Alfabetización genética en cuidadores frente a un asesoramiento genético pediátrico, en un hospital público de Buenos Aires

  1. Vázquez, Natalia
  2. Javiera Ortega 2
  3. Claudia Arberas 3
  4. Virginia C. Samaniego 2
  5. Kevin Skavone 2
  6. Florencia Assalone 1
  7. Victoria Vázquez 1
  8. Camila A. Ruiz 4
  9. Rafael Pozo Gowland 5
  10. Imanol Amayra Caro 6
  1. 1 Universidad Austral, Argentina
  2. 2 Pontificia Universidad Católica Argentina. Buenos Aires, Argentina
  3. 3 Hospital de Niños Dr. Ricardo Gutiérrez., Argentina
  4. 4 Fundación de Psicología Aplicada a Enfermedades Huérfanas [Fupaeh]., Argentina
  5. 5 Hospital Rivadavia. Buenos Aires,, Argentina
  6. 6 Universidad de Deusto, España
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Revista:
Interdisciplinaria: Revista de psicología y ciencias afines = journal of psychology and related sciences

ISSN: 0325-8203,  1668-7027

Año de publicación: 2023

Volumen: 40

Número: 3

Tipo: Artículo

DOI: 10.16888/INTERD.2023.40.3.24 DIALNET GOOGLE SCHOLAR lock_openAcceso abierto editor

Otras publicaciones en: Interdisciplinaria: Revista de psicología y ciencias afines = journal of psychology and related sciences

Objetivos de desarrollo sostenible

Resumen

Genetic literacy is essential to understand effective participation in social decisions on genetic issues, which promote personal well-being. The study aimed to describe the levels of genetic literacy in caregivers, mothers and fathers, who receive genetic counseling about their children. Also, study explored genetic literacy associations with education levels, age, having a diagnosis, and aspects of genetic counselling. A cross-sectional correlational observational study was carried out. Study took place in a public hospital in Buenos Aires City. Sample consisted of 156 caregivers who received genetic counselling on this hospital. Participants included caregivers of children with a genetic diagnosis (66.7 %) and caregivers of children without an accurate diagnosis (33.3 %). Caregivers had attended genetic consults on a range from 1-13 (M = 3.7; SD = 2.97). Mean age for caregivers was 36.02 (SD = 8.1) and for children, M = 6.07 (SD = 3.85). 51.6 % of children were male and 48.4 % were female. According to the caregivers' report, the average age at which their children received a diagnosis or started the suspected diagnosis was 2.68 years (SD = 3.17). Regarding caregiver´s education levels, 48.4 % of them had not completed high school, while 51.6 % had completed high school or a higher level of studies. The REAL-G scale was administered to caregivers. The REAL-G is an instrument that measures genetic literacy in terms of decoding (scores 0 to 62), familiarity (of 8 genetic terms, scores 0 to 7 for each term), comprehension (scores 0 to 8), and numeracy (scores 0 to 3). Results showed that 35.5 % of the caregivers had a lower-than-expected level of genetic literacy. For decoding, results showed a M = 58.56 (SD = 4.09) of recognized terms. A mean of 5.13 (SD = 1.72) was found for the comprehension dimension. For familiarity with genetic terms, heritage (M = 5.71, SD = 1.62) and genetic (M = 5.09, SD = 1.89) were the terms with higher familiarity. Sporadic (M = 2.92, SD = 2.16) and susceptibility (M = 3.10, SD = 2.16) were the terms with lower familiarity. For the numeracy dimension, a mean of .90 (SD = .88) was found. Also, statistically significant differences were found in genetic literacy levels according to educational level (p = .00), and in the comprehension dimension between mothers who had an accurate diagnosis and those who did not (U = 714.5; p = .01). Finally, significant relationships were found between levels of genetic literacy and the age of the caregiver (Rho = 0.25, p = .01, N = 93) and the age of the child (Rho = -.23, p = .02, N = 93). No significant relationship was found between any of the genetic literacy dimensions and number of genetic counselling consults (p = .54) or with age of diagnosis (p = .93). In conclusion, not all caregivers who receive genetic counseling achieve adequate levels of genetic literacy. Numeracy seems to be part of genetic literacy were caregivers have more difficulties. These results should concern us since understanding rates influences the interpretation of the risk of family recurrence. Also, higher levels of genetic literacy are associated with higher levels of education, mother´s age and child´s age. Genetic counsellors should take into account level of education when working with families under genetic counselling, making sure that they have understood and offering greater opportunities for encounters to promote greater learning. In addition, caregivers who got an accurate diagnosis have better understanding of genetic terms that those caregivers still awaiting an accurate diagnosis. This group of caregivers should be considered as a higher risk group and could benefit from psychological support in the process of getting a diagnosis. Achieving good genetic literacy is a central objective of the genetic counseling process, allowing the patient and their family to be empowered to make informed decisions about their health. Caregivers who undergo genetic counselling could benefit from a psycho-educational process, facilitating genetic information and providing emotional support.

