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”
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”
StatusVoR
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Authors
Prest, Kirsten
Barnicot, Kirsten
Hurt. Catherine
Badenhorst, Frances
Borek, Aleksandra
Whyte, Melanie
Harniess, Phillip
Jannath, Alea
Lassman, Rachel
Morris, Christopher
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Monograph (alternative title)
Date
2025-07-18
Publisher
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International Journal of Environmental Research and Public Health
Issue
7
Volume
22
Pages
Pages
1-26
ISSN
1660-4601
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Access date
2025-07-18
Abstract PL
Abstract EN
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.
Abstract other
Keywords PL
Keywords EN
complex neurodisability
cerebral palsy
child disability
caregivers
family-centred care
community-based interventions
support groups
intervention adaptation
peer support
participatory approach
cerebral palsy
child disability
caregivers
family-centred care
community-based interventions
support groups
intervention adaptation
peer support
participatory approach
Keywords other
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