{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T11:29:09Z","timestamp":1785151749050,"version":"3.55.0"},"reference-count":37,"publisher":"MDPI AG","issue":"10","license":[{"start":{"date-parts":[[2020,5,19]],"date-time":"2020-05-19T00:00:00Z","timestamp":1589846400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["206719\/Z\/17\/Z"],"award-info":[{"award-number":["206719\/Z\/17\/Z"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.<\/jats:p>","DOI":"10.3390\/ijerph17103559","type":"journal-article","created":{"date-parts":[[2020,5,20]],"date-time":"2020-05-20T02:48:24Z","timestamp":1589942904000},"page":"3559","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":32,"title":["Congenital Zika Syndrome\u2014Assessing the Need for a Family Support Programme in Brazil"],"prefix":"10.3390","volume":"17","author":[{"given":"Antony","family":"Duttine","sequence":"first","affiliation":[{"name":"International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene &amp; Tropical Medicine, London WC1E 7HT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3408-7362","authenticated-orcid":false,"given":"Tracey","family":"Smythe","sequence":"additional","affiliation":[{"name":"International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene &amp; Tropical Medicine, London WC1E 7HT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M\u00edriam","family":"Ribiero Calheiro de S\u00e1","sequence":"additional","affiliation":[{"name":"Instituto Nacional de Sa\u00fade da Mulher, da Crian\u00e7a e do Adolescente Fernandes Figueira, Rio de Janeiro 22250-020, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5344-3751","authenticated-orcid":false,"given":"Silvia","family":"Ferrite","sequence":"additional","affiliation":[{"name":"Department of Speech and Hearing Sciences, Institute of Health Sciences, Federal University of Bahia, Salvador 40110-902, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0347-0126","authenticated-orcid":false,"given":"Maria","family":"Zuurmond","sequence":"additional","affiliation":[{"name":"International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene &amp; Tropical Medicine, London WC1E 7HT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2034-0294","authenticated-orcid":false,"given":"Maria Elisabeth","family":"Moreira","sequence":"additional","affiliation":[{"name":"Instituto Nacional de Sa\u00fade da Mulher, da Crian\u00e7a e do Adolescente Fernandes Figueira, Rio de Janeiro 22250-020, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Collins","sequence":"additional","affiliation":[{"name":"International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene &amp; Tropical Medicine, London WC1E 7HT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Milner","sequence":"additional","affiliation":[{"name":"Murdoch Children\u2019s Research Institute and Department of Paediatrics, University of Melbourne, Parkville, Victoria 3052, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Kuper","sequence":"additional","affiliation":[{"name":"International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene &amp; Tropical Medicine, London WC1E 7HT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2020,5,19]]},"reference":[{"key":"ref_1","unstructured":"Pan American Health Organization (2017). Zika-Epidemiological Update. Epidemiological Alerts and Updates, Pan American Health Organization."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"259","DOI":"10.1590\/0037-8682-0247-2018","article-title":"Has the threat of Zika virus outbreaks come to an end?","volume":"51","author":"Figueiredo","year":"2018","journal-title":"Rev. Soc. Bras. Med. Trop."},{"key":"ref_3","unstructured":"Pan American Health Organization (2020, February 12). Cases of Zika Virus Disease by Country or Territory. Available online: http:\/\/www.paho.org\/data\/index.php\/en\/?option=com_content&view=article&id=524:zika-weekly-en&Itemid=352."},{"key":"ref_4","first-page":"e2017473","article-title":"S\u00edndrome cong\u00eanita associada \u00e0 infec\u00e7\u00e3o pelo v\u00edrus Zika em nascidos vivos no Brasil: Descri\u00e7\u00e3o da distribui\u00e7\u00e3o dos casos notificados e confirmados em 2015\u20132016","volume":"27","author":"Pedi","year":"2018","journal-title":"Epidemiol. Serv. Saude"},{"key":"ref_5","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."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1016\/j.pediatrneurol.2018.11.003","article-title":"Neurological Complications of Congenital Zika Virus Infection","volume":"91","author":"Marques","year":"2018","journal-title":"Pediatr. Neurol."