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

Background: The Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. We aimed to evaluate the feasibility of a 10-week support group, ‘Juntos’, as a community-based intervention for parents of children with congenital Zika syndrome (CZS) in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers. 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: Acceptability and demand for the intervention were high. ‘Juntos’ was largely delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Adaption requirements included additional organisational and social media support. Community health worker training may support integration and the established groups could facilitate programme expansion; however, participants perceived lack of prioritisation as a limitation. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: Acceptability, demand and practicality of ‘Juntos’ is high. Yet implementation is challenged by existing health systems gaps in support of children with CZS.