Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study.

Background: This study explores the acceptability and feasibility of the use of two different Participatory Visual Methods (Participatory Video and Digital Storytelling) in gathering information on the experiences and perspectives of carers of children with Congenital Zika Syndrome within Colombia. Methods: Participatory Video was used to assess the impact of the Juntos parent-support intervention in the lives of carers, and Digital Storytelling was used to explore the healthcare access for these children. In-depth interviews were conducted to probe participants on their views of these methods. Results: One Participatory Video was produced and four Digital Stories. Of the initial eight caregivers who took part in the Participatory Video process, four completed both the Digital Storytelling process and an in-depth interview about their experiences. The main factors shaping participants' experiences related to the skills learned in making the videos, the feeling of collectiveness and the control over the processes. Conclusions: Women with children with Congenital Zika Syndrome have reported feeling marginalised and misunderstood in daily life. This case study found that Participatory Visual Methods is acceptable and feasible. Moreover, these approaches can support groups in different aspects, such as providing a space to share their stories creatively, hear others in similar situations as them and increase the feeling of community.

Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil.

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.

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

BACKGROUND: 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. OBJECTIVE: This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.

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 need to act together in every way possible: inter-sector action in health and education for children living with the congenital Zika syndrome]. / De toda maneira tem que andar junto: ações intersetoriais entre saúde e educação para crianças vivendo com a síndrome congênita do vírus Zika.

The experience with an intervention program conducted in an educational institution and targeted to families of children with congenital Zika syndrome, which includes multiple disabilities, revealed the challenges and strides with the entry of these families in the school system. This article aimed to explore the findings from a study conducted after the conclusion of an intervention program, using semi-open interviews with professional staff at the institution and the possible contributions towards establishing inter-sector relations aimed at school inclusion of children with disabilities. A change was seen, as a result of the program, in the relationship between the families and the professionals at the educational institution, whereby the families had room to voice their fears and discuss the school's role in the lives of their children with disabilities. The professionals thus came to see the families taking a more active stance. This experience can favor other services and municipalities that seek school inclusion for children and adolescents with disabilities, as well as their social inclusion and that of their families.

Com base na experiência de um programa de intervenção para famílias de crianças com a síndrome congênita do vírus Zika, que inclui múltiplas deficiências, em uma instituição de educação, foram observados os desafios e conquistas encontrados com a entrada dessas famílias no sistema escolar. O objetivo deste artigo foi explorar os achados de pesquisa realizada após a conclusão de um programa de intervenção mediante entrevistas semiabertas com profissionais da instituição, e as possíveis contribuições para a construção das relações intersetoriais visando à inclusão escolar de crianças com deficiência. É possível constatar uma mudança provocada pelo programa na relação entre as famílias e os profissionais da instituição de educação; as famílias tiveram espaço para elaborar seus receios e discutir o papel da escola na vida de crianças com deficiência. Dessa forma, os profissionais passaram a vê-las em uma posição mais ativa. Acredita-se que esta experiência possa favorecer outros serviços e municípios que busquem a inclusão escolar de crianças e adolescentes com deficiência assim como sua inclusão social e de suas famílias.

A partir de la experiencia de un programa de intervención para familias de niños con el síndrome congénito del virus Zika, que incluye múltiples discapacidades, en una institución educativa se observaron los desafíos y logros que se consiguieron tras la entrada de esas familias en el sistema escolar. El objetivo de este artículo fue analizar los resultados de la investigación realizada, tras la conclusión de un programa de intervención, a través de entrevistas semiabiertas con profesionales de la institución, así como las posibles contribuciones en la construcción de relaciones intersectoriales, con el fin de la inclusión escolar de niños con discapacidad. Es posible observar el cambio provocado por el programa en la relación entre las familias y los profesionales de la institución educativa, debido a que las familias contaron con un espacio para exponer sus recelos y discutir el papel de la escuela en la vida de niños con discapacidad. De esta forma, los profesionales pasaron a ser vistos desde una posición más activa. Se cree que esta experiencia puede favorecer a otros servicios y municipios que busquen la inclusión escolar de niños y adolescentes con discapacidad, así como su inclusión social y la de sus familias.

Engagement of Fathers in Parent Group Interventions for Children with Congenital Zika Syndrome: A Qualitative Study.

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.

De toda maneira tem que andar junto: ações intersetoriais entre saúde e educação para crianças vivendo com a síndrome congênita do vírus Zika / The need to act together in every way possible: inter-sector action in health and education for children living with the congenital Zika syndrome / De todas formas deben ir juntas de la mano: acciones intersectoriales entre salud y educación para niños que viven con el síndrome congénito del virus Zika

Resumo: Com base na experiência de um programa de intervenção para famílias de crianças com a síndrome congênita do vírus Zika, que inclui múltiplas deficiências, em uma instituição de educação, foram observados os desafios e conquistas encontrados com a entrada dessas famílias no sistema escolar. O objetivo deste artigo foi explorar os achados de pesquisa realizada após a conclusão de um programa de intervenção mediante entrevistas semiabertas com profissionais da instituição, e as possíveis contribuições para a construção das relações intersetoriais visando à inclusão escolar de crianças com deficiência. É possível constatar uma mudança provocada pelo programa na relação entre as famílias e os profissionais da instituição de educação; as famílias tiveram espaço para elaborar seus receios e discutir o papel da escola na vida de crianças com deficiência. Dessa forma, os profissionais passaram a vê-las em uma posição mais ativa. Acredita-se que esta experiência possa favorecer outros serviços e municípios que busquem a inclusão escolar de crianças e adolescentes com deficiência assim como sua inclusão social e de suas famílias.

Abstract: The experience with an intervention program conducted in an educational institution and targeted to families of children with congenital Zika syndrome, which includes multiple disabilities, revealed the challenges and strides with the entry of these families in the school system. This article aimed to explore the findings from a study conducted after the conclusion of an intervention program, using semi-open interviews with professional staff at the institution and the possible contributions towards establishing inter-sector relations aimed at school inclusion of children with disabilities. A change was seen, as a result of the program, in the relationship between the families and the professionals at the educational institution, whereby the families had room to voice their fears and discuss the school's role in the lives of their children with disabilities. The professionals thus came to see the families taking a more active stance. This experience can favor other services and municipalities that seek school inclusion for children and adolescents with disabilities, as well as their social inclusion and that of their families.

Resumen: A partir de la experiencia de un programa de intervención para familias de niños con el síndrome congénito del virus Zika, que incluye múltiples discapacidades, en una institución educativa se observaron los desafíos y logros que se consiguieron tras la entrada de esas familias en el sistema escolar. El objetivo de este artículo fue analizar los resultados de la investigación realizada, tras la conclusión de un programa de intervención, a través de entrevistas semiabiertas con profesionales de la institución, así como las posibles contribuciones en la construcción de relaciones intersectoriales, con el fin de la inclusión escolar de niños con discapacidad. Es posible observar el cambio provocado por el programa en la relación entre las familias y los profesionales de la institución educativa, debido a que las familias contaron con un espacio para exponer sus recelos y discutir el papel de la escuela en la vida de niños con discapacidad. De esta forma, los profesionales pasaron a ser vistos desde una posición más activa. Se cree que esta experiencia puede favorecer a otros servicios y municipios que busquen la inclusión escolar de niños y adolescentes con discapacidad, así como su inclusión social y la de sus familias.

Reflections on Health Promotion and Disability in Low and Middle-Income Countries: Case Study of Parent-Support Programmes for Children with Congenital Zika Syndrome.

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.