Recognizing a child with Down’s syndrome as a subject of parenting

Authors

  • Miriam Bastidas A. University of Antioquia
  • Gustavo Ariza M. University of Antioquia
  • Liliana Zuliani A. University of Antioquia

DOI:

https://doi.org/10.17533/udea.rfnsp.12373

Keywords:

Down’s syndrome, parenting, social person, disability

Abstract

Objective: to describe how the children with Down`s syndrome are recognized by mothers as subjects of parenting and accompaniment. Methodology: an ethnographic study whose participants were 20 mothers of children with Down’s syndrome. Data were collected using semi-structured interviews and field observations. Similarly, this study included a categorical analysis and a literature review. Results: given the cultural and social conceptions regarding this condition, mothers experience sadness and anxiety upon giving birth to a child with Down’s syndrome. Despite this, and thanks to coexistence and to the mother-child bond, the child is later perceived as a subject of parenting who is equal to another person without the syndrome. Discussion: children become social subjects when they achieve their goals in growth and development, and mothers can perceive this. Conclusion: by living with their sons, the mothers participating in this study discovered that their sons emerge as social persons with Down’s syndrome. The mothers also discovered that these individuals have their own potential and that it is possible to accompany them through parenting and therefore to realize themselves as mothers.

|Abstract
= 926 veces | PDF (ESPAÑOL (ESPAÑA))
= 148 veces|

Downloads

Download data is not yet available.

Author Biographies

Miriam Bastidas A., University of Antioquia

Specialist in Pediatrics, Master in Collective Health, Professor at the Department of Pediatrics and Childcare, Faculty of Medicine, University of Antioquia. Medellin, Colombia.

Gustavo Ariza M., University of Antioquia

Sociologist, Specialist in Intervention of Family Processes. Professor at the Department of Pediatrics and Childcare, School of Medicine, University of Antioquia. Professor, María Cano University Foundation. Medellín, Colombia.

Liliana Zuliani A., University of Antioquia

Doctor, Child Neuropsychologist, Master in Collective Health. Professor at the Department of Pediatrics and Child Care. Faculty of Medicine, University of Antioquia. Medellin, Colombia.

References

(1). Devlin L, Morrison PJ. Accuracy of the clinical diagnosis of Down syndrome. Ulster Med J 2004; 73(1): 4-12.

(2). Stern D, Bruschweiler-Stern N, Freeland A. El nacimiento de una madre. Cómo la experiencia de la maternidad te cambia para siempre. Barcelona: Paidós, 1998.

(3). Bastidas M, Alcaraz GM. Comunicación de la noticia del nacimiento de un niño o niña con Síndrome de Down: el efecto de una predicción desalentadora. Rev. Fac. Nac. Salud Pública 2011; 29(1): 18-24.

(4). Maturana H, Verden-Zoller G. Amor y juego. Fundamentos olvidados de lo humano desde el patriarcado a la democracia. 5ª ed. Santiago de Chile: Comunicaciones Noreste Ltda.: 1997.

(5). Hatice RN, Dokuz E, Gunsel RN. Experiences of mothers of children with Down syndrome. Paediatric Nurs 2006; 18(4): 29-32. DOI: https://doi.org/10.7748/paed2006.05.18.4.29.c1024

(6). Nóbrega A, de Oliveira MV. Nível de adaptação baseado no modelo de Roy em mães de crianças portadores de síndrome de Down. Invest. educ. Enferm 2006; (24)2: 64-73.

(7). Van Riper M. Families of Children with Down syndrome: res-ponding to change in Plans with Resilience. J Pediatr Nurs 2007; 22(2): 116-28. DOI: https://doi.org/10.1016/j.pedn.2006.07.004

(8). Cortés Soto P. Estudio fenomenológico sobre el impacto en la familia por el nacimiento de un hijo con síndrome de Down. [Internet] 2005 [acceso 22 de julio de 2009]. Disponible en: www.educadoressociales05.org/bajando_doc.php?id=52.

(9). Hammersley M, Atkinson P. Etnografía métodos de investigación. Buenos Aires: Paidós; 1994.

(10). Guber R. La entrevista etnográfica. La etnografía Método, campo y reflexividad. Bogotá: Norma; 2001.

