{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T05:12:26Z","timestamp":1772169146641,"version":"3.50.1"},"reference-count":31,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2019,5,13]],"date-time":"2019-05-13T00:00:00Z","timestamp":1557705600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["206719"],"award-info":[{"award-number":["206719"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["wellcomeopenresearch.org"],"crossmark-restriction":false},"short-container-title":["Wellcome Open Res"],"abstract":"<ns4:p>The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services.<\/ns4:p>\n                  <ns4:p>This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers.<\/ns4:p>\n                  <ns4:p>\n                    The research project contains four components:\n                    <ns4:list list-type=\"order\">\n                      <ns4:list-item>\n                        <ns4:p>Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study.<\/ns4:p>\n                      <\/ns4:list-item>\n                      <ns4:list-item>\n                        <ns4:p>Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts.<\/ns4:p>\n                      <\/ns4:list-item>\n                      <ns4:list-item>\n                        <ns4:p>Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador.<\/ns4:p>\n                      <\/ns4:list-item>\n                      <ns4:list-item>\n                        <ns4:p>Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.<\/ns4:p>\n                      <\/ns4:list-item>\n                    <\/ns4:list>\n                  <\/ns4:p>","DOI":"10.12688\/wellcomeopenres.15085.1","type":"journal-article","created":{"date-parts":[[2019,5,13]],"date-time":"2019-05-13T10:55:12Z","timestamp":1557744912000},"page":"80","update-policy":"https:\/\/doi.org\/10.12688\/wellcomeopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":15,"title":["Development and assessment of the feasibility of a Zika family support programme: a study protocol"],"prefix":"10.12688","volume":"4","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7186-1591","authenticated-orcid":false,"given":"Antony","family":"Duttine","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3408-7362","authenticated-orcid":false,"given":"Tracey","family":"Smythe","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3972-0377","authenticated-orcid":false,"given":"Miriam Ribiero","family":"Calheiro de S\u00e1","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5344-3751","authenticated-orcid":false,"given":"Silvia","family":"Ferrite","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2034-0294","authenticated-orcid":false,"given":"Maria Elisabeth","family":"Moreira","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8952-0023","authenticated-orcid":false,"given":"Hannah","family":"Kuper","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"2560","published-online":{"date-parts":[[2019,5,13]]},"reference":[{"key":"ref-1","doi-asserted-by":"publisher","first-page":"675-686C","DOI":"10.2471\/BLT.16.171082","article-title":"Zika: the origin and spread of a mosquito-borne virus.","volume":"94","author":"M Kindhauser","year":"2016","journal-title":"Bull World Health Organ."},{"key":"ref-2","doi-asserted-by":"publisher","first-page":"1343-1348","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":"V van der Linden","year":"2016","journal-title":"MMWR Morb Mortal Wkly Rep."},{"key":"ref-3","doi-asserted-by":"publisher","first-page":"1552-63","DOI":"10.1056\/NEJMra1602113","article-title":"Zika Virus.","volume":"374","author":"L Petersen","year":"2016","journal-title":"N Engl J Med."},{"key":"ref-4","article-title":"Fifth meeting of the Emergency Committee under the International Health Regulations (2005) regarding microcephaly, other neurological disorders and Zika virus","year":"2016"},{"key":"ref-5","doi-asserted-by":"publisher","first-page":"1981-7","DOI":"10.1056\/NEJMsr1604338","article-title":"Zika Virus and Birth Defects--Reviewing the Evidence for Causality.","volume":"374","author":"S Rasmussen","year":"2016","journal-title":"N Engl J Med."},{"key":"ref-6","doi-asserted-by":"publisher","first-page":"288-295","DOI":"10.1001\/jamapediatrics.2016.3982","article-title":"Characterizing the Pattern of Anomalies in Congenital Zika Syndrome for Pediatric Clinicians.","volume":"171","author":"C Moore","year":"2017","journal-title":"JAMA Pediatr."