Steinberg Annie G, Kaimal Girija, Bain Lisa, Krantz Ian, Li Yuelin
Deafness and Family Communication Center, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania 19104, USA.
Am J Med Genet A. 2007 Jul 15;143A(14):1533-45. doi: 10.1002/ajmg.a.31731.
Studies on parental attitudes towards genetic testing for hearing loss have surveyed parents of newborns with hearing loss as well as deaf and hearing adults. Although research indicates that most people have positive attitudes about genetic testing, few studies examine parental narratives about the personal implications of genetic hearing loss in their children. In this qualitative study we conducted semi-structured interviews with 24 parents whose children had been referred for, but had not yet undergone, genetic testing for hearing loss. The parents were recruited to represent a diverse range of racial, ethnic, and socioeconomic groups. Genetics and genetic testing for hearing loss were poorly understood topics. Beyond supporting or opposing genetic testing for hearing loss, parents' construction of meaning included struggles to locate responsibility (metaphysical attributions, ascription or alleviation of parental responsibility) as well as questions about the usefulness and implications of genetic testing for hearing loss in their child. Based on the themes that emerged from this study, we highlight the need for healthcare professionals to be aware and sensitized to parents' narratives, personal meanings and socio-cultural context when referring them for genetic testing for hearing loss. Listening attentively to parental narratives can help minimize prevailing misconceptions among parents and enable appropriate medical care and education.
关于父母对听力损失基因检测态度的研究，调查了患有听力损失的新生儿的父母以及失聪和听力正常的成年人。尽管研究表明大多数人对基因检测持积极态度，但很少有研究考察父母关于子女遗传性听力损失个人影响的叙述。在这项定性研究中，我们对24位其子女已被转诊但尚未接受听力损失基因检测的父母进行了半结构化访谈。这些父母的招募代表了不同的种族、民族和社会经济群体。遗传学以及听力损失的基因检测是人们了解甚少的话题。除了支持或反对听力损失基因检测外，父母对意义的构建还包括确定责任的挣扎（形而上学的归因、父母责任的归属或减轻）以及关于基因检测对其子女听力损失的有用性和影响的问题。基于本研究中出现的主题，我们强调医疗保健专业人员在为父母转诊进行听力损失基因检测时，需要了解并敏感对待父母的叙述、个人意义和社会文化背景。认真倾听父母的叙述有助于减少父母中普遍存在的误解，并提供适当的医疗护理和教育。
