Ubuntu: Improving the lives of children with developmental disabilities

Guest blog by Tracey Smythe, Assistant Professor at the International Centre for Evidence in Disability at London School of Hygiene and Tropical Medicine

At www.ubuntu-hub.org, we develop participatory community-based group interventions to improve the lives of children with developmental disabilities, and their families. We aim to harness peer psychosocial support to help improve caregiver’s skills and confidence in caring for their child. We are a nonprofit research and educational hub based in the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine.

The group programmes are based on ‘Getting to Know Cerebral Palsy’, a modular 10-session programme for children with cerebral palsy. ‘Juntos’ meaning ‘together’ in Portuguese and Spanish was developed in Brazil and replicated in Colombia for children with zika syndrome and other developmental disabilities (such as cerebral palsy, Down syndrome). ‘ABAANA Early Intervention’ is for children under 2 years with developmental delay.

Each session is 3 – 4 hours and 2 trained facilitators (one an ‘expert carer’ a mother of a child with disability, and the other a health care worker) encourage learning together. Facilitators and caregivers work together, and carers learn through sharing their own experiences and realities about topics that are important to them. Each group includes up to 10 children and their caregivers and is held in the local community. Sessions includes ice-breaker activities, practising together and discussion. An emotional support activity is part of every session.

We have recently developed the ‘togetherness and belonging’ module together with families of children with disabilities, health and community workers, disabled persons organisations, researchers and educationalists – it was a great team effort, and is designed to begin to tackle stigma and discrimination at home and in the community. The facilitator materials, manual and reports from our workshops can be found here: https://www.ubuntu-hub.org/additional-modules/

Ubuntu-hub hosts the intervention materials, links to publications and webinars relating to the three caregiver groups, and a community of practice. The community of practice can be joined at: https://www.ubuntu-hub.org/get-involved/ and we’re always interested to hear of your experiences and share ideas!