Referencias bibliográficas

  • Arias Reyes, C. y Muñoz-Quezada, M. T. (2019). Calidad de vida y sobrecarga en cuidadores de escolares con discapacidad intelectual. Interdisciplinaria, Revista de Psicología y Ciencias Afines, 36(1), 257-272. https://doi.org/10.16888/interd.2019.36.1.17
  • Ashida, S., Goodman, M., Pandya, C., Koehly, L. M., Lachance, C., Stafford, J. y Kaphingst, K. A. (2011). Age differences in genetic knowledge, health literacy and causal beliefs for health conditions. Public Health Genomics, 14(4-5), 307-316. https://doi.org/10.1159/000316234
  • Biesecker, B. B. y Peters, K. F. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics, 106(3), 191-198. https://doi.org/10.1002/ajmg.10004
  • Bowling, B. V., Acra, E. E., Wang, L., Myers, M. F., Dean, G. E., Markle, G. C. y Huether, C. A. (2008). Development and evaluation of a genetics literacy assessment instrument for undergraduates. Genetics, 178(1), 15-22. https://doi.org/10.1534/genetics.107.079533
  • Brabers, A. E., Rademakers, J. J., Groenewegen, P. P., Van Dijk, L. y De Jong, J. D. (2017). What role does health literacy play in patients' involvement in medical decision-making? PloSone, 12(3), https://doi.org/10.1371/journal.pone.0173316
  • Doyle, D. L., Awwad, R. I., Austin, J. C., Baty, B. J., Bergner, A. L., Brewster, S. J., Erby, L., Franklin, C. R., Greb, R., Hooker, G., Noblin, S. J., Ormond, K., Palmer, C.G., Petty, E.M., Singletary. C., Thomas, M. J., Toriello, H., Walton, C. S. y Uhlmann, W. R. (2016). 2013 Review and update of the genetic counseling practice based competencies by a task force of the accreditation council for genetic counseling. Journal of Genetic Counseling, 25(5), 868-879. https://doi.org/10.1007/s10897-016-9984-3
  • Erby, L. H., Roter, D., Larson, S. y Cho, J. (2008). The rapid estimate of adult literacy in genetics (REAL‐G): A means to assess literacy deficits in the context of genetics. American Journal of Medical Genetics, Part A, 146(2), 174-181. https://doi.org/10.1002/ajmg.a.32068
  • Erby, L. H., Wisniewski, T., Lewis, K. L., Hernandez, C., Biesecker, L. G. y Biesecker, B. B. (2021). Adaptation of the working alliance inventory for the assessment of the therapeutic alliance in genetic counseling. Journal of Genetic Counseling, 30(1), 11–21. https://doi.org/10.1002/jgc4.1378
  • Evans, C. (2006). Genetic counselling: a psychological approach: Cambridge University Press.
  • Gallo, A. M., Angst, D. B. y Knafl, K. A. (2009). Disclosure of genetic information within families. The American Journal of Nursing, 109(4), 65–69. https://doi.org/10.1097/01.NAJ.0000348607.31983.6e
  • Gallo, A. M., Angst, D., Knafl, K. A., Hadley, E. y Smith, C. (2005). Parents sharing information with their children about genetic conditions. Journal of Pediatric Health Care: official publication of National Association of Pediatric Nurse Associates y Practitioners, 19(5), 267–275. https://doi.org/10.1016/j.pedhc.2005.05.008
  • Graves, K. D. y Tercyak, K. P. (2015). Introduction to the special series on health disparities in genomic medicine. Health Psychology, 34(2), 97. https://doi.org/10.1037/hea0000198
  • Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J. y Willard, H. F. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327-335. https://doi.org/10.1089/gtmb.2012.0350
  • Kaphingst, K. A., Blanchard, M., Milam, L., Pokharel, M., Elrick, A. y Goodman, M. S. (2016). Relationships Between Health Literacy and Genomics-Related Knowledge, Self-Efficacy, Perceived Importance, and Communication in a Medically Underserved Population. Journal of Health Communication, 21(sup1), 58–68. https://doi.org/10.1080/10810730.2016.1144
  • Lea, D. H., Kaphingst, K. A., Bowen, D., Lipkus, I. y Hadley, D. W. (2011). Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics, 14(4-5), 279-289. https://doi.org/10.1159/000294191
