Journal of Genetic Counseling

, Volume 16, Issue 6, pp 775–787 | Cite as

Parental Narratives About Genetic Testing for Hearing Loss: A One Year Follow Up Study

  • Girija Kaimal
  • Annie G. Steinberg
  • Sara Ennis
  • Sue Moyer Harasink
  • Rachel Ewing
  • Yuelin Li
Original Research

Abstract

Few studies examine whether and how parental attitudes towards genetic testing change over time. In this study we interviewed parents of 14 children with newly identified hearing loss at two time points: after referral to genetics and 1 year later. Qualitative analyses of parental narratives indicate that parental attitudes did not change significantly over this time. Parents who perceived genetic testing to be useful continued to value it after testing, while parents who did not perceive it as being useful for their child’s future held the same view a year later. The only parents who changed their views regarding the usefulness of genetic testing for hearing loss were those who reported that their children underwent significant changes in their hearing loss or were faced with other life threatening conditions. Parents were also often unaware of the role of the genetic counselor and how genetic counseling could help address many of their lingering questions and concerns. These emergent themes indicate the need for geneticists and genetic counselors to be aware of and sensitized to the questions and attitudes that bring parents to a genetic evaluation, as well as the reasons why parents may not follow up with genetic testing for hearing loss when recommended.

Keywords

Deafness Genetic testing Hearing loss Narratives Parental attitudes Qualitative research 

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Copyright information

© National Society of Genetic Counselors, Inc. 2007

Authors and Affiliations

  • Girija Kaimal
    • 1
  • Annie G. Steinberg
    • 1
  • Sara Ennis
    • 2
  • Sue Moyer Harasink
    • 3
  • Rachel Ewing
    • 1
  • Yuelin Li
    • 4
  1. 1.Deafness and Family Communication CenterThe Children’s Hospital of PhiladelphiaPhiladelphiaUSA
  2. 2.Nemours Biomedical Research, Division of Medical GeneticsA.I. duPont Hospital for ChildrenWilmingtonUSA
  3. 3.Clinical Genetics SectionSt. Christopher’s Hospital for ChildrenPhiladelphiaUSA
  4. 4.Department of Psychiatry and Behavioral SciencesMemorial Sloan-Kettering Cancer CenterNew YorkUSA

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