Kushalnagar Poorna, Mathur Gaurav, Moreland Christopher J, Napoli Donna Jo, Osterling Wendy, Padden Carol, Rathmann Christian
Department of Health Services, University of Washington, Seattle, USA.
J Clin Ethics. 2010 Summer;21(2):143-54.
Around 96 percent of children with hearing loss are born to parents with intact hearing, who may initially know little about deafness or sign language. Therefore, such parents will need information and support in making decisions about the medical, linguistic, and educational management of their child. Some of these decisions are time-sensitive and irreversible and come at a moment of emotional turmoil and vulnerability (when some parents grieve the loss of a normally hearing child). Clinical research indicates that a deaf child's poor communication skills can be made worse by increased level of parental depression. Given this, the importance of reliable and up-to-date support for parents' decisions is critical to the overall well-being of their child. In raising and educating a child, parents are often offered an exclusive choice between an oral environment (including assistive technology, speech reading, and voicing) and a signing environment. A heated controversy surrounds this choice, and has since at least the late 19th century, beginning with the International Congress on the Education of the Deaf in Milan, held in 1880. While families seek advice from many sources, including, increasingly, the internet, the primary care physician (PCP) is the professional medical figure the family interacts with repeatedly. The present article aims to help family advisors, particularly the PCP and other medical advisors in this regard. We argue that deaf children need to be exposed regularly and frequently to good language models in both visual and auditory modalities from the time hearing loss is detected and continued throughout their education to ensure proper cognitive, psychological, and educational development. Since there is, unfortunately, a dearth of empirical studies on many of the issues families must confront, professional opinions, backed by what studies do exist, are the only option. We here give our strongly held professional opinions and stress the need for improved research studies in these areas.
约96%听力受损儿童的父母听力正常,这些父母最初可能对耳聋或手语知之甚少。因此,这类父母在就孩子的医疗、语言和教育管理做出决策时需要信息和支持。其中一些决策具有时间敏感性且不可逆转,而且是在情绪动荡和脆弱的时刻做出的(有些父母会为失去一个听力正常的孩子而悲痛)。临床研究表明,父母抑郁程度的增加会使失聪儿童本就不佳的沟通能力进一步恶化。鉴于此,为父母的决策提供可靠且最新的支持对于孩子的整体幸福至关重要。在养育和教育孩子方面,父母通常只能在口语环境(包括辅助技术、唇读和发声)和手语环境之间做出排他性选择。围绕这一选择存在激烈争议,至少自19世纪末以来就是如此,始于1880年在米兰举行的国际聋人教育大会。虽然家庭会从许多渠道寻求建议,互联网渠道的咨询日益增多,但初级保健医生是家庭反复接触的专业医疗人员。本文旨在帮助家庭顾问,特别是这方面的初级保健医生和其他医疗顾问。我们认为,从发现听力损失之时起,失聪儿童就需要经常且定期地接触视觉和听觉两种模式下的良好语言模型,并在整个教育过程中持续接触,以确保其认知、心理和教育的正常发展。不幸的是,对于家庭必须面对的许多问题,实证研究匮乏,因此现有研究支持的专业意见是唯一选择。我们在此给出我们坚定的专业意见,并强调在这些领域改进研究的必要性。