Adapting a participatory intervention for caregivers of children with complex neurodisability from low resource to high income settings: Moving from “Baby Ubuntu” to “Encompass”
Prest, K. 
ORCID: 0000-0002-1531-0285, Harden, A. ORCID: 0000-0002-8621-5066, Lakhanpaul, M. , Morris, C., Harniess, P., Kuper, H., Wilson, E., Heys, M. & Lewis-Jackson, S.
Adapting a participatory intervention for caregivers of children with complex neurodisability from low resource to high income settings: Moving from “Baby Ubuntu” to “Encompass”.
Poster presented at the 35th European Academy for Childhood Disability Conference, 24-27 May 2023, Ljubljana, Slovenia.
Abstract
Background: “Baby Ubuntu” is a community-based intervention for families of young children with cerebral palsy (CP), that has been developed and tested in low-resource settings globally. The programme provides caregivers with support to increase their skills and confidence to care for their child and promote development, enhancing the impact of early intervention.
Methods: “Baby Ubuntu” is being adapted for use in East London, UK as “Encompass”, in line with the ADAPT and MRC complex intervention development frameworks. Stakeholder engagement was achieved using an advisory group, including the original creators of the intervention, and a Patient and Public (PPI) Involvement group. The adaptation team consisted of the researchers, advisors, and PPI participants. Semi-structured interviews were conducted with 12 caregivers and 6 healthcare providers of children with CP.
Results: Data from the qualitative interviews were analysed and considered by the adaptation team. It was felt that content should include greater emphasis on caregiver mental health and well-being, signposting to third sector organisations, simplifying medical terminology, and educational support. Key programme delivery recommendations included joint facilitation with health specialists and expert parents, considerations of language and cultural diversity, and a blended face-to-face and online delivery. A logic model and adapted manual was drafted based on this feedback.
Conclusions: The adaptation described is one of few examples where an intervention is being adapted from a low-resource to a high-resource setting. “Encompass” has been co-developed with various professionals and parents with lived experience to improve its relevance and impact. Next steps include pilot implementation evaluation.
| Publication Type: | Conference or Workshop Item (Poster) |
|---|---|
| Subjects: | R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services |
| Departments: | School of Health & Psychological Sciences > Healthcare Services Research & Management School of Health & Psychological Sciences > Nursing |
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