Ignite Creation Date:
2024-05-06 @ 8:16 PM
Last Modification Date:
2024-10-26 @ 3:23 PM
Study NCT ID:
NCT06310681
Status:
NOT_YET_RECRUITING
Last Update Posted:
2024-03-15
First Post:
2024-02-27
Brief Title:
Pilot Testing of a Co-adapted Group Programme for ParentsCarers of Children With Complex Neurodisability
Sponsor:
City University of London
Organization:
City University of London
Study Overview
Official Title:
A Co-adapted Community-based Participatory Group Programme for ParentsCarers of Children With Complex Neurodisability ENCOMPASS A Pilot and Feasibility Study
Status:
NOT_YET_RECRUITING
Status Verified Date:
2024-03
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
ENCOMPASS
Brief Summary:
The goal of this pilot feasibility study is to test a co-adapted community-based group programme Encompass with parentscarers 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 parentscarers 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 parentcarer participants will include
Attending ten Encompass parentcarer 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
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 parentscarers 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 parentcarer participants will include
Attending ten Encompass parentcarer 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
Parentscarers 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 parentscarers of children under 5 years with complex neurodisability in the UK The investigators aim to recruit 20 parentscarers of children from two NHS trusts in England serving urban areas where there is high social deprivation and ethnic diversity Recruited parentscarers 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 parentscarers 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 parentcarer greatest needs and goals questionnaire Post-intervention semi-structured interviews will be conducted with parentscarers 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 parentscarers 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 parentscarers in navigating community health systems
Parentscarers 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 parentscarers of children under 5 years with complex neurodisability in the UK The investigators aim to recruit 20 parentscarers of children from two NHS trusts in England serving urban areas where there is high social deprivation and ethnic diversity Recruited parentscarers 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 parentscarers 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 parentcarer greatest needs and goals questionnaire Post-intervention semi-structured interviews will be conducted with parentscarers 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 parentscarers 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 parentscarers in navigating community health systems
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None