victoria, Australia, who were eligible for screening via the Victorian Infant Hearing Screening Program and who were subsequently diagnosed with a permanent congenital hearing loss and fitted with hearing aids prior to the year 2000 were asked to complete a semi-structured questionnaire shortly after aid fitting. Two researchers independently analysed parent comments using the constant comparative method.
Parents of 82 children (61%) replied to the questionnaire. Themes analysis revealed a generally positive response to neonatal ABR screening, with a mixed response to the distraction test; powerful emotions experienced by parents at diagnosis including denial and shock; frustration arising from delays in diagnosis, and communication difficulties with providers. Special difficulties testing children with other medical and developmental problems, confusion about tympanostomy tube insertion, and difficulty with wearing hearing aids were also reported. Some children had experienced problems in the school setting. Experience of post-diagnostic services was generally positive.
Parents need greater support both during the testing of screen failures and at the time of diagnosis. Providers need more training in how to communicate findings to parents, particularly at times when parents are experiencing strong emotions. Parents need more strategies to enable hearing aid wearing in very young children. Some children with additional medical, developmental, and behavioural problems need specialised approaches to testing.
在引入高危新生儿听力筛查以及对非高危婴儿的分心测试筛查进行调整之后，确定家长对于其听力损失儿童的诊断及干预途径的评论中的关键主题。
邀请1993年在澳大利亚维多利亚州出生、有资格通过维多利亚州婴儿听力筛查项目进行筛查且随后被诊断为永久性先天性听力损失并于2000年前佩戴助听器的儿童的家长，在佩戴助听器后不久完成一份半结构化问卷。两名研究人员使用持续比较法独立分析家长的评论。
82名儿童（61%）的家长回复了问卷。主题分析显示，家长对新生儿听性脑干反应（ABR）筛查总体反应积极，对分心测试反应不一；家长在诊断时经历了强烈的情绪，包括否认和震惊；因诊断延迟而产生沮丧情绪，以及与医疗服务提供者沟通困难。还报告了在对有其他医疗和发育问题的儿童进行测试时遇到的特殊困难、对鼓膜置管的困惑以及佩戴助听器的困难。一些儿童在学校环境中遇到过问题。诊断后服务的体验总体上是积极的。
在对筛查未通过者进行测试期间以及诊断时，家长需要更多支持。医疗服务提供者需要接受更多关于如何向家长传达检查结果的培训，尤其是在家长情绪强烈的时候。家长需要更多策略来帮助幼儿佩戴助听器。一些有额外医疗、发育和行为问题的儿童需要专门的测试方法。
