Parental narratives on genetic testing for children with hearing loss: a qualitative inquiry

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.