{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T02:26:36Z","timestamp":1790303196906,"version":"4.1.0"},"reference-count":43,"publisher":"American Academy of Pediatrics (AAP)","issue":"Supplement_2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2018,2,1]]},"abstract":"<jats:p>Congenital Zika virus infection has obvious implications for infants, and considerable research has addressed the nature and consequences of congenital Zika syndrome (CZS). Children with classic CZS meet the criteria for \u201cchildren with medical complexity,\u201d and ongoing research is required to understand the range of needs and optimal treatment options. Far less attention has been given to the consequences of CZS for families, which are both immediate and lifelong. Although families of children with CZS have much in common with families of other children with disabilities, at least 4 features of CZS have special family implications: (1) the severity of the impact on children with obvious abnormalities at birth, coupled with the anticipation of a lifetime of caregiving and economic burdens; (2) uncertainty about the unfolding consequences, both for obviously affected children and for exposed children with no symptoms at birth; (3) a lack of specialized professional knowledge about the course of the disease or treatment options; and (4) social isolation, a lack of social or community supports, and potential stigma. Supporting families will require a family-centered approach to services, extensive care coordination, access to evolving new information, ongoing surveillance, formal and informal supports, and individualized child and family services.<\/jats:p>","DOI":"10.1542\/peds.2017-2038g","type":"journal-article","created":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T10:00:23Z","timestamp":1517479223000},"page":"S180-S187","source":"Crossref","is-referenced-by-count":66,"title":["The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services"],"prefix":"10.1542","volume":"141","author":[{"suffix":"Jr","given":"Donald B.","family":"Bailey","sequence":"first","affiliation":[{"name":"RTI International, Research Triangle Park, North Carolina; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liana O.","family":"Ventura","sequence":"additional","affiliation":[{"name":"Altino Ventura Foundation, Recife, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2018,2,1]]},"reference":[{"issue":"52","key":"2021120906475827800_B1","doi-asserted-by":"crossref","first-page":"1482","DOI":"10.15585\/mmwr.mm6552e1","article-title":"Zika virus-10 public health achievements in 2016 and future priorities.","volume":"65","author":"Oussayef","year":"2017","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"10","key":"2021120906475827800_B2","doi-asserted-by":"crossref","first-page":"689","DOI":"10.7326\/M16-0332","article-title":"Emergence of congenital Zika syndrome: viewpoint from the front lines.","volume":"164","author":"Costa","year":"2016","journal-title":"Ann Intern Med"},{"issue":"3","key":"2021120906475827800_B3","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1352\/0895-8017(2004)109<237:PWACIM>2.0.CO;2","article-title":"Psychological well-being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome.","volume":"109","author":"Abbeduto","year":"2004","journal-title":"Am J Ment Retard"},{"issue":"6","key":"2021120906475827800_B4","doi-asserted-by":"crossref","first-page":"720","DOI":"10.1002\/ajmg.a.32240","article-title":"Child and genetic variables associated with maternal adaptation to fragile X syndrome: a multidimensional analysis.","volume":"146A","author":"Bailey","year":"2008","journal-title":"Am J Med Genet A"},{"issue":"3","key":"2021120906475827800_B5","doi-asserted-by":"crossref","first-page":"288","DOI":"10.1001\/jamapediatrics.2016.3982","article-title":"Characterizing the pattern of anomalies in congenital Zika syndrome for pediatric clinicians.","volume":"171","author":"Moore","year":"2017","journal-title":"JAMA Pediatr"},{"issue":"1","key":"2021120906475827800_B6","doi-asserted-by":"crossref","first-page":"26","DOI":"10.5858\/arpa.2016-0382-RA","article-title":"Zika virus infection in pregnancy, microcephaly, and maternal and fetal health: what we think, what we know, and what we think we