Universal health coverage (UHC) has been adopted by many countries as a national target for 2030. People with disabilities need to be included within efforts towards UHC, as they are a large group making up 15% of the world’s population and are more vulnerable to poor health. UHC focuses both on covering the whole population as well as providing all the services needed and must include an emphasis on health promotion, as well as disease treatment and cure. Health promotion often focusses on tackling individual behaviours, such as encouraging exercise or good nutrition. However, these activities are insufficient to improve health without additional efforts to address poverty and inequality, which are the underlying drivers of poor health. In this article, we identify common challenges, opportunities and examples for health promotion for people with disabilities, looking at both individual behaviour change as well as addressing the drivers of poor health. We present a case study of a carer support programme for parents of children with Congenital Zika Syndrome in Brazil as an example of a holistic programme for health promotion. This programme operates both through improving skills of caregivers to address the health needs of their child and tackling poverty and exclusion.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

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.

We aimed to explore the engagement of fathers in a community-based group intervention (Juntos) for children with congenital Zika syndrome (CZS) and their caregivers in Brazil. Six Juntos groups were facilitated from August 2017 to May 2018. We conducted a qualitative study to evaluate the feasibility and acceptability of the intervention for fathers of children with CZS. Methods included participant observation, focus group discussions, and semi-structured interviews of fathers with a child enrolled in the program. Data collected were transcribed, coded and thematically analyzed to explore father preference for, and beliefs about the intervention and to assess potential barriers and enablers to their involvement. Forty-nine families (61 participants) enrolled, of whom 20% (12/61) were fathers. Seven (58%) fathers attended more than 7 out of 10 sessions. The content of Juntos was found to be acceptable to those fathers who attended. Participation in the group offered fathers the opportunity to share experiences of caring for their child and demonstrate their importance as care agents. Work commitments, and the view of mothers as primary caregivers were barriers to engagement of fathers. Facilitators to engagement included a presentation of clear objectives for fathers’ involvement and the opportunity to learn a practical skill related to caring for their child. A better understanding of the perspectives of fathers is crucial to help increase their involvement in parenting interventions.

Background: The 2015–2016 Zika virus outbreak in Brazil was unprecedented and resulted in the birth of more than 3,000 children with congenital Zika syndrome (CZS). These children experience multiple complex health conditions and have limited services to support them and their family’s needs. Program Development and Piloting: An existing family support program for children with cerebral palsy (Getting to Know Cerebral Palsy) was adapted to the Zika context in Brazil through expert consultation. The program was pilot tested at 2 sites among 6 groups of caregivers (total of 48 families) from August 2017 to June 2018. Group observation and focus group discussions with facilitators and participants at the end of each session informed fast-track learning, which was used to tailor the program for future groups. Fast-track learning—adjusting the intervention in real time based on gathered feedback—was found to be a helpful process to inform and hone the program from its initial concept. Program Description: The intervention, Juntos, is a facilitated participatory group program for caregivers of children who have CZS. The group sessions are cofacilitated by a parent of a child who has CZS and an allied health professional. The group meets for 10 sessions that last 4 hours. Each session includes an icebreaker, activities, and group discussions. Content covers practical information on caring for a child with a developmental disability including that caused by Zika. Psychosocial support forms an important component, and families are guided from the first week to define and develop their own communities of support. Six pilot groups were successfully run in Rio de Janeiro and Greater Salvador, Bahia. The groups gave positive feedback on acceptability and demand. Conclusions: The program has the potential to be an important tool for community health and social support services in South America in response to Zika. The program can also be applied to children with neurodevelopmental disabilities other than those caused by the Zika virus, which could be important in ensuring families of children with CZS are less isolated. Development of Juntos, a community-based family support program for caregivers of children with congenital Zika syndrome, contained innovative approaches such as using mothers as facilitators, fast-track learning, and de-isolation of families affected by Zika. Key Messages A community-based family group program for caregivers of children with congenital Zika syndrome (CZS) was developed based on an existing program for families of children with cerebral palsy and pilot tested in Brazil. Program managers developing group initiatives should consider fast-track learning approaches to adjust their intervention to make it more useful to participants. Clinicians and managers of Zika initiatives should consider that caregivers of children with CZS will likely benefit from the ability to engage and exchange with caregivers of children with other neurodevelopmental disabilities. Program managers delivering community interventions targeting caregivers should consider engaging expert mothers as group cofacilitators. Integrating emotional support activities into groups that address child development is important, and adds value. Resumo em português no final do artigo.

The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services. This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers. The research project contains four components: Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study. Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts. Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador. Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.