{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T05:11:17Z","timestamp":1772169077753,"version":"3.50.1"},"reference-count":32,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2022,3,4]],"date-time":"2022-03-04T00:00:00Z","timestamp":1646352000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["206719"],"award-info":[{"award-number":["206719"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"crossref","award":["212156"],"award-info":[{"award-number":["212156"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["wellcomeopenresearch.org"],"crossmark-restriction":false},"short-container-title":["Wellcome Open Res"],"abstract":"<ns3:p>\n                    <ns3:bold>Background:<\/ns3:bold>\n                    The 2015-16 Zika epidemic resulted in thousands of children born with congenital Zika syndrome (CZS). In Brazil, gaps in the health system often caused parents to be left with insufficient information and support. Consequently, we developed and piloted Juntos - a participatory support programme which aims to improve knowledge, capacities and build support networks for caregivers of children with CZS. \u00a0\n                  <\/ns3:p>\n                  <ns3:p>\n                    <ns3:bold>Methods:<\/ns3:bold>\n                    Six caregiver groups received the programme between August 2017 and June 2018: three in Rio de Janeiro and three in Bahia. We assessed the feasibility of Juntos against six of the eight areas of a feasibility framework described by Bowen\n                    <ns3:italic>et al.<\/ns3:italic>\n                    to consider whether Juntos \u2018could work\u2019. These areas were: acceptability, demand, implementation, practicality, adaptation and limited efficacy. We used mixed methods including: 1) baseline and end-line questionnaires completed by all group participants; 2) in-depth interviews with 18 participants, seven facilitators and three key stakeholders; 3) participant focus group discussions after each session; 4) researchers session observation; and 5) recording programme costs.\u00a0\n                  <\/ns3:p>\n                  <ns3:p>\n                    <ns3:bold>Results:<\/ns3:bold>\n                    37\/48 (77%) enrolled families completed both questionnaires. Acceptability and demand were noted as high, based on participant responses to interview questions, focus group feedback and satisfaction scores. Potential for implementation and practicality were also demonstrated through interviews with facilitators and key stakeholders and analysis of project documents. Two groups included caregivers of children with non-Zika related developmental disabilities, showing potential for adaptability. Self-reported quality of life scores increased in caregivers between baseline and end-line, as did the dimensions of family relationships and daily activities in the Pediatric Quality of Life Inventory (PEDS QL) Family Impact Module, showing limited efficacy. \u00a0\n                  <\/ns3:p>\n                  <ns3:p>\n                    <ns3:bold>Conclusions:<\/ns3:bold>\n                    The programme showed feasibility according to Bowen\u2019s framework. However, further research of scale up, particularly in the areas of integration, expansion and limited efficacy are needed to ascertain if the programme is effective.\n                  <\/ns3:p>","DOI":"10.12688\/wellcomeopenres.17419.1","type":"journal-article","created":{"date-parts":[[2022,3,4]],"date-time":"2022-03-04T09:25:11Z","timestamp":1646385911000},"page":"77","update-policy":"https:\/\/doi.org\/10.12688\/wellcomeopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":10,"title":["Assessment of the feasibility of Juntos: A support programme for families of children affected by Congenital Zika 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Med."},{"key":"ref-4","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-5","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-6","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 Fran\u00e7a","year":"2018","journal-title":"Epidemiol Serv Saude."},{"key":"ref-7","article-title":"Monitoramento dos casos de arboviroses (dengue, chikungunya e zika), SE 1 a 11, 2020; febre amarela 2019\/2020; sarampo: SE 1 a 10, 2020; a\u00e7\u00f5es de enfrentamento da tuberculose em imigrantes e S\u00edndrome cong\u00eanita associada \u00e0 infec\u00e7\u00e3o pelo v\u00edrus Zika: SE 10 2020","year":"2020","journal-title":"Boletins epidemiol\u00f3gicos."