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1111\/j.1469-8749.2007.tb12610.x","article-title":"A report: The definition and classification of cerebral palsy April 2006","volume":"49","author":"Rosenbaum","year":"2007","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"887","DOI":"10.1212\/WNL.0b013e3181b783f7","article-title":"Practice parameter: Evaluation of the child with microcephaly (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child. Neurology Society","volume":"73","author":"Ashwal","year":"2009","journal-title":"Neurology"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"S167","DOI":"10.1542\/peds.2017-2038F","article-title":"Motor Abnormalities and Epilepsy in Infants and Children With Evidence of Congenital Zika Virus Infection","volume":"141","author":"Pessoa","year":"2018","journal-title":"Pediatrics"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"472","DOI":"10.1177\/0883073819840449","article-title":"Genetic or Other Causation Should Not Change the Clinical Diagnosis of Cerebral Palsy","volume":"34","author":"MacLennan","year":"2019","journal-title":"J. Child Neurol."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"919","DOI":"10.1016\/S0140-6736(16)00545-6","article-title":"Zika virus and microcephaly in Brazil: A scientific agenda","volume":"387","author":"Barreto","year":"2016","journal-title":"Lancet"},{"key":"ref_12","unstructured":"Cerebral Palsy Association (Eastern Cape) (2020, May 03). Hambisela. Available online: https:\/\/www.cerebralpalsy.org.za\/hambisela."},{"key":"ref_13","doi-asserted-by":"crossref","unstructured":"Salomone, E., Pacione, L., Shire, S., Brown, F.L., Reichow, B., and Servili, C. (2019). Development of the WHO Caregiver Skills Training Program for Developmental Disorders or Delays. Front. Psychol., 10.","DOI":"10.3389\/fpsyt.2019.00769"},{"key":"ref_14","unstructured":"International Centre for Evidence in Disability (2020, January 20). Getting to Know Cerebral Palsy. Available online: http:\/\/disabilitycentre.lshtm.ac.uk\/key-publications\/getting-to-know-cerebral-palsy\/."},{"key":"ref_15","doi-asserted-by":"crossref","unstructured":"Zuurmond, M., O\u2019Banion, D., Gladstone, M., Carsamar, S., Kerac, M., Baltussen, M., Tann, C.J., Nyante, G.G., and Polack, S. (2018). Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLoS ONE, 13.","DOI":"10.1371\/journal.pone.0202096"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"45","DOI":"10.1111\/cch.12618","article-title":"A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers","volume":"45","author":"Zuurmond","year":"2019","journal-title":"Child. Care. Health Dev."},{"key":"ref_17","doi-asserted-by":"crossref","unstructured":"Martin, K., Nalugya, R., Lassman, R., Sewagaba, M., De Silva, H., Musoke, M., Nyangoma, B., Mbabazi, L., Webb, E., and Nampijja, M. (2017, January 6\u20139). Developing an early intervention programme for children at high-risk of neurodevelopmental impairment in Uganda. Proceedings of the PAS 2017 Annual Meeting, San Francisco, CA, USA.","DOI":"10.1136\/archdischild-2017-313087.4"},{"key":"ref_18","unstructured":"Collins, A. (2017). Congenital Zika Syndrome: Implications and Support. for Affected Families (a Systematic Review of the Literature), London School of Hygiene and Tropical Medicine, Bloomsbury."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"552","DOI":"10.1188\/15.ONF.552-554","article-title":"Preferred Reporting Items for Systematic Reviews and Meta-Analyses","volume":"42","author":"Vrabel","year":"2015","journal-title":"Oncol. Nurs. Forum"},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"127","DOI":"10.12688\/wellcomeopenres.14838.1","article-title":"Social and economic impacts of congenital Zika syndrome in Brazil: Study protocol and rationale for a mixed-methods study [version 1; referees: 1 approved]","volume":"3","author":"Kuper","year":"2018","journal-title":"Wellcome Open Res."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"1149","DOI":"10.1007\/s00737-016-0654-0","article-title":"Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection","volume":"19","author":"Oliveira","year":"2016","journal-title":"Arch. Womens Ment. Health"},{"key":"ref_22","doi-asserted-by":"crossref","unstructured":"Collucci, C. (2016). Babies with microcephaly in Brazil are struggling to access care. BMJ, 355.","DOI":"10.1136\/bmj.i6157"},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1097\/DBP.0000000000000382","article-title":"Congenital Zika Virus Infection","volume":"38","author":"Reilly","year":"2017","journal-title":"J. Dev. Behav. Pediatr."