Cleft Lip/Palate diagnosis in early childhood of Nicaragua: impact of the diagnosis on a family level
DOI:
https://doi.org/10.31053/1853.0605.v75.n4.19931Keywords:
cleft lip, impact assessment, health, mental healtAbstract
Introduction: Children with congenital anomalies are a vulnerable population in the development of mental health problems. The cleft lip and palate (FLAP) is a structural congenital anomaly. Objective: To study the impact at family level of the FLAP diagnosis. Methodology: Descriptive and quantitative design and cross-sectional scope. A self-administered questionnaire consisting of an informed consent, a sociodemographic data questionnaire, the Child Behavior Checklist and open questions, was constructed. The sampling was intentional and composed by 50 cases. Results: The CBCL 1.5-5 indicated an average of M = 53.60 (SD 23.53) in the general scale of behavioral and emotional problems, M = 14.86 for the internalizing scale, and M = 19.04 for the externalizing scale. Conclusion: The diagnosis of a cleft palatal lip is a difficult experience in parents, who experience this moment in a negative way, with sadness and fear. Preschool children with a diagnosis of cleft lip and palate are a population at risk of developing psychopathological disorders, mainly of the externalizing type.
Downloads
References
Ministerio de Salud de Nicaragua MINSA (2015). Gobierno firma convenio de cooperación con Operación Sonrisa Internacional y Operación Sonrisa Nicaragua.
Tercyak, K. P., O'neill, S. C., Roter, D. L., & McBride, C. M. (2012). Bridging the communication divide: A role for health psychology in the genomic era. Professional Psychology: Research and Practice, 43(6), 568.
Biesecker, B. B. (2010). Genetic Counselling: Psychological Issues. Encyclopedia of Life Sciences (ELS). doi: 10.1002/9780470015902.a0005616.pub2
Dinc, L., & Terzioglu, F. (2006). The psychological impact of genetic testing on parents. Journal of clinical nursing, 15(1), 45-51.
Kessler, S., Kessler, H., Ward, P., & Opitz, J. M. (1984). Psychological aspects of genetic counseling. III. Management of guilt and shame. American journal of medical genetics, 17(3), 673-697.
McAllister, M., Davies, L., Payne, K., Nicholls, S., Donnai, D., & MacLeod, R. (2007). The emotional effects of genetic diseases: implications for clinical genetics. American Journal of Medical Genetics Part A, 143(22), 2651-2661.
Eiser, C. (1990). Chronic childhood disease: An introduction to psychological theory and research: Cambridge University Press.
Snyder, H. T., Bilboul, M. J., & Pope, A. W. (2005). Psychosocial adjustment in adolescents with craniofacial anomalies: a comparison of parent and self-reports. The Cleft palate-craniofacial journal, 42(5), 548-555.
Pope, A. W., & Snyder, H. T. (2005). Psychosocial adjustment in children and adolescents with a craniofacial anomaly: age and sex patterns. The Cleft palate-craniofacial journal, 42(4), 349-354.
Austin, J., Semaka, A., & Hadjipavlou, G. (2014). Conceptualizing genetic counseling as psychotherapy in the era of genomic medicine. Journal of genetic counseling, 23(6), 903-909.
Biesecker, B. B. (2001). Goals of genetic counseling. Clinical genetics, 60(5), 323-330.
Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics, 106(3), 191-198.
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Estabrooks Hahn, S., Strecker, M. N., & Williams, J. L. (2006). A new definition of genetic counseling: National Society of Genetic Counselors’ task force report. Journal of genetic counseling, 15(2), 77-83.
Cohen, J. S., & Biesecker, B. B. (2010). Quality of life in rare genetic conditions: a systematic review of the literature. American Journal of Medical Genetics Part A, 152(5), 1136-1156.
Achenbach, T. M., & Rescorla, L. A. (2000). Child behavior checklist for ages 1 1/2-5. ASEBA. University of Vermont.
Ivanova, M. Y., Achenbach, T. M., Rescorla, L. A., Harder, V. S., Ang, R. P., Bilenberg, N., & Dobrean, A. (2010). Preschool psychopathology reported by parents in 23 societies: testing the seven-syndrome model of the child behavior checklist for ages 1.5–5. Journal of the American Academy of Child & Adolescent Psychiatry, 49(12), 1215-1224.
Vázquez, N., & Samaniego, V. C. Estandarización del Child Behavior Checklist para preescolares de población urbana de Argentina. Revista Evaluar, 17(1), 65-69
Ashtiani, S., Makela, N., Carrion, P., & Austin, J. (2014). Parents' experiences of receiving their child's genetic diagnosis: A qualitative study to inform clinical genetics practice. Am. J. Med. Genet., 164(6), 1496-1502.
Endriga, M. C., & Kapp-Simon, K. A. (1999). Psychological issues in craniofacial care: state of the art. The Cleft palate-craniofacial journal, 36(1), 3-11.
Vázquez, N. (2015) Problemas comportamentales y emocionales en niños preescolares, su relación con la calidad del vínculo parental. Comparación entre niños que padecen enfermedades genéticas, trastornos psíquicos y población general. Tesis Doctoral
Rescorla, L. A., Achenbach, T. M., Ivanova, M. Y., Harder, V. S., Otten, L., Bilenberg, N., ... & Dobrean, A. (2011). International comparisons of behavioral and emotional problems in preschool children: parents' reports from 24 societies. Journal of Clinical Child & Adolescent Psychology, 40(3), 456-467.
Pope, A. W., Tillman, K., & Snyder, H. T. (2005). Parenting stress in infancy and psychosocial adjustment in toddlerhood: a longitudinal study of children with craniofacial anomalies. The Cleft palate-craniofacial journal, 42(5), 556-559.
Pope, A. W., & Snyder, H. T. (2005). Psychosocial adjustment in children and adolescents with a craniofacial anomaly: age and sex patterns. The Cleft palate-craniofacial journal, 42(4), 349-354.
Hall, H. R., Neely-Barnes, S. L., Graff, J. C., Krcek, T. E., Roberts, R. J., &Hankins, J. S. (2012). Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues in comprehensive pediatric nursing, 35(1), 24-44.
Additional Files
Published
How to Cite
Issue
Section
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).
