Document resource
Objectives To adapt and pilot the Baby Ubuntu and Ubuntu caregiver support programs (for children with disabilities under 10 years) in an urban Indian clinic.Methods The Baby Ubuntu and Ubuntu programs are well- established, low-cost, community-based interventions to support caregivers of children with complex neuro-disabilities in LMICs. Ten facilitators (nine clinicians and one parent expert with lived experiences of caring for a child with disability) from our clinic were trained in Ubuntu program. Using the WHO-CST adaptation and implementation guide, we adapted these programs for cultural and contextual relevance. We conducted a pilot of the adaptation at our clinic with caregivers of seven children with disabilities.Results Key adaptations to training material: translation into local language (Hindi), addition of culturally appropriate content (icebreakers, disability rights in India, and local toys), and merging of manuals into a single resource (enriched with local stories, images, videos, and caregiver testimonials). Adaptations to implementation for program feasibility and acceptability: incorporating caregivers’ recommendations (scheduling weekly sessions at preferred times), including children in sessions, and an additional home visit. Six caregivers (all university graduates) participated in a post-pilot discussion, highlighting empowerment through peer support and unique value-add of the parent expert’s experiences.Conclusions This pilot demonstrated that adaptation is feasible, culturally relevant, and acceptable in an urban clinical setting with higher caregiver education levels; and deliverable in ways that meet caregivers’ needs. It has strong potential for scale-up in similar urban Indian clinical settings, and generalizability of this adaptation to rural settings needs to be assessed.