Impacto del diagnóstico del síndrome de down desde la perspectiva materna
DOI:
https://doi.org/10.35699/2316-9389.2023.37077Palabras clave:
Síndrome de Down, Enfermería Pediátrica, Salud de la Familia, Comunicación en Salud, Investigación CualitativaResumen
Objetivo: comprender las percepciones maternas sobre el diagnóstico del niño con Síndrome de Down (SD). Método: estudio exploratorio-descriptivo con enfoque cualitativo, realizado con madres de niños con SD, en un hospital público de tercer nivel, en el municipio de São Paulo. La recolección se realizó a través de entrevistas individuales y semiestructuradas, regidas por un guión de temas. Los datos fueron analizados mediante análisis temático de contenido y a la luz de los principios de anclaje y objetivación de la Teoría de las Representaciones Sociales. Resultados: participaron 9 madres de niños con SD. Los datos se analizaron y surgieron dos categorías principales: 1) Percepciones maternas sobre la comunicación del diagnóstico de SD del hijo, y 2) Percepciones maternas sobre el impacto del diagnóstico de SD del hijo, con subcategorías interconectadas. Conclusión: se constató manejo predominantemente inadecuado de los profesionales en la comunicación del diagnóstico de SD, lo que potenció las reacciones emocionales de sufrimiento, que no se restringieron al momento de la noticia. Las reacciones se pueden mitigar o mejorar con la experiencia de la maternidad, las interacciones con los miembros de la familia, los profesionales de la salud y sociales.
Descargas
Referencias
Zani AV, Merino MFGL, Marcon SS. The feelings and experience of a mother facing Down syndrome. Acta Scientiarium [Internet]. 2013[cited 2021 May 9];35(1):67-75. Available from: https://www.redalyc.org/pdf/3072/307226203010.pdf
Bermudez BEBV, Medeiros SL, Bermudez MB, Novadzki IM, Magdalena NIR. Down syndrome: prevalence and distribution of congenital heart disease in Brazil. São Paulo Med J [Internet]. 2015[cited 2021 May 9];133(6):521-4. Available from: https://doi.org/10.1590/1516-3180.2015.00710108
Chan GK, Lim KA, Ling HK. Care demands on mothers caring for a child with Down Syndrome: Malaysian (Sarawak) mothers' perspectives. Inter J Nurs Practice [Internet]. 2015[cited 2021 May 9];21:522-31. Available from: https://doi.org/10.1111/ijn.12275
Aldecoa TV, Conty JLM, Serrano RSC, Pérez CF. Communication of the diagnosis of Down Syndrome: Mother's stories. Cuad Bioét [Internet]. 2018[cited 2021 May 9];29(96):147-58. Available from: https://pubmed.ncbi.nlm.nih.gov/29777603/
Crombag NM, Christiaens GCP, Skotko BG, Graaf G. Receiving the news of Down Syndrome in the era of prenatal testing. Am J Med Genet [Internet]. 2019[cited 2021 May 9];182(2):1-12. Available from: https://doi.org/10.1002/ajmg.a.61438
Ministério da Saúde (BR). Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Diretrizes de atenção à pessoa com Síndrome de Down. Brasília: Ministério da Saúde; 2013[cited 2021 Oct 9]. Available from: https://www.portaldaenfermagem.com.br/downloads/diretrizes_atencao_pessoa_sindrome_down.pdf
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care [Internet]. 2007[cited 2021 May 9];19(6):349-57. Available from: https://doi.org/10.1093/intqhc/mzm042
Fontanella BJB, Ricas J, Turato ER. Saturation sampling in qualitative health research: theoretical contributions. Cad Saúde Pública [Internet]. 2008[cited 2021 May 9];24(1):17-27. Available from: https://doi.org/10.1590/S0102-311X2008000100003
Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 10ª ed. São Paulo: HUCITEC; 2007[cited 2021 Oct 9]. 406p.
