Parental Narratives About Genetic Testing for Hearing Loss: A One Year Follow Up Study
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.
KeywordsDeafness Genetic testing Hearing loss Narratives Parental attitudes Qualitative research
This research was part of an interdisciplinary study on outcomes of genetic testing for hearing loss funded by an NIH grant RO1 DC005247-01 (PI: I Krantz). We are grateful to Lisa Bain, Ian Krantz, and Dinah Yaeger for their contributions to this work.
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