“Very busy”: daily reorganization of mothers to care of children with Congenital Zika Syndrome

Abstract

Objective: To understand the experiences and care practices of mothers of children with congenital Zika syndrome. Methods: A qualitative study with collection held in Feira de Santana - Bahia, between September and November 2017, from in-depth interviews and Story-Drawing with 11 family members of children, using thematic content analysis. Results: Mothers take care from experiences with health professionals and groups of mothers. They reorganize themselves in order to optimize time, streamline domestic activities, teach family members, and navigate care spaces. They experience the routine organizing the home, taking care of the children and, specifically, the child with syndrome, referring to: bedtime; giving a shower; changing diapers; feeding; playing; and, stimulating, actions mediated by intense crying and environmental preparation. Conclusion: The experiences are unique and exceptional, conforming the social representation of the mothers as a group, the “mothers of micro”, an aspect that differs from other experiences.

Feeding modifications and additional primary caregiver support for infants exposed to Zika virus or diagnosed with congenital Zika syndrome: a rapid review of the evidence

“…Infants with CZVS also had limited variety of foods in their diet and lipid intakes below recommended allowances [35]. Starch‐rich meals were used to avoid choking [35, 38], displacing foods that are more nutrient‐dense [35]. Iron and other micronutrient supplementation and intake of ultra‐processed foods were more common among children with CZVS compared to healthy children [34].…”

“…Many of the studies also described the primary caregivers of infants exposed to ZIKV or diagnosed with CZVS. Most primary caregivers were mothers less than 30 years of age who did not have a partner and who lived in low‐income households [34, 36, 38, 40]. In one of the studies, over 60% of mothers had not received prenatal care before 6 months of pregnancy [36].…”

“…Higher education was related to better weight status in one of the studies [36]. Caretakers of children with CZVS had very demanding daily routines of household chores, care and oversight of siblings without CZVS, care of the child with CZVS and attending child rehabilitation/stimulation centres [38]. These activities left little time for leisure, self‐care and employment.…”

Repercussões da pandemia da COVID-19 em mães-crianças com síndrome congênita do Zika

“…As crianças dependem total e quase exclusivamente das mães, (8) utilizam medicamentos diariamente a fim de amenizar os episódios de espasmos, rigidez muscular e, principalmente, convulsões. (9) Por sua vez as mães percorrem itinerários terapêuticos desgastantes em prol do desenvolvimento in-fantil, (5) convivem com níveis elevados de depressão e ansiedade, além de diminuição na qualidade de vida no primeiro ano de vida da criança.…”

Child-mothers with congenital Zika syndrome: daily rites for the prevention of COVID-19

“…The daily life of mothers of children with congenital Zika virus syndrome (CZS) involves dedicating themselves entirely to the child (1) , going through complex therapeutic itineraries, performing stimulation in the home environment and performing care attitudes, such as lulling, playing, feeding and cleaning, in addition to home care and other family members (2) .…”