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.
Kaimal
Girija
G
Deafness and Family Communication Center, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Steinberg
Annie G
AG
Ennis
Sara
S
Harasink
Sue Moyer
SM
Ewing
Rachel
R
Li
Yuelin
Y
D000328:Adult; D002648:Child; D003638:Deafness / Q000453:epidemiology / Q000235:genetics; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling; D034381:Hearing Loss / Q000453:epidemiology / Q000235:genetics*; D006801:Humans; D015994:Incidence; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D012813:Sign Language; D014481:United States / Q000453:epidemiology
Ann N Y Acad Sci. 1991;630:212-22
1952592
Am J Med Genet. 2002 Nov 22;113(2):137-43
12407703
Ann N Y Acad Sci. 1991;630:16-31
1952587
Birth Defects Orig Artic Ser. 1990;26(2):199-202
2094515
Am J Hum Genet. 1998 Oct;63(4):1175-80
9758618
J Genet Couns. 2001 Apr;10 (2):121-31
11767801
Genet Med. 2002 May-Jun;4(3):162-71
12180152
Am J Med Genet. 1993 Jun 15;46(5):486-91
8322805
Am J Med Genet. 1984 Mar;17(3):673-97
6711619
Genet Med. 2003 Mar-Apr;5(2):106-12
12644780
Soc Sci Med. 1998 May;46(10):1367-74
9665567
Am J Med Genet. 1992 Oct 1;44(3):345-51
1488983
J Med Genet. 2002 Jun;39(6):449-53
12070258
Ann N Y Acad Sci. 1991;630:317-8
1952620
Am J Hum Genet. 1997 Apr;60(4):758-64
9106521
Am J Hum Genet. 2000 Dec;67(6):1621-5
11062052