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”

Kirsten Prest (), Kirsten Barnicot, Catherine Hurt, Frances Badenhorst, Aleksandra Borek, Melanie Whyte, Phillip Harniess, Alea Jannath, Rachel Lassman, Christopher Morris, Rachel Osbourne, Tracey Smythe, Cally J. Tann, Keely Thomas, Emma Wilson, Angela Harden and Michelle Heys
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Kirsten Prest: School of Health and Medical Sciences, City St George’s, University of London, London EC1V 0HB, UK
Kirsten Barnicot: School of Health and Medical Sciences, City St George’s, University of London, London EC1V 0HB, UK
Catherine Hurt: School of Health and Medical Sciences, City St George’s, University of London, London EC1V 0HB, UK
Frances Badenhorst: Occupational Therapy, Barts Health NHS Trust, London E1 4DG, UK
Aleksandra Borek: Institute of Psychology, SWPS University, 53-238 Wroclaw, Poland
Melanie Whyte: Lived Experience Research Partner, London EC1V 0HB, UK
Phillip Harniess: Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne NE7 7XA, UK
Alea Jannath: Lived Experience Research Partner, London EC1V 0HB, UK
Rachel Lassman: London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
Christopher Morris: Peninsula Childhood Disability Research Unit (PenCRU), St. Luke’s Campus, University of Exeter Medical School, Exeter EX1 2HZ, UK
Rachel Osbourne: Lived Experience Research Partner, London EC1V 0HB, UK
Tracey Smythe: London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
Cally J. Tann: London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK
Keely Thomas: Lived Experience Research Partner, London EC1V 0HB, UK
Emma Wilson: Great Ormond Street Institute for Child Health (ICH), University College London, London WC1N 1EH, UK
Angela Harden: School of Health and Medical Sciences, City St George’s, University of London, London EC1V 0HB, UK
Michelle Heys: Specialist Children’s and Young People’s Services, Newham, East London NHS Foundation Trust, London E15 4PT, UK

IJERPH, 2025, vol. 22, issue 7, 1-26

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.

Keywords: complex neurodisability; cerebral palsy; child disability; caregivers; family-centred care; community-based interventions; support groups; intervention adaptation; peer support; participatory approach (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2025
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