Recorded presentation

Annie Steinberg, MD¹, Yuelin Li, PhD², Lisa Bain, MA³, and Girija Kaimal, MA, EdM³. (1) Psychiatry and Pediatrics, University of PA School of Medicine, 3535 Market STreet, 9th floor, Deafness and Family Communication Center, narberth, PA 19072, 215 590 7665, drannie@mail.med.upenn.edu, (2) The Center for Outcomes Research, The Children's Hospital of Philadelphia, 3535 Market St., 10th floor, Philadelphia, PA 19104, (3) Deafness Research, The Children's Hospital of Philadelphia, 3535 Market St., 9th floor, Philadelphia, PA 19104

The presenters will describe results obtained from interviews conducted as part of an ongoing research project, in which we are studying parents’ knowledge, attitudes, and beliefs about genetics and genetic testing for hearing loss. Parents talked about their decision-making processes after the identification of hearing loss in their child, particularly with regard to the decision about whether to obtain genetic testing. Parental narratives and the messages they contain will be examined. Case examples offered by the audience will be discussed briefly as well.

Methods: We conducted individual and group interviews with parents of children with hearing loss. Audiotapes of the interviews were transcribed and analyzed using qualitative methods to identify misconceptions, attitudes, beliefs, concerns, and information needs of parents that may hinder their ability to make an informed decision about genetic testing.

Results: Parental concerns reflect a diversity of individual beliefs, as well as distinct cultures and backgrounds. It is critical to understand parental beliefs about the benefits, drawbacks, potential for misuse and abuse of genetic testing if effective communication is to occur.

Conclusions: A heightened awareness of the multiplicity of perspectives about genetic testing can lead to improved communication in discussing the referral to genetics, potential benefits to the child and family, and risks to parents and family unit in the context of relevant cultural and community concerns.

Learning Objectives:

• At the end of this session, the participant will have a heightened understanding of parental concerns, experiences, attitudes and beliefs regarding genetic testing and develop more effective ways of communicating with parents regarding this complex area.

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Recorded presentation