The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study

Abstract

Background: The 2015 – 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the ‘Juntos’ intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver’s knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing ‘Juntos’ in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers between 2017 and 2018. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results: The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.