ENCOMPASS
A Co-adapted Community-based Participatory Group Programme for Parents/Carers of Children With Complex Neurodisability (ENCOMPASS): A Pilot and Feasibility Study
Sponsor study identifier
interventional
15
1 country
2
Study Start
June 6, 2024
Actual (reported)Primary Completion
March 1, 2025
Actual (reported)Study Completion
April 1, 2025
Actual (reported)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:
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
April 1, 2025
Actual (reported)Click on a node to explore related trials.
Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
February 27, 2024
Actual (reported)March 15, 2024
Actual (reported)June 6, 2024
Actual (reported)March 1, 2025
Actual (reported)April 1, 2025
Actual (reported)Group Attendance
Green light - More than 80% of parents/carers attend the group for 6+ sessions Amber light - 30-79% of parents/carers attend the group for 6+ sessions Red light - Fewer than 30% attend the group for 6+ sessions Feasibility, acceptability, and process outcome measures will be used. Quantitative data will be collected to assess the Traffic Light criteria. The green light signifies that criteria for progression has been met and a larger evaluation could proceed, the amber light suggests certain amendments need to be made and the red light indicates that the criteria for progression have not been met and researchers should not continue to a trial.
End of each group, 6 months
Recruitment - percentage of eligible participants who consent to take part
Green light - 35% who are eligible consent to participate Amber light - 15-34% who are eligible consent to participate Red light - Less than 15% who are eligible consent to participate
Before the groups commence, 3 months
* 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
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
Barts Health NHS Trust, Children's Occupational Therapy, Mile End Hospital
London, E1 4EH, United Kingdom
East London NHS Foundation Trust, Specialist Children's and Young People's Services
London, E15 4PT, United Kingdom
Prest K, Barnicot K, Hurt C, Tann CJ, Heys M, Harden A. Feasibility of an Adapted Participatory Group Programme for Caregivers of Children With Complex Neurodisability in the United Kingdom: Results From the Encompass-2 Study. Health Expect. 2026 Aug;29(4):e70767. doi: 10.1111/hex.70767.
Prest K, Harden A, Barnicot K, Heys M. A coadapted community-based participatory group programme for parents/carers of children with complex neurodisability (Encompass-2): a pilot and feasibility study protocol. Pilot Feasibility Stud. 2025 May 3;11(1):59. doi: 10.1186/s40814-025-01619-3.
15 participants (actual enrollment reported by the registry).
First Submitted
February 27, 2024
First Posted
March 15, 2024
Study Start
June 6, 2024
Actual (reported)Effects of PEDAL Program With and Without EMS On Mobility And Gait In Children With Cerebral Palsy
Follow-up response rate-self-complete outcomes questionnaire(s)
Green light - 70% or greater response to follow up Amber light - 50-69% response to follow up Red light - Less than 50% response to follow up
Through the groups and 3 months post-groups, approximately 9 months
Fidelity - delivery on items described in the Fidelity Checklist
Green light - 70% or greater score on the checklist Amber light - 50-69% score on the checklist Red light - Less than 50% score on the checklist
End of each group, 6 months
Family Empowerment Scale (FES)
First and final groups, 6 months
Power Ladder Question (PLQ)
First and final groups, 6 months
Parent Patient Activation Measure (P-PAM)
First and final groups, 6 months
Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS)
First and final groups, 6 months
Parent/carer Quality of Life - EuroQoL-5D-5-level (EQ-5D-5L)
First and final groups, 6 months
Contact the study team to confirm eligibility.
Primary Completion
March 1, 2025
Actual (reported)Study Completion
April 1, 2025
Actual (reported)Last Updated
April 9, 2026
Record last verified: 2026-04
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Source: ClinicalTrials.gov.
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