know.","volume":"141","author":"Alvarado","year":"2017","journal-title":"Arch Pathol Lab Med"},{"issue":"11","key":"2021120906475827800_B7","doi-asserted-by":"crossref","first-page":"1953","DOI":"10.3201\/eid2211.160956","article-title":"Early growth and neurologic outcomes of infants with probable congenital Zika virus syndrome.","volume":"22","author":"Moura da Silva","year":"2016","journal-title":"Emerg Infect Dis"},{"issue":"4","key":"2021120906475827800_B8","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1016\/j.jaapos.2017.04.003","article-title":"Visual impairment in children with congenital Zika syndrome.","volume":"21","author":"Ventura","year":"2017","journal-title":"J AAPOS"},{"issue":"3","key":"2021120906475827800_B9","doi-asserted-by":"crossref","first-page":"529","DOI":"10.1542\/peds.2010-0910","article-title":"Children with medical complexity: an emerging population for clinical and research initiatives.","volume":"127","author":"Cohen","year":"2011","journal-title":"Pediatrics"},{"issue":"3","key":"2021120906475827800_B10","doi-asserted-by":"crossref","first-page":"323","DOI":"10.1111\/cch.12430","article-title":"Children with medical complexity: a scoping review of interventions to support caregiver stress.","volume":"43","author":"Edelstein","year":"2017","journal-title":"Child Care Health Dev"},{"issue":"9","key":"2021120906475827800_B11","doi-asserted-by":"crossref","first-page":"705","DOI":"10.1097\/DBP.0b013e318272dcbc","article-title":"Health and economic consequences of fragile X syndrome for caregivers.","volume":"33","author":"Bailey","year":"2012","journal-title":"J Dev Behav Pediatr"},{"issue":"7","key":"2021120906475827800_B12","doi-asserted-by":"crossref","first-page":"1518","DOI":"10.1016\/j.ridd.2014.04.009","article-title":"A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability.","volume":"35","author":"Ouyang","year":"2014","journal-title":"Res Dev Disabil"},{"issue":"11","key":"2021120906475827800_B13","doi-asserted-by":"crossref","first-page":"1116","DOI":"10.1111\/dmcn.13201","article-title":"Children with medical complexity: creating a framework for care based on the International Classification of Functioning, Disability and Health.","volume":"58","author":"Glader","year":"2016","journal-title":"Dev Med Child Neurol"},{"issue":"1","key":"2021120906475827800_B14","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1097\/01269241-200701000-00007","article-title":"Innovations in disability care coordination organizations: integrating primary care and behavioral health clinical systems.","volume":"12","author":"Mastal","year":"2007","journal-title":"Prof Case Manag"},{"issue":"5","key":"2021120906475827800_B15","doi-asserted-by":"crossref","first-page":"528","DOI":"10.1097\/INF.0000000000001486","article-title":"Microcephaly case fatality rate associated with Zika virus infection in Brazil: current estimates.","volume":"36","author":"Cunha","year":"2017","journal-title":"Pediatr Infect Dis J"},{"issue":"3","key":"2021120906475827800_B16","doi-asserted-by":"crossref","first-page":"405","DOI":"10.3201\/eid2303.161499","article-title":"Zika virus RNA replication and persistence in brain and placental tissue.","volume":"23","author":"Bhatnagar","year":"2017","journal-title":"Emerg Infect Dis"},{"issue":"47","key":"2021120906475827800_B17","doi-asserted-by":"crossref","first-page":"1343","DOI":"10.15585\/mmwr.mm6547e2","article-title":"Description of 13 infants born during October 2015-January 2016 with congenital Zika virus infection without microcephaly at birth - Brazil.","volume":"65","author":"van der Linden","year":"2016","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"10","key":"2021120906475827800_B18","doi-asserted-by":"crossref","first-page":"952","DOI":"10.3928\/23258160-20161004-09","article-title":"First travel-associated congenital Zika syndrome in the US: ocular and neurological findings in the absence of microcephaly.","volume":"47","author":"Ventura","year":"2016","journal-title":"Ophthalmic Surg Lasers Imaging Retina"},{"issue":"5","key":"2021120906475827800_B19","doi-asserted-by":"crossref","first-page":"478","DOI":"10.1001\/jamapediatrics.2017.0002","article-title":"Bridging knowledge gaps to understand how Zika virus exposure and infection affect child