Supporting Caregivers of Children with Complex Neurodisability in East London, UK

Baby Ubuntu has been adapted for the UK National Health Service (NHS) to support caregivers of children with complex neurodisability in two culturally diverse boroughs of East London. The resulting “Encompass” programme, meaning “to hold” and “to surround” conveys the value of inclusion and suggests support in navigating services through the hidden word of “Compass”. Guided by a co-design process with families and communities, Encompass was shaped to meet local needs while drawing on insights from global experiences. Caregivers in Uganda and East London share common challenges: isolation, mental health struggles, and the majority of care responsibilities falling on mothers. Both contexts benefit from shared storytelling and peer support, which help parents feel understood and less alone.

Encompass places a strong emphasis on caregiver mental health and well-being, demystifies complex medical terminology, and provides practical guidance for schooling and services. The programme is delivered by an NHS health professional and an expert parent, combining professional expertise with lived experience.

“The most significant change after attending the groups is that I realise that I’m not alone. I am not the only parent who has a child with a disability,” shared a caregiver in the UK.

A proof-of-concept study has confirmed the feasibility and acceptability of Encompass, and future plans aim to pilot the programme on a larger scale across multiple NHS sites. By bringing global lessons learned about participatory caregiver programmes to a UK context, Encompass is helping caregivers feel supported, empowered and connected.