Genetic literacy and psychological adaptation in adolescents with genetic diseases
DOI:
https://doi.org/10.31053/1853.0605.v78.n1.25498Keywords:
genetic counseling, health literacy, adaptation psychological, adolescentAbstract
Introduction: Living with a genetic condition is complex and may be limiting for the adolescent. This situation is considered a stress factor and risk factor for the mental health of both the patient and his family. Objective: To study the levels of psychological adaptation and genetic literacy in adolescents with genetic diseases residing in Argentina. Methods: Correlational and quantitative design and cross sectional scope. The protocol consisted of an informed consent, a sociodemographic data questionnaire, and the Genetic Health Literacy Screening Tool (REAL G) and Psychological Adaptation Scale (PAS) instruments. The sampling was intentional and composed by 68 cases. Results: The REAL G indicated low levels of genetic literacy in all its components (decoding, familiarity, comprehension, arithmetic). Regarding psychological adaptation, an M = 4.02 (SD = 0.8) was found for the general scale and high scores for all the dimensions. Conclusion: Adolescents diagnosed with genetic diseases in Argentina have a good level of psychological adaptation to their disease, despite having low levels of genetic literacy.
Downloads
References
von der Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Mol Genet Genomic Med. 2017 Nov;5(6):758-773. doi: 10.1002/mgg3.315..
Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tibosch MM, Bergsten Brucefors A, Yüksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014 Dec;69(12):1090-7. doi: 10.1136/thoraxjnl-2014-205983.
Federación Argentina de Enfermedades Poco Frecuentes. Informe Las Enfermedades Poco Frecuentes en Argentina. 2018 Feb; Recuperado el 02 de junio del 2019 de http://fadepof.org.ar/noticias/219.
Witt MM, Jankowska KA. Breaking bad news in genetic counseling-problems and communication tools. J Appl Genet. 2018 Nov;59(4):449-452. doi: 10.1007/s13353-018-0469-y.
Biesecker BB, Erby L. Adaptation to living with a genetic condition or risk: a mini-review. Clin Genet. 2008 Nov;74(5):401-7. doi: 10.1111/j.1399-0004.2008.01088.x.
Austin J, Semaka A, Hadjipavlou G. Conceptualizing genetic counseling as psychotherapy in the era of genomic medicine. J Genet Couns. 2014 Dec;23(6):903-9. doi: 10.1007/s10897-014-9728-1
Valentine, F., & Lowes, L. Nursing care of children and young people with chronic illness. Blackwell Publishing Ltd. 2007. doi: 10.1002/9780470692103.
Shiloh, S. Genetic counseling: A developing area of interest for psychologists. Prof Psychol Res Pr. 1996;27(5):475-86. doi: 10.1037/0735-7028.27.5.475
Vásquez Cerdas, M., Cuenca Berger, P., Campos Ramírez, D., Gutiérrez Doña, B., Fernández Morales, H., & Morales Montero, F. Abordaje integral de pacientes costarricenses afectados con la enfermedad de Huntington y sus familiares. Acta Med Costarric, 2011;53(3):136-43.
McCauley E, Feuillan P, Kushner H, Ross JL. Psychosocial development in adolescents with Turner syndrome. J Dev Behav Pediatr. 2001 Dec;22(6):360-5. doi: 10.1097/00004703-200112000-00003.
Girón, R.M., & Cuadrado, F. Aspectos psicológicos del paciente con fibrosis quística: ¿qué ocurre cuando la enfermedad avanza? Rev Patol Respir. 2006;9(2)53-4
Lumley MA, Jordan M, Rubenstein R, Tsipouras P, Evans MI. Psychosocial functioning in the Ehlers-Danlos syndrome. Am J Med Genet. 1994 Nov 1;53(2):149-52. doi: 10.1002/ajmg.1320530206.
Higham L, Ahmed S, Ahmed M. Hoping to live a "normal" life whilst living with unpredictable health and fear of death: impact of cystic fibrosis on young adults. J Genet Couns. 2013 Jun;22(3):374-83. doi: 10.1007/s10897-012-9555-1.
Taylor RM, Gibson F, Franck LS. The experience of living with a chronic illness during adolescence: a critical review of the literature. J Clin Nurs. 2008 Dec;17(23):3083-91. doi: 10.1111/j.1365-2702.2008.02629.x.
