Family Functionality in Mexican Children with Congenital and Non-Congenital Deafness
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Family Functionality in Mexican Children with Congenital and Non-Congenital Deafness

Authors: D. Estrella, A. Silva, R. Zapata, H. Rubio

Abstract:

A total of 100 primary caregivers (mothers, fathers, grandparents) with at least one child or grandchild with a diagnosis of congenital bilateral profound deafness were assessed in order to evaluate the functionality of families with a deaf member, who was evaluated by specialists in audiology, molecular biology, genetics and psychology. After confirmation of the clinical diagnosis, DNA from the patients and parents were analyzed in search of the 35delG deletion of the GJB2 gene to determine who possessed the mutation. All primary caregivers were provided psychological support, regardless of whether or not they had the mutation, and prior and subsequent, the family APGAR test was applied. All parents, grandparents were informed of the results of the genetic analysis during the psychological intervention. The family APGAR, after psychological and genetic counseling, showed that 14% perceived their families as functional, 62% moderately functional and 24% dysfunctional. This shows the importance of psychological support in family functionality that has a direct impact on the quality of life of these families.

Keywords: Deafness, psychological support, family, adaptation to disability.

Digital Object Identifier (DOI): doi.org/10.5281/zenodo.1131263

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References:


[1] Tucci D, Merson MH, Wilson BS. A summary of the literature on global hearing impairment: current status and priorities. Otol Neurotol 2010; 31(1): 31-41.
[2] Yoshinaga IC, Sedey AL, Coulter DK, Mehl AL. Languaje of early and later identifi ed children with hearing loss. Pediatrics 1998; 102: 1161-71.
[3] CIF: Clasificación internacional del funcionamiento de la discapacidad y de la Salud. Edita: Ministerio de Trabajo y Asuntos Sociales, OMS, 2001.
[4] INEGI. XII Censo General de Población y Vivienda, 2000. Base de datos.
[5] INEGI. Encuesta Nacional de la Dinámica Demográfi ca, 2009. Base de datos.
[6] Benoît J, Lagace´ J, Lavigne A, Boissonneault A, Lavoie C. Auditory processing disorders, verbal disfluency, and learning difficulties: A case study. International Journal of Audiology 2007; 46: 31-38.
[7] Moore JK. Maturation of human auditory cortex: Implications for speech perception. Ann Otol Rhinol Laryngol 2002; Suppl. 189: 7-10.
[8] Reigosa V, Pérez-Abalo MC, Hernández D, De la Osa M, Savío G, Rodríguez M et al. Efectos de la detección temprana sobre el desarrollo psicosocial y lingüístico de los niños con pérdidas auditivas permanentes. Revista CENIC/Ciencias Biológicas 2002; 33: 99-105.
[9] Salesa E. La detección precoz auditiva de los neonatos. Revista de Logopedia, Foniatría y Audiología 2008; 28(3): 135-137.
[10] Smith RG, Van Camp C. Deafness and hereditary hearing loss overview (last revision December 2, 2008). In: Gene review sat Gene Tests: Medical genetics information resource (on line). Copyright. University of Washington, Seattle 1999-2008. Disponible en: www.genetests.org (fecha de consulta 18/JAN/2017.
[11] Arnos KS, Welch KO, Tekin M, Norris VW, Blanton SH, Pandya A et al. A comparative analysis of the genetic epidemiology of deafness in the United States in two sets of pedigrees collected more than a century apart. Am J Hum Genet 2008; 83: 200-7.
[12] Joint Committee on Infant Hearing; American Academy of Audiology; American Academy of Pediatrics; American Speech- Language Hearing Association, and Directors of Speech and Hearing Programs State Health and Welfare Agencies. Year 2000 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics 2000; 106: 798-81
[13] World Health Organization. Facts about deafness. www.who.int/pbd, 2005. 17/JAN/2017
[14] Manrique M, Morera C, Moro M. Detección precoz de la hipoacusia infantiles en recién nacidos de alto riesgo. Estudio multicéntrico. An Esp Pediatr 1994; 40 Supl 59: 11-45.
[15] Festa, M. (2005). Hacer visible lo invisible para poder pensarlo. Algunas consideraciones sobre pobreza, discapacidad y comunidad. Simposio familia, pobreza y discapacidad. Procedente del congreso Iberoamericano sobre Discapacidad, Familia y Comunidad.
[16] Van Laer, P Coucke, R F Mueller, G Caethoven, K Flothmann, S D Prasad, G P Chamberlin, M Houseman, G R Taylor, C M Van de Heyning. (2001). A common founder for the 35delG GJB2 gene mutation in connexin 26 hearing impairment. J Med Genet. pp.38:515-518.
[17] De la Cerda, M., Riquelme, H., Guzmán, F., & Barrón, G. (2004). Estructura y funcionalidad familiar de niños y adolescentes con parálisis cerebral. Avances, 2(4), 27-32
[18] Johansen, H. (2013) Health-related quality of life for children with rare diagnoses, their parents´ satisfaction with life and the association between the two. Ohansen. et al. Health and Quality of Life Outcomes, 11:152.
[19] Svedberg, P. (2013) Associations between scores of psychosomatic health symptoms and health-related quality of life in children and adolescents.
[20] Girija, K. (2014) Parental Narratives About Genetic Testing for Hearing Loss: A One Year Follow Up Study
[21] Baldwin, E. (2013). Effect of Pre-test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing.
[22] Arribas-Ayllon, M. (2012). Professional Ambivalence: Accounts of Ethical Practice in Childhood Genetic Testing.