TY - JOUR
T1 - Experiences of women raising children with congenital Zika syndrome along a trajectory of prevention, care and support in Brazil
AU - Morris, Maximilian
AU - Brito, Ana
AU - Malta, Monica
AU - Jacques, Iracema
AU - Rocha, Grizielle
AU - Novaes, Rayanne
AU - Mantsios, Andrea
AU - Kerrigan, Deanna
N1 - Funding Information:
This work was supported by the Fulbright U.S. Scholar Program. We extend our sincere thanks to the mothers who shared their time and stories, and the Fiocruz clinic staff in Recife for their support and assistance in implementing the study.
Publisher Copyright:
© 2022 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2022
Y1 - 2022
N2 - Social science research investigating the social dynamics of Zika and congenital Zika syndrome (CZS) is essential to inform future services related to Zika and other infectious diseases. We sought to understand lived experiences with Zika during pregnancy, birth, and post-partum by conducting in-depth interviews with a sample of 31 women infected with Zika during the 2015–16 outbreak who had a child with CZS in Pernambuco, Brazil. Transcripts were coded using thematic content analysis. Many women experienced shock when their children were born with CZS given the lack of information they were provided during the antenatal period. Stigma from loved ones and community members was a salient theme as were financial difficulties arising from women having to stop working to care for their child. While women experienced significant challenges caring for a child with CZS, they also exhibited resiliency in their ability to move from shock and sorrow to focusing on the needs of their child. While support services were generally available, they were often located at a significant distance. Results underscore the need for interventions to improve patient-provider communication, address socio-structural stressors, and support individual and collective resilience in women and families affected by Zika in lower resource settings.
AB - Social science research investigating the social dynamics of Zika and congenital Zika syndrome (CZS) is essential to inform future services related to Zika and other infectious diseases. We sought to understand lived experiences with Zika during pregnancy, birth, and post-partum by conducting in-depth interviews with a sample of 31 women infected with Zika during the 2015–16 outbreak who had a child with CZS in Pernambuco, Brazil. Transcripts were coded using thematic content analysis. Many women experienced shock when their children were born with CZS given the lack of information they were provided during the antenatal period. Stigma from loved ones and community members was a salient theme as were financial difficulties arising from women having to stop working to care for their child. While women experienced significant challenges caring for a child with CZS, they also exhibited resiliency in their ability to move from shock and sorrow to focusing on the needs of their child. While support services were generally available, they were often located at a significant distance. Results underscore the need for interventions to improve patient-provider communication, address socio-structural stressors, and support individual and collective resilience in women and families affected by Zika in lower resource settings.
KW - Brazil
KW - Zika
KW - congenital Zika syndrome
KW - qualitative
KW - resilience
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U2 - 10.1080/17441692.2022.2098999
DO - 10.1080/17441692.2022.2098999
M3 - Article
C2 - 35849617
AN - SCOPUS:85134225318
SN - 1744-1692
VL - 17
SP - 3533
EP - 3547
JO - Global public health
JF - Global public health
IS - 12
ER -