Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil.

BACKGROUND: Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. METHODS: A cross-sectional study was carried out with 146 primary caregivers of children 15-26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. RESULTS: Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1-11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3-81.7; p = 0.026)). CONCLUSIONS: Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.

Adapting the Ages and Stages Questionnaire to Identify and Quantify Development Among Children With Evidence of Zika Infection.

This article describes novel methods of applying the Ages and Stages Questionnaire-3rd edition (ASQ-3) to assess and quantify developmental delay among children following the 2015-2016 Zika virus outbreak in Brazil. Many of the children with Zika virus infection were expected to have severe developmental delay. However, administering the ASQ-3 to caregivers of these children according to standard protocol would have screened for the overall presence of delay but not the severity of delay. We adopted an amended protocol for administration of the ASQ-3 to quantify the developmental functioning of children severely affected by Zika virus infection in this investigation. Protocols for administering the ASQ-3 among this population were drafted in consultation with developmental measurement experts and are presented here. Specific developmental estimates are discussed, including developmental age equivalents, developmental quotients, and developmental quotient z scores. The calculations of these estimates are presented with examples in the context of the 2015-2016 Zika virus outbreak and associated microcephaly among prenatally infected children from 2 states in northeastern Brazil. Potential applications of these methods for estimating developmental ability among similar pediatric populations are discussed.

Early Growth Parameters as Predictors of Developmental Delay Among Children Conceived During the 2015-2016 Zika Virus Outbreak in Northeastern Brazil.

BACKGROUND: Identifying infants with congenital infection for early intervention will likely be challenging in future Zika virus outbreaks. We investigated indicators of risk for developmental delay among children born with and without obvious manifestations of congenital Zika virus infection. METHODS: We evaluated 120 children conceived during the 2015-2016 Zika virus outbreak in Paraíba, Brazil. We analyzed data from children at birth; ages 1-7 months and approximately 24 months, using medical records (i.e., anthropometric measurements diagnoses), medical evaluation (i.e., Zika/other laboratory tests, dysmorphic features), and parent report (seizures, developmental delay). We used a Bayesian modeling approach to identify predictors of developmental delay. RESULTS: Head circumference (HC) and length at birth and rates of growth for HC and length at follow-up were consistent across domains of developmental delay; (e.g., for every 1 cm per month decrease in HC growth rate; there was a corresponding decrease in the gross motor z-score). Modeling results indicated that HC and length at birth, and follow-up HC and length rates of growth, were predictive of developmental delay. CONCLUSION: These findings suggest that accurate measurement and frequent monitoring of HC and length, especially in the first few months of life, may be useful for identifying children possibly congenitally exposed to Zika virus who could benefit from early intervention services.

Functional Outcomes among a Cohort of Children in Northeastern Brazil Meeting Criteria for Follow-Up of Congenital Zika Virus Infection.

Following the large outbreak of Zika virus in the Western Hemisphere, many infants have been born with congenital Zika virus infection. It is important to describe the functional outcomes seen with congenital infections to allow for their recognition and appropriate interventions. We evaluated 120 children conceived during the 2015-2016 Zika virus outbreak in Paraíba, Brazil, who were approximately 24 months old, to assess functional outcomes. All children met either anthropometric criteria or laboratory criteria suggestive of possible congenital Zika virus infection. We collected results of previous medical evaluations, interviewed parents, and performed physical examinations and functional assessments, for example, the Hammersmith Infant Neurological Examination (HINE). We compared patterns of neurologic outcomes and developmental delay at age 24 months by whether children met anthropometric or laboratory criteria, or both. Among children meeting both criteria, 60% (26/43) were multiply affected (had severe motor impairment, severe developmental delay, and suboptimal HINE scores), compared with 5% (3/57) meeting only laboratory criteria and none (0/20) meeting only anthropometric criteria. Of the remaining 91 children, 49% (45) had developmental delay, with more severe delay seen in children meeting both criteria. Although children meeting physical and laboratory criteria for potential congenital Zika virus infection were more severely affected, we did identify several children with notable adverse neurologic outcomes and developmental delay with no physical findings but potential laboratory evidence of Zika virus infection. Given this, all children who were potentially exposed in utero to Zika virus should be monitored in early childhood for deficits to allow for early intervention.

Trends Over Time and Jurisdiction Variability in Supplemental Security Income and State Supplementary Payment Programs for Children With Disabilities.