Bowling BV, Acra EE, Wang L, Myers MF, Dean GE, Markle GC, Moskalik CL, Huether CA. Development and evaluation of a genetics literacy assessment instrument for undergraduates. Genetics. 2008 Jan;178(1):15-22. doi: 10.1534/genetics.107.079533.
Hooker GW, Ormond KE, Sweet K, Biesecker BB. Teaching genomic counseling: preparing the genetic counseling workforce for the genomic era. J Genet Couns. 2014 Aug;23(4):445-51. doi: 10.1007/s10897-014-9689-4
Lea DH, Kaphingst KA, Bowen D, Lipkus I, Hadley DW. Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics. 2011;14(4-5):279-89. doi: 10.1159/000294191.
Rodríguez SA, Roter DL, Castillo-Salgado C, Hooker GW, Erby LH. Translation and validation of a Spanish-language genetic health literacy screening tool. Health Psychol. 2015 Feb;34(2):120-9. doi: 10.1037/hea0000162.
Emery J, Kumar S, Smith H. Patient understanding of genetic principles and their expectations of genetic services within the NHS: a qualitative study. Community Genet. 1998;1(2):78-83. doi: 10.1159/000016141.
Solomon G, Greenberg J, Futter M, Vivian L, Penn C. Understanding of genetic inheritance among Xhosa-speaking caretakers of children with hemophilia. J Genet Couns. 2012 Oct;21(5):726-40. doi: 10.1007/s10897-012-9495-9
Calsbeek H, Morren M, Bensing J, Rijken M. Knowledge and attitudes towards genetic testing: a two year follow-up study in patients with asthma, diabetes mellitus and cardiovascular disease. J Genet Couns. 2007 Aug;16(4):493-504. doi: 10.1007/s10897-006-9085-9.
Cheuk DK, Wong SM, Choi YP, Chau AK, Cheung YF. Parents' understanding of their child's congenital heart disease. Heart. 2004 Apr;90(4):435-9. doi: 10.1136/hrt.2003.014092.
Fitzgerald-Butt SM, Klima J, Kelleher K, Chisolm D, McBride KL. Genetic knowledge and attitudes of parents of children with congenital heart defects. Am J Med Genet A. 2014 Dec;164A(12):3069-75. doi: 10.1002/ajmg.a.36763.
Biesecker BB, Erby LH, Woolford S, Adcock JY, Cohen JS, Lamb A, Lewis KV, Truitt M, Turriff A, Reeve BB. Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk. Patient Educ Couns. 2013 Nov;93(2):248-54. doi: 10.1016/j.pec.2013.05.006.
Barakat LP, Linney JA. Children with physical handicaps and their mothers: the interrelation of social support, maternal adjustment, and child adjustment. J Pediatr Psychol. 1992 Dec;17(6):725-39. doi: 10.1093/jpepsy/17.6.725.
Jangra D, Ganesh A, Thackray R, Austin L, Ulster A, Sutherland J, Levin AV. Psychosocial adjustment to visual loss in patients with retinitis pigmentosa. Ophthalmic Genet. 2007 Mar;28(1):25-30. doi: 10.1080/13816810701201930.
Abbott J, Hart A, Morton A, Gee L, Conway S. Health-related quality of life in adults with cystic fibrosis: the role of coping. J Psychosom Res. 2008 Feb;64(2):149-57. doi: 10.1016/j.jpsychores.2007.08.017.
Turriff A, Levy HP, Biesecker B. Factors associated with adaptation to Klinefelter syndrome: the experience of adolescents and adults. Patient Educ Couns. 2015 Jan;98(1):90-5. doi: 10.1016/j.pec.2014.08.012.
Erby LH, Roter D, Larson S, Cho J. The rapid estimate of adult literacy in genetics (REAL-G): a means to assess literacy deficits in the context of genetics. Am J Med Genet A. 2008 Jan 15;146A(2):174-81. doi: 10.1002/ajmg.a.32068.
Schwartz LM, Woloshin S, Black WC, Welch HG. The role of numeracy in understanding the benefit of screening mammography. Ann Intern Med. 1997 Dec 1;127(11):966-72. doi: 10.7326/0003-4819-127-11-199712010-00003.
Published
How to Cite
Issue
Section
License
Copyright (c) 2021 Universidad Nacional de Córdoba
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
The Faculty of Medical Sciences Journal (RFCM) subscribes to the Open Access policy and does not charge authors fees for publishing, nor does it charge readers fees for accessing published articles (APC).
