ORIGINAL ARTICLE
Parental knowledge and attitudes towards hereditary hearing loss and genetic technology
 
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1
Department of Rehabilitation Sciences, Faculty of Applied Medical Sciences, Jordan University of Science and Technology, P.O. Box 3030, Irbid 22110, JORDAN
 
2
Department of Educational Sciences, Balqa Applied University, Alsalt, JORDAN
 
3
Department of Applied Speech-Language Pathology and Audiology, Faculty of Allied Medical Sciences, Zarqa University, Zarqa, JORDAN
 
 
Online publication date: 2023-10-19
 
 
Publication date: 2023-11-01
 
 
Electron J Gen Med 2023;20(6):em548
 
KEYWORDS
ABSTRACT
Introduction:
The knowledge and attitudes about genetic hearing loss are essential to prevent more hearing loss incidences in societies. However, limited studies have compared the knowledge and attitude toward genetic technology between parents of normal and impaired-hearing children.

Methods:
A descriptive, cross-sectional study was performed involving 105 parents with one or more children having a hearing impairment and 204 control parents with children having normal hearing. Parents completed surveys designed to investigate their knowledge and attitudes about the genetic basis of hearing impairment and recent technologies. Descriptive and inferential statistics were used to measure response differences between the two groups.

Results:
Both groups shared the same level of knowledge, with the average knowledge scores of parents with normal-hearing children (9.53/19±2.56 points) resembling those of parents with hearing-impaired children (10.08/19±3.17 points; F(1, 307)=-2.17, p=0.14). Moreover, parents had limited information about the genetic basis of hearing loss, specifically in estimating the recurrence of congenital hearing loss (n=26 of 105, 24.76%)and misunderstanding inheritance paradigms (n=24 of 105, 22.86%). Regardless of having children with auditory issues, parents expressed positive attitudes towards genetic testing.

Conclusions:
These findings suggest that more genetic specialists are needed to educate families of children with hearing loss about the genetic attributes of hearing impairment and the significance of genetic technology.

 
REFERENCES (48)
1.
Morton CC. Genetics, genomics and gene discovery in the auditory system. Hum Mol Genet. 2002;11(10):1229-40. https://doi.org/10.1093/hmg/11... PMid:12015283.
 
2.
Angeli S, Lin X, Liu XZ. Genetics of hearing and deafness. Anat Rec (Hoboken). 2012;295(11):1812-29. https://doi.org/10.1002/ar.225... PMid:23044516 PMCid:PMC4523052.
 
3.
Steel KP, Kros CJ. A genetic approach to understanding auditory function. Nat Genet. 2001;27(2):143-9. https://doi.org/10.1038/84758 PMid:11175778.
 
4.
Carpena NT, Lee MY. Genetic hearing loss and gene therapy. Genomics Inform. 2018;16(4):e20. https://doi.org/10.5808/GI.201... PMid:30602081 PMCid:PMC6440668.
 
5.
Korver AMH, Smith RJ, Van Camp G, et al. Congenital hearing loss. Nat Rev Dis Primers. 2017;3(1):16094. https://doi.org/10.1038/nrdp.2... PMid:28079113 PMCid:PMC5675031.
 
6.
Bubbico L, Rosano A, Spagnolo A. Prevalence of prelingual deafness in Italy. Acta Otorhinolaryngol Ital. 2007;27(1):17-21.
 
7.
Robinshaw HM. Early intervention for hearing impairment: Differences in the timing of communicative and linguistic development. Br J Audiol. 1995;29(6):315-34. https://doi.org/10.3109/030053... PMid:8861408.
 
8.
Pearl PL, Carrazana EJ, Holmes GL. The Landau-Kleffner syndrome. Epilepsy Curr. 2001;1(2):39-45. https://doi.org/10.1111/j.1469... PMid:15309183 PMCid:PMC320814.
 
9.
Smith RJ, Bale Jr JF, White KR. Sensorineural hearing loss in children. Lancet. 2005;65(9462):879-90. https://doi.org/10.1016/S0140-... PMid:15752533.
 
10.
Alford RL, Arnos KS, Fox M, et al. American College of Medical Genetics and Genomics guideline for the clinical evaluation and etiologic diagnosis of hearing loss. Genet Med. 2014;16(4):347-55. https://doi.org/10.1038/gim.20... PMid:24651602.
 
11.
Christensen K, Frederiksen H, Hoffman HJ. Genetic and environmental influences on self-reported reduced hearing in the old and oldest old. J Am Geriatr Soc. 2001;49(11):1512-7. https://doi.org/10.1046/j.1532... PMid:11890591.
 
12.
Willems PJ. Genetic causes of hearing loss. N Engl J Med. 2000;342(15):1101-9. https://doi.org/10.1056/NEJM20... PMid:10760311.
 