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"525","DOI":"10.2105\/AJPH.2017.303658","article-title":"Engaging Human Rights in the Response to the Evolving Zika Virus Epidemic","volume":"107","author":"Rasanathan","year":"2017","journal-title":"Am. J. Public Health"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"429","DOI":"10.1080\/02646838.2016.1230369","article-title":"Integrated reproductive health: The Zika virus","volume":"34","author":"Alderdice","year":"2016","journal-title":"J. Reprod. Infant Psychol."},{"key":"ref_26","first-page":"i1226","article-title":"Brazil struggles to cope with Zika epidemic","volume":"352","author":"Hennigan","year":"2016","journal-title":"Stroke Vasc. Neurol."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1097\/IYC.0000000000000084","article-title":"Infants With Congenital Zika Virus Infection","volume":"30","author":"Porter","year":"2017","journal-title":"Infants Young Child."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"320","DOI":"10.5152\/tftrd.2015.70745","article-title":"Assessment of Family Environment and Needs of Families Who Have Children with Cerebral Palsy","volume":"61","author":"Saygi","year":"2015","journal-title":"Turk. J. Phys. Med. Rehabil."},{"key":"ref_29","doi-asserted-by":"crossref","unstructured":"Kuper, H., Moreira, M.E.L., De Ara\u00fajo, T.V.B., Valongueiro, S., Fernandes, S., Pinto, M., and Lyra, T.M. (2019). The association of depression, anxiety, and stress with caring for a child with Congenital Zika Syndrome in Brazil; Results of a cross-sectional study. PLoS Negl. Trop. Dis., 13.","DOI":"10.1371\/journal.pntd.0007768"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"499","DOI":"10.1093\/heapol\/czz059","article-title":"Access to healthcare for children with Congenital Zika Syndrome in Brazil: Perspectives of mothers and health professionals","volume":"34","author":"Albuquerque","year":"2019","journal-title":"Health Policy Plan."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"S180","DOI":"10.1542\/peds.2017-2038G","article-title":"The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services","volume":"141","author":"Bailey","year":"2018","journal-title":"Pediatrics"},{"key":"ref_32","doi-asserted-by":"crossref","unstructured":"Kuper, H., Smythe, T., and Duttine, A. (2018). Reflections on Health Promotion and Disability in Low and Middle-Income Countries: Case Study of Parent-Support Programmes for Children with Congenital Zika Syndrome. Int. J. Environ. Res. Public Health, 15.","DOI":"10.3390\/ijerph15030514"},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"12","DOI":"10.4102\/ajod.v7i0.437","article-title":"Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy","volume":"7","author":"Hohlfeld","year":"2018","journal-title":"Afr. J. Disabil."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1002\/fsn3.788","article-title":"Improving nutritional status of children with Cerebral palsy: A qualitative study of caregiver experiences and community-based training in Ghana","volume":"7","author":"Donkor","year":"2018","journal-title":"Food Sci. Nutr."},{"key":"ref_35","first-page":"202","article-title":"Cerebral Palsy in Children With Congenital Zika Syndrome: A 2-Year Neurodevelopmental Follow-up","volume":"35","author":"Ventura","year":"2019","journal-title":"J. Child Neurol."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"587","DOI":"10.1016\/j.braindev.2019.03.005","article-title":"Clinical and neurodevelopmental features in children with cerebral palsy and probable congenital Zika","volume":"41","author":"Brites","year":"2019","journal-title":"Brain Dev."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"81","DOI":"10.1177\/0883073818811234","article-title":"Children Born With Congenital Zika Syndrome Display Atypical Gross Motor Development and a Higher Risk for Cerebral Palsy","volume":"34","author":"Marques","year":"2018","journal-title":"J. Child Neurol."}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/17\/10\/3559\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T09:30:23Z","timestamp":1760175023000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/17\/10\/3559"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,5,19]]},"references-count":37,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2020,5]]}},"alternative-id":["ijerph17103559"],"URL":"https:\/\/doi.org\/10.3390\/ijerph17103559","relation":{},"ISSN":["1660-4601"],"issn-type":[{"value":"1660-4601","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,5,19]]}}}