Evidence map›Paper›PMID 40724208›Full record

ArticleInternational journal of environmental research and public health2025

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 and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in International journal of environmental research and public health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Kirsten PrestSchool of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.
Kirsten BarnicotSchool of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.
Catherine HurtSchool of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.
Frances BadenhorstOccupational Therapy, Barts Health NHS Trust, London E1 4DG, UK.
Aleksandra BorekInstitute of Psychology, SWPS University, 53-238 Wroclaw, Poland.
Melanie WhyteLived Experience Research Partner, London EC1V 0HB, UK.
Phillip HarniessFaculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne NE7 7XA, UK.
Alea JannathLived Experience Research Partner, London EC1V 0HB, UK.
Rachel LassmanLondon School of Hygiene and Tropical Medicine, London WC1E 7HT, UK.
Christopher MorrisPeninsula Childhood Disability Research Unit (PenCRU), St. Luke's Campus, University of Exeter Medical School, Exeter EX1 2HZ, UK.ORCID 0000-0002-9916-507X
Rachel OsbourneLived Experience Research Partner, London EC1V 0HB, UK.
Tracey SmytheLondon School of Hygiene and Tropical Medicine, London WC1E 7HT, UK.ORCID 0000-0003-3408-7362
Cally J TannLondon School of Hygiene and Tropical Medicine, London WC1E 7HT, UK.ORCID 0000-0003-0131-4952
Keely ThomasLived Experience Research Partner, London EC1V 0HB, UK.
Emma WilsonGreat Ormond Street Institute for Child Health (ICH), University College London, London WC1N 1EH, UK.ORCID 0000-0001-7091-2417
Angela HardenSchool of Health and Medical Sciences, City St George's, University of London, London EC1V 0HB, UK.ORCID 0000-0002-8621-5066
Michelle HeysSpecialist Children's and Young People's Services, Newham, East London NHS Foundation Trust, London E15 4PT, UK.ORCID 0000-0002-1458-505X

Funding

HARP PhD Programme 22/CT/CT/10-07
6 · The paper itself

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.

Indexed as

CaregiversCerebral PalsyChildDeveloped CountriesDeveloping CountriesFemaleHumansInfantParentsUnited Kingdomcaregiverscerebral palsychild disabilitycommunity-based interventionscomplex neurodisabilityfamily-centred careintervention adaptationparticipatory approachpeer supportsupport groups

Identifiers

PMID40724208
PMCPMC12295255

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.