Feasibility of an adapted participatory group programme for caregivers of children with complex neurodisability in the United Kingdom: Results from the Encompass-2 study

Introduction"Encompass" is a participatory group-based intervention originating from low- and middle-income countries, co-developed with parents and professionals to enhance the wellbeing, health literacy and empowerment of caregivers of young children with complex neurodisability. We aimed to assess feasibility and acceptability of a) intervention delivery in two socially deprived United Kingdom (UK) urban areas and b) evaluation methods including data collection on programme outcomes and costs. MethodsWe conducted a mixed-methods pilot and feasibility study with caregivers of children under five years with complex neurodisability. Feasibility and acceptability of intervention delivery were assessed based on recruitment rates, group attendance, fidelity checklists and qualitative interviews with caregivers and facilitators. Feasibility and acceptability of evaluation methods were 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, red) to determine whether a larger scale evaluation was warranted. ResultsEight 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. ConclusionsOur 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. Patient or Public ContributionCaregivers 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.