Feasibility of an Adapted Participatory Group Programme for Caregivers of Children With Complex Neurodisability in the United Kingdom: Results From the Encompass-2 Study.

Authors

Kirsten Prest, Kirsten Barnicot, Catherine Hurt, Cally J Tann, Michelle Heys, Angela Harden

Published in

Health expectations : an international journal of public participation in health care and health policy. Volume 29. Issue 4. Pages e70767.

Abstract

'Encompass' is a participatory group-based intervention originating from low- and middle-income countries, co-developed with parents and professionals to enhance the well-being, health literacy and empowerment of caregivers of young children with complex neurodisability. We aimed to assess the feasibility and acceptability of (a) intervention delivery in two socially deprived UK urban areas and (b) evaluation methods including data collection on programme outcomes and costs.
We conducted a mixed-methods pilot and feasibility study with caregivers of children under 5 years with complex neurodisability. Feasibility of intervention delivery was assessed based on recruitment rates, group attendance, fidelity checklists and qualitative interviews with caregivers and facilitators. The suitability of evaluation methods was explored through follow-up rates, questionnaire completeness and caregiver feedback on outcome measures. Data relating to implementation at organisational and system levels were explored through interviews with facilitators and key partners. Results were compared to predefined traffic light criteria (green, amber and red) to determine whether a larger scale evaluation was warranted.
Eight caregivers participated in the programme. Fidelity of delivery and follow-up questionnaire completion met green criteria, while recruitment and attendance met amber criteria, indicating that minor adaptations are required before scaling up. Qualitative findings demonstrated high acceptability of the programme among caregivers and facilitators, particularly valuing the co-facilitation model, participatory approach and peer support. Flexible delivery, including online participation and communication support, enhanced accessibility for families with diverse needs. Capturing programme delivery costs was feasible and provided preliminary estimates to inform future economic evaluation.
Our findings provide proof of principle that 'Encompass' can feasibly and acceptably be delivered and evaluated with caregivers of children with complex neurodisability in an ethnically diverse UK community health setting. The findings support progression to a larger scale evaluation, with refinements to recruitment strategies and delivery logistics.
Caregivers with lived experience were central to developing the 'Encompass' programme and this study. Four local mothers of children with complex neurodisability contributed to planning, recruitment and sense-checking the findings.
ClinicalTrials.gov identifier: NCT06310681.

PMID:
42437489
Bibliographic data and abstract were imported from PubMed on 13 Jul 2026.

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