NCT06310681

Pilot Testing of a Co-adapted Group Programme for Parents/Carers of Children With Complex Neurodisability

A Co-adapted Community-based Participatory Group Programme for Parents/Carers of Children With Complex Neurodisability (ENCOMPASS): A Pilot and Feasibility Study

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 15 (actual)
• Sponsor: City, University of London · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

The goal of this pilot feasibility study is to test a co-adapted community-based group programme ("Encompass") with parents/carers of children with complex neurodisability under 5 years of age in East London in the UK. The main questions it aims to answer are: * Is it feasible and acceptable to carry out this newly co-adapted programme with two groups of parents/carers of children with complex neurodisability under the age of 5? * Is it feasible to carry out an evaluation of the above programme, which could then inform a protocol for larger scale evaluation? The main activities for the parent/carer participants will include: * Attending ten "Encompass" parent/carer groups * Filling in questionnaires at the start and end of the groups * Attending an interview with the researcher to discuss their experiences The groups will be facilitated by a healthcare professional and a parent with lived experience. They will also be interviewed about their experiences after the groups have been completed.

Detailed description

Background Parents/carers of children with complex neurodisability continue to lack appropriate family-centred care. "Encompass" is a community-based group programme that was co-adapted from "Baby Ubuntu" in Uganda. It is an example of a 'decolonised healthcare innovation' as it is a low-cost solution from a low-income country for use in a resource-constrained UK National Health Service (NHS). Methods and analysis The investigators will conduct a mixed methods pilot feasibility study to determine the feasibility and acceptability of delivering and evaluating "Encompass" with parents/carers of children under 5 years with complex neurodisability in the UK. The investigators aim to recruit 20 parents/carers of children from two NHS trusts in England serving urban areas where there is high social deprivation and ethnic diversity. Recruited parents/carers will attend the 10-modular, participatory group programme over a 6-month period. Groups will be facilitated by a trained allied health professional and an 'expert parent' with lived experience. The primary outcomes of interest are the feasibility of delivering and evaluating the programme (recruitment, retention rates, acceptability as perceived by the parents/carers, facilitators and wider key stakeholders), intervention fidelity and participant adherence. Results will be collectively assessed against traffic light criteria. Pre-, post- and follow-up data collection questionnaires will include the Family Empowerment Scale (FES), the Power Ladder Question, the Parent Patient Activation Measure (P-PAM), Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), EuroQoL-5D-5-level (EQ-5D-5L) and parent/carer greatest needs and goals questionnaire. Post-intervention semi-structured interviews will be conducted with parents/carers, facilitators and key stakeholders within the NHS. Discussion Providing family-centred support through a community-based participatory group programme is a potentially affordable and sustainable way for the NHS to improve a range of outcomes for parents/carers of children with complex neurodisability including knowledge, skills and confidence, wellbeing and quality of life. The programme also provides opportunities for peer support and aims to empower parents/carers in navigating community health systems.

Conditions

• Complex Neurodevelopmental Disorder
• Cerebral Palsy

Interventions

Type	Name	Description
BEHAVIORAL	"Encompass" group programme	* Groups will take place over ten modules * They will take place in-person at a local community venue * The groups will be two hours long, with a break for refreshments in the middle. They will take place every fortnight in term-time only over approximately 6 months. * The groups predominantly follow a participatory learning approach and although the facilitators have manuals, the activities tend to include some imparting of information, key points for discussion, examples from other settings and activities for the group to practice. * They are run by two facilitators - one parent with lived experience and one healthcare professional

Timeline

• Start date: 2024-06-06
• Primary completion: 2025-03-01
• Completion: 2025-04-01
• First posted: 2024-03-15
• Last updated: 2026-04-09

Locations

2 sites across 1 country: United Kingdom