},{"key":"ref-7","doi-asserted-by":"publisher","first-page":"e2017473","DOI":"10.5123\/S1679-49742018000200014","article-title":"Congenital syndrome associated with Zika virus infection among live births in Brazil: a description of the distribution of reported and confirmed cases in 2015-2016.","volume":"27","author":"G Franca","year":"2018","journal-title":"Epidemiol Serv Saude."},{"key":"ref-8","doi-asserted-by":"publisher","first-page":"S154-S160","DOI":"10.1542\/peds.2017-2038D","article-title":"Development of Infants With Congenital Zika Syndrome: What Do We Know and What Can We Expect?","volume":"141","author":"A Wheeler","year":"2018","journal-title":"Pediatrics."},{"key":"ref-9","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph15010096","article-title":"The Zika Virus Epidemic in Brazil: From Discovery to Future Implications.","volume":"15","author":"R Lowe","year":"2018","journal-title":"Int J Environ Res Public Health."},{"key":"ref-10","doi-asserted-by":"publisher","first-page":"1089-1099","DOI":"10.15585\/mmwr.mm6641a1","article-title":"Update: Interim Guidance for the Diagnosis, Evaluation, and Management of Infants with Possible Congenital Zika Virus Infection - United States, October 2017.","volume":"66","author":"T Adebanjo","year":"2017","journal-title":"MMWR Morb Mortal Wkly Rep."},{"key":"ref-11","doi-asserted-by":"publisher","first-page":"3297-3302","DOI":"10.1590\/1413-812320152110.16832016","article-title":"Microcephaly and other Zika virus related events: the impact on children, families and health teams.","volume":"21","author":"D Brunoni","year":"2016","journal-title":"Cien Saude Colet."},{"key":"ref-12","doi-asserted-by":"publisher","first-page":"S180-S187","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":"D Bailey","year":"2018","journal-title":"Pediatrics."},{"key":"ref-13","first-page":"275-279","article-title":"Zika Virus (ZIKV), Global Public Health, Disability, and Rehabilitation: Connecting the Dots.","volume":"97","author":"M Landry","year":"2017","journal-title":"Phys Ther."},{"key":"ref-14","doi-asserted-by":"publisher","first-page":"427-33","DOI":"10.1093\/jpepsy\/25.6.427","article-title":"Predictors of stress in mothers of children with cerebral palsy in Bangladesh.","volume":"25","author":"R Mobarak","year":"2000","journal-title":"J Pediatr Psychol."},{"key":"ref-15","doi-asserted-by":"publisher","first-page":"473-475","DOI":"10.1007\/s00737-017-0724-y","article-title":"Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection: a follow-up study during the first year after birth.","volume":"20","author":"S Dos Santos Oliveira","year":"2017","journal-title":"Arch Womens Ment Health."},{"key":"ref-16","doi-asserted-by":"publisher","first-page":"2","DOI":"10.11604\/pamj.2018.30.2.11794","article-title":"Zika Virus infection and microcephaly: anxiety burden for women.","volume":"30","author":"I Ebuenyi","year":"2018","journal-title":"Pan Afr Med J."},{"key":"ref-17","doi-asserted-by":"publisher","first-page":"S991-S994","DOI":"10.1093\/infdis\/jix492","article-title":"Zika Virus and Future Research Directions.","volume":"216","author":"E Erbelding","year":"2017","journal-title":"J Infect Dis."},{"key":"ref-18","doi-asserted-by":"publisher","first-page":"413-426","DOI":"10.1111\/jar.12539","article-title":"A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability.","volume":"32","author":"S Rodrigues","year":"2019","journal-title":"J Appl Res Intellect Disabil."},{"key":"ref-19","article-title":"HEALTH CARE NETWORKS AND THE ZIKA VIRUS EPIDEMIC: Evaluation of Maternal and Child Care Management in the State of Maranh\u00e3o, 2017","author":"F SOUSA","year":"2018"},{"key":"ref-20","doi-asserted-by":"publisher","first-page":"e000862","DOI":"10.1136\/bmjgh-2018-000862","article-title":"What explains the lacklustre response to Zika in Brazil? Exploring institutional, economic and health system context.","volume":"3","author":"E G\u00f3mez","year":"2018","journal-title":"BMJ Glob Health."},{"key":"ref-21","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph15030514","article-title":"Reflections on Health Promotion and Disability in Low and Middle-Income Countries: Case Study of Parent-Support Programmes for Children with Congenital Zika Syndrome.","volume":"15","author":"H Kuper","year":"2018","journal-title":"Int J Environ Res Public Health."