Young Alys, Tattersall Helen
School of Nursing, Midwifery and Social Work, University of Manchester, Coupland III, Oxford Road, Manchester M13 9PL, United Kingdom.
J Deaf Stud Deaf Educ. 2007 Spring;12(2):209-20. doi: 10.1093/deafed/enl033. Epub 2007 Feb 2.
This article presents results from an interview study of 45 parents/caregivers (representing 27 families) whose infants were correctly identified as deaf during the first phase of the implementation of the national universal Newborn Hearing Screening Programme in England. Average age of children when parents were interviewed was 25 weeks. Two issues are explored: (a) how parents talk about significance of knowing early that their child is deaf and (b) parents' expectations of their child's development in light of early identification. Although results demonstrate clear support from parents' perspective of knowing early, they also identify the psychological complexities of recognizing both the grief and reassurance that early knowledge brings; the risks of early knowledge-inducing timetables of expectations that create distress when not met speedily; the extent to which parental models of the developmental advantages of early identification are underpinned by notions of normal speech and the possibility of being like hearing children; and the pervasiveness of deficit and illness models associated with having identified deafness early. Implications for parental support and professional responses are also discussed.
本文呈现了一项针对45位父母/照料者(代表27个家庭)的访谈研究结果,这些父母/照料者的婴儿在英格兰国家通用新生儿听力筛查计划实施的第一阶段被正确诊断为失聪。父母接受访谈时孩子的平均年龄为25周。探讨了两个问题:(a)父母如何谈论尽早知道孩子失聪的重要性;(b)鉴于早期诊断,父母对孩子发展的期望。尽管结果从父母尽早知晓的角度显示出明确的支持,但它们也揭示了认识到早期知晓所带来的悲伤与安心的心理复杂性;早期知晓引发期望时间表的风险,当这些期望未能迅速实现时会造成困扰;父母关于早期诊断的发展优势的模式在多大程度上以正常言语观念以及像听力正常儿童一样的可能性为支撑;以及与早期确诊失聪相关的缺陷和疾病模式的普遍性。还讨论了对父母支持和专业应对措施的影响。