Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome

Detalhes bibliográficos
Autor(a) principal: Duttine, Antony
Data de Publicação: 2022
Outros Autores: Smythe, Tracey, Sá, Miriam Ribeiro Calheiros de, Ferrite, Silvia, Moreira, Maria Elizabeth, 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/55043
Resumo: London School of Hygiene & Tropical Medicine. International Centre for Evidence in Disability. London, UK.
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spelling Duttine, AntonySmythe, TraceySá, Miriam Ribeiro Calheiros deFerrite, SilviaMoreira, Maria ElizabethKuper, Hannah2022-10-07T12:56:16Z2022-10-07T12:56:16Z2022DUTTINE, Antony et al. Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome. Wellcome Open Research, v. 7, n. 77, p. 1-14, 2022.2398-502Xhttps://www.arca.fiocruz.br/handle/icict/5504310.12688/wellcomeopenres.17419.12398-502XengTaylor and FrancisAssessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndromeinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleLondon School of Hygiene & Tropical Medicine. International Centre for Evidence in Disability. London, UK.London School of Hygiene & Tropical Medicine. International Centre for Evidence in Disability. London, UK.Fundação Oswaldo Cruz. Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira. Rio de Janeiro, RJ, Brasil.Universidade Federal da Bahia. Instituto de Ciências da Saúde. Departamento de Fonoaudiologia. Salvador, BA, Brasil.Fundação Oswaldo Cruz. Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira. Rio de Janeiro, RJ, Brasil.London School of Hygiene & Tropical Medicine. International Centre for Evidence in Disability. London, UK.Background: 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. Methods: 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 et al. to consider whether Juntos ‘could work’. 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. Results: 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. Conclusions: The programme showed feasibility according to Bowen’s 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.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/55043/1/license.txt5a560609d32a3863062d77ff32785d58MD51ORIGINALAssessment of the feasibility of Juntos - A support programme for families of children affected by Congenital Zika Syndrome.pdfAssessment of the feasibility of Juntos - A support programme for families of children affected by Congenital Zika Syndrome.pdfapplication/pdf575900https://www.arca.fiocruz.br/bitstream/icict/55043/2/Assessment%20of%20the%20feasibility%20of%20Juntos%20-%20A%20support%20programme%20for%20families%20of%20children%20affected%20by%20Congenital%20Zika%20Syndrome.pdf79e531f69aff8c5a682fe28e32850204MD52icict/550432022-10-07 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dc.title.en_US.fl_str_mv Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
title Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
spellingShingle Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
Duttine, Antony
Zika
Disability
Microcephaly
Early intervention
Congenital Zika Syndrome
Family
Caregiver
Brazil
title_short Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
title_full Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
title_fullStr Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
title_full_unstemmed Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
title_sort Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome
author Duttine, Antony
author_facet Duttine, Antony
Smythe, Tracey
Sá, Miriam Ribeiro Calheiros de
Ferrite, Silvia
Moreira, Maria Elizabeth
Kuper, Hannah
author_role author
author2 Smythe, Tracey
Sá, Miriam Ribeiro Calheiros de
Ferrite, Silvia
Moreira, Maria Elizabeth
Kuper, Hannah
author2_role author
author
author
author
author
dc.contributor.author.fl_str_mv Duttine, Antony
Smythe, Tracey
Sá, Miriam Ribeiro Calheiros de
Ferrite, Silvia
Moreira, Maria Elizabeth
Kuper, Hannah
dc.subject.en.en_US.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. International Centre for Evidence in Disability. London, UK.
publishDate 2022
dc.date.accessioned.fl_str_mv 2022-10-07T12:56:16Z
dc.date.available.fl_str_mv 2022-10-07T12:56:16Z
dc.date.issued.fl_str_mv 2022
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. Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome. Wellcome Open Research, v. 7, n. 77, p. 1-14, 2022.
dc.identifier.uri.fl_str_mv https://www.arca.fiocruz.br/handle/icict/55043
dc.identifier.issn.en_US.fl_str_mv 2398-502X
dc.identifier.doi.none.fl_str_mv 10.12688/wellcomeopenres.17419.1
dc.identifier.eissn.none.fl_str_mv 2398-502X
identifier_str_mv DUTTINE, Antony et al. Assessment of the feasibility of Juntos: a support programme for families of children affected by congenital Zika syndrome. Wellcome Open Research, v. 7, n. 77, p. 1-14, 2022.
2398-502X
10.12688/wellcomeopenres.17419.1
url https://www.arca.fiocruz.br/handle/icict/55043
dc.language.iso.fl_str_mv eng
language eng
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv Taylor and Francis
publisher.none.fl_str_mv Taylor and Francis
dc.source.none.fl_str_mv reponame:Repositório Institucional da FIOCRUZ (ARCA)
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
instname_str Fundação Oswaldo Cruz (FIOCRUZ)
instacron_str FIOCRUZ
institution FIOCRUZ
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collection Repositório Institucional da FIOCRUZ (ARCA)
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