development.","volume":"171","author":"Kapogiannis","year":"2017","journal-title":"JAMA Pediatr"},{"issue":"2","key":"2021120906475827800_B20","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1093\/fampra\/cmh203","article-title":"Patients in waiting: a qualitative study of type 2 diabetes patients\u2019 perceptions of diagnosis.","volume":"21","author":"Parry","year":"2004","journal-title":"Fam Pract"},{"issue":"4","key":"2021120906475827800_B21","doi-asserted-by":"crossref","first-page":"408","DOI":"10.1177\/0022146510386794","article-title":"Patients-in-waiting: living between sickness and health in the genomics era.","volume":"51","author":"Timmermans","year":"2010","journal-title":"J Health Soc Behav"},{"issue":"9","key":"2021120906475827800_B22","doi-asserted-by":"crossref","first-page":"712","DOI":"10.1097\/DBP.0000000000000363","article-title":"Unmet health services needs among US children with developmental disabilities: associations with family impact and child functioning.","volume":"37","author":"Lindly","year":"2016","journal-title":"J Dev Behav Pediatr"},{"issue":"6","key":"2021120906475827800_B23","doi-asserted-by":"crossref","first-page":"784","DOI":"10.1111\/cch.12383","article-title":"Parents\u2019 voices: \u2018why and how we advocate.\u2019 A meta-synthesis of parents\u2019 experiences of advocating for their child with autism spectrum disorder.","volume":"42","author":"Boshoff","year":"2016","journal-title":"Child Care Health Dev"},{"issue":"7","key":"2021120906475827800_B24","doi-asserted-by":"crossref","first-page":"182","DOI":"10.15585\/mmwr.mm6507e1","article-title":"Update: interim guidelines for health care providers caring for infants and children with possible Zika virus infection\u2014United States, February 2016.","volume":"65","author":"Fleming-Dutra","year":"2016","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"4","key":"2021120906475827800_B25","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1001\/jamapediatrics.2016.0429","article-title":"What pediatricians and other clinicians should know about Zika virus.","volume":"170","author":"Kline","year":"2016","journal-title":"JAMA Pediatr"},{"issue":"33","key":"2021120906475827800_B26","doi-asserted-by":"crossref","first-page":"870","DOI":"10.15585\/mmwr.mm6533e2","article-title":"Update: interim guidance for the evaluation and management of infants with possible congenital zika virus infection - United States, August 2016.","volume":"65","author":"Russell","year":"2016","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"2","key":"2021120906475827800_B27","doi-asserted-by":"crossref","first-page":"436","DOI":"10.1111\/cdev.12740","article-title":"Intellectual disability and developmental risk: promoting intervention to improve child and family well-being.","volume":"88","author":"Crnic","year":"2017","journal-title":"Child Dev"},{"issue":"1","key":"2021120906475827800_B28","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1111\/fare.12185","article-title":"Managing stress levels of parents of children with developmental disabilities: a meta-analytic review of interventions.","volume":"65","author":"Lindo","year":"2016","journal-title":"Fam Relat"},{"issue":"4","key":"2021120906475827800_B29","doi-asserted-by":"crossref","first-page":"496","DOI":"10.1177\/001440291007600407","article-title":"Measuring family outcomes in early intervention: findings from a large-scale assessment.","volume":"76","author":"Raspa","year":"2010","journal-title":"Except Child"},{"issue":"4","key":"2021120906475827800_B30","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2006-2775","article-title":"Modeling the impact of formal and informal supports for young children with disabilities and their families.","volume":"120","author":"Bailey","year":"2007","journal-title":"Pediatrics"},{"issue":"1","key":"2021120906475827800_B31","doi-asserted-by":"crossref","first-page":"20","DOI":"10.1053\/j.semperi.2010.10.004","article-title":"Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact.","volume":"35","author":"Gooding","year":"2011","journal-title":"Semin Perinatol"},{"issue":"4","key":"2021120906475827800_B32","doi-asserted-by":"crossref","first-page":"227","DOI":"10.1177\/105381510602800401","article-title":"Recommended outcomes for families of young children with