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ASSESSMENT OF THE FEASIBILITY OF JUNTOS: A SUPPORT PROGRAMME FOR FAMILIES OF CHILDREN AFFECTED BY CONGENITAL ZIKA SYNDROME
Disability
Microcephaly
Early intervention
Congenital Zika Syndrome
Family
Caregiver
Brazil
Author
Affilliation
London 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.
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.
Abstract
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.
Keywords
ZikaDisability
Microcephaly
Early intervention
Congenital Zika Syndrome
Family
Caregiver
Brazil
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