Development and assessment of the feasibility of a Zika family support programme: a study protocol

Detalhes bibliográficos
Autor(a) principal: Duttine, Antony
Data de Publicação: 2019
Outros Autores: Smythe, Tracey, Sá, Miriam Ribeiro Calheiro de, Ferrite, Silvia, Moreira, Maria Elisabeth Lopes, Kuper, Hannah
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da FIOCRUZ (ARCA)
Texto Completo: https://www.arca.fiocruz.br/handle/icict/36716
Resumo: London School of Hygiene & Tropical Medicine. London, UK.
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spelling Duttine, AntonySmythe, TraceySá, Miriam Ribeiro Calheiro deFerrite, SilviaMoreira, Maria Elisabeth LopesKuper, Hannah2019-10-25T18:54:39Z2019-10-25T18:54:39Z2019DUTTINE, Antony et al. Development and assessment of the feasibility of a Zika family support programme: a study protocol. Wellcome Open Research, p. 1-13, 2019.2398-502Xhttps://www.arca.fiocruz.br/handle/icict/3671610.12688/wellcomeopenres.15085.1engDevelopment and assessment of the feasibility of a Zika family support programme: a study protocolinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleLondon School of Hygiene & Tropical Medicine. London, UK.London School of Hygiene & Tropical Medicine. London, UK.Fundação Oswaldo Cruz. Instituto Fernandes Figueira. Rio de Janeiro, RJ, Brasil.Federal University of Bahia. Department of Hearing and Speech Sciences. Salvador, BA, Brazil.Fundação Oswaldo Cruz. Instituto Fernandes Figueira. Rio de Janeiro, RJ, Brasil.London School of Hygiene & Tropical Medicine. London, UK.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. 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. The research project contains four components: 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.Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts.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.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.ZikaDisabilityMicrocephalyEarly interventionCongenital Zika syndromeFamilyCaregiverBrazilinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da FIOCRUZ (ARCA)instname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZLICENSElicense.txtlicense.txttext/plain; charset=utf-82991https://www.arca.fiocruz.br/bitstream/icict/36716/1/license.txt5a560609d32a3863062d77ff32785d58MD51ORIGINALDevelopment and assessment of the feasibility of a Zika family support programme - a study protocol.pdfDevelopment and assessment of the feasibility of a Zika family support programme - a study protocol.pdfapplication/pdf567690https://www.arca.fiocruz.br/bitstream/icict/36716/2/Development%20and%20assessment%20of%20the%20feasibility%20of%20a%20Zika%20family%20support%20programme%20-%20a%20study%20protocol.pdf820e0029de1fed37031239a272cb37caMD52TEXTDevelopment and assessment of the feasibility of a Zika family support programme - a study protocol.pdf.txtDevelopment and assessment of the feasibility of a Zika family support programme - 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dc.title.pt_BR.fl_str_mv Development and assessment of the feasibility of a Zika family support programme: a study protocol
title Development and assessment of the feasibility of a Zika family support programme: a study protocol
spellingShingle Development and assessment of the feasibility of a Zika family support programme: a study protocol
Duttine, Antony
Zika
Disability
Microcephaly
Early intervention
Congenital Zika syndrome
Family
Caregiver
Brazil
title_short Development and assessment of the feasibility of a Zika family support programme: a study protocol
title_full Development and assessment of the feasibility of a Zika family support programme: a study protocol
title_fullStr Development and assessment of the feasibility of a Zika family support programme: a study protocol
title_full_unstemmed Development and assessment of the feasibility of a Zika family support programme: a study protocol
title_sort Development and assessment of the feasibility of a Zika family support programme: a study protocol
author Duttine, Antony
author_facet Duttine, Antony
Smythe, Tracey
Sá, Miriam Ribeiro Calheiro de
Ferrite, Silvia
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
author_role author
author2 Smythe, Tracey
Sá, Miriam Ribeiro Calheiro de
Ferrite, Silvia
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
author2_role author
author
author
author
author
dc.contributor.author.fl_str_mv Duttine, Antony
Smythe, Tracey
Sá, Miriam Ribeiro Calheiro de
Ferrite, Silvia
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
dc.subject.en.pt_BR.fl_str_mv Zika
Disability
Microcephaly
Early intervention
Congenital Zika syndrome
Family
Caregiver
Brazil
topic Zika
Disability
Microcephaly
Early intervention
Congenital Zika syndrome
Family
Caregiver
Brazil
description London School of Hygiene & Tropical Medicine. London, UK.
publishDate 2019
dc.date.accessioned.fl_str_mv 2019-10-25T18:54:39Z
dc.date.available.fl_str_mv 2019-10-25T18:54:39Z
dc.date.issued.fl_str_mv 2019
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.citation.fl_str_mv DUTTINE, Antony et al. Development and assessment of the feasibility of a Zika family support programme: a study protocol. Wellcome Open Research, p. 1-13, 2019.
dc.identifier.uri.fl_str_mv https://www.arca.fiocruz.br/handle/icict/36716
dc.identifier.issn.pt_BR.fl_str_mv 2398-502X
dc.identifier.doi.pt_BR.fl_str_mv 10.12688/wellcomeopenres.15085.1
identifier_str_mv DUTTINE, Antony et al. Development and assessment of the feasibility of a Zika family support programme: a study protocol. Wellcome Open Research, p. 1-13, 2019.
2398-502X
10.12688/wellcomeopenres.15085.1
url https://www.arca.fiocruz.br/handle/icict/36716
dc.language.iso.fl_str_mv eng
language eng
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