Empowering parents and children with developmental disabilities

The video above was developed by Medical Aid Films in collaboration with the Juntos team and as reviewed by the London School of Hygiene and Tropical Medicine.

There is a large and growing need to empower and strengthen families of children with disabilities, in order to help them maximise health and well-being of their children, and realise a host of broader needs and rights. In this step, we will consider a parent training programme, which empowers parents and children with developmental disabilities and helps improve their care in the community. This programme in Brazil is an example of an intervention to support parents and children across all aspects discussed throughout this course, including child development, healthcare access, parent support, education and social inclusion.

The programme

‘Juntos’ is built upon ‘Getting to Know Cerebral Palsy’, a training package that was adapted in 2014 by the London School of Hygiene & Tropical Medicine, from an existing parent training programme (Hambisela), developed by the Eastern Cape Branch of Cerebral Palsy Association South Africa. Because congenital Zika syndrome is similar in many ways to Cerebral Palsy and other neurodevelopmental conditions, it was felt that parents of these children could also benefit from this programme.

‘Juntos’ (meaning ‘together’ in Portuguese and Spanish) is a programme for caregivers of children with congenital Zika syndrome established by the London School of Hygiene & Tropical Medicine and FIOCRUZ. It harnesses peer psychosocial support to help improve carers’ skills in caring for their child. It aims to help families and caregivers of children with congenital Zika syndrome to understand their child and to build support networks that will improve the care that their child receives in the community.

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These objectives are achieved through a modular 10 session programme, which offers practical advice for care (e.g. feeding, movement), and which helps the carer understand issues such as early stimulation and disability rights. Each session is 3-4 hours long, held in the local community. The sessions are conducted by two trained facilitators with complementary skills and experiences – one therapist (occupational therapist or physiotherapist) and one mother of a child with congenital Zika syndrome. Both facilitators are ‘experts’ in the area of raising and supporting a child with a disability.

The facilitators and carers work together, and carers learn through sharing their own experiences and realities about topics that are important to them. Each group includes around 10 children and their carers – these are often mothers, but fathers and other family members are also encouraged to take part. The groups are often held in the local community to reduce the travel burden and support the formation of local care networks. Others may be held in a local health facility, school or other convenient place of the group’s choosing.

The Juntos programme contains the following modules:

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The participatory approach adopted in this programme demonstrates the power of community engagement and the importance of empowerment.

Discussion

What do you think of this programme? How has it empowered children with developmental disabilities and their families? Do you see a need for a similar programme in your setting?