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^{1

2}, Kirsten Barnicot¹, Catherine Hurt¹, Frances Badenhorst³, Aleksandra Borek⁴, Melanie Whyte⁵, Phillip Harniess^{6

7}, Alea Jannath⁵, Rachel Lassman⁸, Christopher Morris⁷, Rachel Osbourne⁵, Tracey Smythe^{8

9}, Cally J Tann^{8

10

11}, Keely Thomas⁵, Emma Wilson¹², Angela Harden¹, Michelle Heys^{2

12}

Affiliations

¹ School of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.
² Specialist Children's and Young People's Services, Newham, East London NHS Foundation Trust, London E15 4PT, UK.
³ Occupational Therapy, Barts Health NHS Trust, London E1 4DG, UK.
⁴ Institute of Psychology, SWPS University, 53-238 Wroclaw, Poland.
⁵ Lived Experience Research Partner, London EC1V 0HB, UK.
⁶ Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne NE7 7XA, UK.
⁷ Peninsula Childhood Disability Research Unit (PenCRU), St. Luke's Campus, University of Exeter Medical School, Exeter EX1 2HZ, UK.
⁸ London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK.
⁹ Department of Health and Rehabilitation Sciences, Division of Physiotherapy, Stellenbosch University, Cape Town 7602, South Africa.
¹⁰ Disability Research Group, MRC/UVRI & LSHTM Uganda Research Unit, Entebbe P.O. Box 49, Uganda.
¹¹ Neonatal Medicine, University College London Hospitals NHS Trust, London NW1 2BU, UK.
¹² Great Ormond Street Institute for Child Health (ICH), University College London, London WC1N 1EH, UK.

PMID: 40724208
PMCID: PMC12295255
DOI: 10.3390/ijerph22071144

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 et al. Int J Environ Res Public Health. 2025.

. 2025 Jul 18;22(7):1144.

doi: 10.3390/ijerph22071144.

Authors

Affiliations

¹ School of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.
² Specialist Children's and Young People's Services, Newham, East London NHS Foundation Trust, London E15 4PT, UK.
³ Occupational Therapy, Barts Health NHS Trust, London E1 4DG, UK.
⁴ Institute of Psychology, SWPS University, 53-238 Wroclaw, Poland.
⁵ Lived Experience Research Partner, London EC1V 0HB, UK.
⁶ Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne NE7 7XA, UK.
⁷ Peninsula Childhood Disability Research Unit (PenCRU), St. Luke's Campus, University of Exeter Medical School, Exeter EX1 2HZ, UK.
⁸ London School of Hygiene and Tropical Medicine, London WC1E 7HT, UK.
⁹ Department of Health and Rehabilitation Sciences, Division of Physiotherapy, Stellenbosch University, Cape Town 7602, South Africa.
¹⁰ Disability Research Group, MRC/UVRI & LSHTM Uganda Research Unit, Entebbe P.O. Box 49, Uganda.
¹¹ Neonatal Medicine, University College London Hospitals NHS Trust, London NW1 2BU, UK.
¹² Great Ormond Street Institute for Child Health (ICH), University College London, London WC1N 1EH, UK.

PMID: 40724208
PMCID: PMC12295255
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.

Keywords: caregivers; cerebral palsy; child disability; community-based interventions; complex neurodisability; family-centred care; intervention adaptation; participatory approach; peer support; support groups.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

**Figure 1**
An overview of the different studies involved in ‘ENCOMPASS’ [24,25,41].

**Figure 2**
The encompass logic model illustrating the programme theory. The blue-filled boxes indicate the mechanisms of the programme. “Encompass” is briefly described, followed by specific resources offered through the programme. Examples of mechanisms are the sharing of information during the “Encompass” groups (resources) and improved social support, connections, and validation (responses). An example BCT component (and mechanism) is problem-solving within the group, which aims to change the caregiver’s level of confidence and empowerment (the behaviour change/outcome). An example of a MAGI framework component is social validation. Interacting with others in the group in similar situations, caregivers may feel that their own situation is normalised (mechanism), which may have an effect on their wellbeing (an outcome).

**Figure 3**
The “Encompass” programme modules [41].

See this image and copyright information in PMC

References

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1. World Health Organization . International Classification of Functioning, Disability and Health: Children and Youth Version: ICF-CY 2007. World Health Organization; Geneva, Switzerland: 2007. [(accessed on 8 July 2025)]. Available online: https://iris.who.int/handle/10665/43737.
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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"

Affiliations

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"

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical