Experiência de mães após o diagnóstico de malformação congênita e as expectativas de cuidado

Ana Cláudia Monzon Zampoli; Sebastião Caldeira; Karine Brito dos Santos; Oscar Kenji Nihei; Rosane Meire Munhak da Silva

doi:10.15253/2175-6783.20222378408

Authors

Ana Cláudia Monzon Zampoli Universidade Estadual do Oeste do Paraná https://orcid.org/0000-0002-4991-2698
Sebastião Caldeira Universidade Estadual do Oeste do Paraná https://orcid.org/0000-0003-2827-1833
Karine Brito dos Santos Universidade Federal da Integração Latino-Americana https://orcid.org/0000-0002-9185-1999
Oscar Kenji Nihei Universidade Estadual do Oeste do Paraná https://orcid.org/0000-0002-9156-7787
Rosane Meire Munhak da Silva Universidade Estadual do Oeste do Paraná https://orcid.org/0000-0003-3355-0132

DOI:

https://doi.org/10.15253/2175-6783.20222378408

Keywords:

Maternal and Child Health; Fetal Diseases; Perinatal Care; Qualitative Research.

Abstract

Objective: to understand the experience of mothers after the diagnosis of congenital malformation and the expectations of care from the health and social network. Methods: qualitative research based on Social Phenomenology, with the participation of six mothers living in border towns, by means of semi-structured interviews. Results: the reports brought information about the diagnosis of congenital malformation, the experience of pregnancy, becoming a mother of a child with malformation and the expectations of health and social care. Conclusion: the social group studied experienced the diagnosis of malformation with suffering, emotional repercussions and changes in their daily lives. Contributions to practice: communication by the health team contributes to understanding and facing the malformation. The importance of the family and social network support was highlighted. It is necessary to develop professional skills related to communication and to make more investments in training and working conditions that allow more time for the care of this public.

References

Silva CV, Carvalho TC, Abrão DF, Silva AP, Morais FRC, Carvalho IS. Repercussions of the diagnosis of fetus malformation under the light of Betty Neuman’s theory. Rev Rene. 2022;23:e71993. doi:https://doi.org/10.15253/2175-6783.20222371993

Dutra LS, Ferreira AP. Association between birth defects and the use of agrochemicals in monocultures in the state of Paraná, Brazil. Saúde Debate. 2017;41(2):241-53. doi: https://dx.doi.org/10.1590/0103-11042017S220

Dourado TL, Cordeiro TR, Rosa RRM. Estudo de prevalência de malformações fetais a partir da análise de aminiocentese, cordocentese e biósia do vilo coriônico. Saúde Multidisciplinar [Internet]. 2019 [cited Feb 18, 2022];6(2):1-8. Available from: http://revistas.famp.edu.br/revistasaudemultidisciplinar/article/view/88/86

Sampaio LFD, Pereira NM, Barreto NMPV, Correia HF. Profile of Children’s hospitalization due to congenital malformations of the circulatory apparatus in Brazil from 2010 to 2020. Rev Ciênc Méd Biol. 2021;20(3):425-30. doi: https://doi.org/10.9771/cmbio.v20i3.47085

Freire MHS, Barros APMM, Andrade L, Nihei OK, Fontes KB. Geospatial analysis of births with congenital disorders, Paraná, 2008-2015: ecological study. Rev Bras Enferm. 2020;73(3):e20180741. doi:https://dx.doi.org/10.1590/0034-7167-2018-0741

World Health Organization. Congenital anomalies [Internet]. 2020 [cited Jan 24, 2022]. Available from: https://www.who.int/es/news-room/fact-sheets/detail/congenital-anomalies

Souza ALDM, Zilly A, Cardeli AAM, Fracarolli IFL, Ferrari FAP. Rede mãe paranaense: assistência ao pré-natal entre mulheres no extremo da idade. R Saúde Pública Paraná. 2021;4(2):25-0. doi: https://doi.org/10.32811/25954482-2021v4n2p25

Beltrame CH, Batista FFA, Caldeira S, Zani AV, Cardelli AAM, Ferrari RAP. Mothers’ experience in following up their newborns: a phenomenological study. Online Braz J Nurs. 2019;18(2):1-4. doi: https://doi.org/10.17665/1676-4285.20196270

Seixas CT, Merhy EE, Feuerwerker LCM, Santo TBE, Slomp Junior H, Cruz KT. A crise como potência: os cuidados de proximidade e a epidemia pela Covid-19. Interface (Botucatu). 2020;25(suppl 1):e200379. doi: https://doi.org/10.1590/interface.200379

Ferreira SV, Soares MC, Cecagno S, Alves CN, Soares TM, Braga LR. Nursing care from the perspective of pregnant women at high risk. REFACS. 2019;7(2):143-50. doi: http://doi.org/10.18554/refacs.v7i2.3410

Medeiros ACR, Vitorino BLC, Spoladori IC, Maroco JC, Silva VLM, Salles MJS. Sentimento materno ao receber um diagnóstico de malformação congênita. Psicol Estud. 2021;26:1-12. doi: https://doi.org/10.4025/psicolestud.v26i0.45012

Schütz A. Sobre fenomenologia e relações sociais. Rio de Janeiro: Vozes; 2012.

Caldeira S, Luz MS, Tacla MTGM, Machineski GG, Silva RMM, Pinto MPV, et al. Nursing care actions in the paranaense mother network program. Rev Min Enferm. 2017;21:e992. doi: https://www.dx.doi.org/10.5935/1415-2762.20170002

Teixeira RA, Ferrari RAP, Caldeira S, Tacla MTGM, Zani AV. Pregnant-puerperal care in Network: the experience of nurses, doctors and administrators. Rev Bras Enferm. 2019;72(suppl 1):151-8. doi: https://doi.org/10.1590/0034-7167-2017-0558

Fontoura FC, Cardoso MVLML, Rodrigues SE, Almeida PC, Carvalho LB. Anxiety of mothers of newborns with congenital malformations in the pre- and postnatal periods. Rev Latino-Am Enfermagem. 2018;26:e3080. doi: https://doi.org/10.1590/1518-8345.2482.3080

Costa ES, Bonfim EG, Magalhães RLB, Viana LMM. Mothers’ experiences of children with microcephaly. Rev Rene. 2018;19:e3453. doi: https://doi.org/10.15253/2175-6783.2018193453

Hamad GBNZ, Tupinambás U, Souza KV. Vulnerabilities and stresses of families of children with Congenital Zika Virus Syndrome. Rev Rene. 2021;22:e62772. doi: https://doi.org/10.15253/2175-6783.20212262772