},{"key":"ref-22","article-title":"Getting to Know Cerebral Palsy: Working with parent groups \u2013 a training resource for facilitators, parents, caregivers, and persons with cerebral palsy","year":"2011"},{"key":"ref-23","doi-asserted-by":"publisher","first-page":"e0202096","DOI":"10.1371\/journal.pone.0202096","article-title":"Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana.","volume":"13","author":"M Zuurmond","year":"2018","journal-title":"PLoS One."},{"key":"ref-24","doi-asserted-by":"publisher","DOI":"10.13140\/RG.2.2.30924.10881","article-title":"DEVELOPING AN EARLY INTERVENTION PROGRAMME FOR CHILDREN AT HIGH-RISK OF NEURODEVELOPMENTAL IMPAIRMENT IN UGANDA","author":"K Martin","year":"2017"},{"key":"ref-25","doi-asserted-by":"publisher","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; peer review: 1 approved].","volume":"3","author":"H Kuper","year":"2018","journal-title":"Wellcome Open Res."},{"key":"ref-26","article-title":"Consent forms (interviews and questionnaires)","author":"A Duttine","year":"2019"},{"key":"ref-27","article-title":"Qualitative interview questions for participants, facilitators and key informants","author":"A Duttine","year":"2019"},{"key":"ref-28","doi-asserted-by":"publisher","first-page":"452-7","DOI":"10.1016\/j.amepre.2009.02.002","article-title":"How we design feasibility studies.","volume":"36","author":"D Bowen","year":"2009","journal-title":"Am J Prev Med."},{"key":"ref-29","article-title":"Pre and post questionnaires","author":"A Duttine","year":"2019"},{"key":"ref-30","doi-asserted-by":"publisher","first-page":"126-39","DOI":"10.1097\/00005650-199902000-00003","article-title":"The PedsQL: measurement model for the pediatric quality of life inventory.","volume":"37","author":"J Varni","year":"1999","journal-title":"Med Care."},{"key":"ref-31","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1186\/1477-7525-6-35","article-title":"The pediatric quality of life inventory (PedsQL) family impact module: reliability and validity of the Brazilian version.","volume":"6","author":"A Scarpelli","year":"2008","journal-title":"Health Qual Life Outcomes."}],"container-title":["Wellcome Open Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1\/pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1\/iparadigms","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,9,21]],"date-time":"2019-09-21T17:42:09Z","timestamp":1569087729000},"score":1,"resource":{"primary":{"URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,5,13]]},"references-count":31,"URL":"https:\/\/doi.org\/10.12688\/wellcomeopenres.15085.1","relation":{"has-review":[{"id-type":"doi","id":"10.21956\/wellcomeopenres.16458.r35510","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.16458.r35511","asserted-by":"subject"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.16458.r35511","asserted-by":"object"},{"id-type":"doi","id":"10.21956\/wellcomeopenres.16458.r35510","asserted-by":"object"}]},"ISSN":["2398-502X"],"issn-type":[{"value":"2398-502X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,5,13]]},"assertion":[{"value":"Indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1#article-reports","order":0,"name":"referee-status","label":"Referee status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.21956\/wellcomeopenres.16458.r35510, Michel D. Landry, Duke Global Health Institute (DGHI), Duke University, Durham, NC, USA, 20 May 2019, version 1, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1#referee-response-35510","order":0,"name":"referee-response-35510","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.21956\/wellcomeopenres.16458.r35511, Michael J. Griffiths, Institute of Infection and Global Health, University of Liverpool, Liverpool, UK, 28 Jun 2019, version 1, indexed","URL":"https:\/\/wellcomeopenresearch.org\/articles\/4-80\/v1#referee-response-35511","order":1,"name":"referee-response-35511","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"Funding for this study was provided by Wellcome Trust and DFID (grant 206719). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":2,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}