(11). Taylor, SJ y Bogan, R. La observación participante. Preparación del trabajo de campo En: Introducción a los métodos cualitativos de investigación. Barcelona: Paidós, 1994. p. 31-99.

(12). Gómez GE, Molina ME. Evaluación ética de proyectos de investigación: una experiencia pedagógica, Universidad de Antioquia, Colombia. Invest educ enferm. 2006; 24 (1): 68-70.

(13). Rossel K. Apego y vinculación en el Síndrome de Down, una emergencia. Rev Pediatr Electron [Internet] 2004 [acceso 29 de agosto de 2009]; 1(1). Disponible en: http://www.revistapediatria.cl/vol1num1/pdf/apego.pdf.

(14). Moscovici S. La influencia social inconsciente: estudios de psicología social experimental. Barcelona: Anthropos Editorial; 1991.

(15). Ibañez.T . Por una sociologia de la vida cotidiana. España: Siglo XXI, 1994.

(16). Slaby R, Rodell W, Arezzo D, Hendriz K. Early Violence Prevention: Tools for Teachers and Young Children (Naeyc). Washington: National Association for the Education of Young Children, 1995. p. 207.

(17). Geertz C. La interpretación de las culturas. 20o reimpr. Barcelona: Ed Gedisa, 2002. p. 132.

(18). Bronfenbrenner U. La ecología del desarrollo humano. Paidos Ibérica. Barcelona. 1987.

(19). Guralnick M. Effectiveness of early intervenection for vulnerability children. En: Feldman M. Early intervention: the essential readings. Victoria: Blackwell; 2004. p. 9-45. DOI: https://doi.org/10.1002/9780470755778.ch1

(20). Warfield ME, Krauss MW, Hauser-Cram P, Upshur CC, Shonkoff JP. Adaptation during early childhood among mothers of children with disabilities. J Dev Behav Pediatr 1999; 20(1): 9-16. DOI: https://doi.org/10.1097/00004703-199902000-00002

(21). Gomes JV. Socialização primária: tarea familiar? São Paulo: Cad Pesq; 1991.

(22). Piaget J. Problèmes de la psycho-sociologie de l ́enfance. En Etu-des Sociologiques. Geneva: Librairie Droz; 1977. p. 347. DOI: https://doi.org/10.3917/droz.piage.1977.01.0320

(23). Wolfgang L, Breitenbach E, Ebert H, Schindelhauer-Deutscher HJ. Attitudes of mothers towards their child with Down syndrome before and after the introduction of prenatal diagnosis. Intellect Dev Disabil 2007; 45(2): 98-102. DOI: https://doi.org/10.1352/1934-9556(2007)45[98:AOMTTC]2.0.CO;2

(24). Giné C. Las necesidades de la familia a lo largo del ciclo vital. En: Verdugo MA. Familias y discapacidad intelectual. Colección FEAPS - Nº 2 Madrid: 2000.

(25). Kuty O. La négociation des valeurs: introduction á la sociologie. 2 ed. París: De Boech& Larcier; 1998.

(26). Lizasoain O. Discapacidad y familia: el papel de los hermanos. El largo camino hacia una educación inclusiva: la educación especial y social del siglo XIX a nuestros días. En: XV Coloquio de His-toria de la Educación. Pamplona-Iruñea: Universidad Pública de Navarra; 2009. p. 653-60.

(27). Jodelet D. El movimiento de retorno al sujeto y el enfoque de las representaciones sociales. Cult. y repres. Sociales 2008; 3(5).

(28). Maturana H. El Sentido de lo Humano. 11ª ed. España: Dolmen; 2002.29 Mayer H. Tres teorías sobre el desarrollo del niño. Erikson, Piaget y Sear. Buenos Aires: Amorrortu; 1991.

(29). Mayer H. Tres teorías sobre el desarrollo del niño. Erikson, Piaget y Sear. Buenos Aires: Amorrortu; 1991.

Published

2013-05-16

How to Cite

1.
Bastidas A. M, Ariza M. G, Zuliani A. L. Recognizing a child with Down’s syndrome as a subject of parenting. Rev. Fac. Nac. Salud Pública [Internet]. 2013 May 16 [cited 2025 Dec. 5];31(1):102-9. Available from: https://revistas.udea.edu.co/index.php/fnsp/article/view/12373

Issue

Section

Research