An interventional study of "Encompass" group programme in Complex Neurodevelopmental Disorder and Cerebral Palsy, sponsored by City, University of London. Completed at 2 sites in United Kingdom. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-04-09.
Sponsored by City, University of London · Not applicable, Interventional, and Supportive care
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:
The main activities for the parent/carer participants will include:
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.
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.
1,936 studies on the registry are indexed under Cerebral Palsy; 458 are open to participants now.
This study's enrollment of 15 is below the median of 34 across 1,431 interventional studies indexed under Cerebral Palsy.
Browse Cerebral Palsy studies →City, University of London is the lead sponsor of 25 studies on the registry; 1 is open to participants now.
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Parents and carers:
Inclusion Criteria:
Exclusion Criteria:
Parent Facilitator:
Inclusion Criteria:
Exclusion Criteria:
Healthcare Professional Facilitator:
Inclusion Criteria:
Exclusion Criteria:
Key Stakeholders:
Inclusion Criteria:
Exclusion Criteria:
None
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
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.
Time frame: 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
Time frame: Before the groups commence, 3 months
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
Time frame: 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
Time frame: End of each group, 6 months
Family Empowerment Scale (FES)
The Family Empowerment Scale (FES) is a validated 24-item instrument that measures parents' sense of empowerment across three areas; family, service use and community. It has been used in the ENVISAGE (ENabling VISions And Growing Expectations) parent workshops and aligns with the goals of the 'Encompass' groups which are to empower families to understand their child's diagnosis and how to navigate health systems. A limitation of this tool is that it has mostly been used with a white, US population.
Time frame: First and final groups, 6 months
Power Ladder Question (PLQ)
The Power Ladder Question (PLQ) assesses participants' perceived sense of power and influence over their life. The survey asks "Please imagine a nine-step ladder, where on the bottom, the first step, stand people who are completely without rights, and on the highest step, the ninth, stand those who have a lot of power. On which step are you?". It has been used with diverse groups and allows the participant to choose the domains of power that they value, and interpret the question openly.
Time frame: First and final groups, 6 months
Parent Patient Activation Measure (P-PAM)
Parent patient activation relates to the knowledge, skills, confidence and persistence to manage a child's health care, particularly those with developmental disorders or disabilities. The Parent-Patient Activation Measure (P-PAM) is a validated 13-item tool that measures two factors; 'confidence and knowledge' and 'action and perseverance' . It has been used in a variety of diverse settings, including low income, non-English speaking parents.
Time frame: First and final groups, 6 months
Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS)
The Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) has been widely used to assess wellbeing across a diverse range of public health interventions, populations, and settings. The 14-item scale WEMWBS will be used with 5 response categories that are summed up to provide a single score.
Time frame: First and final groups, 6 months
Parent/carer Quality of Life - EuroQoL-5D-5-level (EQ-5D-5L)
The EuroQoL five-dimension questionnaire is a validated and widely used tool that measures generic quality of life. It has one question for each of the five dimensions (mobility, self-care, usual activities, pain/discomfort and anxiety/depression) with five response options
Time frame: First and final groups, 6 months
Parent/carer Needs and Goals
A questionnaire has been adapted from previous evaluations of Ubuntu interventions. It has two questions and asks parents/carers what their three biggest issues are that they face in everyday life, and what their two main goals are for attending the group.
Time frame: First group, 1 month
Childhood Cost Calculator (C3)
A costing tool for education and early childhood development.
Time frame: End of study, 9 months
This study is completed, as verified in Apr 2026. You cannot join it, but the record below documents what was studied.
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City, University of London