CONTEXT: Nearly 1.2 million children with disabilities received federally administered Supplemental Security Income (SSI) payments in 2017. Based on a robust review of research and evaluation evidence and microsimulations, The National Academies of Sciences, Engineering, and Medicine committee identified modifications to SSI (ie, increasing the federal SSI benefit maximum by one-third or two-thirds) as 1 of 10 strategies that could reduce the US child poverty rate, improving child health and well-being on a population level. OBJECTIVE: Describing the availability and amount of SSI and State Supplementary Payment (SSP) program benefits to support families of children with disabilities may be a first step toward evaluating The National Academies of Sciences, Engineering, and Medicine-proposed modification to SSI as a potential poverty alleviation and health improvement tool for children with disabilities and their families. DESIGN: We used public health law research methods to characterize the laws (statutes and state agency regulations) governing the federal SSI program and SSP programs in the 50 states and District of Columbia from January 1, 1996, through November 1, 2018. RESULTS: The number of jurisdictions offering supplementary payments (SSP) was relatively stable between 1996 and 2018. In 2018, 23 US jurisdictions legally mandated that SSP programs were available for children. Among the states with SSP payment amounts in their codified laws, SSP monthly benefit amounts ranged from $8 to $64.35 in 1996 and $3.13 to $60.43 in 2018. CONCLUSION: Our initial exploration of SSI-related policies as a tool for improving the economic stability of children with disabilities and their families suggests that current SSPs, in combination with SSI, would not rise to the level of SSI increases proposed by The National Academies of Sciences, Engineering, and Medicine. Understanding more about how SSI and SSP reach children and work in combination with other federal and state income security programs may help identify policies and strategies that better support children with disabilities in low-income households.

Depressive Symptoms and Care Demands Among Primary Caregivers of Young Children with Evidence of Congenital Zika Virus Infection in Brazil.

OBJECTIVE: Evidence suggests that caring for a child with special health care needs can affect many domains of family life, including caregiver mental health. However, few studies have examined these outcomes among families impacted by the Zika virus (ZIKV). This study examines depressive symptom severity and care demands among primary caregivers of children, aged 15 to 26 months, with evidence of congenital Zika virus infection (ZVI). METHODS: A sample of primary caregivers of children with evidence of congenital ZVI in northeastern Brazil (n = 150) reported on depressive symptoms, care demands, and their children's development. Children were categorized into groups according to their developmental delay status. Bivariate analyses were run to test for differences between groups. A path analysis model was used to examine the indirect effects of developmental delay on depressive symptoms through economic challenges and time spent providing health care at home and whether these associations varied by child care support. RESULTS: Compared to primary caregivers of children without developmental delay, primary caregivers of children with developmental delay had higher depression scores (p = 0.002), reported more economic (p < 0.001) and child care (p < 0.001) challenges, and spent more time providing health care at home (p < 0.001). Among primary caregivers who did not have child care support, developmental delay had a significant indirect effect on depressive symptoms through economic challenges but not through time spent providing health care at home. CONCLUSION: For families impacted by the ZIKV outbreak in Brazil, economic and child care challenges may be associated with primary caregiver mental health.

Health and Development at Age 19-24 Months of 19 Children Who Were Born with Microcephaly and Laboratory Evidence of Congenital Zika Virus Infection During the 2015 Zika Virus Outbreak - Brazil, 2017.

In November 2015, the Brazilian Ministry of Health (MOH) declared the Zika virus outbreak a public health emergency after an increase in microcephaly cases was reported in the northeast region of the country (1). During 2015-2016, 15 states in Brazil with laboratory-confirmed Zika virus transmission reported an increase in birth prevalence of microcephaly (2.8 cases per 10,000 live births), significantly exceeding prevalence in four states without confirmed transmission (0.6 per 10,000) (2). Although children with microcephaly and laboratory evidence of Zika virus infection have been described in early infancy (3), their subsequent health and development have not been well characterized, constraining planning for the care and support of these children and their families. The Brazilian MOH, the State Health Secretariat of Paraíba, and CDC collaborated on a follow-up investigation of the health and development of children in northeastern Brazil who were reported to national surveillance with microcephaly at birth. Nineteen children with microcephaly at birth and laboratory evidence of Zika virus infection were assessed through clinical evaluations, caregiver interviews, and review of medical records. At follow-up (ages 19-24 months), most of these children had severe motor impairment, seizure disorders, hearing and vision abnormalities, and sleep difficulties. Children with microcephaly and laboratory evidence of Zika virus infection have severe functional limitations and will require specialized care from clinicians and caregivers as they age.