},{"key":"ref-8","doi-asserted-by":"publisher","first-page":"e0007768","DOI":"10.1371\/journal.pntd.0007768","article-title":"The association of depression, anxiety, and stress with caring for a child with Congenital Zika Syndrome in Brazil; Results of a cross-sectional study.","volume":"13","author":"H Kuper","year":"2019","journal-title":"PLoS Negl Trop Dis."},{"key":"ref-9","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-10","article-title":"Congenital Zika Syndrome: Implications and Support for Affected Families (a systematic review of the literature).","author":"A Collins","year":"2017"},{"key":"ref-11","doi-asserted-by":"publisher","first-page":"914-921","DOI":"10.1111\/dmcn.13797","article-title":"Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life.","volume":"60","author":"S Polack","year":"2018","journal-title":"Dev Med Child Neurol."},{"key":"ref-12","first-page":"320-5","article-title":"Assessment of Family Environment and Needs of Families Who Have Children with Cerebral Palsy.","volume":"61","author":"E Saygi","year":"2015","journal-title":"Turk J Phys Med Rehab."},{"key":"ref-13","doi-asserted-by":"publisher","first-page":"563-71","DOI":"10.1590\/bjpt-rbf.2014.0064","article-title":"Functional priorities reported by parents of children with cerebral palsy: contribution to the pediatric rehabilitation process.","volume":"18","author":"M Brand\u00e3o","year":"2014","journal-title":"Braz J Phys Ther."},{"key":"ref-14","doi-asserted-by":"publisher","first-page":"499-507","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":"M Albuquerque","year":"2019","journal-title":"Health Policy Plan."},{"key":"ref-15","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-16","doi-asserted-by":"publisher","first-page":"514","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-17","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-18","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-19","doi-asserted-by":"publisher","first-page":"3559","DOI":"10.3390\/ijerph17103559","article-title":"Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.","volume":"17","author":"A Duttine","year":"2020","journal-title":"Int J Environ Res Public Health."},{"key":"ref-20","article-title":"Getting to Know Cerebral Palsy.","year":"2011"},{"key":"ref-21","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-22","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","journal-title":"Pediatric Academic Societies (PAS) 2017 Annual Meeting."},{"key":"ref-23","doi-asserted-by":"publisher","first-page":"846-857","DOI":"10.9745\/GHSP-D-20-00018","article-title":"Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil.","volume":"8","author":"A Duttine","year":"2020","journal-title":"Glob Health Sci Pract."},{"key":"ref-24","doi-asserted-by":"publisher","first-page":"80","DOI":"10.12688\/wellcomeopenres.15085.1","article-title":"Development and assessment of the feasibility of a Zika family support programme: a study protocol [version 1; peer review: 2 approved].","volume":"4","author":"A Duttine","year":"2019","journal-title":"Wellcome Open Res."},{"key":"ref-25","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-26","doi-asserted-by":"publisher","first-page":"846-857","DOI":"10.9745\/GHSP-D-20-00018","article-title":"Juntos: a support programme for families impacted by congenital Zika syndrome.","volume":"8","author":"A Duttine","year":"2020","journal-title":"Glob Health Sci Pract."},{"key":"ref-27","doi-asserted-by":"publisher","first-page":"96","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-28","doi-asserted-by":"crossref","DOI":"10.12688\/wellcomeopenres.17419.1","article-title":"Assessment of the feasibility of Juntos: A support programme for families of children affected by Congenital Zika Syndrome","author":"A Duttine","year":"2022"},{"key":"ref-29","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-30","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."},{"key":"ref-31","article-title":"Pattern of human concerns","author":"H Cantril","year":"1965"},{"key":"ref-32","doi-asserted-by":"publisher","first-page":"17-32","DOI":"10.1097\/IYC.0000000000000182","article-title":"Surviving and Thriving: Early Intervention for Neonatal Survivors With Developmental Disability in Uganda.","volume":"34","author":"C Tann","year":"2021","journal-title":"Infants Young Child."}],"container-title":["Wellcome Open 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