"One feels anger to know there is no one to help us!". Perceptions of mothers of children with Zika virus-associated microcephaly in Caribbean Colombia: A qualitative study

PLoS Negl Trop Dis. 2022 Apr 18;16(4):e0010328. doi: 10.1371/journal.pntd.0010328. eCollection 2022 Apr.

Abstract

Background: The epidemic of Zika virus (ZIKV) was associated with a sudden and unprecedented increase in infants born with microcephaly. Colombia was the second most affected country by the epidemic in the Americas. Primary caregivers of children with ZIKV-associated microcephaly, their mothers mainly, were at higher risk of suffering anxiety and depression. Often, these women were stigmatized and abandoned by their partners, relatives, and communities.

Methodology/principal findings: This study aimed to understand the perceptions about ZIKV infection among mothers of children born with microcephaly during the ZIKV epidemic in Caribbean Colombia, and the barriers and facilitators affecting child health follow-up. An exploratory qualitative study, based on Phenomenology and Grounded Theory, was conducted in Caribbean Colombia. Data were collected through In-Depth Interviews (IDI) from women who delivered a baby with microcephaly during the ZIKV epidemic at Clínica Salud Social, Sincelejo, Sucre District (N = 11). The themes that emerged during the interviews included experiences from their lives before pregnancy; knowledge about ZIKV; experiences and perceptions when diagnosed; considering a possible termination of pregnancy, and children's clinical follow-up. In some cases, women reported having been told they were having a baby with microcephaly but decided not to terminate the pregnancy; while in other cases, women found out about their newborn's microcephaly condition only at birth. The main barriers encountered by participants during children's follow-up included the lack of psychosocial and economic support, the stigmatization and abandonment by some partners and relatives, and the frustration of seeing the impaired development of their children.

Conclusions: This study contributed to identifying the social, medical, psychological, and economic needs of families with children affected by the ZIKV epidemic. Commitment and action by local and national governments, and international bodies, is required to ensure sustained and quality health services by affected children and their families.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Anger
  • Brazil
  • Child
  • Colombia / epidemiology
  • Female
  • Humans
  • Infant
  • Infant, Newborn
  • Microcephaly* / epidemiology
  • Mothers
  • Pregnancy
  • Pregnancy Complications, Infectious* / epidemiology
  • Zika Virus Infection* / complications
  • Zika Virus Infection* / diagnosis
  • Zika Virus Infection* / epidemiology
  • Zika Virus*

Grants and funding

This study was funded by the Government of Spain under grant agreement number PI16/0123, ISCIII-AES Proyectos de Investigación en Salud, 2016; granted to A.B. Additionally, E. M-C. was supported by a predoctoral fellowship from “la Caixa” Foundation (ID 100010434); fellowship code LCF/BQ/ES17/11600006. E.M-C. received a mobility grant by Universitat de Barcelona for her stay in Colombia. A.B. was supported by the Ministry of Science, Innovation, and Universities, Government of Spain through a Ramon y Cajal Grant (RYC-2013-14512). ISGlobal is a member of the CERCA Programme, Generalitat de Catalunya. We acknowledge support from the Spanish Ministry of Science and Innovation through the “Centro de Excelencia Severo Ochoa 2019-2023” Program (CEX2018-000806-S), and support from the Generalitat de Catalunya through the CERCA Program. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.