disabilities.","volume":"28","author":"Bailey","year":"2006","journal-title":"J Early Interv"},{"issue":"1","key":"2021120906475827800_B33","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1177\/1053815111399441","article-title":"Development and psychometric validation of the Family Outcomes Survey-revised.","volume":"33","author":"Bailey","year":"2011","journal-title":"J Early Interv"},{"issue":"3","key":"2021120906475827800_B34","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1177\/1053815111425929","article-title":"Family outcomes of early intervention: families\u2019 perceptions of need, services, and outcomes.","volume":"33","author":"Epley","year":"2011","journal-title":"J Early Interv"},{"key":"2021120906475827800_B35","doi-asserted-by":"crossref","first-page":"648","DOI":"10.1093\/jpepsy\/jsn032","article-title":"Supporting family adaptation to pre-symptomatic and \"untreatable\" conditions in an era of expanded newborn screening.","volume":"34","author":"Bailey","year":"2009","journal-title":"Journal of Pediatric Psychology"},{"key":"2021120906475827800_B36","first-page":"151","volume-title":"A Developmental Systems Approach to Early Intervention","author":"Bailey","year":"2005"},{"issue":"6","key":"2021120906475827800_B37","doi-asserted-by":"crossref","first-page":"447","DOI":"10.1352\/1944-7558-115.6.447","article-title":"Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome.","volume":"115","author":"Bailey","year":"2010","journal-title":"Am J Intellect Dev Disabil"},{"issue":"1","key":"2021120906475827800_B38","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1352\/1944-7558-119.1.33","article-title":"Modeling family adaptation to fragile X syndrome.","volume":"119","author":"Raspa","year":"2014","journal-title":"Am J Intellect Dev Disabil"},{"issue":"3","key":"2021120906475827800_B39","doi-asserted-by":"crossref","first-page":"768","DOI":"10.1007\/s10803-016-2999-7","article-title":"The longitudinal effects of parenting on adaptive behavior in children with fragile X syndrome.","volume":"47","author":"Warren","year":"2017","journal-title":"J Autism Dev Disord"},{"issue":"2","key":"2021120906475827800_B40","doi-asserted-by":"crossref","first-page":"92","DOI":"10.1111\/jppi.12072","article-title":"Stress and resilience for parents of children with intellectual and developmental disabilities: a review of key factors and recommendations for practitioners.","volume":"11","author":"Peer","year":"2014","journal-title":"J Policy Pract Intellect Disabil"},{"issue":"4","key":"2021120906475827800_B41","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1002\/mrdd.20175","article-title":"Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: a meta-analysis.","volume":"13","author":"Singer","year":"2007","journal-title":"Ment Retard Dev Disabil Res Rev"},{"issue":"2","key":"2021120906475827800_B42","doi-asserted-by":"crossref","first-page":"e46","DOI":"10.2196\/mhealth.4202","article-title":"A platform to build mobile health apps: the Personal Health Intervention Toolkit (PHIT).","volume":"3","author":"Eckhoff","year":"2015","journal-title":"JMIR Mhealth Uhealth"},{"key":"2021120906475827800_B43","first-page":"35","article-title":"A personal health information toolkit for health intervention research.","volume":"199","author":"Kizakevich","year":"2014","journal-title":"Stud Health Technol Inform"}],"container-title":["Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/141\/Supplement_2\/S180\/902918\/peds_20172038g.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/141\/Supplement_2\/S180\/902918\/peds_20172038g.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,12,10]],"date-time":"2021-12-10T01:07:25Z","timestamp":1639098445000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.aap.org\/pediatrics\/article\/141\/Supplement_2\/S180\/34315\/The-Likely-Impact-of-Congenital-Zika-Syndrome-on"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,2,1]]},"references-count":43,"journal-issue":{"issue":"Supplement_2","published-online":{"date-parts":[[2018,2,1]]},"published-print":{"date-parts":[[2018,2,1]]}},"URL":"https:\/\/doi.org\/10.1542\/peds.2017-2038g","relation":{},"ISSN":["0031-4005","1098-4275"],"issn-type":[{"value":"0031-4005","type":"print"},{"value":"1098-4275","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,2,1]]}}}