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

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.

Appendix

Sample Questions from Interview

Background on family

• Before we get started, please tell me a little bit about your family. Any changes since last year in who lives in your household?

• What did you think was the reason for your child’s hearing loss? Do you still think that is the reason?

• Is there anyone else in your immediate or extended family who has a hearing loss?

• Have you found out anything more since last year regarding the cause of your child’s hearing loss?

• What tests have you been for this year?

Genetics

• What does genes or “genetic” mean? What does it mean when something is passed down in the family?

• How does genetic material get transmitted?

• What does it mean to say that hearing loss is genetic? [or, what do people mean when they say deafness is genetic?]

• Have you ever heard about “syndromes” that are linked to hearing loss? What does that mean?

• Do you know of any genetic conditions that have been transmitted in your family? If yes, what do you feel about the possibility of being a carrier or having that condition? How do you feel about transmitting it to the next generation?

• Do you know if you are a carrier for genetic deafness? How do you feel about that?

Genetic Testing

• Who was the first person to mention genetic testing? Do you remember your reaction when genetic testing was first suggested?

• What do you know about genetic testing?

• What were you told about why you should get genetic testing done? What did you think was the reason for getting genetic testing? What were you told about the benefits and/or risks of genetic testing?

• What did you think about the possible benefits of genetic testing?

• Did you have any concerns about genetic testing for hearing loss?

• Did you feel you had enough information to make a decision? Did you feel your concerns were adequately addressed? What other information or support do you think you should have gotten?

• Have you ever heard about genetic testing for other conditions? Which ones? How do you think genetic testing for deafness differs from genetic testing for other conditions?

Genetic Counseling (if received)

• Have you met with a genetic counselor?

• Can you describe any concerns, feelings you had prior to the meeting? Did you bring them up with the counselor? What were you asked to bring to the interview? Do you know why? Were your questions about the meeting addressed?

• Can you describe what you learned in the genetic counseling session?

• Did you have additional questions that you wished you had asked?

• How did you feel after genetic counseling? Were your concerns adequately addressed?

• What did your learn about genetic inheritance from the genetic counseling session?

• Did you find genetic counseling to be helpful?

• What would you have liked the counseling session to include? Anything more you would have liked it to include? Anything about it that you would have changed?

• How did you explain the counseling session info with others? Any challenges?

• Did you receive any written literature on the genetics of deafness? Did it explain anything to you? How it could be improved or made more useful?

• What more do you need in order to understand your child’s hearing loss?

Genetic Deafness

• If a child is deaf, do you think it makes a difference if the deafness is caused by genetics or by something else? In what way do you think it might make a difference?

• If you know your child has a genetic form of deafness, do you think you would do anything different than before?

• How do you think your child might feel if or when he/she learns that his/her deafness was inherited?

Attitudes/Values

• Do you know if there is a genetic cause for his or her hearing loss? What difference would that make?

• How do you think being deaf or hard of hearing is different from having a different kind of disability?

• How do you think your child’s life might be different if or when he/she learns that his/her deafness was inherited?