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American Journal of Audiology Vol.16 57-67 June 2007. doi:10.1044/1059-0889(2007/005)
© American Speech-Language-Hearing Association
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Research and Technology | Articles

Parental Narratives of Genetic Testing for Hearing Loss: Audiologic Implications for Clinical Work With Children and Families

Annie Steinberg, Girija Kaimal, Rachel Ewing, Lisa P. Soslow, Kathleen M. Lewis and Ian Krantz

The Children's Hospital of Philadelphia

Yuelin Li

Memorial Sloan-Kettering Cancer Center, New York

Contact author: Annie Steinberg, P.O. Box 531, Narberth, PA 19072. E-mail: drannie{at}mail.med.upenn.edu.

Purpose: Few studies have examined how parents personalize the possibility of genetic hearing loss in their children and whether they actually intend to pursue testing for their child. This article addresses the audiologist's important role in the genetic testing referral and follow-up processes.

Method: Twenty-four parents whose children were referred to genetic testing for hearing loss were interviewed in depth. Parents were selected to include a diverse range of races, ethnicities, and socioeconomic levels. Interviews were coded and analyzed using qualitative methods.

Results: Parental associations with genetic testing included feeling personally responsible, feeling relief, and considering metaphysical attributions for their child's hearing loss. Parental attitudes were related to perceptions and experiences with deafness. Many misconceptions about genetics were also found.

Conclusions: Audiologists need to be sensitized to parents' personal and sociocultural contexts when discussing genetic testing and should tailor informational and emotional support to parents' requirements when confronting the possibility of their child having a genetic hearing loss.

Key Words: hearing loss, parents, referral, genetics






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