Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil.

Tracey Smythe,Monica Matos,Silvia Ferrite,Hannah Kuper,Julia Reis,Antony Duttine,Shelina Visram

doi:10.1371/journal.pone.0238850

Tracey Smythe, Monica Matos + Show 5 more

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https://doi.org/10.1371/journal.pone.0238850

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Abstract

The Zika virus outbreak in Brazil (2015-2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families. This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil. Four facilitators were trained to deliver the 10-week intervention called "Juntos". Two were mothers of a child with CZS ("expert mothers") and two were therapists (speech therapist and physiotherapist). The intervention was delivered to three groups, generally including 8-10 caregivers. Two researchers, who were psychologists, observed the groups and held focus group discussions at the end of each session. They undertook semi-structured interviews post intervention with a purposive sample of caregivers, and with the facilitators. Observation notes were collated and summarised. Transcripts were transcribed and thematically analysed using five elements to assess feasibility: acceptability, demand, implementation, practicality and adaptation. The use of expert mothers as facilitators was considered to be acceptable and there was demand for their role. Their experiential knowledge was viewed as important for sharing and learning, and supporting and encouraging the group. The intervention was delivered with fidelity by the expert mothers. The practicality of the intervention was facilitated by holding the group sessions in the community, providing transport costs to facilitators and participants, paying expert mothers and therapist facilitators equally and supporting the expert mothers through a mentorship programme. Equal payment with the therapist enabled the expert mothers to better facilitate the groups, through increased confidence in the value of their role. Adaptation of the intervention included development of video resources and mentoring guidelines. The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible in similar contexts.

Highlights

Developmental disabilities affect at least 50 million children under the age of 5 years globally, and are a major contributor to child and adult morbidity in low and middle-income countries (LMICs) [1]
The Zika virus outbreak in Brazil (2015–2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS)
This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil

Summary

Introduction

Developmental disabilities affect at least 50 million children under the age of 5 years globally, and are a major contributor to child and adult morbidity in low and middle-income countries (LMICs) [1]. Families play an important role in care for these children, and caregivers of children with disabilities often experience high levels of stress, anxiety, depression, physical exhaustion, and discrimination [3,4,5,6,7,8]. These experiences contribute to decreased quality of life compared to caregivers of non-disabled children, and may result in reduced effectiveness of parenting [9, 10].

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