Duttine Antony, Smythe Tracey, Calheiros de Sá Miriam Ribeiro, Ferrite Silvia, Moreira Maria Elizabeth, Kuper Hannah
International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK.
Instituto Fernandes Figueira, Rio de Janeiro, RJ, 22250-020, Brazil.
Wellcome Open Res. 2022 Mar 4;7:77. doi: 10.12688/wellcomeopenres.17419.1. eCollection 2022.
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. 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 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. 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. 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.
2015 - 16年的寨卡疫情导致数千名儿童患有先天性寨卡综合征(CZS)。在巴西,卫生系统的漏洞常常使家长得不到足够的信息和支持。因此,我们开发并试点了“团结”项目——一个参与式支持项目,旨在提高患有CZS儿童的照料者的知识水平和能力,并建立支持网络。2017年8月至2018年6月期间,六个照料者小组接受了该项目:三个在里约热内卢,三个在巴伊亚。我们根据鲍恩描述的可行性框架的八个领域中的六个,评估了“团结”项目的可行性,以考虑该项目是否“可行”。这些领域包括:可接受性、需求、实施、实用性、适应性和有限效果。我们采用了混合方法,包括:1)所有小组参与者填写的基线和终线问卷;2)对18名参与者、7名协调员和3名关键利益相关者进行深入访谈;3)每次课程结束后进行参与者焦点小组讨论;4)研究人员对课程进行观察;5)记录项目成本。48个登记家庭中有37个(77%)完成了两份问卷。根据参与者对访谈问题的回答、焦点小组反馈和满意度得分,可接受性和需求被认为很高。通过与协调员和关键利益相关者的访谈以及对项目文件的分析,也证明了实施的潜力和实用性。有两个小组包括了患有非寨卡相关发育障碍儿童的照料者,显示出适应性潜力。照料者自我报告的生活质量得分在基线和终线之间有所提高,《儿童生活质量量表》(PEDS QL)家庭影响模块中的家庭关系和日常活动维度也是如此,显示出有限效果。根据鲍恩的框架,该项目显示出可行性。然而,需要进一步研究扩大规模,特别是在整合、扩展和有限效果方面,以确定该项目是否有效。