Adapting a Participatory Group Programme for Caregivers of Children with Complex Neurodisability from Low-, Middle-Income Countries to a High-Income Setting: Moving from “Baby Ubuntu” to “Encompass”
Prest, K., Barnicot, K. 
ORCID: 0000-0001-5083-5135, Hurt, C. , Badenhorst, F., Borek, A., Whyte, M., Harniess, P., Jannath, A., Lassman, R., Morris, C., Osbourne, R., Smythe, T., Tann, C. J., Thomas, K., Wilson, E., Harden, A. ORCID: 0000-0002-8621-5066 & Heys, M. (2025).
Adapting a Participatory Group Programme for Caregivers of Children with Complex Neurodisability from Low-, Middle-Income Countries to a High-Income Setting: Moving from “Baby Ubuntu” to “Encompass”.
International Journal of Environmental Research and Public Health, 22(7),
article number 1144.
doi: 10.3390/ijerph22071144
Abstract
The “Baby Ubuntu” programme is a well-established, low-cost, community-based intervention to support caregivers of children with complex neurodisability, like cerebral palsy, in low- and middle-income country (LMIC) contexts. This process-focused paper describes our utilisation of the ADAPT guidance to adapt “Baby Ubuntu” for use in ethnically and linguistically diverse, and economically deprived urban boroughs in the United Kingdom (UK). The process was guided by an adaptation team, including parents with lived experience, who explored the rationale for the intervention from local perspectives and its fit for this UK community. Through qualitative interviews and co-creation strategies, the perspectives of caregivers and healthcare professionals substantially contributed to the “Encompass” programme theory, drafting the content, and planning the delivery. Ten modules were co-produced with various topics, based on the “Baby Ubuntu” modules, to be co-facilitated by a parent with lived experience and a healthcare professional. The programme is participatory, allowing caregivers to share information, problem solve, and form supportive peer networks. The “Encompass” programme is an example of a “decolonised healthcare innovation”, as it aims to transfer knowledge and solutions developed in low- and middle-income countries to a high-income context like the UK. Piloting of the new programme is underway.
| Publication Type: | Article |
|---|---|
| Additional Information: | © 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
| Publisher Keywords: | complex neurodisability; cerebral palsy; child disability; caregivers; family-centred care; community-based interventions; support groups; intervention adaptation; peer support; participatory approach |
| Subjects: | R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services |
| Departments: | School of Health & Medical Sciences School of Health & Medical Sciences > Department of Global, Public & Population Health & Policy |
| SWORD Depositor: |
Available under License Creative Commons Attribution.
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