Pilot Testing of a Co-adapted Group Programme for Parents/Carers of Children With Complex Neurodisability
NCT06310681 · Status: ACTIVE_NOT_RECRUITING · Phase: NA · Type: INTERVENTIONAL · Enrollment: 28
Last updated 2025-02-14
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.
Conditions
- Complex Neurodevelopmental Disorder
- Cerebral Palsy
Interventions
- 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
Sponsors & Collaborators
-
City, University of London
lead OTHER
Study Design
- Allocation
- NA
- Purpose
- SUPPORTIVE_CARE
- Masking
- NONE
- Model
- SINGLE_GROUP
Eligibility
- Min Age
- 18 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2024-06-06
- Primary Completion
- 2025-03-31
- Completion
- 2025-04-30
Countries
- United Kingdom
Study Locations
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