  • McAllister, M., Dunn, G., Payne, K., Davies, L. y Todd, C. (2012). Patient empowerment: the need to consider it as a measurable patient-reported outcome for chronic conditions. BMC Health Services Research, 12, 157. https://doi.org/10.1186/1472-6963-12-157
  • Ministerio de Salud Presidencia de la Naciòn. (2020). Material para equipos de salud. Anomalías Congénitas. Enfoque para la Atención Primaria de la Salud. https://bancos.salud.gob.ar/recurso/anomalias-congenitas-enfoque-para-la-atencion-primaria-en-salud
  • Milo Rasouly, H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W. K., Appelbaum, P., Weng, C., Bakken, S. y Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 30(3), 742–754. https://doi.org/10.1002/jgc4.1364
  • Palacios-Espinosa, X., Vera-Márquez, Á. V., Mateus, H., Dávalos Serrano, M. L., Gracia-Ruiz, J. y Huertas, J. F. (2021). Experiences of caregivers of boys with Duchenne Muscular Dystrophy: “When I look at him, my world falls apart”. Interdisciplinaria, Revista de Psicología y Ciencias Afines, 38(3), 221-238. https://doi.org/10.16888/interd.2021.38.3.13
  • Portnoy, D. B., Roter, D. y Erby, L. H. (2010). The role of numeracy on client knowledge in BRCA genetic counseling. Patient Education and Counseling, 81(1), 131–136. https://doi.org/10.1016/j.pec.2009.09.036
  • Rodríguez, S. A., Roter, D. L., Castillo-Salgado, C., Hooker, G. W. y Erby, L. H. (2015). Translation and validation of a Spanish-language genetic health literacy screening tool. Health Psychology, 34(2), 120. https://doi.org/10.1037/hea0000162
  • Roter, D. L., Erby, L., Larson, S. y Ellington, L. (2009). Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning. Patient Education and Counseling, 75(3), 392–397. https://doi.org/10.1016/j.pec.2009.01.005
  • Roter, D. L., Wexler, R., Naragon, P., Forrest, B., Dees, J., Almodovar, A. y Wood, J. (2012). The impact of patient and physician computer mediated communication skill training on reported communication and patient satisfaction. Patient Education and Counseling, 88(3), 406-413. https://doi.org/10.1016/j.pec.2012.06.020
  • Shiloh, S., Gerad, L. y Goldman, B. (2006). Patients' information needs and decision-making processes: What can be learned from genetic counselees? Health Psychology, 25(2), 211. https://doi.org/10.1037/0278-6133.25.2.211
  • Tibben, A. y Biesecker, B. (2019) Genetic Testing Expanded. En A. Tibben y B. Biesecker (Eds.), Clinical Genome Sequencing. Psychological Considerations (pp. 1-13). Academic Press. https://doi.org/10.1016/B978-0-12-813335-4.00001-5
  • Vázquez, N., Ortega, J., Vázquez, V., Ruiz, C. A. y Scavone, K. F. (2021). El rol del psicólogo en el abordaje de personas con un diagnóstico de una enfermedad poco frecuente: una revisión teórica desde la psicología de la salud. Revista de Psicología, 17(34), 35-46. https://erevistas.uca.edu.ar/index.php/RPSI/article/view/3725
  • Visser, A. y Erby, L. (2014). Communication in healthcare: Lessons from diversity. Patient Education and Counseling, 96(3), 271–272. https://doi.org/10.1016/j.pec.2014.08.001
  • Watnick, D., Odgis, J. A., Suckiel, S. A., Gallagher, K. M., Teitelman, N., Donohue, K. E., Gelb, B. D., Kenny, E. E. Wasserstein, M. P., Horowitz, C. R., Dolan, S. M. y Bauman, L. J. (2021). “Is that something that should concern me?”: a qualitative exploration of parent understanding of their child’s genomic test results. Human Genetics and Genomics Advances, 2(2). https://einstein.elsevierpure.com/en/publications/is-that-something-that-should-concern-me-a-qualitative-exploratio
  • Weaver, M. y Erby, L. (2012). Standardized Patients. Health Promotion Practice, 13(2), 169–174. https://doi.org/10.1177/1524839911432006
  • Yuen, J., Lee, S. Y., Courtney, E., Lim, J., Soh, H., Li, S. T., Chen, Y., McAllister, M., Fenwick, E. K. y Ngeow, J. (2020). Evaluating empowerment in genetic counseling using patient-reported outcomes. Clinical Genetics, 97(2), 246–256. https://doi.org/10.1111/cge.13646
Fuente de los datos: Dialnet