Article  |   June 2007
Parental Narratives of Genetic Testing for Hearing Loss: Audiologic Implications for Clinical Work With Children and Families
 
Author Affiliations & Notes
  • Girija Kaimal
    The Children’s Hospital of Philadelphia
  • Rachel Ewing
    The Children’s Hospital of Philadelphia
  • Lisa P. Soslow
    The Children’s Hospital of Philadelphia
  • Kathleen M. Lewis
    The Children’s Hospital of Philadelphia
  • 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@mail.med.upenn.edu.
  • © 2007 American Speech-Language-Hearing AssociationAmerican Speech-Language-Hearing Association
Article Information
Hearing Disorders / Special Populations / Genetic & Congenital Disorders
Article   |   June 2007
Parental Narratives of Genetic Testing for Hearing Loss: Audiologic Implications for Clinical Work With Children and Families
American Journal of Audiology, June 2007, Vol. 16, 57-67. doi:10.1044/1059-0889(2007/005)
History: Received August 4, 2006 , Accepted March 29, 2007
 
American Journal of Audiology, June 2007, Vol. 16, 57-67. doi:10.1044/1059-0889(2007/005)
History: Received August 4, 2006; Accepted March 29, 2007

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.

Acknowledgments
This study was funded as part of the National Institutes of Health project “Outcomes of Genetic Testing for Hearing Impairment” (Grant RO1 DC005247). We would like to thank Judith Gravel, PhD, and Carol A. Knightly, AuD, for their valuable comments on the manuscript and for their assistance at various stages of this project.
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