Abstract
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.
Highlights
Zika virus infection during pregnancy can cause microcephaly and other congenital anomalies[1]
The participatory sessions with 8–10 caregivers are conducted by two trained facilitators: a parent of child with developmental disability (‘expert mother’) and a health professional
Participants Participants were caregivers of children with congenital Zika syndrome (CZS) identified through the database from the Public Health Surveillance System by a search filter for molecular diagnosis of Zika Virus (ZIKV)
Summary
Zika virus infection during pregnancy can cause microcephaly and other congenital anomalies[1]. Our needs analysis in Brazil demonstrated a support programme for families of children with CZS was relevant and needed and a parent group intervention to provide psychosocial support and improve the skills of caregivers to optimally care for their child may fill an important gap in the Zika response[9]. The participatory sessions with 8–10 caregivers are conducted by two trained facilitators: a parent of child with developmental disability (‘expert mother’) and a health professional (physiotherapist, occupational therapist, speech and language therapist or nurse). The therapists and expert parents complete a joint standardised five-day facilitators training programme to prepare them for the delivery of the intervention, which includes practice of how to facilitate small group discussions, how to teach a practical skill, and takes a rights-based adult learning approach to content delivery. The aim of the current study is to evaluate the feasibility of implementation of ‘Juntos’ in the context of Colombia
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