13.
Davis JM, Elfenbein J, Schum R, Bentler RA. Effects of mild and moderate hearing impairments on language, educational, and psychosocial behavior of children. J Speech Hear Disord. 1986;51(1):53-62. https://doi.org/10.1044/jshd.5... PMid:3945060.
 
14.
Pichora-Fuller MK, Kramer SE, Eckert MA, et al. Hearing impairment and cognitive energy: The framework for understanding effortful listening (FUEL). Ear Hear. 2016;37(Suppl 1):5S-27S. https://doi.org/10.1097/AUD.00... PMid:27355771.
 
15.
Alavi SS, Dabbagh ST, Abbasi M, Mehrdad R. Radiation protection knowledge, attitude and practice (RP-KAP) as predictors of job stress among radiation workers in Tehran Province, Iran. Iran Red Crescent Med J. 2016;18(10): e29394. https://doi.org/10.5812/ircmj.....
 
16.
Chaw PS, Maria Schlinkmann K, Raupach-Rosin H, et al. Knowledge, attitude and practice of Gambian health practitioners towards antibiotic prescribing and microbiological testing: A cross-sectional survey. Trans Royal Soc Trop Med Hyg. 2017;111(3):117-24. https://doi.org/10.1093/trstmh... PMid:28633334.
 
17.
Sousos N, Sfyridou S, Adamidou D, et al. Non-physician health-care workers and voluntary blood donation: An ambiguous relationship. Transfus Med. 2018;28(3):216-23. https://doi.org/10.1111/tme.12... PMid:28722278.
 
18.
Guo S, Chen J, Yu B, Jiang Y, Song Y, Jin Y. Knowledge, attitude and practice of child sexual abuse prevention among parents of children with hearing loss: A pilot study in Beijing and Hebei Province, China. J Child Sex Abus. 2019;28(7):781-98. https://doi.org/10.1080/105387... PMid:31287784.
 
19.
Maraschini A, D’Aloja P, Lega I, et al. Do Italian pregnant women use periconceptional folate supplementation? Ann Ist Super Sanita. 2017;53(2):118-24.
 
20.
Sharma PK, Ganguly E, Nagda D, KamarajuT, Ghanpur RR, Pradesh A. Knowledge, attitude and preventive practices of South Indian women towards breast cancer. Health. 2013;1(1).
 
21.
Libwea JN, Kobela M, Ollgren J, Emah I, Tchio R, Nohynek H. Predictors to parental knowledge about childhood immunisation/EPI vaccines in two health districts in Cameroon prior to the introduction of 13-valent pneumococcal conjugate vaccines (PCV-13). Pan Afr Med J. 2014;17:187. https://doi.org/10.11604/pamj.... PMid:25396013 PMCid:PMC4228998.
 
22.
Thac D, Pedersen FK, Thuong TC, Lien LB, Ngoc Anh NT, Phuc NN. South Vietnamese rural mothers’ knowledge, attitude, and practice in child health care. Biomed Res Int. 2016;2016:9302428. https://doi.org/10.1155/2016/9... PMid:26881233 PMCid:PMC4736232.
 
23.
Rus RM, Daud A, Musa KI, Naing L. Knowledge, attitude and practice of sawmill workers towards noise-induced hearing loss in kota bharu, kelantan. Malays J Med Sci. 2008;15(4):28-34.
 
24.
Moeller MP, White KR, Shisler L. Primary care physicians’ knowledge, attitudes, and practices related to newborn hearing screening. Pediatrics. 2006;118(4):1357-70. https://doi.org/10.1542/peds.2... PMid:17015524.
 
25.
Goedert MH, Moeller MP, White KR. Midwives’ knowledge, attitudes, and practices related to newborn hearing screening. J Midwifery Womens Health. 2011;56(2):147-53. https://doi.org/10.1111/j.1542... PMid:21429080 PMCid:PMC3068862.
 
26.
Kaliyaperumal K. Guideline for conducting a knowledge, attitude and practice (KAP) study. AECS Illum. 2004;4(1):7-9.
 
27.
Launiala A. How much can a KAP survey tell us about people’s knowledge, attitudes and practices? Some observations from medical anthropology research on malaria in pregnancy in Malawi. Anthropol Matters. 2009;11(1):1-13. https://doi.org/10.22582/am.v1....
 
28.
Bitner-Glindzicz M. Hereditary deafness and phenotyping in humans. Br Med Bull. 2002;63(1):73-94. https://doi.org/10.1093/bmb/63... PMid:12324385.
 
29.
Cardon G, Sharma A. The effect of amplification on cortical synchrony in children with auditory neuropathy spectrum disorder. Hear Balance Commun. 2021;19(3):151-8. https://doi.org/10.1080/216957....
 