Aldecoa TV. Ethics in the Communication of Down Syndrome diagnosis. Cuad Bioét [Internet]. 2019[cited 2021 May 9];30(100):315-29. Available from: https://www.researchgate.net/publication/336614552_Ethics_in_the_communication_of_down_syndrome_diagnosis
Paul MA, Cerda J, Correa C, Lizama M. Receiving the diagnosis of Down Syndrome: what do the parents think? Rev Med Chile [Internet]. 2013[cited 2021 May 9];141:879-86. Available from: http://dx.doi.org/10.4067/S0034-98872013000700007
Buyukavci MA, Dogan DG, Canaloglu SK, Kivilcim M. Experience of mothers with Down syndrome children at the time of diagnosis. Arch Argent Pediatr [Internet]. 2019[cited 2021 May 9];117(2):114-9. Available from: https://www.sap.org.ar/docs/publicaciones/archivosarg/2019/v117n2a09e.pdf
Camargo MM, Silva MFF, Cunha MC. Impact of Down Syndrome diagnosis on mothers and its repercussions on the language development on children. Distúrb Comun [Internet]. 2012[cited 2021 Oct 9];24(2):165-72. Available from: https://revistas.pucsp.br/index.php/dic/article/download/11984/8667/28740
Pillay D, Girdler S, Collins M, Leonard H. "It's not what expecting, but it's still a beautiful jorney": The experience of mothers of children with Down Syndrome. Disabi Rehabil [Internet]. 2012[cited 2021 May 9];34(18):1501-10. Available from: https://doi.org/10.3109/09638288.2011.650313
Rodriguez FT, Carneiro TF. Babies with Down syndrome and their parents: new proposals for intervention. [Internet] Estud Psicol. 2012[cited 2021 Oct 9];29(Supl.):831s-841s. Available from: https://www.scielo.br/pdf/estpsi/v29s1/19.pdf
Almeida BR, Pereira-Silva NL. Living with a sibling with Down’s syndrome. Psicol Pesq [Internet]. 2015[cited 2021 Oct 9];9(1):10-9. Available from: http://pepsic.bvsalud.org/pdf/psipesq/v9n1/v9n1a03.pdf
Dinc GS, Cop E, Tos T, Sari E, Senel S. Mothers of 0-3 years old children with Down Syndrome: effects on quality of life. Pediatr Int [Internet]. 2019[cited 2021 May 9];61:865-71. Available from: https://doi.org/10.1111/ped.13936
Lou S, Lanther MR, Hagenstjerne N, Petersen OB, Vogel I. “This is the child we were given": a qualitative study of Danish parents' experiences of a prenatal Down Syndrome diagnosis and their decision to continue the pregnancy. Sexual Reproductive Healthcare [Internet]. 2020[cited 2021 Oct 9];23:1-6. Available from: https://doi.org/10.1016/j.srhc.2019.100480
Miranda ACRL, Barreto MS. Children with Down Syndrome: quotidian experiences of the families. Rev Par Enferm [Internet]. 2019[cited 2021 Oct 9];2(1):13-22. Available from: https://www.researchgate.net/publication/347948260_CRIANCAS_COM_SINDROME_DE_DOWN_EXPERIENCIAS_QUOTIDIANAS_VIVENCIADAS_PELAS_FAMILIAS
Takataya K, Yamazaki Y, Mizuno E. Perceptions and Feelings of fathers of children with Down Syndrome. Arch Psychiatr Nurs. 2016[cited 2021 Oct 9];30(5):544-51. Available from: http://dx.doi.org/10.1016/j.apnu.2016.04.006
Goffman E. Estigma- Notas sobre a manipulação da identidade deteriorada. 4ª ed. Rio de Janeiro: LTC; 1981[cited 2021 Oct 9]. 124p.
Badinter E. Um amor conquistado: o mito do amor materno. 2ª ed. São Paulo: Nova Fronteira; 1985[cited 2021 Oct 9]. 293 p.
Archivos adicionales
Publicado
Número
Sección
Licencia
Derechos de autor 2023 REME-Revista Mineira de Enfermagem
Esta obra está bajo una licencia internacional Creative Commons Atribución 4.0.
Links
Facebook
Instagram
Twitter