30.
Manchaiah VK, Zhao F, Danesh AA, Duprey R. The genetic basis of auditory neuropathy spectrum disorder (ANSD). Int J Pediatr Otorhinolaryngol. 2011;75(2):151-8. https://doi.org/10.1016/j.ijpo... PMid:21176974.
 
31.
Koffler T, Ushakov K, Avraham KB. Genetics of hearing loss: Syndromic. Otolaryngol Clin North Am. 2015;48(6):1041-61. https://doi.org/10.1016/j.otc.... PMid:26443487 PMCid:PMC4641804.
 
32.
Brunger JW, Murray GS, O’Riordan M, Matthews AL, Smith RJ, Robin NH. Parental attitudes toward genetic testing for pediatric deafness. Am J Hum Genet. 2000;67(6):1621-5. https://doi.org/10.1086/316901 PMid:11062052 PMCid:PMC1287942.
 
33.
Koehn D, Morgan K, Fraser FC. Recurrence risks for near relatives of children with sensori-neural deafness. Genet Couns. 1990;1(2):127-32.
 
34.
Smith SD. Recurrence risks. Ann NY Acad Sci. 1991;630:203-11. https://doi.org/10.1111/j.1749... PMid:1952591.
 
35.
Fulcher A, Purcell AA, Baker E, Munro N. Listen up: Children with early identified hearing loss achieve age-appropriate speech/language outcomes by 3 years-of-age. Int J Pediatr Otorhinolaryngol. 2012;76(12):1785-94. https://doi.org/10.1016/j.ijpo... PMid:23084781.
 
36.
Omondi D, Ogol C, Otieno S, Macharia I. Parental awareness of hearing impairment in their school-going children and healthcare seeking behaviour in Kisumu District, Kenya. Int J Pediatr Otorhinolaryngol. 2007;71(3):415-23. https://doi.org/10.1016/j.ijpo... PMid:17175033.
 
37.
Meinzen-Derr J, Lim LH, Choo DI, Buyniski S, & Wiley S. Pediatric hearing impairment caregiver experience: Impact of duration of hearing loss on parental stress. Int J Pediatr Otorhinolaryngol. 2008;72(11):1693-703. https://doi.org/10.1016/j.ijpo... PMid:18819718.
 
38.
Joint Committee on Infant Hearing. Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics. 2007; 120(4):898-921. https://doi.org/10.1542/peds.2... PMid:17908777.
 
39.
Guillemin M, Gillam L. Attitudes to genetic testing for deafness: The importance of informed choice. J Genet Couns. 2006;15(1):51-9. https://doi.org/10.1007/s10897... PMid:16525898.
 
40.
Stern SJ, Arnos KS, Murrelle L, Welch KO, Nance WE, Pandya A. Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. J Med Genet. 2002;39(6):449-53. https://doi.org/10.1136/jmg.39... PMid:12070258 PMCid:PMC1735146.
 
41.
Middleton A, Hewison J, Mueller RF. Attitudes of deaf adults toward genetic testing for hereditary deafness. Am J Hum Genet. 1998;63(4):1175-80. https://doi.org/10.1086/302060 PMid:9758618 PMCid:PMC1377492.
 
42.
Taneja PR, Pandya A, Foley DL, Nicely LV, Arnos KS. Attitudes of deaf individuals towards genetic testing. Am J Med Genet A. 2004;130A(1):17-21. https://doi.org/10.1002/ajmg.a... PMid:15368489.
 
43.
Nance WE. The genetics of deafness. Ment Retard Dev Disabil Res Rev. 2003;9:109-19. https://doi.org/10.1002/mrdd.1... PMid:12784229.
 
44.
Dabholkar YG, Wadhwa A, Deshmukh A. A study of knowledge, attitude and practices about otitis media in parents in Navi-Mumbai. J Otol. 2021;16(2):89-94. https://doi.org/10.1016/j.joto... PMid:33777121 PMCid:PMC7985005.
 
45.
Cai T, McPherson B. Hearing loss in children with otitis media with effusion: A systematic review. Int J Audiol. 2017;56(2):65-76. https://doi.org/10.1080/149920... PMid:27841699.
 
46.
Robin NH, Dietz C, Arnold JE, Smith RJ. Pediatric otolaryngologists’ knowledge and understanding of genetic testing for deafness. Arch Otolaryngol Head Neck Surg. 2001;127(8):937-40. https://doi.org/10.1001/archot... PMid:11493201.
 
47.
Islam MM, Ababneh FM, Khan MHR. Consanguineous marriage in Jordan: An update. J Biosoc Sci. 2018; 50(4):573-8. https://doi.org/10.1017/S00219... PMid:28793942.
 
48.
Bittles AH. Consanguinity and its relevance to clinical genetics. Clin Genet. 2001;60(2):89-98. https://doi.org/10.1034/j.1399... PMid:11553039.
 
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